bioethics mediation: a guide to shaping shared solutions, revised and expanded edition

BIOETHICSMEDIATION

A Guide to Shaping Shared Solutıons

Revised and Expanded Edition

Nancy Neveloff Dubler and Carol B. Liebman

A United Hospital Fund Book

Bioethics Mediation

Bioethics MediationA Guide to Shaping Shared Solutions

Revised and Expanded Edition

Nancy Neveloff Dubler and Carol B. Liebman

A United Hospital Fund Book

Vanderbilt University Press

Nashville

© 2011 by Vanderbilt University PressNashville, Tennessee 37235

All rights reservedFirst printing 2011

First edition © 2004 by the United Hospital Fund of New York

This book is printed on acid-free paper made from 30% post-consumer recycled content.

Manufactured in the United States of America

Library of Congress Cataloging-in-Publication Data

Dubler, Nancy N.Bioethics mediation : a guide to shaping shared solutions / Nancy Neveloff Dubler and Carol B. Liebman.—Rev. and expanded ed.p. ; cm.Includes bibliographical references and index.ISBN 978-0-8265-1771-5 (cloth edition : alk. paper)ISBN 978-0-8265-1772-2 (pbk. edition : alk. paper)1. Medical care—Decision making. 2. Mediation. 3. Medical ethics. I. Liebman, Carol B. II. Title. [DNLM: 1. Bioethical Issues. 2. Ethics Consultation. 3. Negotiating. 4. Professional-Family Relations. 5. Role Playing. WB 60]R723.5.D83 2011174.2—dc222010047204

To our grandchildren

Contents

Foreword by James R. Tallon Jr. xi

Preface xiii

Acknowledgments xxiii

PART I

A Framework for Understanding Bioethics Mediation 1

1 Why Mediation? 3

The Angry FAmily AcTing AgAinsT The BesT inTeresT

oF The PATienT: Clarence Corning’s Case 3

The isolATed WiFe AdjusTing To loss: Edward Davidoff’s Case 5

Managing Conflict in the Contemporary Medical Context 7

What Is Bioethics? 8

What Is Clinical Ethics Consultation? 9

Mediation 11

Mediation in Health Care Settings 12

Principled Resolutions 14

The Limitations of Mediation 15

Mediation and Consultation Distinguished 15

The Case for Mediation 16

A dying PATienT And The issue oF scArce resources: Alex Barlow’s Case 17

2 What Makes Bioethics Mediation Unique? 21

The Bioethics Mediator Is Generally Employed by the Hospital 22

The Bioethics Mediator and Members of the Treatment Team

Are Repeat Players 23

The Bioethics Mediator Provides Information, Enforces Norms, and Ensures

That Resolutions Fall within Medical Best-Practice Guidelines 23

Deciding Not to Reach a Resolution Is Not an Option 24

The Playing Field Is Usually Uneven for Patients and Their Families 24

Confidentiality Is Limited to Information Not Relevant to Patient Care 25

Time Is of the Essence 26

Bioethics Mediations Involve Life-and-Death Issues 26

viii Bioethics Mediation: A Guide to Shaping Shared Solutions

Facts Play a Different Role 26

The Person with the Greatest Stake in the Dispute, the Patient,

Is Often Not at the Table 27

There May Be a Sequence of Separate, Prior Meetings

in Addition to the Group Mediation 28

Bioethics Mediations Are Almost Always Multiparty Events 28

The Parties Usually Do Not Sign an Agreement to Mediate 28

The Physical Setting May Not Be in the Mediator’s Control 29

Bioethics Mediators Are Often Involved in Following Up

on Implementation of the Agreement 29

The Clinical Ethics Consultant Enters a Detailed Account

of the Mediation in the Patient’s Chart 29

All Participants in a Bioethics Mediation Have a Common Interest

in the Well-Being of the Patient 30

PART II

A Practical Guide to Bioethics Mediation 31

3 Before You Begin a Bioethics Mediation Program 33

What Bioethics Mediators Should Know 33

Who Should Conduct Bioethics Mediations 37

Who Can Request a Bioethics Mediation and Who Must Participate 40

4 The Stages of Bioethics Mediation 43

Overview of the Stages of Bioethics Mediation 43

hoW The Process Works: Jennifer’s Case 44

Stage 1: Assessment and Preparation 47

Stage 2: Beginning the Mediation 54

Stage 3: Introducing the Patient 57

Stage 4: Presenting and Refining the Medical Facts 58

Stage 5: Gathering Information 61

Stage 6: Problem Solving 66

Stage 7: Resolution 68

Stage 8: Follow-up 71

5 Techniques for Mediating Bioethics Disputes 73

STADA 74

Summarizing 75

Reframing 78

Questioning 79

Looking beyond Labels 81

Dealing with Power and Power Imbalances 81

An “old lAdy” And her TWelve cATs 83

Generating Movement 85

Contents ix

PART III

Chart Notes 93

6 How to Write a Bioethics Mediation Chart Note 95

Introduction 95

The Chart Note 98

Typical Ethical Issues and Analysis 111

PART IV

Case Analyses 131

7 Mediation with a Competent Patient: Mr. Samuels’s Case 133

8 Mediation with a Dysfunctional Family: Mrs. Bates’s Case 141

9 A Complex Mediation with a Large and Involved Family: Mrs. Leonari’s Case 147

PART V

Role-Plays: Practicing Mediation Skills 161

10 Discharge Planning for a Dying Patient: A Role-Play 165

11 An At-Risk Pregnancy: A Role-Play 173

12 HIV and Postsurgical Complications in the ICU: A Role-Play 179

13 Treating the Dying Adolescent: A Role-Play 189

14 She Didn’t Mean It: A Role-Play 197

15 Don’t Tell Mama: A Role-Play 203

PART VI

Annotated Transcripts of Bioethics Mediation Role-Plays 213

16 An At-Risk Pregnancy: A Role-Play Transcript 215

17 HIV and Postsurgical Complications in the ICU: A Role-Play Transcript 227

18 She Didn’t Mean It: A Role-Play Transcript 253

19 Don’t Tell Mama: A Role-Play Transcript 273

x Bioethics Mediation: A Guide to Shaping Shared Solutions

Afterword 291

Appendix 293

Charting the Future: Credentialing, Privileging,

Quality, and Evaluation in Clinical Ethics Consultation

References 311

Suggested Reading on Mediation 315

Index 317

xi

Foreword

The great promise of health reform is better-coordinated and more effective patient care, which fundamentally means more collaboration among health care provid-ers, patients, family caregivers, and payers, over time and in different settings, to achieve the best possible outcomes. Improved information technology will help foster the necessary communication and information sharing this promise de-mands, but it won’t eliminate the difficult and complex choices—and serious dis-agreements—that are inevitable given the complexity of medical care, particularly when it comes to grim prognoses and approaching death. Our American health care system has struggled for decades to develop bet-ter ways to deal with conflict in medical settings. This book by Nancy Neveloff Dubler and Carol B. Liebman is the result of years of deliberation and experi-ence, dating from the 1980s when Nancy Dubler developed one of the nation’s first bioethics consultation services at Montefiore Medical Center in the Bronx. By the early 1990s, Dubler realized that most cases referred to the service were not bioethics dilemmas but conflicts among professionals, patients, and families over difficult care-planning options. This insight led to another: that mediation and its associated set of dispute resolution skills could be as helpful in the hospital setting as it has proved in resolving complex labor disputes, child custody cases, and even international conflicts. With grant support from the United Hospital Fund, Nancy Dubler went about figuring out how to apply the mediation model to the medical setting. She enlisted the assistance of expert mediators from around the country for intensive training. The lessons of that early effort were described in Mediating Bioethical Disputes by Nancy Dubler and Leonard Marcus, published by the United Hospital Fund in 1993. In 2004, after another decade of experience, Nancy Dubler and Carol Lieb-man, a professor of law at Columbia University and herself an expert mediator, set out to produce a detailed practical guide for mediating the wrenching, often life-and-death disputes that entangle patients, family members, physicians, and other health care professionals. The United Hospital Fund was pleased to again support this work and to publish the first edition of Bioethics Mediation: A Guide to Shap-ing Shared Solutions, which was widely acclaimed and provides the foundation for this expanded and updated volume, published as a United Hospital Fund Book by Vanderbilt University Press. The United Hospital Fund’s mission is to shape positive change in health care for the people of New York. Since our founding in 1879, we have worked to im-

xii Bioethics Mediation: A Guide to Shaping Shared Solutions

prove the quality of health care and to support health care professionals as they work to provide the best possible care. Through our research and analytic work and program support for projects that envision positive change, the Fund seeks to shape a health care system that is committed to the highest standards of care and excellence for all.

James R. Tallon Jr., PresidentUnited Hospital Fund

xiii

Preface

The Evolving Nature of Bioethics Mediation

This book is designed to help bioethics committees and clinical ethics consultants move to more effective clinical ethics consultation. The idea in the first edition of this book that mediation skills should be at the core of clinical ethics consultation (CEC) and that the process offers the best chance of reaching principled resolu-tions to difficult conflicts has now evolved into the mainstream of CEC. This view is reframed in the latest edition of Core Competencies for Health Care Ethics Consultation: The Report of the American Society for Bioethics and Humanities (ASBH, in press):

Health care ethics consultants also should help to address the value uncer-tainty or conflict by articulating the specific ethics conflict or question, and facilitating a resolution that respects the appropriate roles of the involved par-ties (e.g., patients, families, surrogates, health care providers). When appropri-ate, they should:

• Ensure that involved parties have their voices heard.• Assist involved individuals in clarifying their own values.• Facilitate understanding of factual information and recognition of shared

values. • Identify and support the ethically appropriate decision maker(s).• Apply mediation or other conflict resolution techniques.

The landscape has changed and mediation is an accepted part of CEC. Our concern, however, is that this acceptance of dispute resolution and mediation has arrived without a robust and powerful commitment to the skills that the discipline demands. Our goal in this book is to describe those skills. But we have a further commitment in the book, and that is to facilitate the writing of good chart notes that will communicate the principled resolution and can become the basis for con-tinuous quality improvement, which should apply to CEC as it does to all other areas of medicine. This new edition provides a conceptual framework with which to analyze cases and introduces the specific tools needed to conduct effective mediative bioethics interventions. A substantial literature on bioethics consultation has appeared over the past two decades. But whereas the literature identifies and discusses various approaches, it presents nothing prescriptive to help those training for consultation

xiv Bioethics Mediation: A Guide to Shaping Shared Solutions

acquire the interpersonal and process skills that are assumed to be part of the core competencies for health care ethics consultation the American Society for Bioethics and Humanities has defined. We suggest, in this book, that although there might be other ways to acquire these skills, by far the most effective and efficient way is to study the body of knowledge, skills, and techniques represented by the field of mediation. This book also introduces mediators to a little-known use of the mediation pro-cess to resolve bioethics disputes and shows how a modified version of the process meets the needs of health care institutions. Although the focus here is on the use of mediation to resolve bioethics disputes, we encourage both health care providers and mediators to think about other ways in which mediation can be used to facili-tate communication and problem solving in health care.

The Bioethics Consultation Service at Montefiore Medical Center

The Montefiore Bioethics Consultation Service was established in 1978 in response to the growing awareness among medical care providers that legal rights, ethical dilemmas, and moral reasoning are increasingly issues in the practice of medicine. The service began with a mandate and a convention. The mandate was to partici-pate in the decision-making process concerning patient care; the convention was to avoid dominating that process. From the outset, the service was intended not to supplant the medical team’s input but to foster clearer analysis by applying the rea-soning of judicial opinions and ethics scholars to the dilemmas presented in clinical medical practice. In the first years, case interventions were tentative and consisted largely of retrospective analysis in the bioethics committee or with the departments or departmental divisions that had been involved with the case. Soon, the consult team began to realize that the service provided more than ethical scholarship and legal reasoning. It offered something new and valuable: neutral turf, where clinicians could come together to discuss a patient’s medical situation, the likely prognoses, the construction of the family, the relationship of the staff to the patient and the family, and the emotional dynamics of those rela-tionships. Attending physicians, house staff, fellows, residents, students, nurses, so-cial workers, and consultants all sat together and talked about the history, probable future, and past successes and failures of the medical plan. In the course of these conversations, some of the bases for and origins of the dilemmas of care soon emerged. Many times, the tensions between patients, family members, and the medical staff reflected the simple fact that various members of the care team who perceived the medical issues differently had communicated these disparate views to the patient and family and had not discussed them sufficiently among themselves. The result, not surprisingly, was that family members had adopted disparate views of the medical facts and the likely prognosis. The inevitable ensuing clashes be-tween and among the family members and between and among the care providers regarding how to manage the life, or the death, of the patient were often labeled bioethics problems, and the consulting service was called.

Preface xv

On occasion, just bringing the far-flung members of the care team together, where they could hear each other and argue their unique perspectives, resulted in an agreement on the likely course of the illness that could then be communicated to the patient or family. Once the conflicting professional messages disappeared, the conflicting family dictates often dissolved as well. This repeated pattern of resolution led to the theory that this experience might provide a basis for a more self-conscious bioethics intervention process. Specifically, a decade of observation had arrived at a theory: bioethics disputes are essentially conflicts, and the underlying issues of patient and family rights can best be clarified and addressed by approaching the turbulence and discord with the skills of dispute mediators. With this in mind, we enlisted the help of colleagues to put this theory into practice. We asked Dr. Leonard Marcus, director of the Program for Health Care Nego-tiation and Conflict Resolution at the Harvard School of Public Health, and David Matz, a member of The Mediation Group and director of the graduate program in dispute resolution at the University of Massachusetts at Boston, to train the bioethics consultation team, the risk managers (who often dealt with facets of the same disputes), and colleagues from the American Bar Association Commission on the Legal Problems of the Elderly (who were increasingly interested in dispute reso-lution) in techniques of mediation. The project was funded by the United Hospital Fund, the publisher of the first edition of this book and an ongoing supporter of our efforts in this realm. The collaboration between bioethics and mediation professionals was not al-ways easy. We began the first day’s training by focusing on a common scenario: the capable patient who wants to refuse life-sustaining care but whose wife wants him to accept treatment and live. Legally and ethically, a patient who is capable of making decisions has the right to refuse care even if the result of that refusal is death—so, a bioethicist might ask, what is left to negotiate or mediate? But as the mediation professionals pointed out, the bioethicist’s assumption reflects the naïve notion that matters of legal rights and ethical interests play out in clarity and calm. In reality, the patient’s right to decide may not translate into the emotional strength to insist on that right in the face of a family member’s concerned opposition.1 And in mediation, our mentors noted, “the process is part of the product.” The goal of this first scenario was to arrive at consensus that the patient had the right to decide. A secondary goal was to reach consensus on the most ethical path to take: help his wife and the care team understand and support his decision. After undergoing mediation training, we no longer had any doubt that media-tion offers an appealing enhancement to bioethics consultation. It acknowledges the primacy of rights and the complexity of interests in medical care decision making. It recognizes the differentials in power and authority that pervade the medical setting. Most important, it has established skills and a body of knowl-edge that can be brought to bear on difficult, sometimes seemingly intractable, disputes. When bioethics mediation programs were getting started, many bioethicists were reluctant to use the term mediation because it characterizes the event as a

xvi Bioethics Mediation: A Guide to Shaping Shared Solutions

conflict when it has not been so designated by the parties. When staff disagree about the course to follow, they generally perceive their disagreement as the search for the best outcome or the care plan that is in the best interest of the patient. Many physicians and nurses and also many family members would be shocked by the suggestion that their disagreements have risen to the level of conflict, although in many cases that would be a correct portrayal. In some cases, however, identifying the conflict as a conflict actually helps to clear the air by clarifying the issues, defusing some of the political and hierarchical power trips that sometimes surround conflict, and empowering the less dominant and influential of the staff to speak up and voice their concerns. Moreover, call-ing the session a mediation may make it easier for the mediator to import experts without bruising any egos, citing that designation as the basis for the request for additional or new information. There may be an additional argument for calling the session a mediation. Many states have passed legislation protecting the confidentiality of mediation communi-cations. Some statutes make mediation communications inadmissible in litigation and administrative proceedings, while others create a privilege for mediation com-munication. Especially in highly contentious circumstances, knowing that what is said in the mediation cannot be used against any of the participants later should the parties not reach agreement can be critical to open, candid discussion.2 Thus, we developed the process of mediating bioethics disputes (Dubler and Marcus 1994), and mediation has been an integral part of the Montefiore Bio-ethics Consultation Service ever since. These clinical ethics consultation services are available to physicians, nurses, social workers, house staff, medical students, family members, and patients who have been troubled by the decision-making process, the values reflected, or the interests imperiled in a case. Any member of the medical team can request a consultation, as long as the attending physician, who is legally responsible for the care of the patient, is alerted immediately and offered a key place in the discussion. In dealing with approximately one hundred consultations a year for many years, the Montefiore Bioethics Consultation Service has found that there is always a bioethics hook on which to hang the initial request for a consultation. However, with investigation, most cases referred to the Bioethics Consultation Service are not merely bioethics dilemmas but conflicts that have been defined in bioethics language—and most often the conflicts rather than the bioethical issues become the key to the case. Thus, bioethics consultation is largely, although not entirely, a matter of conflict resolution. And while bioethics consultants certainly need to be experts in ethical, legal, and medical issues, they also should have a good grasp of process and a strong set of dispute resolution skills. Each case presented in the following chapters has a bioethics issue that defined the presenting problem: the family is demanding care that is not in the best interest of the patient; the family, in derogation of a living will, wants everything done for the patient; the patient is refusing care and is not capable of making that decision; or the physician is insisting on care that the family claims the patient would refuse if the patient were capable. These are bioethics hooks, but by themselves they say

Preface xvii

nothing ethically critical about the case or its likely outcome. What they do signal, and very clearly, is that conflict surrounds the case. This book is the result of the extensive collaboration and mutually supportive learning that have engaged the coauthors over the past fourteen years. The catalyst for this shared experience was the spring semester retreat of the Certificate Program in Bioethics and Medical Humanities (a joint program of Montefiore Medical Center, the Albert Einstein College of Medicine, and Cardozo Law School). The spring training in mediation had been held twice, and the first book on mediating bioethical disputes had been published (Dubler and Marcus 1994), when Nancy Dubler and Carol Liebman linked efforts. What Dubler brought to the project was the notion that these dilemmas could be approached more systematically; what Liebman brought was the intellectual framework for a systematic assessment and intervention. What we could do together was, over the years, test the theory in the crucible of hospital reality—defining, honing, and recalibrating the theory and practice as experience dictated. When Dubler left Montefiore, Dr. Tia Powell, who assumed the leadership of bioethics at Montefiore and the directorship of the cer-tificate program, continued working with the authors. The work of the Montefiore Medical Center Bioethics Consultation Service has given us ample opportunity to test this theory. The business of consultation is grati-fying and humbling. We have not presented the easy victories; those are not very interesting. We have agreed, and the consult notes demonstrate, that getting the parties together, airing views, and clarifying and sharing different perspectives nor-mally results in a care plan with which all the parties can be comfortable. The cases presented here show how hard the process can be and how often it can fail, despite what we believe is a principled approach to the issues and the process. In the years since the first edition of this book, the authors have also benefited from working with people from numerous hospitals and medical centers who came together to hone their skills in consultation, writing chart notes, and developing quality im-provement projects. These participants also contributed insights and cases that have been integrated into this work. This revised and expanded edition of Bioethics Mediation reflects some of the recent thinking of the authors. Issues do not remain static and neither do scholars and practitioners. This edition also reflects developments in clinical ethics consultation (CEC) since the first edition was published, as well as the leadership of one of the authors, Nancy Dubler, in forging an agreement among a nationally recognized group of experts regarding education, training, and institutional supervision of clinical eth-ics consultants (see Appendix: “Charting the Future: Credentialing, Privileging, Quality, and Evaluation in Clinical Ethics Consultation”).3 In 2007, the year after we published the first edition, Fox, Myers, and Pearl-man presented a survey in the American Journal of Bioethics suggesting that CEC is currently available in 81 percent of all general hospitals and 100 percent of hos-pitals with more than four hundred beds. The study reports that only 41 percent of consultants had formal supervised training in ethics consultation; 65 percent of consultants make recommendations and 6 percent never had; 22 percent of eth-

xviii Bioethics Mediation: A Guide to Shaping Shared Solutions

ics consultation services had performed no consultation in the previous year, and 90 percent of these services had performed fewer than twenty-five; only 4 percent of consultations were evaluated by anyone outside the process. Astoundingly, the authors reported that 29,000 individuals devoted more than 314,000 hours to performing more than 36,000 consultations each year. This appeared to be the case despite many of these individuals’ apparent lack of qualifications as experts. We focus in this book, as in the first edition, on the specific techniques of me-diation in the complex tool kit of interventions available to clinical ethics consul-tants. But the Fox article indicated that a far greater problem existed in education, training, and practice than we had imagined. Thus this edition highlights the issue of chart notes as a critical element in communicating the substance of a principled resolution of any conflict, as a way of educating staff about the underlying bio-ethics issues and as a surrogate for real-time evaluation of the consultation. This last element, chart notes, prepares the path for a robust quality improvement effort at every institution. If there really were 29,000 CE consultants providing more than 36,000 con-sultations a year, we wondered: Who were these persons? How did they get to be CE consultants? Did the institutions review their credentials, educational history, and training? Had the institutions appointed them to these positions? Had the institutions established the extent and limits of their rights, duties, obligations, and privileges? Were their performances reviewed, evaluated, and critiqued? Were there clear criteria for which cases were appropriate for intervention and which were not? Were there rules and established protocols for when other parts of the institution needed to be involved in or at least alerted to the consultation? Was the intervention of CEC documented in the chart so that all rotating staff could understand and help implement the solution? Were the consultations reviewed for quality? A group of clinical ethics consultants at Montefiore Medical Center suspected strongly that the answers to those questions were in the negative. This was of par-ticular concern for those involved in CEC. Calls for consultation almost never arise in cases where the provider team, the patient, and the family are comfortable working and making decisions together. Requests for consultation almost invari-ably result from situations in which there are misunderstandings, disagreements, and disputes. These clashes tend also to address more than minor matters. These are not disagreements over the temperature of the meal served at lunch. They generally involve weighty discussions of important therapeutic decisions and often matters of life and death. Well-trained, sensitive professionals who have the experience and skill to help the parties articulate their interests, understand the stakes, arrive at op-tions, and forge a consensus can be of enormous help to all involved. However, if clinical ethics consultants are not sensitive, skilled, and experi-enced, consultations offer them opportunities to impose their own prejudices, ide-ologies, and values on patients and families under the guise of accepted bioethical solutions. These imposed resolutions may be inconsistent with the values, desires, and goals of the patient and family. This outcome would be a perversion of the role of the CE consultant to search for a consensus that is guided by the history, values,

Preface xix

and preferences of the patient and by concerns of fairness and justice. Finally, a poorly trained CE consultant can actually exacerbate discord, further obfuscate the issues, and make difficult situations worse. Central to the problem seemed to be the willingness of health care institutions to incorporate CEC without sufficient focus on the training and education of the consultants and without sufficient supervision and scrutiny. Hospitals would never permit other staff to engage in procedures for which they are untutored, untrained, and unsupervised. Why should they make an exception for bioethics? What is there in the field that permits, indeed seems to encourage, this response? What addi-tional obligations do Fox’s findings impose on us as authors of a text that has a special place in the education and training of CEC practitioners? In this new age of patient safety and quality improvement, no corner of hospital practice is immune from scrutiny for quality and efficacy—why should bioethics be exempt from this rigorous review? Fox’s 2007 data exposed the state of clinical ethics consultation practice as unacceptable. The article suggested, however, some corrective measures and the development of professional standards. The project addressed to these issues suggested that hospitals had the ethical obligation to act at once on these issues in support of the rights and interests of staff, patients, and families. A major part of the problem was lack of consensus in the field in regard to how bioethics professionals should be trained and evaluated. There had been some discussions over the years directed at the education and status of clinical ethics professionals, including the American Society for Bioethics and Humanities core competencies document in 1998, which had recommended goals for professional education. None of the proposals for training and evaluation have yet reached a level of acceptance in the bioethics community that would permit progress on this front. Moreover, there was no agreement about whether clinical ethics consultants should, like other health care professionals, be credentialed and privileged, a system that the Joint Commission on Accreditation of Healthcare Organizations now de-mands for medical staff with specialized skills. If the field was not going to police itself, then hospitals, nursing homes, home care agencies, and other institutions that offer CE consultation would themselves have to ensure that CE consultants would function competently in the interest of patients, family members, loved ones, the staff, and the institution. That responsi-bility would require an institution to have some notion of how to (1) measure the skills of an applicant for CE consultant privileges, and (2) critique performance once the CE consultant had a track record of cases addressed. This need led to the development of the Clinical Ethics Credentialing Project, funded by FJC, A Foundation of Philanthropic Funds; the philanthropic arm of the New York City Health and Hospitals Corporation, the HHC Foundation; the United Hospital Fund of New York; and the New York Community Trust, with the following aims:

1. Design a process to credential and privilege clinical ethics consultants.2. Create a one-year training program in clinical ethics consultation.

xx Bioethics Mediation: A Guide to Shaping Shared Solutions

3. Develop a quality improvement tool for CEC that (a) permits the col-lection of quantitative and qualitative data; (b) employs an ongoing peer review of consultation notes; and (c) integrates the findings of this process into the institution’s overall quality improvement structure and into the practice of the consultation services.

4. Convene a working group of nationally recognized experts in bioethics and clinical ethics consultation to advise and comment on the work of the project.

The result was a consensus document published by the Hastings Center Report (Dubler et al. 2009) that laid out a set of perceptions and terminology that also govern this edition of Bioethics Mediation (see Appendix for the full report). The patient safety movement and quality improvement practices in health care have changed how insurers, the federal government, and patients rate and measure excellence in health care delivery, and will increasingly determine how care is reim-bursed. CEC has remained insulated from these evaluations, and this exceptional-ism, the project argued, must end if its full potential is to be realized. The Clinical Ethics Credentialing Project was designed to integrate clinical eth-ics more fully in institutional life.4

The Structure of This Book

Part I, “A Framework for Understanding Bioethics Mediation” (Chapters 1–2), explains the value of mediation as a tool for addressing the complex conflicts en-countered in the medical context. It distills and analyzes the experience of an ac-tive bioethics consultation service in many large urban teaching hospitals over the past fifteen years—encounters, learning, successes, and failures—using a combina-tion of cases and scholarly discussions. (In every description of a case, the loca-tion has been omitted, names have been changed, and medical histories have been altered to protect the privacy of the patients, families, and care providers.) These chapters provide essential background for parties preparing to engage in bioethics mediation. Part II, “A Practical Guide to Bioethics Mediation” (Chapters 3–5), provides a detailed roadmap to preparing for and conducting effective bioethics mediations. The methods and steps presented combine the lessons of actual consultations in the medical setting with the literature of mediation and the training of professional mediators. Part III, “Chart Notes” (Chapter 6), provides a framework for writing chart notes that permits effective oversight and quality improvement for CE services, as well as guidance about the goals and structure of chart notes. The chapter also contains a taxonomy of common bioethics issues that may be raised by the consul-tation. These short analyses may be incorporated in whole or in part into the chart note as a step in educating staff who were present and others who will read the note as a part of the patient’s chart.

Preface xxi

Part IV, “Case Analyses” (Chapters 7–9), presents examples of the complex and humbling cases bioethics consultants encounter. These cases underscore the need for a dynamic approach to bioethics consultation; principles are the starting points for consultation, but alone they are incapable of resolving the conflicts that surround care. Mediation theory and practice can offer the necessary intellectual grounding and technical skills. Part V, “Role-Plays: Practicing Mediation Skills” (Chapters 10–15), provides fresh scenarios in which people working in institutional settings can develop and practice their skills in bioethics mediation by role playing as members of bioethics mediation teams. Each chapter outlines a case and provides instructions for each participant. Each case presents a different configuration of the needs and wants of the patient or family members in the context of medical care options. Through these cases, understanding and trying out the principles and practices suggested in this book will help professionals in real-life bioethics conflicts maneuver most ef-fectively toward a solution. Part VI, “Annotated Transcripts of Bioethics Mediation Role-Plays” (Chapters 16–19), supplies annotated transcripts of actual role-playing sessions that used the material presented in Chapters 11, 12, 14, and 15. The sessions were recorded dur-ing two of the spring semester retreats on mediating bioethics disputes that take place annually in the Certificate Program in Bioethics and Medical Humanities.

Notes

1. When we refer to “family members,” we mean to include not just the patient’s biological family but also all beloved others (Levine and Zuckerman 1999).

2. Nonetheless, it must be made clear to all participants that key aspects of the discussion might need to be reflected in a chart note that would be discoverable in any future legal actions, since it is an open, accessible part of the hospital care plan; a promise of protection in that case might be misleading.

3. In the final draft of the new edition of the American Society for Bioethics and Humanities’ Core Competencies for Health Care Ethics Consultation, note 1 states: “Although the term ‘clinical ethics consultation’ is colloquially popular, the Task Force chose to keep the original term, ‘health care ethics consultation,’ as a more descriptive term referring to the full scope of ethics consultations that may be provided in health care settings” (ASBH, in press). In this book we have chosen to retain the term clinical ethics consultation.

4. The Clinical Ethics Credentialing Project is funded by the United Hospital Fund of New York City, the New York Community Trust, and FJC, A Foundation of Philanthropic Funds.

xxiii

Acknowledgments

Although this book is primarily the collaboration of Nancy Dubler and Carol Lieb-man, it has been enriched by the experience and wisdom of colleagues, scholars, and practitioners. A few need special thanks. Barbara Swartz, Bruce K. Gould Dis-tinguished Professor at Touro Law School, a scholar of health law, and an expert mediator, was on sabbatical at the Montefiore Medical Center Division of Bio-ethics in 1999. She provided mentorship and inspiration, read drafts of the first edition, and participated in a set of mediations. Her comments on those media-tions provided the basis for an instant critique of the process and product. Her notes and comments on some of the cases are integrated into Chapters 7, 8, and 9. Leslie Bailey arrived at our doorstep as a summer intern after her first year at New York University Law School. Her first project, as we were writing the first edition, was to help us think through the task of weaving together the writing, thinking, assumptions, and styles of two academics in very different settings, with vastly different experience. Luckily for us, Leslie was gifted in the way she attacked her tasks and organized her material. She was also amiable and dogged; without her skill and good humor this book might never have emerged. In that same year Marc Fleischer was a fellow in the division. He and Chris Stern Hyman participated with Professor Swartz in a working group on the topic “What Counts as Evidence in Bioethics Mediation?” The fruits of this discus-sion are most visible in Chapter 3. An earlier form of the chapter, entitled “What Counts as ‘Evidence’ in Mediating Bioethical Disputes?,” was presented at the con-ference “What Is Your Evidence? Defending Arguments in a Pluralistic World,” the Fourth Annual Seminar, Centre for Values, Ethics, and the Law in Medicine at the University of Sydney, Australia, August 2000. Also in Australia, Professors Miles Little and Bernadette Tobin provided critical and constructive suggestions. Jeffrey Blustein and Linda Farber Post, at the Montefiore Division of Bioethics, were unfailingly generous with their time and energy and read and commented on multiple drafts of the first edition. Their experience with the reality of mediating bioethical disputes in the day-to-day work of the Bioethics Consultation Service provided a depth of wisdom and understanding that infuses the narratives and commentaries. Tia Powell was a critical reader who provided a midcourse correc-tion for the final draft of the first edition and invaluable insights as we worked with the book and thought about the revised edition. Margaret Shaw and Ellen Waldman generously spent time reviewing an earlier stage of the book and making thoughtful and wise suggestions. Hannah Litman, now a clinical ethics consultant at Montefiore Medical Center, added wisdom to the revised edition. Many of the issues discussed and the techniques presented had their origins in

xxiv Bioethics Mediation: A Guide to Shaping Shared Solutions

the first Montefiore Mediation Project in 1992. Two members of the American Bar Association Commission on Law and Aging, Erica Wood and Naomi Karp, partici-pated in that project and have been thoughtful colleagues on mediation issues since that time. The mentors for that project were Leonard Marcus and David Matz, both of whom were generous with their time and energy. Leonard Marcus and Nancy Dubler wrote the first book on the subject, Mediating Bioethical Disputes (Dubler and Marcus 1994). That first project and the subsequent publication were supported by grants from the United Hospital Fund, an early, enthusiastic, and ongoing supporter of the work of Nancy Dubler and the Division of Bioethics. The model of bioethics mediation presented here benefited greatly from the insights of the teaching team members of the weekend retreat on mediation of the Certificate Program in Bioethics and Medical Humanities: Chris Stern Hyman, Dina Jansenson, Marc Fleischer, David Geronemus, Paul Sarkozi, Jean Miller, Alex Carter, Alvin Ikoko, Janet Dolgin, and especially Ann Bensinger. The role-play scripts in Part V were developed for that retreat. Mathy Mezey, co-director of the Certificate Program with Nancy Dubler for many years when the program was housed at New York University Nursing School, was an invaluable colleague in the process. Our great thanks to the clinical and administrative staff at Montefiore Medi-cal Center. These nurses, physicians, and social workers are unfailingly open to new ideas and always searching for ways to improve patient care. They have been critically available to new ways of thinking about communication and dispute resolution. Special thanks to Leslie Carrington, former assistant to the Division of Bioethics, who kept track of consultations—and everything else that moves throughout the division—with efficiency and good humor. Thanks also to the Co-lumbia Law School Clinic staff—Brenda Eberhart, Athena Vagelatos, Vanessa Sala-zar, Shavonne Norris, Sean Koehler, and Mirlande Mersier—for their patient and cheerful assistance through both editions of this book. A special category of thanks goes to Phyllis Brooks, our editor at the United Hospital Fund for the first edition. Her vision, abiding commitment, and extraor-dinary skills moved the book from fledgling idea to reality. Michael Ames and Ed Huddleston at Vanderbilt University Press have given skilled guidance for this revised edition, and Bobbe Needham did an exceptional job of copyediting. Finally, we thank our husbands, Walter and Lance, who read drafts, offered advice, and provided copious amounts of wine and chocolate when appropriate or necessary.

1

PART I

A Framework for Understanding Bioethics Mediation

Why does mediation hold such promise for the vital activity of clinical ethics con-sultation? Professionals who engage in CEC know that both process and inter-personal skills are essential for the person leading the consultation. We believe that mediation provides the best theoretical framework for understanding the process of bioethics dispute resolution and for training those who will perform these im-portant tasks. Here is why:

• Mediation is a body of knowledge and a set of skills that can be taught.• Skilled mediators are available to provide training and can be linked with

bioethics professionals in mutually supportive relationships.• Mediation is more and more interesting, at least to those professionals

who see the imposition of administrative directives, and the interference of insurance companies, as an unappealing source of conflict over care plans and who ask whether the new health care reforms will increase or decrease these events.

• Risk managers and litigation experts increasingly agree that poor com-munication by medical personnel with the patient and family is hazardous in terms of later possible litigation and that mediation provides a route to structure and guide that communication.

• Scholarly literature about mediation can be linked with bioethics consulta-tion and thus enrich the field.

In making this argument, we have deconstructed the discussion into as many of the component parts as we could to raise the most pertinent issues that might confront the busy and harried bioethics mediator in a contemporary health care setting.

3

1

Why Mediation?

The following case was presented at Medicine Grand Rounds at a major urban teaching hospital.

The Angry Family Acting against the Best Interest of the Patient: Clarence Corning’s Case

Clarence Corning was an eighty-six-year-old male with respiratory distress. He was hospitalized for a stroke that had occurred on the right side of his brain. He was initially on the neurology service and then transferred to the acute rehabilitation service, where he had a feeding tube placed; the medical team also began treatment for pneumonia in his left lung. On the twenty-seventh day of the patient’s hospitalization he had an acute event with desaturation, tachypnea, and decreased mental status and was trans-ferred from the rehabilitation service to the Medical Intensive Care Unit, where he was promptly intubated for acute respiratory failure secondary to aspiration pneumonia. The patient’s hospital course was then quite troubling. He was intubated and treated for hospital-acquired pneumonia with broad-spectrum antibiotics. On hos-pital day (HD) #36 he was extubated. He was transferred to a step-down unit on HD #39. On HD #41 the patient spiked a temperature again and was restarted on broad-spectrum antibiotics. On HD #44 he was reintubated for recurrent aspira-tion pneumonia. On the same day the patient also was started on hemodialysis for renal failure. On HD #48 the patient underwent an elective tracheotomy. When Mr. Corning entered the hospital, he had experienced some atrial fibril-lation and hypertension. He had no history of drug or alcohol abuse or use of tobacco. His relationships with his family were warm and supportive. The medica-tions he was taking included Warfarin, Reglan, Enalapril, Escitalopram, folic acid, and Albuterol/Atrovent. On multiple occasions, communication with and decision making by the family had been difficult and possibly detrimental to the patient’s best interests. For example:

4 Bioethics Mediation: A Guide to Shaping Shared Solutions

• A Shiley hemodialysis catheter was placed for emergent hemodialysis. The patient became febrile ten days later but for over thirty-six hours the family refused to allow his catheter tube to be changed. In this interim, the patient had a positive blood culture for staphylococcal infection.

• The patient had been dialysis dependent since initiation and required permanent access. The family refused to allow permacath placement until twenty-two days later.

• The patient had recently become hypotensive and febrile and had a posi-tive blood culture for gram-negative rods. The family at first did not allow the resident to order appropriate antibiotic coverage and was still refusing replacement of the permacath.

• There had been many instances of the family’s arguing with the house staff and nurse practitioners involved in the care of the patient regarding routine orders and patient management.

Mr. Corning remained in the hospital. Though he was now on a tracheostomy collar, he continued to have nosocomial infections and recurrent bouts of sepsis. The decision makers for the patient were his son and daughter, who were joint health care proxies. This case was presented at grand rounds in medicine at a major urban teaching hospital that does not have an active CEC service using mediation as its interven-tion for conflict. This is an example of a festering conflict that angered and inca-pacitated the medical staff and, one could imagine, infuriated and depressed the family. The resident in charge of the case admitted, when asked, that no one had actually told the family that Mr. Corning was dying. This large elephant at the din-ner table was visible to all but mentioned by none. Had the authors of this book been able, they would have

1. convened all of the care team for a meeting;2. confirmed that, by all medical parameters, as far as could be determined,

this patient’s chances for recovery were very slim to nonexistent;3. arranged a conference with some representatives of the team and the

family; and4. followed stada:

• Sat with all in one room• Begunbyasking:“Tell me about Dad”• Admired the family for loving their dad so much• Discussed the diagnosis and the prognosis by (a) engaging in a process of

generating options, and (b) engaging the family in a discussion about their values and goals and how to match those with the articulated options for care

• Asked what the family thinks Dad would want and what would be in his best interest (see Chapter 5 for a discussion of stada)

Why Mediation? 5

Everything that could have gone wrong in this case did. A man quite vital before his stroke was now quietly slipping into death, and no more interventions could prevent his demise. No one on staff had told the family that they were sorry for the infections that some patients acquire. They need to say this even though quality improvement measures insist that these infections are not inevitable but are avoid-able with greater care and checklists of preventives. No one had engaged the family in mourning this terrible outcome. Silence had become the rule, as administrators had advised the medical team that the family might take legal action. Consider in contrast a case in which mediation was used.

The Isolated Wife Adjusting to Loss: Edward Davidoff’s Case

Edward Davidoff, an eighty-two-year-old man, was admitted to the cardiac service with chest pain. Diagnostic tests revealed the need for quadruple bypass surgery to open four occluded vessels. He was a poor candidate for surgery, however, because he had chronic uncontrolled diabetes with moderate-to-severe compromise of his peripheral vascular system. Unfortunately, there were no other choices if he wanted to live, which he did, and surgery was performed. After the surgery, Mr. Davidoff did not recover and developed various infec-tions, necessitating his return to surgery for the removal of infected muscle and bone. A bioethics consultation was requested after the second surgery, at which time he was ventilator dependent with an open chest wound that would not heal. Mr. Davidoff ’s wife was desperate about her husband’s condition and determined that he should recover. She was unable to assimilate the nuanced, and not very clear, discussion by the care team, who used euphemisms to indicate that Mr. Da-vidoff was dying. No one in the cardiac team had been blunt about the prognosis, and Mrs. Davidoff used this oblique discourse to reinforce her unrealistic expecta-tions about her husband’s recovery. Completely alone and desperately lonely, she had moved her chair out into the hall and sat there waiting to waylay any staff member with a connection to the care of her husband. She responded to any spe-cific discussion about care options by choosing the most invasive (why that option had been presented was the first question the bioethics mediator asked the cardiac team), which she equated with the best chance of insuring her husband’s survival. She was never told directly that his survival would be unprecedented, and so it is not surprising that she continued to demand that everything be done. This de-mand led to the request for a CE consultation. The consult was called by the nursing supervisor, who had been spending increasing time with Mrs. Davidoff. In keeping with the usual procedure of the service, the bioethics mediator met first with the care team—the cardiothoracic surgeon, the vascular surgeon, the first- and second-year residents, the surgical fel-lows, the primary nurse, and the nursing supervisor. They discussed the case and explored the history of Mr. Davidoff ’s care and the prognosis, concurring that Mr. Davidoff was unlikely to survive the night. No one had yet communicated this prognosis to Mrs. Davidoff. Moreover, Mr. Davidoff had clearly stated to various


members of the care team that if the surgery failed, he did “not want to be kept alive on machines.” The team felt that it had an obligation to the oft-expressed wishes of the pa-tient but also to the anticipatory grieving of the wife. The team members did not think that Mrs. Davidoff could decide to remove her husband from the ventila-tor, although they felt this removal was probably what Mr. Davidoff would have wanted. Furthermore, they felt that a do-not-resuscitate (DNR) order was needed to prevent a terrible death if Mr. Davidoff went into cardiac arrest. The open chest wound precluded any effective resuscitation effort. Before ending the care team discussion, the mediator asked which members of the large team wanted to be part of the discussion with the patient’s wife; con-fronting her with the entire group would be intimidating. It was agreed that the cardiothoracic surgeon, one of the surgical fellows, one of the residents, and the primary nurse would meet with her. The mediator next asked who should lead the discussion. She explained that she was a stranger to the patient’s wife and would introduce herself and explain her role but that she need not lead the discussion un-less that was the wish of the team members. They asked her to lead the discussion. The primary nurse then invited Mrs. Davidoff to join this smaller team. The mediator introduced herself and explained her role. “Sometimes when members of the care team and members of the family disagree about a plan of care,” she said, “I am invited to join the discussion. My role is not to make the decision but rather to explore the various options—first with the care team, and later with the team and the family—to see whether all can reach a consensus about the best care plan for the patient. I am sort of a mediator but I am an employee of the hospital. I have spoken with the care team and they seem to think that your husband is dying.” “You mean like in a year or six months?” Mrs. Davidoff asked. “No,” the mediator answered, “maybe even today. They have not been able to remove the infection, which continues to spread, and they seem to think that there is not much more that they can do. They are also concerned about the fact that your husband told many of them that if he were in a state where he was on ma-chines and where he was not expected to recover he would want to be permitted to die.” She went on to explain the team’s reasons for wanting to remove Mr. Davidoff from the ventilator and why they recommended a DNR order. Mrs. Davidoff had no involved family and only a few friends, none of whom came with her to the hospital. Also, she was Jewish and it was the time of Rosh Hashanah, the Jewish New Year, when families often get together and when, by religious tradition, decisions about life and death are logged for the future year. For any person accustomed to this practice, it is a time when being alone would be particularly poignant. Mrs. Davidoff therefore requested the support of a rabbi and soon agreed that her husband would not want to live this way and that a supportive care plan was appropriate. Bioethics conflicts range in difficulty from simple to extremely complex. This book emphasizes difficult cases to illustrate the range of issues involved in mediat-ing complex disputes. But the majority of bioethics conflicts are similar to Mr. Davidoff ’s case and fall at the easier end of the spectrum.

Why Mediation? 7

In Mr. Davidoff ’s case the fragmentation of the care team, the complexity of the prognosis, the disinclination of medical staff to talk about death, and the unrealistic hopes of his wife combined to produce a conflict about the best plan of care. Although cases like this one may raise bioethical issues, the skills that are called into play—helping those most concerned about the patient clarify the medi-cal facts, explore the options, and develop solutions that reflect the patient’s values and satisfy the family—are most often those associated with classical mediation. The distinctive character of CEC creates its own process, however, blending ethical principles and mediative skills into something unique. This unique process is the subject of this book.

Managing Conflict in the Contemporary Medical Context

Bioethics is about people: the lives and deaths of individual patients in the context of family, friends, significant others, and care providers, as well as the personali-ties, history, attitudes, feelings—including fears and a sense of guilt—and com-mitments of each person involved. In recent years, bioethics disputes have become more common. Both the patients’ rights movement and the consumer movement have legitimized the place of the family and the patient in deliberations regarding medical matters. Patients are now considered customers in many hospitals, and aiming to please these consumers is one of the goals of various medical administra-tors. At the same time, awareness of the potential for conflict has grown as a result of the shifting structure of health care funding and delivery and will only increase as additional systems and measures are generated by the new health care reform. The growth of managed care and the shift from fee-for-service medicine (with its incentives for overtreatment) to capitated arrangements (with their incentives for undertreatment) have fueled growing mistrust among patients and their families, who perceive that the integrity of the care provided may be affected by factors external to the best interests of the patient. This shift has also led to increased tension between doctors and nurses, on the one hand, and, on the other, orga-nizational administrators who seek to improve the profitability of the health care institution by increasing the productivity of health care providers and shortening the time patients spend in acute care institutions. Discharge planning has become, in many institutions, the only role for social workers, as time once available for warm and sympathetic support for families and patients has been squeezed out by demands for targeted careful arrangements for the patient to return home or go to some intermediate health care facility. As a result of these changes—and of the ever-increasing number of medical choices available—CEC has taken on a height-ened profile, reflected in the developing professionalism of the field, the growth of graduate school programs, the increase in the number and quality of scholarly pub-lications and academic programs that prepare professionals for the tasks of clinical bioethics, and the impact of national organizations.


What Is Bioethics?

Bioethics is a body of scholarship produced by philosophers, lawyers, medical care providers, and theologians who, in a dialogue over the last four decades, have iden-tified shared values that provide the basis for normative principles and rules. These normative statements have been derived from benchmark ethical theory, largely propounded by the philosophers John Stuart Mill and Immanuel Kant, that deals with interlocking ideas about morality and human behavior. These rather arcane writings were modernized by the new field of bioethics to respond to the develop-ment of the modern health care enterprise. Issues of care related to increasingly skilled medical technology that could maintain organ function beyond the exis-tence of an integrated, relational person led to questions of withdrawing and with-holding care and to the development of criteria for the determination of brain death. Surrogate parenting, stem cell research, feminist ethics, and ethics of dis-ability and racial discrimination in health care all demanded a contemporary ex-ploration of new medical issues in light of standard principles and shared societal commitments. Bioethics also involves a set of ethical principles that support the therapeutic relationship and give rise to physician and caregiver obligations. These include pa-tient autonomy (supporting and facilitating the capable patient’s exercise of self-determination), beneficence (promoting the patient’s best interest and well-being and protecting the patient from harm), nonmaleficence (avoiding doing harm to the patient), and distributive justice (allocating fairly the benefits and burdens re-lated to health care delivery) (see “The Basic Ethical Principles” in Chapter 3 un-der “What Bioethics Mediators Should Know”). Finally, bioethics is about legal rules that have been created by courts and legislative bodies at the federal and state levels. These rules have recognized and responded to the developing practices in medicine In 1992, the Joint Commission on Accreditation of Healthcare Organizations established a new standard that required all accredited institutions to have the capacity to address ethical issues in medical care and practice. The result of that pronouncement was the creation of a new wave of ethics committees that sought to develop the capacities to engage in case consultation, education, and policy development. It would be difficult now to find a health care institution of any quality that does not have an ethics committee addressing staff education, policy protocols, and, at the very least, retrospective case consultation or review. In their formative stages, most bioethics committees engaged in retrospective analysis as a way of educating themselves about the conflicts that exist in clinical practice. As they have become more sophisticated, these committees, or specific consultant services they spawn, have increasingly become involved in real-time discussions that affect the outcome of patient care decisions under way. The American Society for Bioethics and Humanities (ASBH 1998) developed a set of core competencies for bioethics consultation that detail the qualifications bioethics consultants must possess in or-der to operate prospectively and intervene in developing cases.

Why Mediation? 9

But just how to move forward was a puzzle to many committees and fledgling consultation efforts. Intervening in cases as they evolve, and by intervening perhaps changing the medical plan, requires a theory of practice to guide the intervention. Analyzing what has happened in the past has fewer moral consequences than does helping to determine what will happen in the future. Should the consultant or small group advise the caregivers? Should they write their opinions in the chart? Should they intervene in the care plan being developed? Should they impose their values and notions of the right and the good on the caregiving team? And how should the patient’s family be involved in these discussions? Consultations often address issues such as the withdrawal of treatment or the limitation of care, al-though they may equally well suggest a more aggressive care plan. One cannot and should not be prepared to intervene in this process of decision making without having training, knowledge, skills and clear notions of the governing principles and procedural guidelines that will structure and constrain the intervention. Many of these questions were being discussed as we developed the first version of this book. In the interim, as mentioned in the Introduction, answers have been developed by the Clinical Ethics Credentialing Project and by the new edition of the American Society for Bioethics and Humanities manual (ASBH, in press), which we think will both be influential in moving the field toward education and training standards and if not credentialing then some judgment of competence to engage in the process.

What Is Clinical Ethics Consultation?

CEC has been defined as “a service provided by an individual, consultant team, or committee to address the ethical issues involved in a specific clinical case. Its central purpose is to improve the process and outcomes of patient care by helping to iden-tify, analyze, and resolve ethical problems“ (ASBH 1998). It is a service within the hospital that “provides an additional resource for difficult decisions and a conduit for complex communication among patients, their families (relatives, significant others, close friends and appointed surrogates) and the care team” (Dubler et al. 2009). A well-structured CEC does the following:

• Conducts“informeddiscussionoftherelevantcontentandhistoryofbio-ethics—the principles, practices and shared civil mores of American law, medicine and ethics”

• Facilitates“understandingtheethicaldimensionsinclinicalpractice(e.g.,navigating discussion of uncertainty, articulating ethical issues, elucidating ethical viability of options, negotiating decision making in complex medi-cal situations)”

• Oftenmediatesconflictsbetweenmembersofthehealthcareteamorbetween staff and patients or family members. The CE consultant has an obligation to intervene and act in a timely manner and in a way that helps empower patients and families (Dubler et al. 2009).


The Hastings Center Report (Dubler et al. 2009) identified these salient charac-teristics of clinical ethics consultation. Clinical ethics consultation is the intervention by a trained clinical ethics pro-fessional that

• responds in a timely fashion to the request for a CEC from any member of the medical care team, patient, or family member;

• reviews the patient’s medical record;• either interviews relevant medical stakeholders or gathers the clinical care

team and other consultants to discuss the case;• visits the patient and/or family whenever possible;• as a preliminary matter identifies the ethical issues at play and any sources

of conflict;• involves the patient or family with a select number of the health care team

to open up lines of communication, generate and explore options, and seek consensus, when appropriate;

• identifies the ethical issues at play and any sources of conflict;• employs expert discussion of bioethical principles, practices, and norms

and uses reason, facilitation, negotiation, or mediation to seek a common judgment regarding a plan of care going forward;

• attends to the social, psychological, and spiritual issues that are often at play in disagreements about the proper course of care;

• triggers a further process with hospital medical leaders and/or a bioethics committee to resolve the situation if a resolution is not reached;

• follows up with a patient and family after the initial consult [varies by systems, as in some this is a task solely for the medical team];

• records the process and substance of the consultation, including the con-sultant’s recommendations and their justification as part of the patient’s medical record;

• reviews the consultation with others on the CEC Service as a basic level of evaluation and peer review; and

• utilizes a formal and rigorous quality improvement process.

Professionals with expertise in biomedical ethics either chair or advise ethics committees, present monthly seminars, participate in psychosocial rounds and conferences, offer grand rounds and teach in medical, nursing, and allied health professional schools and other academic settings, engage in policy development for institutions, and direct or participate in clinical ethics. The most common mode of bioethics consultation in academic teaching hos-pitals has traditionally been the teaching round, which incorporates the bioethics professional into the structure for assessing patients and discussing their care, or grand rounds, which present new legal and ethical developments that are relevant to care. During these bedside rounds, a bioethicist focuses on the present state of the medical facts, especially aspects of patients’ conditions that are relevant to their

Why Mediation? 11

capacity to provide ethically and legally valid informed consent. The bioethicist also inquires about advance directives and likely asks about the configuration of the family.

Mediation

Mediation has long been used to resolve disputes. It is a private, voluntary, infor-mal process in which an impartial third person facilitates a negotiation between people in conflict and helps them find solutions that meet their interests and needs. The current alternative dispute resolution movement began in the late 1960s and early 1970s with impetus from two very different sources. In many areas commu-nity action groups turned to mediation as a way to draw on local people and local values to resolve conflicts. The focus was on shaping outcomes that met commu-nity interests and that provided a higher-quality outcome than was likely to result from a formal process. At about the same time, courts began to look to mediation as a docket management tool, focusing on the opportunity for a more efficient and more economical resolution of cases rather than on ways in which mediation could enhance the quality of the resolution. Today mediators are routinely consulted in employment cases, special education cases, and civil cases ranging from the most complex to those in small-claims court. They are called on to help resolve family disputes (divorce, custody and visitation, parent-child, and estate cases), consumer disputes, environmental disputes, and labor-management disputes, as well as dis-putes within institutions as diverse as junior and senior high schools and the U.S. Postal Service. On the international level, mediators have been called on to help restore peace or avoid violent conflict. The mediator works with the parties, helping them identify their goals and priorities, generate and explore options, and exchange information that may be necessary for formulating a solution. Unlike a judge or arbitrator, the mediator is not interested in acquiring information in order to determine what happened and who is to blame, nor does a mediator decide who is right and who is wrong or impose solutions on the parties. In mediation the historical facts are important only insofar as they help the mediator and the parties understand how each party experienced the event that brought them to mediation. The mediator is interested in learning each party’s view of what happened in order to better understand the issues that should be addressed, not to determine whose version of the facts is cor-rect. Another way to conceptualize the difference between mediation and adjudica-tion is to think of mediation as a process that allows the discovery of the version or interpretation of reality that can accommodate the coinciding and conflicting interests and needs of the participating parties. Mediation is based on three core principles: party autonomy, informed decision making, and confidentiality. Mediators are optimists. They believe most people enmeshed in a conflict have the ability, given the proper setting and access to neces-sary information, to consider options and select resolutions that meet their needs.


Confidentiality allows the parties to speak freely, without fear that what they say during the mediation will have repercussions in a subsequent proceeding. In the health care context, however, confidentiality is limited. The health care team shares all medically necessary information (see Chapter 2). Introducing a mediator into a dispute does not change the fact that the partici-pants are essentially involved in a negotiation process. A large part of the media-tor’s value lies in serving as a guide and coach, helping the disputants move from position-based to interest-based negotiation, encouraging them to discover solu-tions in which value is not left on the table and each realizes as many of his or her goals as possible, focusing the parties on interests, discovering differences in prefer-ences, and helping them generate options.

Mediation in Health Care Settings

In the hospital setting, where health care providers, faced with intense demands on their time, are called on to explain complex information and deliver bad news to physically and emotionally vulnerable patients and their families, and where large numbers of physicians, nurses, and other providers interact with one another and with the patient, it is not surprising that communication breaks down and disputes arise. Mediation is now used in a variety of medical settings to deal with disputes between residents and staff in nursing homes, disputes over Medicare reimburse-ment, and quality-of-care complaints involving Medicare and Medicaid, and to resolve medical malpractice claims (Hyman et al. 2010; Hyman and Schechter 2006) and bioethics disputes, most notably by Montefiore Medical Center in its pioneering program. Mediation tools are also being used to aid in disclosure of adverse medical events (Boothman et al. 2009; Liebman and Hyman 2004; Sha-piro 2008). Bioethics mediation combines the clinical substance and perspective of clinical ethics consultation with the tools of the mediation process, using the techniques of mediation and dispute resolution in order to

• identifythepartiestotheconflict(althoughdisagreementsbetweenfamilyand care providers are common, most conflicts have more than two sides);

• understandthestated(presented)andlatentinterestsoftheparticipants;• leveltheplayingfieldtominimizedisparitiesofpower,knowledge,skill,

and experience (to the degree possible) that separate medical professional, patient, and family;

• helpthepartiesdefinetheirinterests;• helpmaximizeoptionsforaresolutionoftheconflict;• searchforcommongroundorareasofconsensus;• ensurethattheconsensuscanbejustifiedasaprincipledresolution,com-

patible with the principles of bioethics and the legal rights of patients and families;

• craftachartnotethatmakestheconsensusaccessibletoallmembersofthemedical team on all shifts and explains the bioethics issues at stake;

Why Mediation? 13

• trackimplementationoftheagreement;and• conductfollow-up.

Bioethics mediation in the acute care setting can serve many ends. It may, under certain circumstances, enhance the autonomy of the patient, support the shared values of patient and family, or make clear and strengthen the agreed-upon principles of health care provision. Sometimes it results in the implementation of a commonly shared plan. Whatever the end result, the fundamental goal of mediat-ing bioethics disputes is to maximize the likelihood that a principled resolution will be reached in a way that is comfortable for all parties. A key component of bioethics mediation is the neutral turf created by the pres-ence of a person who is not a member of the health care team and who has not participated in the interventions that have gone awry or the discussions that have broken down. Unlike the classical mediator, who is assumed to be impartial and connected to neither party, the bioethics mediator will likely be an employee of the health care institution that is the site of the dispute. Nonetheless, the bioethics mediator brings a distinct set of concerns and skills to the meetings with providers, patients, and family and must be impartial to the situation at hand. One important reason for a bioethics mediation is to level the playing field by giving patients and families opportunities to be heard. Frequently, in the context of modern medical facilities, patients’ or their family’s voices are muted, if not lost, and their ability to vindicate the patient’s interests is overpowered. The power imbalance in a hospital setting comes from many sources: the greater knowledge and expertise of the treatment team compared to that of most patients, the highly technical and unfamiliar physical setting, and the imperfectly aligned interests of the patient and the treatment team members. The physical and emotional stress of serious illness also contributes to an uneven playing field. Patients in hospitals are often very sick; cognition, under-standing, and judgment are all affected by illness. Some patients regress when ill and become dependent. Others simply withdraw. Also, families are under moder-ate to extraordinary stress depending on the health status of the patient and on the trajectory of illness—whether the patient is improving or deteriorating. A family’s ability to cope with hard decisions depends on long-established patterns. Families with a tradition of pulling together and supporting each other do better than fami-lies with histories of discord. Dysfunctional families rarely improve under stress. Families under stress are also at a disadvantage in medical settings because they have a bad collective reputation among health care professionals (Dubler 1999; esp. Powell 1999). They are regarded as disruptive, hard to manage, and at odds with staff, although there are almost no hard data to support these opinions or prejudices. Often families feel that no one has really listened to them or taken their wishes and concerns into consideration. They may not believe that they are viewed as an active and integral part of the decision-making process by the medical staff. Sometimes the very fact that they are able to express themselves in an environment where they feel their views are respected can be more meaningful than reaching the


solution they had first advocated. If families feel they have been heard, they may be more open when listening to the concerns of the medical staff and more willing to work with them to find the most satisfactory treatment options for the patient. One of the greatest advantages of using the mediation process in bioethics disputes is that the process is flexible. The general structure of mediation can be adapted and altered to fit the needs of the participants. But the starting point is always the same: respect for the patient, the family, and the care providers and an impartial stance regarding what the outcome should be in any particular case. In bioethics mediation, the process is a key part of the product. Opening up the decision for scrutiny by a larger, medically sophisticated group and to the input of interested parties who have relevant information and relevant value consider-ations is of itself a step ahead in the ethical process. It is much harder to take any action that skirts ethical norms when many people are alerted to the problem and are watching the outcome. In this sense, bioethics mediation is of value because it permits a problem to be characterized and analyzed by a greater number of trained professionals, thereby collecting experience and facilitating multidisciplinary dis-cussion. This process also makes it less likely that the bioethics consultant will be co-opted by the more powerful players in the medical center. Clinical ethics con-sultation, when effected through the process of mediation, is collaborative, open, and transparent. The bias of this book is that collaborative processes are, by their very nature, superior to secret, hidden, authoritarian, and private decision making that emerges only as a progress note or a consultant script in the medical chart. The openness inherent in mediation is one of its chief strengths.

Principled Resolutions

A principled resolution is a plan that falls within clearly accepted ethical principles, legal stipulations, and moral rules defined by ethical discourse, legislatures, and courts and that facilitates a clear plan for future intervention. For a principled reso-lution to have an impact in the real world of shifting staff, it must be described in a note in the medical chart that explains the logic, describes the ethical dilemma, and details the components of the agreement. We developed the idea of the principled resolution in 2005 when we were first struggling with the stringent limits imposed by law on medical providers and in-stitutions, contrasted with the powerful decision-making authority permitted indi-vidual patients and families in medical situations, in light of the power imbalances that infuse the operations of the modern hospital and medical center. A prin cipled resolution reflected the deep and thorough support in the law and in societal norms for decisions of patients and families, especially when these decisions contest the juggernaut of modern, institutionalized medical care. A principled resolution re-flects the strength of a mediative process that incorporates legal norms and ethical conventions and intuitions and uses both of these as support for forging a consen-sus in a crisis. A principled resolution defines the boundaries of the acceptable spectrum of

Why Mediation? 15

outcomes from which the decision makers may choose. Bioethics conflict is almost always about the “proper” or “appropriate” plan for future care. The parties gener-ally include the attending physician, other members of the health care team, and an advocate for the patient. This advocate can be a family member or friend. Some-times the patient is alone without family, such as an “unbefriended elderly” (Karp and Wood 2004) patient. But the patient may be a younger, isolated, and perhaps mentally ill person. The reason that the mediation is largely with nonpatient ad-vocates is that capacitated adult patients have the legal right to choose to accept or reject medical alternatives even if their decisions are judged to be wrong by others. Thus bioethics mediation often addresses situations in which the adult patient is al-leged to be incapacitated, is clearly incapacitated, or is a minor or otherwise legally compromised.

The Limitations of Mediation

Mediation does not always succeed. Indeed, this book describes some real-life cases where it did not (see Chapters 7 and 9). Various characteristics of conflict may combine to make mediation impossible in a particular circumstance. Parties to a mediation must want to reach agreement. Thus, if a physician has strongly held religious beliefs, value preferences, or practice patterns that are rigid and conflict with the values and desires of the patient, the patient might need to capitulate or shift his or her care to a different physician. A physician’s implacable opposition to patient or family choice might mean that the bioethics mediator must shift the dis-cussion of the underlying policy issue to a different forum, either an institutional bioethics committee or a properly empowered administrative person or body. In some cases, the patient or family members may not have the emotional strength to face difficult facts or make hard choices. They may need to have some decisions made for them. When mediation does not result in an agreement, it is useful to remember that the impasse may not be a sign of failure but, most likely, an indica-tor that another process is better suited to resolving the dispute. Moreover, par-ticipation in the process may have given participants the opportunity to exchange information, clarify goals, and explore options that will aid in finding resolution in some other forum.

Mediation and Consultation Distinguished

Sometimes in bioethics mediation the mediator needs to step out of the role of mediator and into the role of consultant, most often when the process is leading to an ethically unsupportable outcome. For example, the mediator may need to stop the discussion to explain and support certain norms of decisions and of care and to suggest a principled analysis that could lead to a solution. In the mediation world, the term med-arb (mediation-arbitration) describes a process in which the mediator changes roles and becomes the decision maker when the parties are unable to reach


agreement. This process is controversial (and disfavored by the authors) because the knowledge that the neutral mediator may ultimately pass judgment on what he or she has heard is likely to affect what the participants say to the mediator and how they say it, as well as the type of information the mediator elicits and attends to. Although bioethics mediators always wear two hats, they are never judges or ultimate decision makers. They are seekers for the resolution of the conflict (media-tors) and, at the same time, transmitters of an accepted body of knowledge that may constrain a principled solution in any individual case (clinical ethics consul-tants). Indeed, it is precisely because of the distinctive quality of bioethics disputes and the demands of the clinical setting that the process is better characterized as a clinical intervention than as an administrative procedure.

The Case for Mediation

In the medical world there is some controversy about the appropriateness of media-tion as a model for clinical ethics consultation. Is bioethics mediation truly media-tion? Or is it just the imposition of the staff’s will on patients and families through a supposedly neutral mediator? It could be charged that the bioethics mediator simply enforces the dominant norm and does not act as a neutral participant in an even-handed process. This book, however, presents an alternative, more sympathetic interpretation. The reality is that CEC is generally called for only in difficult cases. When the family, patient, and care providers agree on the diagnosis, prognosis, and care plan going forward, there is no real need for a bioethics consultation. In difficult cases, the real question is: Which is the least bad process for draw-ing out and resolving the issues? The clinical ethics consultant could decide what the right ethically and legally based solution is in the case; the attending physi-cian could decide what the best medical plan is; or an administrator, usually a risk manager, could determine what outcome would put the institution in the least dangerous position in terms of possible future liability. The bioethics mediator, in contrast, would most likely ensure, through the nature of the process, that the options are based on respect for persons, respect for interests and rights of patients and families, and regard for differences. To remove the discussion from the realm of family interaction and merely let the hospital make the decisions would be an authoritarian resolution. Such resolutions, happily, are rare. To see how a bioethics mediation can frame the discussion, allow the family to have their values, hopes, and fears heard, and constrain the possible outcomes, consider the case of Alex Barlow, far more complex than that of Mr. Davidoff.

Why Mediation? 17

A Dying Patient and the Issue of Scarce Resources: Alex Barlow’s Case

Alex Barlow was a nineteen-year-old African American male who at seventeen had been diagnosed with gliosarcoma (brain tumor) and given a life expectancy of less than one year. At the time of the clinical ethics consultation, Alex’s care was being provided by the Pediatric Intensive Care Unit (PICU), although until this hospi-talization he had been treated by an adult oncology service. His illness had recently entered a terminal phase despite an aggressive course of treatment involving sur-gery, radiation therapy, and chemotherapy. And despite these interventions, Alex continued to have headaches and seizures and had been frequently admitted to the hospital for care. Alex and his family repeatedly chose options of aggressive care and rejected any palliative care or hospice options presented to them. Alex contin-ued to deteriorate and suffered from mild aphasia, memory loss, right-sided weak-ness, and gait problems that necessitated his using a four-sided cane. Alex was able to participate in decisions about his care and communicate his preferences, which were consistently for aggressive care. Toward the end of his ill-ness, he appointed his sister as his health care proxy and his girlfriend as the al-ternate decider. At the time that a bioethics consultation was requested, Alex was intubated, unconscious, and unresponsive and had multiple organ failure. He had been in this state for approximately two months secondary to the effects of the brain tumor, sepsis, and a chronic lung infection. Alex had experienced great sadness and dislocation in his life. As children, he and his sister had been abandoned by their biological mother and eventually had been adopted by an elderly foster care mother. When they were adolescents, their adoptive mother returned them to the foster care agency and revoked her adoption. Alex had been in juvenile detention for some parts of his adolescent years. Since age sixteen he had been in touch with his biological mother and had had a con-stant girlfriend, who dropped out of college in the last year of his illness to care for him. His sister and his girlfriend were present nearly every day at the bedside and insisted that he responded to their presence. An older man who frequently visited was referred to as a brother. There had been several confrontations between the care team and Alex’s family (sister, girlfriend, and brother) as his health deteriorated. This conflict was not sur-prising, since the case was medically complex and the outcome increasingly grim. Moreover, Alex, like many other poor people and people of color without adequate health insurance coverage, had received episodic care from a series of institutions. Most recently, a phalanx of consultants had reiterated to the family that Alex was dying. That meeting had been a disaster and had led to bad feeling with all mem-bers of the family. At that point the social worker called for a bioethics consulta-tion. In a brief memorandum about the case that she brought to the first meeting, she stated the ethical questions as follows:

1. What are the health care team’s obligations to the well-being of Alex and to his protection from harm? What are its obligations to the family?


2. What are the health care team’s obligations to provide Alex with medical care involving scarce resources when such care is deemed medically futile?

3. Should the health care team make decisions about Alex’s care against the will of the health care proxy if they feel that it would prevent harm to Alex and prevent suffering?

As is the policy of the bioethics consultation service, the bioethics mediator met first with the staff to try to understand the medical history and the present medical options. Members of the care team were concerned with Alex’s continued stay in the PICU and with the administration of platelets, which were at that moment a scarce resource in the hospital. They did not know how to connect with the family around this dying patient and had failed repeatedly to reach an agreement about the course of Alex’s care. The mediator asked for a palliative care consultation before meeting with the family. Finally, the mediator, the social worker, the primary PICU attending physi-cian, and the palliative care physician sat together with Alex’s sister, girlfriend, and brother. The mediator opened the meeting by explaining that she was an employee of the hospital and that her task was to try to find some common ground where both the staff and the family could be comfortable with the plan of care for the patient. She explained that she did not come to make the decision but rather to help the parties understand each other better and reach some agreement. “Oh,” the sister commented, “you’re like a mediator.” The sister then embarked on a passionate presentation about her relationship with her brother and the course of his illness. She detailed the failures of all the health care systems with which they had dealt. She attacked the various hospi-tals in which Alex had previously been treated and called attention to those times when they had not been adequately informed about the options and possible con-sequences of treatment. For example, she stated that they would not have agreed to the last chemotherapy if they had known that one consequence would be the need for blood and platelet transfusions. She emphasized that she and her brother were everything to each other and that she would never, under any circumstance, agree to any measure that would shorten his life by even a moment. He was the only person for all of her life who had been stable and loving. She was clear and powerful in her support of her brother and in her understanding of the system. She was extremely angry that some of the staff members talked in front of her brother as if he could not hear and did not tidy up the room adequately after changing his dressings and his diapers. The mediator was impressed by the sister’s intelligence, force, and advocacy, and she said so. She then commented that her task, in this case, was not only to listen and try to forge some common ground but also to place some constraints on the range of possible decisions. She explained the difference between “scarce” and “expensive” resources and identified platelets for transfusion as a scarce resource. She explained that scarce resources are distributed according to one of three general systems: first come, first served; lottery or random chance; and the judgment of the medical staff about which patient would be most likely to benefit from the trans-

Why Mediation? 19

fusion. She explained that all hospitals currently used the third option and that as long as there was a citywide shortage of platelets, Alex would not receive any, because there was no chance he would benefit. The brother exploded. “Are you messing with my mind? Do you mean that my brother will not get this transfusion because you think that someone else will get better and he won’t?” The mediator said yes, and the discussion about fairness and justice proceeded for some time. The family accepted that Alex would not be eligible to receive platelets. Finally, the sister said: “Thanks for telling us about the system. But don’t tell us that he is dying—we don’t want to hear that. And don’t tell us that you are moving him from the PICU.” The staff had discussed the possibility of moving Alex, and they were inclined to move him out of an intensive care bed since he could no longer benefit from that level of care. But the family had already been faced with one difficult decision, the mediator pointed out, and moving him from the PICU would totally isolate him and his family. Furthermore, the PICU had a few open beds at that moment and she believed the staff had obligations to the patient and to the family and that maintaining the patient in the unit fulfilled the obligations to the family. The staff, somewhat uncomfortably, agreed to maintain the patient in the unit. The mediator explained that if there were a catastrophe with multiple victims who needed the care of the unit, or a large number of very sick children arrived all at once at the hospital, the staff would again talk to the family about the location of the patient’s care. The mediator also brought up the family’s anger that staff discussions indicating the patient was dying took place in his room. The staff agreed to stop this practice, and the mediator recorded their agreement in the chart note. Finally, the palliative care physician stated that he was going to suggest to the attending physician that she write a DNR order based on the narrow notion of “physiologic futility”—that there would be no way to restart the heart and lungs of this patient were he to go into cardiac arrest. The physician assumed the respon-sibility for making this decision and did not put the burden of the choice on the family. He described the state of the patient’s lungs and the fragile nature of many of his systems. “The patient will not survive a resuscitation effort,” he said, “because it will be too violent for his body to stand. He will die a violent death.” The sister agreed that if his heart or lungs stopped, it would “be his time.” Was this a true mediation or was it the imposition of the staff’s will on the family through the supposedly neutral mediator? Alex’s family stated their anger and dismay, heard finally why platelets would not be available to the patient, and accepted the DNR order that would smooth his death. They negotiated staff si-lence in the presence of the patient about his dying and attention to the state of his room. They were assured of his continued stay in the PICU unless needier patients arrived. They gained control of the elements of his care that they could influence and acknowledged the elements that were beyond their control. Perhaps they were comforted by the boundaries that had been set and to which they agreed. In any event, the relationships between the family members and the staff were far better after the mediation.


Alex Barlow’s case highlights some critical themes in modern bioethics and con-temporary American medicine. The family began this final set of interactions with the staff while the patient was dying. But this patient and family had been involved in a medical system that had failed to be faithful to them throughout the illness. Also, the foster care system had failed them, and they have been enmeshed in the juvenile correctional system. Thus they began, justifiably, with no sense of trust in the caregiver team and no inclination to accommodate this particular set of professionals. And the medical team was working at cross-purposes. The primary attending physician was intent on moving the patient out of the PICU, which she felt needed to be open for newly admitted patients who could benefit from the high-tech care that it offered. The nurses were somewhat alienated by the behavior of the family, and the palliative care team had not been sufficiently involved in the discussions with the family. All were decent and hard-working professionals involved in furthering a defensible set of goals but avoiding the sort of robust inter-actions with the family that the case required. The mediation provided the setting for the necessary discussions. This case shows how a mediative approach by the clinical ethics consultant can repair relationships between caregivers and family members as they face the wrenching reality of an approaching death. The CEC made it possible for family members not only to speak but also to know they had been heard, and also made clear the limits on care. This chapter begins and ends with descriptions of bioethics mediations in which the mediation process did not change the outcome in terms of what medi-cal care would be given, but it did ensure that the concerns and needs of family members were identified, acknowledged, respected, and, to the extent that those needs did not violate legal or ethical norms, accommodated. The mediation process allowed the families in both cases to begin to come to terms with their impending loss, and restored communication and teamwork between the family and the health care team.

21

2

What Makes Bioethics Mediation Unique?

Clearly, the institutional role of the clinical ethics consultation requires modifying some classical mediation practices. What is important, whether in classical media-tion or in bioethics mediation, is that mediators be aware, when deviating from the model, that they are doing so and why. Even more important, mediators—in any setting—must make clear to all participants the rules under which they are operating. Bioethics mediation differs from other types of mediation in several ways.

• Thebioethicsmediatorisgenerallyemployedbythehospital.• Thebioethicsmediatorandmembersofthetreatmentteamarerepeat

players.• Thebioethicsmediatorprovidesinformation,enforcesnorms,andensures

that resolutions fall within medical best-practice guidelines.• Decidingnottoreacharesolutionisnotanoption.• Theplayingfieldisusuallyunevenforpatientsandtheirfamilies.• Confidentialityislimitedtoinformationnotrelevanttopatientcare.• Timeisoftheessence.• Bioethicsmediationsinvolvelife-and-deathissues.• Factsplayadifferentrole.• Thepersonwiththegreateststakeinthedispute,thepatient,isoftennot

at the table.• Theremaybeasequenceofseparate,priormeetingsinadditiontothe

group mediation.• Bioethicsmediationsarealmostalwaysmultipartyevents.• Thepartiesusuallydonotsignanagreementtomediate.• Thephysicalsettingmaynotbeinthemediator’scontrol.• Bioethicsmediatorsareofteninvolvedinfollowinguponimplementation

of the agreement. • Allparticipantsinabioethicsmediationhaveacommoninterestinthe

well-being of the patient. • Theclinicalethicsconsultantentersadetailedaccountofthemediationin

the patient’s chart (see Chapter 6).


The Bioethics Mediator Is Generally Employed by the Hospital

In most classical mediation programs, the mediator is a neutral party with no alle-giance to one side or the other. Either the parties agree on a mediator, or a court or other agency assigns one. Mediators must reveal any prior contact with any of the participants, and any party who is uncomfortable having the mediation conducted by someone who already knows one of the other participants has the right to ask for a different mediator. In some programs, mediators are not allowed to handle cases in which they know the parties. This model of impartiality would not work in many other cultures, where the only acceptable mediator would be one with the trust that comes from preexisting relationships with both parties. In bioethics mediation, however, unlike in classical mediation, mediators are most often employed by the hospital. Their status as hospital employees means that bioethics mediators have the requisite substantive knowledge about the health care system, a knowledge of and commitment to the ethics of medicine, an un-derstanding of the issues confronting patients and their families—and the care-givers—in acute care situations, and a baseline level of knowledge about issues of liability, as well as knowledge about the hospital hierarchy, practice, and personnel. Knowledge of the particulars and the history of staff can provide a crucial starting point for resolving conflicts, especially when events are constantly in flux and re-quire speedy decisions. When the first bioethics mediation programs were developed, as a practical matter, a stranger with no knowledge of the field, the staff personalities, and the institution would not have been given access to conflicts when life-and-death issues and legal liability were at stake. As caregivers become more familiar with media-tion, some institutions may choose at times to use outside mediators, especially in cases where the level of distrust seems so high that an in-house mediator is unlikely to be effective. However, the urgent nature of most bioethics disputes makes it dif-ficult, generally, for an outside mediator to be brought in quickly enough. Whereas hospital bioethics consultants are not neutrals—independent persons with no previous connection to either side—they do come as new actors into a stale, and stalemated, context. They have no history with this patient and family. They lack responsibility for the care decisions that produced no positive re-sults or that resulted in a worsening of the patient’s condition. They have not lost their tempers at moments of stress. They are not strangers, but they are persons uninvolved in and neutral to this particular conflict. Furthermore, since hospital conflicts often involve life-and-death decisions for which physicians, nurses, and the institution are legally and morally responsible, the health care providers may be more likely to trust mediators who are associated with the hospital to negotiate for consensus. Another benefit of the mediator’s status as a hospital employee is that he or she is familiar with the clinicians and the prior patterns of the medical service involved. For example, if the mediator knows that a particular doctor has a principled objection to do-not-resuscitate orders and thus never writes them, the mediator will be better prepared to frame the discussion realistically with the pa-tient and family if such an order is an issue. If the mediator confirms that the doc-

What Makes Bioethics Mediation Unique? 23

tor’s objection extends to a particular case, he or she can convene care providers to see whether the order may be ethically appropriate for this patient under these cir-cumstances. Without this understanding of the doctor’s values, the mediator may start the process at a less effective point. There is a risk, however, that the patient or family may question the hospital mediator’s impartiality and assume that the mediator will take the side of the medical staff. Also, the medical staff may ques-tion the bioethics mediator’s institutional loyalties. Such a concern on either side can compromise the mediator’s position and make it difficult to build trust. But it is also true that successful mediations enhance the reputation of the mediators and make staff more likely to call for help in difficult situations.

The Bioethics Mediator and Members of the Treatment Team Are Repeat Players

As mediation becomes more widely used to resolve disputes in the legal system and within large organizations such as hospitals, there is a risk that individual plaintiffs, employees, consumers, or patients will be at a disadvantage at the mediation table when dealing with defendants who are familiar with the process and, perhaps, with the mediator. In many of those settings, however, the power imbalance created by having a repeat player at the table can be offset by the presence of an attorney or other advocate for the plaintiffs. In bioethics mediation, where the patients or family rarely have such support, the single player versus repeat player problem may be acute. In bioethics mediation, the mediator and the medical team have often been in-volved in previous clinical ethics consultations or mediations and may have worked together in other professional contexts. Thus, the medical staff are familiar with the process and with the bioethics mediator and may have learned how to work the process (and spin the mediator) to achieve their goals. The family, however, is usu-ally encountering both the mediator and the mediation process for the first time and is likely to feel that it does not have an advocate at its side. This is a problem to which mediators must be particularly attentive. When beginning a mediation, a mediator may need to acknowledge this issue and assure the patient and family of his or her support.

The Bioethics Mediator Provides Information, Enforces Norms, and Ensures That Resolutions Fall within Medical Best-Practice Guidelines

Constraints in the process that are set by legal rules and ethical principles are not unique to bioethics mediation. The mediator in a marital property dispute, for example, where the contesting parties seem to be working out a settlement that would leave one of them dependent on public assistance and the other one wealthy, would be under an obligation to halt the mediation and explain that such a settle-ment would be counter to public policy and might constitute fraud. In addition to the boundaries established by law and public policy, bioethics mediation must


operate within the boundaries of accepted medical practice, bioethics principles, relevant legal rules, and relevant institutional policy. But bioethics mediators have a much more direct and explicit responsibility: to transmit a body of knowledge about bioethics issues and enforce these norms. While they may use classical mediation process skills in the search for resolution, they also must be sure that any agreement is in the best interest of the patient, that it comports with the medical ethical norm of “do no harm,” and that it meets the state’s legal requirements. Furthermore, it is not sufficient for the mediator to arrive at a solution that all accept if that solution compromises the best widely accepted medical care plan and leaves the patient less well off. The patient or the family could later sue for negligence, and the target of the suit would be the staff and the hospital, on whom legal responsibility falls. Thus the boundaries of a principled resolution are legal, ethical, and medical. There is rich debate in the classical mediation community about whether the mediator should be responsible for ensuring that any agreement is fair or only for determining that the parties have the capacity to negotiate for themselves and, if so, helping them reach any agreement that works for them as long as it is not il-legal (see Bush 1989; Stulberg 1981; Susskind 1981). Leonard Riskin (1984), for example, argues persuasively that mediators should be responsible for ensuring that agreements can meet three tests of fairness: Do the parties feel it is fair? Is it fair in terms of generally prevailing social norms? Is it fair to parties not at the table?

Deciding Not to Reach a Resolution Is Not an Option

In many mediation contexts it is acceptable (even if not wise) to fail to reach an agreement. Litigants can continue to battle in the courts; neighbors can continue hostile relationships; parents and their teenager can continue to disagree about curfews. Stopping short of an agreement is rarely an option, however, in bioethics mediation. The welfare of the patient, standards of care, and legal requirements mean that decisions must be made about whether to continue or end treatment or about what treatment is to be provided. The attending physician and the institu-tion are legally responsible for the care of the patient and must decide what mea-sures are in the patient’s best interest if negotiations fail. Thus, if agreement cannot be reached in the mediation session, a series of default rules for determining who makes decisions comes into play. The hospital personnel or, in some cases, a court may impose a solution consistent with their determinations of the best interests of the patient, the relevant decision-making rules, and the needs and interests of the institution.

The Playing Field Is Usually Uneven for Patients and Their Families

In classical mediation, one of the mediator’s jobs is to be alert for power imbal-ances that might prevent a fair negotiation of the issues. But as important as it is


to recognize and address such problems, power imbalances are not an issue in most mediations. In bioethics mediation there are almost always two predictable sources of power imbalance: disparity in knowledge and information, and disparity in emo-tional status. The treatment team has far greater medical expertise and greater access to information than do most patients or family members. Even after the medical facts are presented, the bioethics mediator must constantly assess whether the patient or family understands the medical facts and is equipped to interpret the information, if not on an equal footing with all participants, at least suffi-ciently to make an informed decision. Family members often respond with surprise to details about the case not be-cause the information has not been presented to them but because they could not absorb it when they were told. On occasion, however, each member of the treatment team may have assumed incorrectly that the others had relayed critical information to the family. In addition, team members may have given conflicting information to the family. In addition, various family members may have heard information differently or assigned it different meanings. One of the roles of the bioethics mediator is to ensure that critical information is presented in such a way that the patient or the family members can hear it and absorb its meaning accurately. Bioethics mediators can also overcome the imbalance and help families make difficult decisions for gravely ill or dying loved ones while also dealing with their own deep emotional distress by slowing down the discussion of the medical facts, asking the treatment team to explain medical terminology, and summarizing with-out using euphemisms to mask unhappy prognoses. There is a simple fact that goes some distance toward balancing this uneven playing field: in the medical context, and especially with complex and invasive treatments, the care process requires consent. If a patient—or the family of a deci-sionally incapacitated patient—refuses to consent to a new intervention, that in-tervention will not be provided until this dispute is resolved either by mediation, by a hospital administrator, or by a court. Similarly, the vast majority of hospitals require consent from the patient or family to discontinue even futile treatment. This requirement may empower the patient or family at a particular juncture in the provision of care.

Confidentiality Is Limited to Information Not Relevant to Patient Care

In bioethics mediation, the confidentiality that is a core principle of nonmedical mediation is limited. Good medical care requires that all providers share informa-tion about the patient’s condition and care with each other across disciplines and between shifts. Documentation in the patient’s chart is the means of accomplishing this information exchange, and any treatment plan developed during mediation, as well as new information significant to the patient’s condition that comes out in mediation, will be recorded in the patient’s chart.


In addition, the fluid nature of bioethics mediations, in which the mediator convenes as many of the caregivers as possible but may also need to speak with some people individually or with different groups by shift, often makes uncertain who is and who is not a participant in the mediation process—and therefore cov-ered by any promise of confidentiality. It is therefore most fair and accurate to say that confidentiality, except for personal secrets unrelated to the care plan, is not guaranteed in bioethics mediation.

Time Is of the Essence

Bioethics disputes arise and must be resolved in the context of evolving diagnoses and prognoses punctuated by intermittent medical crises, in overcrowded diagnos-tic and surgical schedules, and framed always by therapeutic uncertainties. Thus, unlike classical mediators who promise the parties that they will spend as much time as necessary or as much time as they want in mediation, bioethics mediators usually work under severe time pressures. They work on cases where medical conditions may be rapidly developing, where the need for a decision may be urgent, where at least one of the parties is often in an acute crisis, and in institu-tions where work demands on members of the treatment team may limit their par-ticipation. Thus it can be tempting to rush through the meeting with the medical team when what is called for, and what will save time in the long run, is a slower pace that allows the participants to reach agreement on a plan for the meeting with the patient or family.

Bioethics Mediations Involve Life-and-Death Issues

The stakes in classical mediation—custody of children, the future of a business, or protection of the environment—never involve life and death as they do in bioethics mediations. In some situations bioethics mediators may find that the extraordinary feelings of the participants in the face of serious illness or death are as important as—even more important than—the facts in a case.

Facts Play a Different Role

Mediators in classical mediation are interested in facts only insofar as they give the mediator either a sense of the nature and history of the problem or informa-tion useful in helping the parties shape a resolution. It is often possible in such cases to resolve a problem without reaching agreement about the facts. There is a subset of neutrals who, unlike the authors, believe that the mediation role includes evaluating the strengths and weaknesses of each side’s case and predicting the likely outcomes at trial. For them, deciding what the facts are does matter. In bioethics


mediation, however, it is essential that the medical parties involved in the decision understand and agree on the medical facts—what is happening with the patient, the likely prognosis, and how available treatments might affect the patient’s con-dition—and that the patient and the family understand those medical facts. Not surprisingly, medical experts sometimes disagree about how to interpret data points (such as lab findings, test results, or knowledge gained from physical exams) in establishing medical facts (see “Stage 4: Presenting and Refining the Medical Facts” in Chapter 4).

The Person with the Greatest Stake in the Dispute, the Patient, Is Often Not at the Table

Many classical mediators require that all stakeholders and decision makers be pres-ent during the mediation; as a default option, if parties prefer to have an agent represent them, the parties must be available by telephone for consultation. In bioethics mediation, the patient’s condition often precludes his or her meaningful participation. The patient may be unable to participate in the mediation discussion and unable to be consulted about any agreement reached during the process. The voice of the patient should be heard, and in the patient’s absence it can be approximated either by appeal to an advance directive that the patient completed before incapacity intervened or by discussion with the family. Advance directives are of two sorts, living wills and proxy designations, also called durable powers of attorney for health care decision making. These documents bring the patient’s voice forward to the discussion in real time. Living wills state specifically what the patient would or would not want under various circumstances. But because the circumstance rarely fits the specifics, they are often irrelevant and thus easy to ignore. Proxy appointments direct that health care decisions be made by a des-ignated person who is empowered to hear the medical facts, evaluate the alter-natives, and choose among them. The proxy appointment allows the designated person to negotiate interventions, which, as this book argues, reflects the realities of care. The major problem with advance directives, however, is that few patients have them, particularly in the socioeconomic groups that use an inner city hospital. Thus, it is much more common to elicit the patient’s wishes by discussing him or her with the family. A staff person—perhaps the bioethics mediator, perhaps a nurse, physician, or social worker—tries to make the patient more than a phantom at the table by asking questions about his or her prior likes and dislikes and about reactions to medical care. This admittedly less-than-satisfying process reflects the reality that while ethical principles and the law are clear, the world of patients and their decisions is messy.


There May Be a Sequence of Separate, Prior Meetings in Addition to the Group Mediation

In classical mediation, the norm is for the mediator and the parties to have limited contact before formal mediation begins. That preliminary contact might include discussions between the mediator and the parties or their representatives to deter-mine whether mediation is the appropriate process or to decide who should be at the table. In addition, in complex cases, the participants may provide the mediator with confidential memoranda. But traditionally, discussion of the substance of the dispute is deferred until all participants meet with the mediator. The practice for bioethics mediators is different. The bioethics mediator usu-ally chooses to meet first with the members of the treatment team to try to reach agreement about the medical facts, the likely prognosis, the treatment options, and the recommended treatment. If agreement on any of these topics is not possible, the bioethics mediator tries to help the treatment team agree on how to present the different options and choices to the patient or patient’s family members.

Bioethics Mediations Are Almost Always Multiparty Events

Unlike the majority of classical mediations, bioethics mediation almost always in-volves more than two parties. Typically, several family members, physicians, nurses, and social workers participate, each bringing to the table his or her own perception and interests. And now, more and more, the participants may include a managed care representative (when a patient has reached the end of a reimbursed stay) and a member of the administrative staff, whose task is to limit the patient’s length of stay. Because most bioethics mediations have many participants, there are more op-portunities for misunderstandings and miscommunications, and it may take more time to work through the process. For example, much of the resolution of the conflict may take place outside the joint mediation in spontaneous meetings of some of the participants. Small caucuses that help various groups understand the approach and attitude of others may help move the process along (see Chapter 9).

The Parties Usually Do Not Sign an Agreement to Mediate

In classical mediation, mediators generally ask the parties to sign an agreement to mediate in order to provide confidentiality of mediation communications, to make the rules of the process clear, and to encourage sharing of information. Participants’ reactions to and questions about the contents of the agreement can give the media-tor valuable information about their concerns. Moreover, the ritual value of signing an agreement can reinforce the idea that mediation is a serious enterprise. In the bioethics mediation program on which this book is based, however, par-ties do not sign mediation agreements. There are several reasons for not using an


agreement in a bioethics case. First, most documents patients are asked to sign in the hospital setting are for the benefit of the institution, not the patient. Second, as just discussed, bioethics mediations are not truly confidential: in the hospital, key decisions and discussions are recorded in the patient’s medical chart, because good care depends on the ready accessibility of information about the patient. Third, families are under stress and distrustful and thus likely to resist signing any agree-ments. In those to-date-rare situations where a hospital uses an outside mediator, it is likely that the mediator and participants will be asked to sign a confidentiality agreement.

The Physical Setting May Not Be in the Mediator’s Control

In classical mediation, the mediator usually has some control over the physical setting in which the mediation takes place and can at least provide a place for everyone to sit and arrange the seating in a way that is likely to encourage discus-sion. In the hospital setting, given the busy schedules of the members of the treat-ment team and work schedules of family members, it may be difficult to sched-ule mediation sessions in advance or to find an appropriate meeting room. Initial sessions with the treatment team may take place with everyone leaning against a gurney in the hallway or gathering in a corner of the nurses’ station or in a vacant patient room.

Bioethics Mediators Are Often Involved in Following Up on Implementation of the Agreement

In classical mediation, mediators may or may not be involved in ensuring that the agreed-upon solution is implemented. Most often, if one party to the agreement fails to act as expected, the dispute escalates to court. But in a hospital, unresolved conflicts are likely to return to the attention of the bioethics mediator. Even when a conflict has been resolved, the bioethics mediator follows up with the nurses and doctors on the care team in an effort to maintain a close working relationship. It may also be necessary to debrief the team and allow them to review the conflict and reflect on their feelings about the outcome. Finally, established policies might need additions or corrections.

The Clinical Ethics Consultant Enters a Detailed Account of the Mediation in the Patient’s Chart

In classical mediation, the mediator may draft an agreement that the parties sign. Unless the parties choose to make the agreement confidential, it is the only public record of the mediation. The situation is quite different in a bioethics situation.


Following the determination of a principled resolution, the bioethics mediator’s role changes; as the clinical ethics consultant, he or she is responsible for entering in the patient’s chart not only an account of any agreed-upon recommended plan regarding care, but also an explanation of the process followed and principles relied upon in reaching that agreement (see Chapter 6).

All Participants in a Bioethics Mediation Have a Common Interest in the Well-Being of the Patient

The singular focus of all participants—on doing what is wanted by or is best for the patient—is unique to bioethics mediation.

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PART II

A Practical Guide to Bioethics Mediation

This is the how-to part of the book. Here we discuss issues that should be consid-ered in establishing a bioethics mediation program. Then we organize the process into stages and identify and illustrate the techniques of mediation. Following the steps outlined here is not, however, like following a recipe. Mediators must have the flexibility and sensitivity to know when to change the order of the steps and when to drop or combine steps. What is important for mediators is to learn to rec-ognize the stages so that they can call forth the appropriate techniques in support of a gradually emerging consensus. Using the techniques of mediation provides some measure of control over situa-tions that might seem too chaotic to approach, let alone resolve. If bioethics media-tors are familiar with the stages of mediation and have some notion of the goals of each, it is possible to produce small gains in support of agreement that approaching the entire conflict head-on might not accomplish. As the cases in Part IV illustrate, understanding the process does not guarantee a comfortable and unconflicted reso-lution, but it allows mediators to take on tasks with some confidence and work toward agreement.

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3

Before You Begin a Bioethics Mediation Program

In this chapter we discuss the issues to consider before beginning a bioethics mediation program: what bioethics mediators need to know, the relative importance of substantive versus process skills, the pros and cons of institution-based mediators, the hospital staff best suited to conduct mediations, the value of co-mediation, the key roles for mediators, and who can initiate a mediation. This chapter provides a theoretical background for Chapter 4, which focuses on the stages of mediation, and Chapter 5, which focuses on techniques.

What Bioethics Mediators Should Know

Mediating bioethics disputes requires knowledge of basic ethical and legal prin-ciples, as well as some understanding of medicine, the medical environment, and the culture of the particular institution. Mediators also should have an apprecia-tion of the power imbalances between patients and their health care providers and sensitivity to the ways culture affects patients’ and families’ attitudes toward illness and death. Given the institutional realities, bioethics mediators, whether hospital employees or independent practitioners, need to be well grounded in a number of areas:

• Theethicalprinciplesandlegalrulesthatframetherights,duties,andobligations of patients, families, and the institution and that form the basis of bioethics analysis and the resolution of bioethics conflicts

• Thevocabularyandnomenclatureofclinicalmedicine.Inaddition,theyshould know (a) the central concepts, principles, and theories of bioethics; (b) common clinical ethical issues; (c) relevant health law; (d) codes of professional ethics; and (e) institutional policies and practices.

• Theprocessofmediation,includingnegotiationandconflict-managementskills


• Theadministrativeandpoliticalworkingsoftheparticularinstitution(forexample, the appropriate person or committee to contact if the care team cannot agree about the medical facts and the prognosis)

• Sufficientexperienceinhealthcaretoserveasafoundationforaskingappropriate questions about medical reality, alternative care plans, and options that might sharpen the issues, identify distinctions, or provide a platform for agreement

The issue of the proper balance of process skills and substantive knowledge is the subject of ongoing debate in the mediation field. Most mediators would agree that the more technical the subject, the greater the mediator’s need for substantive knowledge. On the one hand, a mediator who is knowledgeable about the field, compared with one who lacks substantive knowledge, has more credibility in the minds of the parties and is better able to recognize common issues and concerns and to ask appropriate questions. Thus, a knowledgeable mediator ultimately may be better able to help the parties reach a resolution. In the medical ethics context, where resolution is often urgent, this increased efficiency can be especially valuable. On the other hand, familiarity with a field and with its standard operating proce-dures may cause the mediator to make assumptions and fail to ask questions that intentionally or inadvertently challenge standard operating procedures.

The Basic Ethical PrinciplesBioethics rests on four central ethical principles: patient autonomy, beneficence, nonmaleficence, and distributive justice (as noted in Chapter 1). The principle of patient autonomy is central to health care decision making. Respecting patient autonomy means giving priority to the values and wishes of the patient and thus supporting choices that are authentic and uncoerced. The concept confers a professional obligation to respect the patient’s privacy and self-determination. When the patient is no longer able to participate in discussions and has executed an advance directive, that document, if it is a living will, or that per-son, if it is a proxy appointment, can guide the patient’s care as the patient would have wanted. More often, however, there is no advance directive; then the care team and the family must muddle along together in an effort to figure out what the patient might have wanted and what is actually best for the patient. Emphasis on patient autonomy is largely a Western phenomenon, informed by values of individualism and independence. Because reverence for autonomy is not universal, health care professionals and mediators should be sensitive to cultural differences that affect patients’ comfort with notions of privacy, advance directives, and informed consent (see, e.g., Fadiman 1998). Furthermore, although it is le-gally and ethically appropriate to honor the wishes of the capable patient, physi-cians must also consider the ethical principles that give rise to other, often compet-ing, obligations. It makes sense to honor the wishes of a capable patient who has thought through the issues and reached a personally comfortable choice. However, to honor the purported wishes of a patient who is not decisionally capable is to abandon that patient.

Before You Begin a Bioethics Mediation Program 35

It is increasingly recognized that autonomy as the animating principle for care interventions is a slender reed. Yes, some patients want to make decisions on their own, but many more prefer decisions made through supported autonomy—that is, with the participation of family or others significant in their lives. Others make clear that they would prefer to delegate their autonomy to a beloved other, spouse, or adult child. In addition, a patient’s attitude toward autonomous decision mak-ing often fluctuates depending on the course of illness, time of day, and severity of symptoms. The principle of beneficence underlies the obligation to provide the best care for the patient and to balance the risks or burdens of care against the benefits. Beneficence often involves prolongation of life, restoration of function, relief from pain and suffering, and protection from harm. Beneficence resonates most strongly with caregivers, whose mission is to provide therapeutic benefit and shelter from harm. Notions of nurturing and protecting reach their fullest expression in the care of those who are the most vulnerable. However, perceptions of benefit and best interest are not purely scientific; they involve expectations, goals, and value judgments. Recognition that patients and their physicians may differ in these as-sessments is at least partly responsible for the noticeable shift from physician pater-nalism to greater emphasis on patient choice. At the very core of the healing professions is the principle of nonmaleficence, captured in the ancient maxim “First, do no harm.” This principle grounds obliga-tions to avoid intentionally inflicting harm or suffering. Most if not all therapies carry the potential for some risk as well as benefit, and it would not be feasible to limit the therapeutic arsenal to treatments that are entirely benign. Nevertheless, the benefits of recommended treatments are expected to outweigh the possible harms, and physicians are required to discuss that calculus with their patients. Distributive justice refers to the principles of social cooperation that define what is due or owed to each person in a society—in short, what is fair. The several types of justice all share one basic formal notion: treat similar cases similarly. Distributive justice, the form of justice most relevant to medical ethics, concerns the norms and standards for allocating benefits and burdens across a given population. Distribu-tive justice demands that the benefits, risks, and costs of actions—in medicine, ac-cess to resources related to physical and mental health—be apportioned fairly and without discrimination. Society must confront such questions as these: Is it fair to allocate organs for transplant on the basis of the patient’s ability to pay? Is it fair for health insurance plans to provide more generous coverage for the treatment of physical illnesses than for the treatment of mental illnesses (a question that has perhaps been resolved by health care reform)? According to the principle of distributive justice, there should be ethically defensible reasons why certain individuals or groups of individuals re-ceive benefits or endure burdens that other individuals or groups do not. Many scholars have noted that this principle is distinct from the first three, which have found their way into common medical practice and discourse. The principle of distributive justice bears a difficult burden in a nation without univer-sal access to care. A country that fails to provide universal access to health care, for


example, has not taken the idea of justice very seriously (Beauchamp and Childress 1994). It may be that in the coming years, as health care reform gains traction in the institutions of medicine, justice will be a more honored principle.

Principles of NegotiationA significant part of the mediator’s role is to facilitate a negotiation. Fisher and Ury (1981, chaps. 2–6), in their groundbreaking work Getting to Yes, suggest five guidelines for productive problem-solving negotiation:

1. Separate the people from the problem.2. Focus on interests, not positions.3. Generate options for mutual gain.4. Use objective criteria.5, Know your batna (best alternative to a negotiated agreement).

Fisher and Ury point out that too often egos and personalities become the focus of a negotiation, with the result that the negotiators neglect the problem (17–40). Thus, many negotiations get no further than an exchange of positions (You must pay me $X; I won’t pay more than $Y) and never get to the point of developing ways to satisfy the interests represented by the positions (41–57). Often negotia-tors get stuck by focusing only on the first ideas raised for addressing the problem, not taking time to develop a range of options and then evaluating the benefits and drawbacks of each (58–83). Most important, Fisher and Ury teach that although negotiators may be able to improve their BATNAs and therefore improve their negotiating positions, they should not walk away from an offer that is better than their best nonagreement option (101–11). More recent scholars have described the negotiator’s task as balancing the ten-sion between creating value and claiming value (Lax and Sebenius 1986, 29–45; Mnookin, Peppet, and Tulumello 2000, 11–43), between empathy and assertive-ness (Mnookin, Peppet, and Tulumello 2000, 44–68), between principals and agents (Mnookin, Peppet, and Tulumello 2000, 69–91), and between being true to one’s self and being effective in one’s role (Carol Liebman, Negotiation Work-shop, Columbia Law School, fall 2010). Skilled negotiators must both assert their own interests and demonstrate that they understand the interests of the other side. Negotiators also must be aware of the tensions in the principal-agent relationship.For example, the interest of a client in keeping home-decorating costs down may be at odds with the interest of the decorator whose compensation is based on a percentage of all purchases. In the health care setting, the patient and family may desire expensive cutting-edge treatments, while the hospital or managed care insur-ance company may resist such treatments to limit costs. Finally, negotiators must develop a set of skills and an approach to negotiations that makes them effective in achieving their clients’ (and their own) goals in a way that is consistent with their own values.


Ways People Respond to ConflictAs conflict managers, mediators should be aware of and comfortable with the wide variety of ways people respond to conflict, recognizing that all responses are nor-mal. People involved in conflict may become loud and exaggerate their grievance or they may shut down and express themselves in a guarded manner. Some may deny that there is a conflict because they think it is unprofessional or unseemly to engage in a conflict. People involved in conflict experience a variety of physiological symp-toms—a knot in the stomach, flushing, sweating, a racing heart. They may become suspicious, hostile, confused, defensive, pessimistic, and less trusting. Perhaps most important, people in conflict stop listening to each other. Parties to a conflict tend to express themselves through positions, insults, gener-alities, and threats (Shaw 2000). The mediator’s job is to help the parties refocus so that they can discuss their interests, communicate productively, focus on the issues that should be resolved, generate options, and evaluate proposals for resolution. Introducing a third person into a conflict changes the dynamics. The disputing parties must explain the nature of the conflict, their perspective on its sources, and their idea of the correct solution. They usually want to look good to the mediator, and so they may become more rational and less extreme in the way they express themselves or in the demands they make on the other party. Or they may feel it is safe to express previously suppressed strong emotions. The parties may also distrust or question the fairness or neutrality of the mediator. They may have the same response as spatting children when a parent enters the room, each seeking to win over the neutral party and demonstrate that he or she is in the right, that the other is in the wrong and at fault.

Who Should Conduct Bioethics Mediations

In-House versus Independent MediatorsThere is considerable difference of opinion about who is best suited to conduct mediations in a hospital setting—a hospital staff person steeped in the process, procedures, assumptions, personalities, and philosophy of the institution or an independent outside mediator. Certainly an in-house mediator knows the quirks and peculiarities of the institution, as well as the personalities and preferences of the medical staff, knowledge it would be difficult for an outsider to acquire. An in-house person can be more efficient at the outset; more comfortable with the participants and the setting; more knowledgeable about the power politics and political camps; and able to write a chart note in the chart, alerting the rest of the care team to the mediation discussions and outcome, a critical ability. Furthermore, that a mediator is part of the institution provides reassurance to the health care providers that he or she understands the complexities of the setting and the needs of the participants. This understanding provides an effective foundation for build-ing trust. In some situations, however, nonhospital mediators, despite their being unable to write a chart note, might be preferable. Because outsiders are beyond the


institution’s politics and power structure, their impartiality would be beyond ques-tion compared to an insider’s, and therefore they might more easily gain the trust of the participants. However, an independent mediator faces formidable obstacles negotiating all the problems that come with an uncertain status and commitment, particularly in light of the risk-averse nature of medical institutions and of the nature of the medical record, which must chronicle the mediation, as both a legal document of the institution and a suggestion to the patient’s attending physician, who is legally responsible for care. Most hospitals seem to use in-house bioethics mediators, preferring their knowledge of institutional mores and of the health care system and bioethical and legal principles, as well as their ease of access to staff, even though this choice may mean some diminution of neutrality, or at least of the appearance of neutrality. To repeat, hospitals are reluctant to import an unknown person into the intellectu-ally complex, legally paranoid, risk-aversive, regulation-defensive world of acute care medicine. As it is, hospital administrators continually worry about negative publicity and litigious patients. More savvy or more suspicious and distrustful ad-ministrators report that malpractice attorneys regularly prowl the halls for potential cases or have staff members in their employ to identify discontented patients and families. This is not fertile ground for the intervention of an unknown person into the management of a complex, controversial case. Until physicians, hospital administrators, and other caregivers become familiar enough with mediation to understand that the mediator does not impose resolution on the parties, they may be reluctant to use external mediators. Nonetheless, some hospitals have turned to outside mediators knowledgeable about bioethics and the health care system to intervene in bioethical disputes. It is a commonplace in epidemiological discussions to note that multiple anec-dotes do not equal data. Nonetheless, preliminary anecdotal support for the bene-fits of hiring independent mediators in bioethics disputes comes from the recent experience of a team of mediators, Chris Stern Hyman and Marc Fleisher—both attorneys, both knowledgeable about medicine—hired by medical institutions to mediate particularly difficult cases that had pitted patient, family, and care team against each other. Hyman told author Carol Liebman in a July 2002 conversa-tion that both the mediator team and the institution were comfortable with the arrangement. Further studies are needed, however, on the relative merits of the in-house and the independent mediator.

The Importance of the Chart Note The chart note communicates the salient characteristics of the bioethics dispute, whether it has been resolved, and if so, how. The chart note is important to the process of care. As shifts change, new staff must be able to understand whether the dispute remains and where the parties stand. If a resolution has been reached, the health care team needs to know the terms and conditions of the agreement. The chart note is the only effective and certain way to communicate all the critical pieces of information about a case among and between the teams and profession-


als. The chart is a legal document defining the reality of care. Because by law only hospital personnel can write in it, the effectiveness of the noninstitutional media-tor is limited. However, institutional administrators could certainly approve a note written by a mediator about a conflict and place it in the chart (see Chapter 6).

Hospital StaffIn general, the strategy that has worked best in training for bioethics mediation has been to teach the process of mediation to professionals already knowledge-able about bioethics. Nurses’ consistent involvement in patient care and their understanding of the day-to-day details of care make them excellent candidates, though in many institutions nurses are not in positions of power and therefore as mediators might lack credibility with physicians, at least initially. Increasingly, however, nurse practitioners and nurse administrators are assuming greater respon-sibilities for patient care and thus are more likely now to be accepted as mediators by their physician colleagues. Furthermore, recently trained physicians are more accustomed to collaborative practice with nursing colleagues. As with all emerging and evolving solutions, nurse bioethics mediators will likely be more welcome in some hospitals than in others. Physicians willing to spend the time necessary to be trained as mediators and to conduct mediations, as well as social workers, clergy, and psychologists, should also be considered as potential bioethics mediators. Both the process and the professions will have to find their way. Some personnel within the hospital structure may be less good candidates to become bioethics mediators. Risk managers and hospital attorneys who have re-sponsibility for possible future litigation, for example, have very particular roles in health care institutions, primarily representing the hospital and protecting it from possible future liability. However, hospital attorneys and risk managers are finding it useful to participate in mediation training in order to understand the process, use mediation skills to avoid conflict after an adverse medical event, be in a better position to direct developing disputes to mediation, and be able to participate ef-fectively in the process. Consider the following example. A patient’s family wishes him to remain in the hospital rather than be transferred to a nursing home, despite the staff’s con-cluding that he no longer requires treatment in an acute care setting. The family believes that the care in the hospital is superior and more likely to prolong the patient’s life; in addition, the nursing home is quite distant, which would make family visits difficult. In the staff’s view, the patient’s continued presence is a mis-use of resources, depriving other patients of needed attention and creating a fi-nancial drain on the hospital, which is no longer being fully reimbursed for the bed. The hospital counsel’s function in this case is to assist in the removal of the patient from the hospital as quickly as possible, using court intervention if nec-essary. But since litigation is expensive and may produce negative publicity, the attorney might try to negotiate a compromise, using some of the same skills as would a mediator. The resulting compromise might resemble the arrangement that a mediator would encourage the parties to agree to on their own, but the at-


torney must make it clear to the family that he or she represents the interests of the hospital in this process. Consider also a dispute that arises between a patient’s internist and the director of the surgical intensive care unit where the patient is being treated. The internist believes the patient should be removed from life support; the surgeon is opposed. In this situation, the function of the hospital attorney is to determine the legal au-thority in support of each side’s position. If the law supports the internist (e.g., the patient has left an advance directive covering these circumstances), the surgeon will be instructed to honor that request or transfer the patient to another treating physi-cian; if he or she refuses, senior administration will be asked to intervene. Although mediation skills may be important in managing this particular dispute, the hospital attorney’s role in most instances is more analogous to that of an arbitrator or judge than to that of a mediator.

Ethics Committees versus ConsultantsEthics committees vary enormously, depending on the status of their members (a committee that includes the chairperson of surgery is a powerful committee), as well as on their education and training. The power of an ethics committee also depends on the relation of the committee to the sources of institutional power and the degree to which the corporate structure protects its independence. Some ethics committees are skilled, committed, interested, and courageous. But some are con-trolled by administrative forces in the institution and have neither independence nor intellectual mettle. Moreover, mediation by committee would require training all the committee members and then arranging them in such a way as not to over-whelm the other participants. The first requirement seems unlikely and the second impossible—and even if possible, a bad idea.

Co-mediation versus the Single MediatorThe co-mediation model doubles the chance that all important information is heard, interests identified, and issues framed in a way that lets all participants hear what is being said (see Love and Stulberg 1996). In bioethics mediation, where issues are complex, feelings are intense, and many players are often involved, co-mediation is the preferred model (for a situation in which co-mediation was in-valuable, see Chapter 8). Unfortunately, the reality of limited resources means that most bioethics mediators work alone.

Who Can Request a Bioethics Mediation and Who Must Participate

Traditional clinical medical consultation takes place when the attending physician requests the diagnostic or therapeutic judgment of a colleague, usually selected from a list of experts in the appropriate subspecialty. In contrast, clinical ethics consultation requests should be permitted to come not only from the attending


physician but also from nurses, social workers, other members of the team, a family member, or the patient. The consultant who is invited by someone other than the attending physician fits into an evolving pattern in the modern hospital setting. As hospitals become more concerned with issues of cost, quality, safety, and patient satisfaction, they are less constrained by the notion of the attending physician as the unquestioned final authority. The notion of the “uninvited consultant” is be-coming more common in medicine (Blustein, Farber-Post, and Dubler 2002, 47–56). The engine of consensus is a powerful one that can pull the care plan in new directions. Despite the initial nonparticipation in bioethics mediations of some of the players—including, in very rare instances, the attending physician—as the discussion goes on, all concerned usually join in. When they all do not, the attend-ing physician must agree in the end to implement the plan; grudging agreement will be as effective for this purpose as enthusiastic support. In this sort of case, the consultant assumes the role of advocate for the consensus. One caveat, however: if someone other than the attending physician calls the consult, the first step of the mediator is to contact the attending physician and, if possible, secure his or her cooperation and participation.

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4

The Stages of Bioethics Mediation

This chapter introduces the stages of a typical bioethics mediation, mediator ac-tivity at each stage, and the ways mediator skills can be helpful in dealing with bioethics problems. Its purpose is to describe the mediation process and show what mediators do to make the process work.

Overview of the Stages of Bioethics Mediation

Mediative bioethics intervention is a fluid process. To provide structure for dis-cussion and training we have divided the process somewhat artificially into eight stages. Be warned, however: in real life, events never proceed in a predictable and orderly manner.

Stage 1: Assessment and preparationStage 2: Beginning the mediationStage 3: Introducing the patientStage 4: Presenting and refining the medical factsStage 5: Gathering informationStage 6: Problem solvingStage 7: ResolutionStage 8: Follow-up

Our descriptions represent a meld of traditional ways of describing mediation as a process that takes place in stages (Moore 2003, 66–70) with an analysis of what happens in actual bioethics mediations. Although the activities included at each stage may appear to be distinct and sequential, most mediations are far from linear.

They tend to move through phases in which each party may be at a different stage. For example, some participants may be ready to start problem solving while oth-ers are still intent on making certain their views of the situation have been heard. Moreover, participants often circle back to earlier stages of the process, especially as they near the time when they must make difficult decisions. Similarly, the mediator may take steps throughout the process that are described here as characteristic of a


particular stage. These stages describe what typically occurs during bioethics media-tion when the mediator is an employee of the hospital. The entry activities required of an external mediator are not discussed in this book. This step-by-step guide for mediators includes suggestions about where they may want to make changes and enough theory to guide the variations. In any particular case, steps might occur in a different order and some steps might be eliminated entirely. Interventions that are critical in one case might be counterpro-ductive in another. Paramount at this point, however, is understanding the goals of each stage and the techniques that can best be used to accomplish each goal. Throughout the process, mediators play multiple roles: convener, amplifier, coach, guide, process manager, information gatherer, referee, seeker of common interests, facilitator, reality tester, and empathizer. Bioethics mediators also take on the additional roles of norm enforcer and staff educator. During all stages of a bioethics mediation, the mediator has certain overriding obligations that arise from the intimidating nature of the medical setting and the tremendous imbalance of power and education that separates patients and fami-lies from staff. The mediator must manage the negotiation; prevent the staff from ganging up on the patient and the family; ensure that family members, increasingly supported by legal counsel who may be intimidating to the medical team, do not distort the medical realities and possibilities; and provide the neutral space that permits a principled resolution to emerge. Throughout the process, the mediator maintains an impartial stance by having no investment in any specific outcome, by facilitating discussion among all the parties, by identifying the sources of the conflict, and by maximizing the options for resolution. Although bioethics mediation works within a legal framework and the bioethics mediator does provide information about the governing legal rules (as we will see in Jennifer’s case), it is not useful for the bioethicist, when in the role of mediator rather than consultant, to offer complicated legal analysis. In the rare situations in which detailed legal analysis is required, a legal expert can be invited to participate or to counsel one of the parties outside the mediation or to make a presentation during a subsequent mediation session. Likewise, the bioethics mediator should not offer therapeutic counseling. Again, experts can be called on for this purpose, but it is important that the parties not confuse the role of the mediator with that of other experts. The following case illustrates some of the difficult issues typical of bioethics mediations.

How the Process Works: Jennifer’s Case

Jennifer was an eighteen-year-old patient who had been hospitalized many times for complications arising from Von Recklinghausen’s (elephant man) disease. This disease causes huge and unsightly tumors all over the body, internally and exter-nally. Not only is the condition disfiguring but also it interferes with the function of various organ systems and is often life threatening. This particular hospital admission was made necessary by the growth of a tu-

The Stages of Bioethics Mediation 45

mor that had developed on Jennifer’s neck, closing off the trachea and preventing her from breathing without mechanical support. She had entered the hospital and been put on a ventilator immediately to prevent suffocation. Diagnostic tests de-termined that it would be possible to remove enough of the tumor surgically to enable her to breathe on her own. However, discussions with Jennifer indicated that she did not want the surgery, despite its promise of relief. Carefully commu-nicating by pad and pencil, she explained that she had suffered enough with the disease and wanted to reject the surgery. She realized that the result of her refusal would be death. Her attending physician in the intensive care unit wrote the following note in the chart: “Patient is an adult and is capable of choosing the kind of care she wants. She should be removed from the intensive care unit and placed in a private room to die. Morphine should be provided when needed.” The primary care physician called for a bioethics consult, stating: “I don’t see any difference between this action and that of Dr. Kevorkian. How can we do this and help her to die? Isn’t that assisting in a suicide?” The bioethics consultant convened all the parties for a formal mediation. In addition to Jennifer (who had requested that her parents not be present) and the two physicians, the meeting included the primary nurse, the social worker, the pain specialist, and a member of the liaison psychiatry service. The psychiatrist was invited at the suggestion of the mediator, who felt that a formal evaluation of Jen-nifer’s decisional capacity might be useful for the upcoming mediation. The bioethics consultant, acting in the role of mediator, began the meeting by describing the telephone call that she had received the day before and her sense that all the involved care providers ought to meet. The primary care physician reviewed Jennifer’s history and present condition and renewed his argument that letting Jen-nifer die was assisted suicide. Jennifer’s intensive care unit physician reported that Jennifer had stated that she had suffered enough and was no longer interested in living under these conditions, a position that seemed to him eminently rational. The liaison psychiatrist, supported by the nursing staff, indicated that Jennifer was lucid and very knowledgeable about her condition and was neither clinically de-pressed nor suicidal. She had, in fact, considered the alternatives and had decided that the pain and anguish of surgery, which would likely remove the immediate threat of death but would still leave her in a great deal of pain, extremely disabled, and very disfigured, were not worth the gain in extra days, weeks, or even months of life. The social worker explained that Jennifer’s parents had been present at all of the conversations and were in agreement with their daughter, as was her priest. The mediator explained that historically both medical ethicists and the courts had dis-tinguished between suicide, characterized by the intent and the inception of an act designed to bring about death, and a refusal of care that, as in Jennifer’s case, might lead to death. In the latter case, the patient is not choosing death (most patients, even those who refuse care, do not want to die) but rejecting the pain and suffer-ing of the intervention. The mediator pointed out that this right of a decisionally capable patient to refuse care in the face of life-threatening illness is grounded in


the common-law right of self-determination and in the right of liberty protected by the Fourteenth Amendment to the U.S. Constitution. It is also grounded in the philosophical notion of autonomy. The mediator further distinguished the acts of Dr. Jack Kevorkian, whose pa-tients would not have died from an underlying condition by refusing care. For these patients, only an aggressive intervention to interrupt functioning organ sys-tems could bring about death. The staff seemed comfortable with this explanation but were still uncomfortable with the order to “move her to another room and let her die.” The nurses, in particular, were distressed by the notion that Jennifer would die, when her condition, at least in the short run, was remediable. The mediator then asked what possible scenarios existed for Jennifer once the ventilator tube had been withdrawn. The discussion produced a range of care op-tions, all focused on the use of morphine, and uncovered the providers’ fears that the appropriate use of the drug might hasten Jennifer’s death. In addition, the nurses were particularly concerned that Jennifer would die alone, away from the staff she knew and was comfortable with. The primary care physician remained leery of “causing” death. In response to the concerns of the nursing staff, the mediator asked for a meet-ing with only that staff. In the meeting, the nurses first stated that their ethic of care required that they care for Jennifer according to standard protocols that sup-ported life and not death. But, the mediator argued, this is a dying patient; there was nothing they could do to change the outcome. Further discussion revealed that the nurses felt that their real obligation was to show respect and give comfort, and their core commitment was to staying with Jennifer so that she would not be alone and abandoned during her dying hours. The mediator reconvened the larger group and suggested that a consensus on a care plan had been reached. Since the death would likely be quite speedy and would therefore not amount to an unjust squandering of scarce resources, Jennifer could be permitted to remain in the intensive care unit until she died, with con-tinued staff support from the people she had known. The mediator further com-mented that the U.S. Supreme Court has held, in an opinion on physician-assisted suicide, that the provision of adequate pain control, even if it hastens death, is not a violation of law and that both the American Nursing Association and the Ameri-can Medical Association have ethics opinions on record stating that the secondary effect of hastening death should not be a barrier to the necessary and effective use of pain medication. This opinion, she stated, in continuing her education of staff, was also supported by the bioethics and the religious literature. Finally, she re-minded staff of a recent article in which polled medical staff agreed that the single greatest abuse of patients is the inappropriate withholding of pain control at the end of life. The ethical issue, she suggested, would be generated by withholding ef-fective pain control, not by providing adequate analgesia. The staff talked about their commitment to this patient and their feelings of failure and frustration at her impending death. Not everyone was totally comfort-able with the conclusion reached. Some of the nurses still wanted to try one last time to persuade Jennifer to undergo surgery, and one of the nurses did engage in


this effort, although gently. All felt, however, that they could accept Jennifer’s final decision. The mediation closed with agreement on a care plan that would permit Jennifer to remain in the intensive care unit until her death and would ensure that she received sufficient morphine to relieve her discomfort during the dying process.

Stage 1: Assessment and Preparation

Assessing the SituationReceiving the consultation request. The bioethicist may either receive an official request for a consult or hear informally about a dispute and take the initiative to ask those involved whether a consult might be helpful. An official request might come from an intern or resident, an attending physician, a subspecialty fellow, a nurse, a social worker, a patient, a family member, or occasionally, an administra-tor. The bioethicist’s first task is to assess the situation to get a preliminary sense of what intellectual, medical, ethical, emotional, and dynamic issues are involved and to determine whether the case is appropriate for mediation.

Evaluating the nature of the dispute. The initial evaluation of the dispute is likely to require sending e-mails or making telephone calls to members of the health care team, reviewing the chart, and quickly convening a meeting of the involved members of the care team. The bioethics mediator should identify the patient, elicit a preliminary notion of the patient’s decisional capacity (or at least identify whether capacity is at issue), determine the existence or nonexistence of family and the family’s level of involvement, and explore the disputed issue as perceived by the referring staff member. Having taken these preliminary steps, the mediator should attempt to deter-mine what is generating the conflict. Is it the personal philosophy of one of the caregivers (most likely, one of the physicians) or the personal philosophy or deeply held religious beliefs of the patient or family? Often the origin of the dispute is the difficulty the family is having coming to terms with the impending death of a loved one. Another common cause of disputes is inadequate communication or conflicting communication among members of the team, but more often between the health care providers and patient or family members. Care providers may give mixed messages about the patient’s condition or prognoses, assuming that someone else will take responsibility for delivering painful information. (From here on, for simplicity, we refer to the bioethics mediator as “the mediator.”)

Gathering information about the medical facts. Before the mediation takes place, the mediator should begin to establish the medical facts. These include con-sensus agreements among the staff about the meaning of the medical narrative, the present data, and the observations of staff regarding the patient’s improvement or deterioration. For the purposes of mediation, a medical fact is an interpretation of data at a particular moment that considers the patient in light of the overall history of the illness. Medical facts have the ring of scientific objectivity, but determining


what counts as a medical fact is a matter of selection and interpretation, a process that reflects normative assumptions. Establishing the medical facts requires as extensive a process as does construct-ing an intervention plan. It often involves, at minimum, reviewing the chart, speaking to individual members of the treatment team, and facilitating a discussion of the patient’s condition at a meeting of all involved medical staff (discussed later, under “Meeting with the care team”). If, as is usual in bioethics mediations, the mediator chooses to meet separately with the care team and also to have an initial brief meeting with the patient or family, he or she should explain the reasons to both, label the separate meetings as the start of the mediating or conflict resolution process, and alert all participants to the need to meet together as soon as possible to begin to talk face-to-face about the resolution. Issues of hierarchical standing among and within departments in the medical center come into play in this step. In the attempt to establish the medical facts, the mediator must try to understand the underlying tensions among the staff and the dynamics of the particular medical service. Most medical centers shelter a series of separate freestanding fiefdoms, all with particular histories and working styles that affect how the facts of the case will be established. Who arrives at the facts makes a difference as well. The patient’s current condition may appear one way when the attending physician or various consultants review the tests and laboratory values, and quite another when the nurses are surveyed. Patients whose laboratory values seem to be improving may nonetheless look to experienced nurses as though they have begun dying.

Establishing the decision history of the case. If the conflict has been going on for some time, establishing the decision history of the case is especially important. Ma-ture cases often involve a patient transferred from long-term care, one for whom discharge planning has been especially difficult, or one who has had a difficult and lengthy course of care in this hospital or in another acute care institution. For example, if a patient has been seen for dialysis at one hospital and was dis-ruptive and difficult to manage, then arrives at a new hospital, the attempts of this new institution to discharge the patient back to the previous site are likely to be unproductive. Any mediator who disregards this history is likely to be consumed by the multi-institutional interests in avoiding problem patients.

Meeting with the care team. A preliminary meeting with the medical staff is al-most always essential to understanding the history and present condition of the patient and a necessary precondition to discussing the medical and ethical options with the patient and family. Conflict between staff and the patient or family may be the result of discussions with consultants or with friends or relatives who prac-tice medicine in other settings. At this first meeting of the care team, the mediator should take the following steps:


1. Ask the attending physician (or, in a teaching hospital, the intern), pri-mary nurse, and most involved social worker to present the case.

2. Identify which staff are involved in the conflict. 3. Begin to gather data on whether the patient is perceived as decisionally

capable, whether there are any advance directives, or whether a surrogate decision-making process is contemplated.

4. If family members are involved, determine who has been most involved until the time of the consult.

5. If no family members are involved, and if the patient is not decisionally capable, determine whether the institution has special provisions for iden-tifying the interests and protecting the rights of incapacitated patients who are without surrogates.

Although there is no argument about whether and when this meeting should take place, in some nonacademic institutions with attending physicians whose presence on the hospital premises is sporadic, it may be difficult to schedule a time when all the medical staff can meet. Nonetheless, the task of establishing the medical facts is so critical to the next stages of the process, and to any intelligent discussion with the patient and family, that the mediator should expend every ef-fort in pursuit of this initial caregiver meeting. If it is impossible to convene the team, it may suffice to allow some members to attend by phone or to hold separate conversations with some members of the team, repeating to each, with permission, the comments of his or her colleagues. This is a poor second choice, however, since clarity about the diagnosis and prognosis is most likely to emerge in the give-and-take of professional observations in a face-to-face meeting. During the meeting with the medical team, the mediator tries to reach agree-ment about the medical facts, the treatment options, the likely prognosis, and the recommended treatment. If agreement on any of these topics is not possible, the mediator tries to help the treatment team agree on how to present the differences and choices to the patient or the patient’s family members. In some situations—if the patient or the family members are already aware of the differences or if the me-diator thinks that participation by the family members will keep the focus on the common interest in the patient’s well-being—the mediator might decide to have the patient or the patient’s family members present from the beginning. But more often the mediator will meet first with the treatment team. Once the mediator has helped the medical staff reach consensus about what will be said and how the issues will be presented—even if they do not agree on the treatment implications—the mediator needs to anticipate issues that might develop as the discussion with the patient unfolds, what questions the patient is likely to ask or want to ask but be timid about raising, and what additional information or support systems need to be available for the patient or family in order to make it possible for them to make a decision.

Meeting the patient and family. The mediator, either before or just after meeting with the care team, should introduce himself or herself to the patient, the patient’s


family, or both, evaluate whether decisional capacity is an issue, learn the patient’s history, and assess the family’s priorities. At a minimum, the mediator informs the patient and the family about the request for a bioethics consultation.

Assessing the time constraints. Timely intervention is critical to the success of many bioethics mediations. If one of the treatment options requires an immediate decision in order to preclude some medical catastrophe, medical necessity might truncate the usual process of mediation. In addition, unattended disagreements tend to fester and worsen. Staff, family members, and patients settle into hardened positions that make movement difficult. In most cases, however, even in acute care settings, time will not be so con-stricted as to warp the process. The mediator should also keep in mind that time is often the ally of an ethically comfortable plan. A preliminary consensus may be reached, for example, if it includes an agreement to reassess the situation in twenty-four or forty-eight hours. If the medical situation does not require an immediate plan, time will often work in favor of agreement. In the increasingly cost-conscious world of acute care medicine, however, where shortening the aggregate length of stay determines fiscal integrity, time is an increasingly scarce commodity.

Identifying areas of uncertainty and gathering more premediation informa-tion. In cases where the medical staff disagree fundamentally on the likely progno-sis, the mediator might, before convening the initial mediation session with the pa-tient, family, and health care team, take additional action to help reach consensus or clarify the disagreement. Interventions that might be helpful include:

• Assemblingthebioethicscommittee,orasubsetofthecommittee,toseewhether new players in a multidisciplinary setting can open new avenues of questioning and agreement

• Involvingthemedicaldirectororsomeothermedicaloradministrativeauthority who might convene all the parties and direct the discussion more forcefully toward a consensus; as a variant, the mediator might ask that the case be referred to a committee within the institution that would be empowered to arrive at a working set of facts for the case. (Both these solu-tions demonstrate, arguably, the failure of the mediative process, but the obligation of the mediator to reach a timely solution may demand such immediate action in order to facilitate the rest of the process.)

• Askingforthepatienttobepresentedasthebasisfordiscussionbythefulldivisional or departmental staff, if the relevant service has regularly sched-uled rounds or conferences

• Askingforaliteraturesearchtoenrichthediscussion

These initial stages of the mediation process vary enormously in their intellec-tual and administrative complexity. Many mediators simply bring the staff together or arrange a meeting with the staff, the patient, and the family and thus facilitate


the identification and resolution of disagreements. Only the most difficult cases, often those with long and complex histories, require the addition of administrative decision makers for limited purposes. Always, however, the involved staff, either by itself or with other individuals or committees, must decide on the facts before the process can proceed. The medical data interpreted by the medical providers’ training, skill, and judg-ment establish the basis for discussions of prognoses; prognoses form the basis for identifying options for care; and the specific options form the basis for mediating various approaches to the appropriate plan of care for the patient.

Preparing for the MediationIdentifying the decision maker(s) and determining whether the patient is decisionally capable. The issue of patient capacity—the patient’s ability to con-sent to or refuse care—is critical. In cases where the patient lacks such capacity, the existence or absence of an advance directive, the appropriate surrogate, and the approved state legal process must all be identified. Every mediator must have a clear, firm notion of how to approach the issue of decisional capacity, including how to raise the issue and how to evaluate the pa-tient’s decision-specific capacity. If the mediator has any doubt about the patient’s capacity, a psychiatric consultation may be in order. In most circumstances, how-ever, the nurses who care for the patient have the best sense of the patient’s capacity and of when the patient will be more or less lucid. Whereas capacity is a clinical judgment, competence is a societal presumption that can be rebutted in a court pro-ceeding. Decision-specific capacity is the capacity to make certain decisions, given their risks and complexity, and not others. As the levels of complexity and risk rise, the level of decisional capacity necessary to address the issues rises commensurately. Thus, a patient may be capable of appointing a proxy (a process requiring a rela-tively low level of capacity) and not capable of choosing among complex medical options. Note, however, that this sliding-scale notion of capacity reflects reality but also, because of its complexity, invites paternalism; if the physician says making a decision requires a higher level of skill than the patient possesses, the patient and the patient’s choice may be disqualified. To further complicate this assessment, a patient’s incapacity may be temporary; the mediator then needs to balance the ur-gency of care with the ideal of patient autonomy. A patient who is capable has the legal right not only to decide about his or her own care but also, in doing so, to make wise or foolish decisions. The mediator should be aware, however, that among the reasons for patients’ refusals of recom-mended care interventions is their misunderstanding of the nature and cause of the condition and about the purpose of the intervention. Lack of trust in the physician may also be the basis for a patient’s refusal. Although capable adult patients have the right to choose whether to consent to or refuse care, many patients cede this authority to others in the family. The fact that patients possess rights does not necessarily mean that they will choose to exer-cise them without the consultation, support, and participation of family members.


The mediator should be aware that in many cases identifying the family as the decision maker and helping the family process the decision may constitute the guts of the mediation. Sometimes the family’s power is demonstrated by a health care power of attorney or proxy. Most often, however, the state law on surrogate choice turns to the family when the patient is no longer capable. If it is the family who gets to decide, then they will largely resolve any remaining ambiguities.

Determining who should be at the table. Once the mediator has met with the treatment team to establish the medical facts, assessed the time constraints, identi-fied the decision makers, and met with the patient, the patient’s family, or both, the mediator must determine who should participate in the mediation. During the assessment process, the mediator has determined who the parties are—the ones with the disagreement. The mediator also knows who has information critical to understanding the situation and who has authority to make decisions. The mediator must consider whether all members of the treatment team should attend the formal mediation or whether only some members of the team should participate. This decision will turn on such factors as team members’ schedules, relationships with the patient and family, and the desire to avoid overwhelming the patient or family with white coats, as well as who can best present medical facts and treatment options, who has power, and who is most emotional or most invested in the case. Given the complex nature of bioethics mediation and the number of involved parties in a hospital setting, one obligation of the mediator is to ensure at the out-set that all the relevant parties are included.

Determining what additional supports are necessary. The mediator should de-termine whether the patient or the family requires additional support persons to help prepare them to forge an agreement about a care plan. In some cases, the patient or family might need discussions with a social worker or assistance from a psychiatrist consultation-liaison service or from clergy for anticipatory bereavement counseling.

Discussing the decision-making process with a decisionally capable patient. If the patient is capable of making medical decisions, it is important to discuss whether there are members of the family or close friends whom the patient would like to involve in the process of discussion and decision making and what limits, if any, the patient wishes to place on discussing the diagnosis and prognosis with these individuals. The doctrine of informed consent is designed to ensure that a decisionally ca-pable patient who has the legal right to decide about care has the opportunity to consider the relevant information—diagnosis, prognosis, risks and benefits of al-ternative treatments—before choosing a medical path. The patient must be capable of making medical decisions and of not only applying personal values to the deci-sion at hand but also communicating the results of this emotional and intellectual


process. Although the literature discusses these issues under the notion of informed consent, the more useful term may be advised consent, which makes it clear that the physician is not the mere conveyor of information but a participant in the decision process whose job it is to advise and guide the patient. So too, although the doctrine of informed consent contemplates and supports the patient’s choosing and provides the legal support for the patient’s choice, it does not sentence the patient to deciding alone if he or she chooses to involve others. Some patients are isolated, have no family, and have outlived friends. For them, the decision of what treatment to accept or reject is a difficult and solitary exercise. Many patients, however, have devoted family and friends who are available and would like to be involved in considering the options for care and in sharing the decision-making burden. Which of these persons should be invited into the process of discussion and decision is a choice for the patient to make. Members of the care team can help by raising these issues and offering the patient various options for participants in the discussions.

Identifying family members and friends who may seek to participate in deci-sions. Some families form a coherent whole and it is clear what the relationships are and how the emotional architecture of the family has been constructed. In other families the relationships are uncertain and contested. If, for example, a patient is separated from her legal spouse and another man claims to be her common-law husband, and if discord and disagreement exist between these two men about what the patient, who is now moribund, would have wanted, which of them has the right to speak for the patient must be determined before the conversation about a care plan may go forward. If there is disagreement among adult children about the preferences or prior stated wishes of a now-incapacitated patient, these issues must be sorted out before a plan for deciding can be established (see Chapter 18). Such issues themselves can be matters to be separately mediated or subjects for caucuses. Intrafamilial conflict is one of the most toxic and disorganizing elements of a dispute. Sometimes it can be mediated; sometimes it is intractable. The mediator may need to request a decision from legal counsel regarding which member of the family is the legal decision maker.

Arranging a location for the mediation. Mediators often have limited choices about room setup or seating arrangements and must settle for an empty patient room (see Chapter 8). Nonetheless, it is useful to be aware that the location of a mediation can have an impact on the process. For example, removing participants from their normal workplace to a neutral setting where they are unlikely to be interrupted can aid their focusing on the problem. Further, going to a different location can indicate that the mediation process is a new way of addressing the problem. But in some cases it can be helpful to conduct the mediation in a familiar setting where the participants are more likely to feel comfortable. Intensive care mediations must almost always be conducted on site, since staff cannot leave pa-tients and electronic monitors.


Beyond location and setup, other logistical issues include whether to meet around a table, how to arrange seating, and whether to provide materials such as an easel, calculators, or paper and pens. The mediator may have little choice about the shape and size of the table. A round table is ideal but not usually available. The size of the table makes a state-ment about formality. A large table may create undesirable distance between the parties or the parties and the mediator, but it may also establish a zone of safety by separating feuding parties. Seating arrangements also are significant, especially in bioethics disputes, which involve several parties. The mediator must decide whether to break up unproduc-tive alliances, increase the comfort level of participants by seating them with sup-porters, or encourage new channels of communication by seating people next to those with whom they might have differences. Mediators also should think about who they want talking to whom informally during breaks and try to arrange seat-ing to support those choices. While mediators may influence communication dynamics by arranging seat-ing, they may instead choose to allow participants to select their owns seats. Where parties choose to sit often gives the mediator information about connections and aversions and, in a multisession mediation, changes in seating patterns can give the mediator important clues about shifts in positions and changing alliances. Finally, the mediator should be sensitive to the needs of the patient or patient’s family when arranging seating. It may be helpful to seat them next to members of the treatment team with whom they have the best rapport.

Stage 2: Beginning the Mediation

Once the mediator has completed the preliminary steps of assessing the situation and preparing for the mediation, he or she moves to Stage 2. In this stage, the mediator usually convenes a meeting of all participants, which mediators refer to as a joint session, and begins to work intensively with the staff, as well as with the patient and family. In a variation of the caucus procedure, the mediator is likely to have already worked with each group separately, to lower the intimidation fac-tor for the patient and family and to deal with differences among members of the treatment team (for a discussion of the caucus procedure, see “Holding Caucuses” in Chapter 5 under “Generating Movement”). At this stage the expertise of the mediator in managing the mediation process and integrating bioethical principles and legal rules becomes central.

IntroductionsMost mediators begin the mediation session by inviting the participants to intro-duce themselves to the mediator and to the other parties. Taking time for introduc-tions, or reintroductions, offers a safe, comfortable opportunity for all participants to speak and demonstrates the way the mediator plans to slow down the conversa-tion and check assumptions throughout the mediation session.


The participants can simply identify themselves by their name and their role in the case and state how they would like to be addressed; on a more sophisticated level, they can tell the other participants what they would like them to know about who they are, from facts about their lives to statements about their values, feelings, and goals.

The Mediator’s Opening StatementIn an opening statement, the mediator explains the process, sets the tone for the discussion, and begins to build trust (see Lewicki and Wiethoff 2000). Through-out the process, the mediator works to empower parties to reach agreement (or to make an informed choice to pursue nonagreement alternatives); help parties clarify their own goals and priorities; achieve understanding among the parties; and find a fair and wise solution that is stable and durable. To achieve these goals, the mediator must gain the trust of the parties; demonstrate impartiality, credi-bility, and authority; and create a safe, comfortable environment. The tone of the mediator’s opening statement and the clarity of his or her explanation of the pro-cess, of participant roles and responsibilities, and of ground rules sets the stage for productive problem solving (for examples of opening statements, see Chapters 16–19). The bioethics mediator’s opening statement differs somewhat from the standard opening statement in classical mediation because the bioethicist lets the partici-pants know that he or she is an employee of the hospital and may offer opinions on ethical and legal issues. Also, the mediator notes in the opening statement that confidentiality in bioethics mediation differs from that in classical mediation (see Chapter 2). This statement usually covers the following topics.

The mediator’s role. The mediator is impartial and will not take sides or advocate for a particular outcome. The mediator is not a judge and will not say who is right and who is wrong, or tell the parties what to do. The mediator will try to under-stand each participant’s concerns and goals and help the participants understand each other’s views and plan for the future. So, for example, it would be appropriate to begin a bioethics mediation by introducing oneself as “the mediator,” saying something like: “I am often called in difficult cases where there are differences of opinion to see whether there is some common ground all can live with. I want to help you figure out what the physi-cians and nurses think is happening with your mother, what treatment options are available, and what they think should happen in terms of care planning.” This is the opening to the patient and family, and we suggest strongly that the mediator meet separately, in advance, with the staff.

The process. The mediator begins by asking the patient or a family member to introduce the patient and talk about their concerns and then turns to a member of the treatment team to present the medical facts, inviting other team members to add information. Next, the mediator invites the participants to explain their concerns and views of the situation. Then the mediator summarizes what she or he


has heard, asks clarifying questions, and helps participants come up with options, evaluate the options, and decide on solutions that will work for all participants. Families need to know that the process is ongoing (that they will continue to be consulted) and that whatever is decided in this meeting can be changed if the medical facts change in the future. The process can encourage an open discus-sion among all interested parties about various options or can clear up conflicts or ambiguities.

Goals. Most family members and patients and many caregivers have never participated in this sort of process. It is important that the mediator help them understand that the purpose of this mediation is to arrive at a treatment plan that all can approve, that meets the medical needs and value preferences of the patient, and that satisfies the legal responsibilities of the institution.

Disclosure. The mediator indicates what information he or she has received prior to the mediation and also reveals any prior contact with any of the par-ticipants. When applicable, the family should be informed that the mediator has already met with staff for the purpose of helping them discuss the diagno-sis and prognosis.

Ground rules. Most mediators ask the parties to listen to each other respect-fully and without interruption, while assuring them that each will have a turn to speak. It can be helpful to acknowledge that the parties may have strong feelings or may be angry.

Confidentiality. The mediator should inform the participants about confiden-tiality and its limitations in the hospital setting. In classical mediation, parties are assured that what is said in mediation will not be shared with anyone outside the process (or outside the program sponsoring the mediation). In the hospital setting, the welfare of the patient depends on information being shared among all those involved in treatment. Blanket promises of confidenti-ality are therefore inappropriate. However, depending on state law, the media-tor may be able to assure the participants that anything said in the mediation cannot be used should litigation ensue.

Final points. The mediator may want to explain (briefly, at this point) what will happen at end of the process: if the parties reach agreement on a treat-ment plan, it will be entered in the patient’s chart; if there is no agreement, alternative processes for making a decision will be explained.

Questions. The mediator’s opening statement should end with an invitation to the parties to ask questions about the process.

Once the mediation begins, the mediator should be alert to indications that the patient, family members, or members of the health care team are uncertain about


how the process works and explain the mediation goals and procedures throughout the process.

Stage 3: Introducing the Patient

In many bioethics mediations, the key player, the patient, is not present. But re-gardless of whether the mediation involves only the medical team or the team and the family, the mediator should provide an opportunity for the absent patient to be introduced. Too often in the hospital setting, the full sense of who the patient is gets lost (see box, “Yes, She Does Seem to Have Been Someone . . .”). Making sure the absent patient is introduced has a number of benefits:

• Itremindseveryoneofwhytheyarethereandoftheircommoninterestinthe well-being of the patient.

• Ithelpsleveltheplayingfieldbyshowingthatwhilethemedicalstaffmembers are the experts in medicine, diagnosis, prognosis, and medi-cal possibilities and probabilities, the family members are the experts on family history and the patient’s values.

• Itassuresfamilymembersofthemedicalteam’sconcern.• Itmayprovideimportantinformationaboutwhatthepatientwouldwant.• Itmayhelpthefamilymembersclarifytheirfeelingsandgoalsandsepa-

rate their own emotional reactions from decisions about what the patient would want.

• Ithumanizesthedecision-makingprocess.• Itmaybringoutthefactthatthereisanadvancedirective.• Ithonorstheexpertiseofthefamilymembers.

“Yes, She Does Seem to Have Been Someone . . .”The novel Moon Tiger, by Penelope Lively, opens with the elderly narrator in the hospital and reports a conversation about her between a nurse and a doctor:

“Was she someone?” enquires the nurse. Her shoes squeak on the shiny floor; the doctor’s shoes crunch. “I mean, the things she comes out with . . .” And the doctor glances at his notes and says that yes, she does seem to have been someone, evidently she’s written books and newspaper articles and . . . um . . . been in the Middle East at one time . . . typhoid, malaria . . . unmarried (one miscarriage, one child he sees but does not say) . . . yes, the records do suggest she was someone, probably.

Penelope Lively, Moon Tiger (New York: Grove, 1987), 1–2.


Letting the family speak first to tell the team what the patient was like before she got sick—how she liked to spend her time, what her values were—makes it clear to all that the family has information and views that are critical to the discus-sion. The family may be learners in the medical field, but they are the experts on Mama. If the mediator meets with the medical team before the initial mediation session with the team and the family, it is helpful to give the team a heads-up that the mediator will start with the family and will then turn to them for an explana-tion of the medical facts (see Chapter 5 for a discussion of stada). For the reasons just stated, this ordering of initial speakers reflects a change in our thinking about the preferred order of speakers since the first edition of the book, when we recom-mended that the mediator begin by asking a physician to state the medical facts.

Stage 4: Presenting and Refining the Medical Facts

Once the mediator has explained the process and given a family member the op-portunity to introduce the patient, he or she begins the discussion by asking one of the doctors to describe the case and the patient’s history. (In an academic setting, this is usually the intern; in other settings, it is the physician with the most contact with the case.) The mediator may then ask the senior doctor to relay whatever consensus exists on the medical facts (reached at the initial meeting of the media-tor and the team), emphasizing the prognosis. (If staff members disagree about the medical facts, the mediator should have the members of the treatment team explain these differences.) Once the medical facts have been stated clearly and completely, the bioethics mediator moves on, and like the classical mediator, gives each par-ticipant the opportunity to speak about his or her concerns, and helps the par-ties identify interests, discuss options and principles, evaluate the options, explore preferences, and make decisions about the future. In classical mediation, one of the functions of the parties’ opening statements is to allow them an opportunity to ex-press strong emotions in a safe, controlled setting. But the mediator must be aware that allowing this opening to become an opportunity for uncontrolled venting can be counterproductive and actually increase anger rather than provide for the release of strong feelings (see Allred 2000). When the discussion turns to the medical facts, it is important to have a physi-cian make the presentation. Asking the family their view of the patient’s condition tends to lock the family members into uninformed positions. The notion of medi-cal uncertainty is central to all medical decision making and to discussions of prog-nosis. Nonproviders, however, are unaccustomed to the concept, and medical staff often do little to acquaint them with the central place of uncertainty in the practice of medicine. Many providers present the options for care as if each one were as clear and unambiguous as the route of a major interstate highway on a road map. One of the mediator’s most important tasks is to help patients and families under-stand the uncertainty that surrounds diagnosis and treatment. This understanding is a precondition to considering options about care and a critical basis for accepting the outcome, especially if it is the death of the patient.


Obtaining a statement of the medical facts when appropriate has five advan-tages. First, as in the opening sessions of all mediations, the initial description of the situation provides a common base on which to build future discussions. Second, it allows those who have additional information to provide it. Third, it sets the stage for clarifying questions by others at the table. For example, the social worker may have questions about the patient’s condition or prognosis that he or she needs to have answered in order to develop a discharge plan. Fourth, the simple pulling together of the medical facts may make it clear that controversial treat-ment or discharge plans are not going to work, so that what seemed to be a serious area of disagreement simply disappears. Finally, providing a clear explication of the medical facts can sometimes eliminate the conflict, especially in situations where they have not been effectively communicated to the family. All bioethics consultants, no matter what their preferred process, agree that good ethics begins with good facts. Medical facts, in general, are difficult to estab-lish. The very concept of differential diagnosis implies multiple possible explana-tions for the etiology of certain conditions. Medical staff often disagree about the origin of a medical condition, the present meaning, and the likely prognosis. So, for example, the patient’s kidney function may not be optimal but may be either improving or worsening. It may be that a new medication has caused the problem and that when the medication has been discontinued, the ability of the kidney to function more or less normally will return. Or it may be that the kidney itself is damaged, or that its lack of function reflects problems with other organ systems. The reason for kidney failure will determine how the failure relates to the patient’s present condition and likely prognosis. The complexity of this process means that determining the facts may involve a lengthy and uncertain chain of discussions. In the course of these discussions, the understanding of the medical facts is refined. Some so-called medical facts, such as the patient’s history of compliance or noncompliance with care plans, are even more difficult to establish. Consider, for example, the following two sets of facts:

1. A patient with infectious multi-drug-resistant tuberculosis refused to remain in his room in the hospital, wandered into the hall, and was finally restrained to prevent him from endangering the other patients and staff.

2. A patient with infectious multi-drug-resistant tuberculosis was put in a negative-pressure room to ensure maximum protection for the other patients and staff. The room was cold, and the patient was denied extra blankets. He was provided with neither a radio nor a television and he had nothing to read. There was no telephone in his room and he ventured into the hall periodically to use the telephone there.

In the first statement of the facts, the staff would be entirely within their rights to restrain a dangerous patient to prevent harm to others. In the second, the best course is less certain. The staff might still need to act to protect others, but they would also need to meet the needs of the patient and satisfy the demands of a just solution.


The bioethics mediator brings a unique epistemological filter to resolving dis-putes. Mediators, in general, must focus on interpreting facts as proposed by the parties. Shame, denial, self-interest, embarrassment, and fantastical thinking often prevent the participants in mediation from making clear presentations. A success-ful mediator must process the information provided and help the parties evaluate their own positions realistically against a normative notion of reality. This inter-pretation of facts is by no means unique to bioethical mediation. What bioethics mediation adds is the idea that the facts themselves are evolving constantly as the process unfolds. Most bioethics mediations involve patients whose medical condi-tion is uncertain or unstable. What seems to be the reality about diagnosis and prognosis on one day may be totally different on the next. This shifting basis for discussion represents one of the more frustrating contexts for the bioethics media-tion process. During this fact-eliciting stage, the mediator must always keep in mind that “the doctor speaks doctor and the nurse speaks nurse and nobody speaks patient” (Marcus 1992). Medical care providers commonly think in terms of organ func-tion, although some frame the issue in more holistic terms. But it is relatively alien to medical culture to disaggregate the care discussion in terms of the parties and their coinciding or conflicting goals and perspectives. The mediator must bridge the linguistic, cultural, ethnic, and professional gulf that often separates patients and families from providers. It is the task of the mediator to speak to the patient and the family in language they can fathom, using concepts they can understand. The mediator must also take into account that different cultures and different ethnic groups have very different patterns of communication (for a dramatic and beautifully written story of cross-cultural miscommunication in a medical setting, see Fadiman 1998; see also Chew 2001; Kimmel 2000). Speaking with an Asian family, for example, may require very different conventions of discourse from those used in discussing difficult issues with an African American or an Italian Ameri-can family. And, of course, all families have their own habits of communication, as well as a private culture known only to them. The mediator must be sensitive to all these issues in helping the family understand the medical facts and options and articulate their values, preferences, and wishes. In this cacophony of voices, all the parties are likely to express the idea that they are speaking for the patient. But it is important to separate the song lines in this chorus of voices to see whether the patient is capable of sufficiently strong self-expression or whether some amplification of his or her voice is required. The physi-cian who advocates for the patient might really be advocating for his own solution. The nurse might actually be in pursuit of administrative order. The family member may be in pursuit of dysfunctional or scapegoating arrangements that have long been in place. One might think that a patient’s advance directive would be just the vehicle for bringing the voice of the patient to the table. Experience shows otherwise. Living wills, which would seem best suited to helping the parties reach a decision in any specific case, are often close to, but not actually on, the decision target, leaving considerable discretion to the physician who must decide whether conditions de-


scribed in the living will—for example, “comatose”—has been satisfied. Although living wills are less likely than in the past to offer such incomprehensible phrases as “no heroic measures,” they are likely to say something equally difficult to interpret given the changing nature of medical facts, such as, “if I am unable to make deci-sions and my doctors say that I will not recover.” The appointment of a surrogate decision maker or proxy is generally, but not always, more effective than a living will in bringing the voice of the patient to the table. Even if one member of the family is appointed as the proxy, family dynam-ics, as much as the voice of the patient, are likely to determine what the proxy will share with the care team in terms of the patient’s characteristics and statements. Dysfunctional families tend not to improve when confronting life-and-death deci-sions. What Mama said is likely to be less important than the family’s consensus about what she might have wanted in the context of an outcome they can live with (for a robust and engaging review of the conflicted role of proxies and the obli-gations that care providers have to these greatly burdened emissaries, see Dubler 1999).

Stage 5: Gathering Information

Once the mediator has given the opening statement, allowed the family members to introduce the patient, and elicited the medical facts, he or she invites each party to speak. Then the mediator summarizes what has been said, checks to be sure that the summary is accurate, and begins to ask questions in order to explore and clarify underlying interests.

Inviting Statements by ParticipantsA good strategy in this stage is to let each party speak without interruption (even by the mediator) until each has explained his or her view of the situation and concerns. As the parties speak, the mediator listens for issues, interests, and feel-ings, keeping in mind that a person’s interpretation of information is based on individual values, life experience, and perception. Using the techniques and tools discussed in the chapters that follow, the mediator helps the parties create a mutu-ally acceptable definition of the problem and of the issues and interests that should be discussed. Only when the parties agree on what the problem is can they begin to work toward a creative solution.

Identifying Issues, Interests, and FeelingsThe mediator must keep in mind, while listening to the parties, that people in conflict are likely to present their stories in the form of threats and generalities (as Margaret Shaw suggested in a mediation training program at Tsinghua University in Beijing in 2000), taking positions about how they want the problem solved and then digging in and defending those positions. Often the positions that parties take do not address all the issues and fall far short of satisfying their interests. Thus, when all the parties have spoken, the mediator provides an initial summary of the


information, reframing it in terms of the issues, interests, and feelings rather than simply repeating parties’ positions. The mediator’s task is to probe deeply enough to identify the underlying interests of the parties and the issues that must be re-solved in order to satisfy those interests. Parties to disputes often assume that the rules and principles that apply will inexorably lead to a single conclusion. But the parties may possess incomplete in-formation; in addition, the medical facts, especially the prognosis, and an accurate medical and psychosocial history are often difficult to uncover. Thus, for example, a patient’s refusal of care may be based on his relative penury, his lack of trust in the provider, or his misunderstanding of the risks and benefits of the proposed in-tervention. Only knowledge of the context and investigation of the actual circum-stances—both the issues and the interests—can produce a fair and just result in an individual case. Issues are the concrete things—behavior, allocation of resources, or future ac-tion—that must be dealt with in order to solve the problem. Interests are the con-cerns or needs of the parties that are threatened by failure to resolve the issues and that must be satisfied if the solution is to be workable. Interests tend to be substan-tive, psychological, or procedural. Substantive interests might involve goods, time, money, or other resources. Psychological interests typically involve respect, safety, and face-saving—how parties feel about what they experienced. Procedural inter-ests focus on being heard and feeling a decision was made fairly (Menkel-Meadow 2001). Once the mediator has identified the issues and interests and summarized them to be sure that nothing has been omitted, he or she then sets the agenda for the dis-cussion by proposing which issues to discuss and in what order. Classic mediation might address, for example, the case of a complaint about noise from the apart-ment upstairs that escalated into a screaming match the next morning in front of the neighbors; the issues are the sounds coming from the upstairs apartment and the ways the neighbors communicate. The interests of the downstairs neighbor may be getting enough sleep, having quiet when her children are doing their home-work, and being treated with respect by her neighbor. The upstairs neighbor’s inter-ests might include being able to live as she chooses when in her apartment, having her children able to play without fear of the downstairs neighbor, and also being treated with respect. In bioethics cases, issues are likely to include the number and intensity of interventions and the desire of the family to ensure the comfort of the patient. How does the mediator decide what to attend to and what to ignore? The me-diator is constantly trying to clarify what is important to the participants. People do not always list issues in order of importance; in fact, they often bury the most important information because they feel it is sensitive, they fear it will not be cred-ited, or they do not realize its significance. So if they list four issues that are impor-tant to them, the fourth may be the issue to which they give highest priority. The mediator should be aware of this possibility when determining how best to assist the parties. This knowledge may also help the mediator assess what represents use-ful information.


Identifying InterestsA seventy-eight-year-old patient with undetermined and possibly fluctuating capacity is refusing cardiac bypass surgery that her surgeon states is immedi-ately needed to avoid death. She does not want to die but states that she does not feel bad, has things to do at home, and will not agree to surgery now. “Maybe later,” she says, “when I am sicker, but not now.” The issue is whether this woman has the mental capacity to make this choice, which will certainly put her life at risk. The parties and their interests include

• thepatient,whoifcapacitatedhasaninterestinself-determinationand autonomy, and if decisionally incapable has an interest in being protected from her own inadequate cognition and consideration

• thepatient’schildren,whohaveaninterestinkeepingtheirelderlymother alive;

• thecardiacsurgeon,whohasaninterestinpromotingthebestinterestof the patient; and

• theconsultingliaisonpsychiatrist,whohasaninterestinmakingthecorrect diagnosis of the patient’s capacity so that if the patient is inca-pacitated, the psychiatrist may help to determine and effectuate a plan in her best interest.

As the mediation process evolves and mediators listen for and play back to the parties what they have heard, expressing their understanding of the inter-ests and proposed resolutions, participants may acquire information or insights that allow them to modify their positions and their views about what is neces-sary to resolve the problem.

One way to determine which issues are really important to the parties is to assign priorities when setting the agenda for discussion. If the mediator puts an issue at the end of the list or even leaves out an issue, parties for whom the issue is important usually point out the omission; the mediator can quickly apologize and reintroduce the issue or move it up on the agenda. If the parties allow the mediator to leave out the issue, the likelihood is that they were using the issue as a negotiat-ing strategy and it is not one of their real interests. Sometimes the mediator must be alert to issues not seen as immediately relevant to the case. For example, cost concerns, allocation, and rationing issues are often present in our health care sys-tem but rarely identified clearly in decisions about a particular patient. If the case triggers these issues, as it often does, the mediator must be prepared to identify them and to discuss them. Also, as new technologies develop (air-fluidized beds, for example, which are puffed by random air currents that relieve pressure and pre-vent skin breakdown and bedsores), administrators with limited budgets who have


seen costs soar from previous new technologies are cautious about permitting their use without a specific review. With an eye to cost control, they thus may recatego-rize such resources as scarce.

Acknowledging Feelings Many parties in a mediation are experiencing strong feelings. In bioethics disputes, the patient and family are wrestling with what are often life-and-death decisions. Members of the medical team, although perhaps less willing to acknowledge that this is the case, also often have strong feelings. Most medical professionals take pride in their ability to communicate with patients, families, and coworkers. Re-search suggests, however, that physicians’ poor communication skills are the source of most medical malpractice litigation (Levinson et al. 1997; Hickson et al. 1992). When communication breaks down and disagreements develop, the dispute can move beyond the objective facts about what should happen and trigger identity issues for all participants (Stone, Patton, and Heen 1999). Mediators need to help the participants deal with their emotions. One of the most useful ways to do so is simply to acknowledge the feelings being expressed by saying, for example: “Dr. Post, it sounds like you are very concerned about patient Benson and it is hard to find his family so angry and mistrustful,” or “Mr. Adjubi, I can hear how horrible it is for you to be told how sick your daughter is.” When participants remain angry or unproductively emotional even after the mediator has acknowledged their feelings, the mediator needs to check his or her working hy-pothesis to see whether it needs to be revised and to consider asking directly what would help (see the later section, “Developing a Working Hypothesis”). Ultimately, the mediator may have to direct the participants’ attention away from emotive be-havior if it is not moving them toward their goals.

Educating the Staff, Patient, and Family about the Relevant Legal and Ethical PrinciplesIt is sometimes appropriate during the opening explanation of the process for the bioethics mediator to spend time identifying the legal and ethical principles that are relevant to a resolution of the case, and to begin discussing with the staff and the patient or family how a balance of competing interests might be achieved. The mediator can begin by characterizing the goals of the meeting—“We have to figure out with you what’s best for [the patient]”—and then go on to describe what is known, and what bioethical and legal boundaries must be recognized. For example, the mediation may have been precipitated by a situation in which the patient can-not practically (given reimbursement constraints) remain in the hospital for much longer, and the purpose of the mediation is to choose a new location for the pa-tient. But an in-depth discussion of the relevant ethical and legal principles and how they apply to the case being mediated is unlikely to be productive until after the medical facts have been presented and each participant has had the opportunity to speak about his or her concerns. One way of proceeding from a particular case to the general teaching mandate


(here, clarifying the ethical and legal principles involved) is to identify key discus-sions in the legal and ethical literature, explain their arguments, and, if possible, follow up the discussion by distributing a copy of the relevant articles or legal opin-ions. Medical discussions are generally peppered with cites of recent relevant ar-ticles in the literature. The closer this mediative discussion conforms to that model, the more comfortable the staff will be.

Developing a Working HypothesisEarly in the process of information gathering, the mediator inevitably begins to formulate a working hypothesis—a set of tentative suppositions about the interests of the parties, the issues that need to be discussed, and the likely sources of the dis-pute. In formulating a hypothesis, the mediator, alert to how the parties interact, draws on all the information that emerged in the preparation stage, including what the parties have said and what he or she has heard behind their words, as well as on knowledge of the institution and on life experience. The formulation of a working hypothesis is not a one-time event. The hypothesis continues to evolve, helping the mediator organize first forays into a case and guiding later interventions. When and how during the process should the mediator change, shape, enrich, support, strengthen, or overturn that hypothesis? How should family dynamics and the personalities of the care providers affect it? Consider the following case. A thirty-seven-year-old patient with AIDS who has lapsed into unconsciousness is diagnosed with cancer. The oncologist wants to treat the cancer aggressively; the internist who has been following the patient during his illness is very suspicious of this strategy. The family is opposed to treatment. The working hypothesis for the mediator was: “Another case of an overly optimistic and aggressive oncologist who sees only the illness and not the to-tality of the patient’s care needs.” (Note that this hypothesis reflects the media-tor’s bias, prejudice, and past experience, rather than the facts of the case.) As the case evolved, however, it became clear that the parents were afraid that treatment would increase their son’s pain and suffering. Once they were assured that he would be treated for pain, they began to characterize him as a fighter who wanted every chance, however small, so that he might see his own daughter grow up a bit more. The internist, who was jealous of her turf, began to see the possible bene-fit of the treatment for the malignancy and acceded to a plan that would, at the very least, begin treatment and evaluate its effect at regular intervals. The working hypothesis changed as the dynamic unfolded and the evidence accumulated. It changed too as the family revealed more about the patient and his feelings and values. As this hypothesis changed, the options that the mediator helped the par-ticipants identify continued to evolve to meet the needs of the conversation. The resolution, time bound and tentative, was to begin treatment and monitor the progress of the patient very carefully to ensure that treatment did not continue longer than was medically justified and that the pain and discomfort of the pa-tient were addressed (see Chapter 17). In every session, every mediator develops a working hypothesis about what is


occurring. Without a working hypothesis, it would be difficult for the mediator to know which of many lines of questioning to pursue. The mediator, however, must never permit these provisional theories, however well-grounded, to obscure the actual facts and dynamics of the case. Mediators are always testing hypotheses and must be capable of correcting them as necessary during the mediation as new in-formation is provided. They must be careful not to allow their working hypothesis to drive premature solutions and must reevaluate the situation continually as facts change and evolve. Active listening is an effective way to check the accuracy of the working hy-pothesis. The mediator listens closely to what the parties are saying, summarizing to test shared understanding and to ensure that other participants have heard the same thing, and trying to move the mediation in the direction indicated by the parties. It is important for the mediator continually to determine the parties’ goals and priorities and to respond accordingly to help them focus on the future. The mediator should be alert to signs that a hypothesis is incorrect. When par-ties are resistant or hostile to mediator interventions, continually repeat themselves, or reject options that seem reasonable or workable, it is likely that the mediator has missed a critical point and should revise the hypothesis (although repetition may also signal insufficient active listening on the mediator’s part).

Stage 6: Problem Solving

Once the mediator has identified and summarized the issues and underlying inter-ests and asked clarifying questions, he or she moves into the problem-solving stage of mediation. During this stage the mediator helps the patient and family under-stand the medical facts, assimilate the possible consequences, measure the range of outcomes against shared values, and evaluate and choose options in response to medical questions. Only after this educating process can the patient, or more likely the family, understand the possible trade-offs in the medical decision-making process. The mediator asks questions to help the parties gain clarity about their interests and goals. One important role of the mediator at this stage is sorting out which interests the parties have in common, which are complementary, and which are in conflict (Menkel-Meadow 2001). As the mediator leads the parties through a discussion of the issues and of their interests, options for resolving their differences begin to emerge (see Chapter 5 for a full discussion of the techniques most useful at this stage of the mediation).

Managing DiscussionDuring the mediation process, the mediator sets the agenda by proposing issues for discussion. He or she guides the parties in an exploration of options, encouraging brainstorming so that a range of solutions is considered. Then the mediator works with the parties as they evaluate the options and helps them think about whether and how well various options meet their interests. The mediator also helps parties set priorities and make choices about trade-offs.


In general, people experience conflict as chaotic and out of control. They may feel overwhelmed and pessimistic, even hopeless, about finding solutions. These normal tendencies are likely to be heightened in the hospital setting, where people may be confronting what is in fact a hopeless medical prognosis. As the media-tor guides the parties through the discussion, proposing topics for consideration, he or she replaces the chaos with order by maintaining a calm and calming pres-ence and by being patient and optimistic about the likelihood of crafting a shared solution. The mediator also helps by breaking what seems to participants like an insurmountable problem into manageable pieces for discussion. As in earlier stages, the mediator must be alert to the differing needs of the participants, keeping in mind that it is unlikely that the problem solving will proceed in a linear manner, and that feelings are facts that the mediator needs to acknowledge throughout the discussion.

Developing OptionsOne of the greatest values the mediator in a bioethics or any other setting adds is helping the participants develop and explore options. Often the first ideas for solv-ing any problem (usually presented as positions) are based on limited or inaccurate information, erroneous assumptions about the meaning and significance of data, or skewed perceptions. As the parties in a mediation exchange information, examine assumptions, and compare perceptions, a range of possible solutions is likely to emerge. Be aware, however, that presenting people with several options can also make it difficult for them to select the value-maximizing solution (see Guthrie 2003). Even when options are limited, the exchange can help parties fine-tune the alternatives to more closely serve their interests. A mediator might ask a family the following questions about the patient who is not able to be involved in discussions:

What did [the patient] say to you about any of these issues?If you have never talked with [the patient] about [the current issue], knowing

what you do about him as a person—his likes, his fears, his values, and his commitments—what do you think he would want?

What do you and your extended family think about the issues?How can we help you address these issues? What more information might we

provide that could be helpful? Could any of the staff be useful in facilitat-ing discussion?

Shaping SolutionsIn the problem-solving phase of the mediation, the bioethics mediator should en-sure that all possible solutions are identified and discussed. He or she helps the parties understand the advantages and limitations of proposed courses of treat-ment, the implications for the patient and family of the available options, and whether (and, if so, how) the values and goals of all participants—patient, family, and members of the treatment team—can be reconciled.


Helping Parties Make ChoicesIn some mediations, participation in a mediator-guided discussion gives the parties new understandings of the reasons for behaviors that were upsetting, and the re-alization that exchange of information alone is sufficient to resolve the conflict. In many more cases, once information has been exchanged, understanding enlarged, and options generated and evaluated, the parties still have differing preferences. In such situations, the mediator facilitates the negotiation about what action should be taken to resolve the matter.

Stage 7: Resolution

By the time Stage 6 is completed, the discussion will have reached one of three places:

• Agreementhasbeenreachedonallissues• It is clear that the parties will not be able to reach an agreement.• Anothersessionisneededbecauseoftimeconstraintsorbecauseparties

need more time to think or to get more information.

Mediator’s Role When Agreement Is ReachedOnce participants are able to reach an agreement, the mediator still has work to do. He or she should check with the parties to ensure that the terms are realis-tic, that the agreement does not contain hidden traps that will cause problems in the future, and that it in fact meets the parties’ interests. This is called test-ing the agreement. The mediator also should check on who will be responsible for which actions, timing, and other details. For example, consider the case of a dispute among members of a medical team about whether an elderly patient, Mr. Hadoni, should be discharged to his isolated rural home as he wished, or to a nursing home as his physician was urging (see Chapter 10 for the complete case story). During the mediation (which Mr. Hadoni did not attend), his nurse, fear-ing for his safety if he were allowed to go home, accused the physician of placing financial considerations before the patient’s well-being. After discussion, the accu-sations stopped and all members of the treatment team agreed that Mr. Hadoni, who did not want to be sent to the nursing home where his wife had died, was competent, had the right to control his final days, and should be allowed to die at home. At this point the mediator needed to test the agreed-on decision by asking what services Mr. Hadoni would need, how long it would take to get the pieces of a discharge plan in place, and who would make contact with those who would be providing home care. Once the parties reached general agreement about where Mr. Hadoni would go, it was tempting to assume that the normal procedures for putting a discharge plan into place could be relied on. It works better, however, if the mediator makes sure that all participants know what their roles will be in implementing the agreement. The final responsibility of the mediator, then, after acknowledging the efforts


made by all participants, is to review the decisions about the treatment plan and the responsibilities of each participant in carrying out the plan and to enter the agreement in the patient’s chart (see Chapter 6).

Mediator’s Role When No Agreement Is ReachedIf it is clear that the parties will not be able to reach agreement, the mediator has several responsibilities. In classical mediation, the mediator needs to help the par-ties consider whether some other dispute resolution process would work for them and think about what their next steps should be (for example, making a final of-fer, seeking counseling, consulting a lawyer). In the bioethics context, the parties are not the ones who decide what decision-making process will be used to resolve their differences. Therefore the bioethics mediator should be sure each participant understands what will happen next in order to resolve the dispute, and who will be making the decisions. There are several possible configurations for the decision makers, but most include a risk manager and an administrator, and sometimes hospital counsel. The mediator might also thank the participants, acknowledging their efforts and the difficulty of the situation and also validating any progress made during the mediation by noting any increased understanding, exchange of information, or clarification of concerns. Some mediators make themselves the scapegoat, saying, “I’m sorry I have not been able to help you more.” If the mediator is comfortable with this approach, it can help the participants by relieving them of responsibility for not reaching agreement. In cases where the need for a decision is not urgent, the mediator can suggest that the parties let the situation percolate for a while so they can consider new information and a new range of options.

Mediator’s Role When Another Session Is RequiredAt times the parties will have made progress but need additional mediation sessions because the issues are too complex to resolve at one sitting; emotions are raw and need time to heal; additional information is needed; the participants need time to process new information; outside advice is needed (from, for example, a family member, counselor, member of the clergy, or lawyer); or the parties want to try out some tentative agreements, both to test their feasibility and to build trust. It may be especially useful to schedule a follow-up session to evaluate tentative agreements when the mediator or one or both parties have doubts about the viability of a pro-posal. Building into the mediation process a time to return to the table and revise or abandon a trial solution may prevent the parties feeling that they have failed or that one of them has not followed through on the terms of the agreement (see Chapter 9 for an example, in the context of a bioethics mediation, where a tenta-tive agreement about visiting hours did not work out). When another session is agreed upon, the mediator should end the current ses-sion by summarizing the discussion, including any provisional agreements and any tasks to be completed before the next session. At the beginning of each subsequent session, the mediator should begin with a brief opening statement, reviewing the mediation process and progress to date.


Characteristics of a Successful Outcome in Bioethics MediationIn bioethics mediation the process is part of the product. A successful mediation is one that incorporates all or some of the following characteristics:

• Demonstratesrespectforalltheparticipants• Assiststheparticipantsinunderstandingeachother• Ensuresthatnoonepartydominatestheconversation,intimidatesthe

others, or bars appropriate topics from discussion• Identifiespatientrightsorvaluesthatmighthavebeenoverlookedinear-

lier segments of the decision-making process• Translatesthelanguageofthemedicalstaffintothelanguageofnon-

medical persons, thereby demystifying the discourse• Categorizesandarraysoverlappingconcerns• Ensuresthatallviableoptionsareconsidered• Allays the anxiety of the patient or family, to the extent possible, and

directs attention to the actual medical choices being faced• Facilitatestheongoingdiscussionoftheoptionsthatmightbeacceptable

as solutions and probes to see whether some of these options might be more acceptable if time limited or approached in a specific sequence

• Helpspatient,family,andstaffevaluatetheseoptionsintermsofrelevanceto the patient’s values and of feasibility in light of the changing medical condition of the patient

• Buystimeforinterimsolutionsasthemedicalfactsevolve

These end points are the marks of a successful mediation, whether or not an agreement is reached among all of the parties. If a governing consensus is reached, however, one crucial requirement remains: the solution forged must comport with the notion of a principled resolution (see “Principled Resolutions” in Chapter 1). Once an agreement is reached, the mediator reviews the terms with the parties. Finally, in classical mediation, the mediator checks with the parties to see whether a written agreement is needed; if so, depending on the setting, he or she drafts either the agreement or a memorandum of agreement and reviews the language with the parties. In bioethics mediation, the mediator enters any agreement in the patient’s chart. If there is no agreement, the mediator in any setting discusses the next steps to be taken by the parties. In bioethics mediation, he or she documents that discus-sion in the chart (see Chapter 6).

Closing the SessionAt the end of any mediation session the mediator should review the decision reached, pausing to get the parties’ assent to each element. If the parties have not reached agreement, the mediator should review the issues and interests identified during the mediation and acknowledge progress made during the session. Regard-less of the outcome, the mediator should validate the effort and work of the partici-pants and thank them for participating.


Stage 8: Follow-up

Outside the medical setting, mediators may work with the parties after agreement is reached to help with implementation, for example, serving as the delivery point for an exchange of money or goods or convening continued meetings to adjust and amend agreements to take into account unexpected (or even expected) complica-tions. In the bioethics context, the follow-up stage may involve any of the tasks that follow.

Ensuring That the Agreed-Upon Resolution Is ImplementedEnsuring implementation of the resolution may require as little as a note in the medical chart setting forth the decisions reached in the course of the mediation or consultation. It may, however, require some further action by the mediator. Especially in a dynamic case, the mediator may need to be in touch with the care team to help it and the patient or family address the changing ethical contours of the case.

Following Up with Family and Staff to See Whether Family Support Is NeededSome families can reach a decision even if issues and long-standing unresolved ten-sions among family members remain. It may be that one of the family, on either the “winning” or the “losing” side, may need additional support after the surgery takes place or the ventilator is disconnected. The party making such a decision, whether it be a decisionally capable patient or the family of an incapable patient, needs the compassion and support of the staff. Similarly, if the patient is suffering, then that pain and discomfort is an ethical as well as a medical issue. If the patient is no longer suffering, the staff’s obligations largely shift to the family. Physicians and the care provider teams may think that their responsibilities end with the patient’s transfer or death. But studies of family dynamics that focus on the needs of the proxy argue for an ongoing obligation to help the family members and the proxy assimilate the facts and feelings about what has occurred. Dubler (1995), for example, has long argued that special obligations are due the legally ap-pointed proxy or the informal surrogate who is empowered within the care setting to make decisions for the patient. Whereas the medical professionals often treat the proxy as a sort of junior colleague when difficult decisions must be faced, the bioethics mediator should keep in mind that the proxy is most often a grieving and disoriented family member who must make decisions in the context of medical uncertainty that later will weigh heavily on his or her conscience. It is often helpful for family members to have spoken with the patient about the patient’s wishes, but these efforts sometimes are either impossible or unproductive. Receptivity to discussions about possible disability and death varies with culture. And proxies’ and patients’ abilities to mount such discussions vary with person-ality. Whether or not the patient has been able to indicate what he or she wants, and whether or not there is a legally appointed proxy, decisions need to be made about the patient’s care. Either family members or strangers—usually the physician and other members of the medical team—make these decisions. In general, family members are preferable. But the care team must then accept that the process of


deciding places grave burdens on the appointed proxies, informal surrogates, and family members who feel responsible for the decisions, especially if the decisions permit or facilitate the death of the patient. One of the obligations of the mediator that flows from this analysis is the duty to support the family members in the process of deciding. With this obligation must come an awareness of the fine line between taking over the decision and help-ing the family shoulder the burden of and responsibility for deciding. It is not the role of the mediator or of the care team to usurp the power of the family to decide. It is the role of the mediator, however, to help the care team shoulder as much of the responsibility for a decision as is feasible. For example, the mediator might help the care team frame the decision so that the team states, “ Let me explain why we think that your mother is really not a candidate for resuscitation” rather than “Do you want your mother to be resuscitated?”

Debriefing Medical Staff on Medical, Ethical, and Policy IssuesWhen there has been a particularly troubling case, the staff often has feelings about how the case unfolded and was resolved and how like cases should be handled in the future. They also need to consider whether there were hospital policies that contributed to the bad outcome and if so how they might be modified. If there is a sad outcome, the staff may need time and space to express their sor-row and their discomfort, especially with any role that they might have played in the process. Often it is very helpful if the mediator takes time to sit with the staff and review the conduct of the case and the way events overtook the patient and family. In particularly troubling cases—for example, some involving children—formal rounds is the best forum in which to address sorrows among the staff. At other times, a visit to the nurses’ rest area will suffice to gather the team and take a moment to grieve together. If there is an opportunity to look back over the facts of the case, the medical and ethical choices made, and the resulting outcome, the mere process of review is helpful.

Highlighting Hospital Policy IssuesIf the case has been affected negatively by a hospital policy or procedure, one of the tasks of follow-up is to identify and begin to evaluate the policy. Consider, for example, the sticky issue of the do-not-intubate order. There are some situations that require a discussion not only of resuscitation but also of intubation, or putting a patient on a ventilator. National standards for resuscitation require intubating the patient as part of the process. However, some patients and families request resusci-tation without intubation, which presents several problems, including its contra-vention of the national standards. Some hospitals have policies that permit patients and families to choose a partial code, that is, some intervention short of intuba-tion. A bioethics mediator who encounters a situation, for example, where hospital policy precludes this option but it is an option that the family wanted, should raise the issue with the bioethics committee or another forum in the hospital to confirm the policy and discuss whether it needs emendation.

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5

Techniques for Mediating Bioethics Disputes

This chapter describes techniques used in classical mediation, highlighting those especially relevant to bioethics mediators. Mediation skills training should be a hands-on experience. Most basic mediation training involves from twenty-four to forty hours of experiential, interactive instruction, ideally followed by an appren-ticeship. All mediators, even the most intuitive and experienced, should keep up with the literature; as the field develops, old assumptions are continually being tested and challenged by researchers, who refine some and disprove others. In bioethics mediation, as in all mediation, the mediator has to choose what in-formation to summarize and emphasize and what is not useful in the context of the goals of the process. Generally, useful information moves the process forward. Im-portant information includes each party’s explanation and interpretation of the facts and of what he or she hopes to accomplish, as well as his or her understanding of the limits of the process. An effective mediator encourages each party to speak and listen; in the process, each may clarify or even change his or her own understanding and perhaps correct any inaccurate perceptions about the goals or motives of the other side. There is much debate in the literature about whether mediators should act only as facilitators or also should evaluate the merits of parties’ claims, and whether they should address only the narrow issues presented initially by the parties or probe for broad underlying issues (see Riskin 1996, 2003; for a more comprehensive discussion of classical mediation techniques, see Frenkel and Stark 2008; Moore 2003). In this chapter we use nonmedical examples because our experience is that, in training, the facts of medical cases often distract from the focus on skills. An effective mediator also listens and watches for signals that a party may be re-ceptive to change, intervening with a question or comment for clarification. When mediators are incorrect in their assessments, the parties are usually quick to clarify their concerns. It is unlikely that a mediator can force a party to change his or her thinking by inaccurately (from the participant’s perspective) summarizing what was heard. Determining which data are relevant to the mediation process and how much relative attention various factors should be given in the discussions is an intrigu-


ing and challenging task for any mediator. This evaluation goes on continually, from the initial drawing out of the history of the conflict and the interests of the participants to the later identification and arrangement of options and, finally, to the review of proposed resolutions. The skilled mediator understands the danger, especially in medicine, of prematurely cataloguing facts as though they were im-mutable objects rather than the shifting elements of a dynamic picture that evolves and develops only gradually. The shorthand for this weighing of data is the ques-tion, How can we ensure that all relevant information is considered? This task of sifting and sorting emerging data is made even more compli-cated for the bioethics mediator by the demands of the clinical setting. Against the backdrop of emotionally charged issues, rapidly changing medical conditions, and numerous concerned parties from diverse backgrounds, the mediator needs a heightened awareness and quick responses to process incoming, often conflicting, information. Moreover, the way in which data are introduced significantly affects how they are perceived. Stories of conflicts are rarely presented as complete narra-tives. Rather, information comes in bits and pieces, often unrelated, out of order, sometimes inconsistent. When placed together like pieces of a puzzle to create an emerging picture, they may look very different from the fragments first offered. Likewise, the source of information influences the importance it is accorded. In-deed, differing perceptions of events are often precisely what create conflicts. The person requesting the bioethics consultation supplies the introductory version of the disputed situation. This person can naturally be expected to emphasize certain parts of the story while minimizing or even ignoring others, or filtering the infor-mation before it even reaches the consultant. When additional interested parties are convened, additional information and alternative perspectives are added. What medical facts, prognostic categories, patient statements, or family memo-ries will be sufficiently compelling to affect the course and conduct of the discus-sions? The mediator in a bioethics consultation is not a judge. There are no rules of evidence that constrain what can be accorded weight in the process. There are no exclusions from the transcript or from the hearing of a jury; nothing will be struck from the consideration of the parties who must cooperate to forge a consensus. Yet some statements and some sorts of memories are more relevant than others. The mediator must decide which statements are useful guideposts for the resolution of the conflict and which are barriers to a desirable outcome.

STADA

Although this chapter focuses on particular actions by the mediator that can con-tribute to agreement on a principled resolution, we begin with another cut at how to conceptualize what a mediator does during the process we refer to as stada. Shorthand checklists in medicine have proven very helpful. stada is less compli-cated than those that govern interventions in the intensive care unit or in complex surgical cases, but we find it a good reminder of where you are in a mediation and what comes next.

Techniques for Mediating Bioethics Disputes 75

S—Sit down: Sitting is a simple matter but one that patients and families find very comforting. Myriad staff dash in and out of the patient’s room all day and deep into the night. Most of them wear white coats and are indistinguishable from one another. Sitting down breaks the pace, establishes some semiprivate space for discussion, presents the message that there is time to talk and contemplate before the next stop on a busy day, and offers some assurance of focus and attention. T—Tell me about Mama: Important as it is to call on a physician to establish the medical facts about a patient, it is even more important to empower patients and families by asking them to begin the discussion by introducing the patient to the group: “Tell us about Mama.” The medical team members are the experts on the diagnosis, prognosis, and clinical alternatives for the patient. The family, and friends and loved ones, are the experts on who the patient was and is. Engaging the family as experts at the start of the discussion identifies them—to a greater degree than usual in the hospital set-ting—as the medical team’s equals. This redress of the imbalance of power is a criti-cal step in setting the stage for the family to participate equally in the discussion. By asking them to present first, the mediator validates their place in the power dynamic of the discussion. A—Admire: Stroking is one of the skills that mediators use to enhance partici-pants’ sense of being recognized and appreciated. Stroking is the basis for stating: “Thank you for coming today. We realize that it was difficult for all of you to find the time, but it is so important to our discussions that you all who know and love the patient are able to participate. We are all strangers to Mama, but you know her and can help us discover what her values are and what she would want for her care.” D—Discuss: This is the point at which the medical staff is asked to present the medical facts—the diagnosis, the prognosis, the treatment alternatives, and the various paths that might lead to the betterment of the patient or to her death. We have noted a few times in this book that medical facts are interpretations of data at a moment in time that may change as the data change or may change as the in-terpreter employs a different intellectual filter or views the facts through a different historical lens. Medical facts are less fixed than they may seem to the nonmedical participants. A—Ask: At this juncture the family needs to be involved in deciding what Mama would want if she could tell us. This discussion should grow out of the opening and should expand on the lifestyles, values, and preferences of the patient as they relate to the options that seem to be available (for a recent scholarly article that makes many of the same points, see Sulmasy and Snyder 2010).

Summarizing

The mediator is constantly gathering information, testing tentative hypotheses, and summarizing what participants have said. Summarizing may be the most critical mediator skill. It cannot be overused.


The repetitive summary, in which the mediator synthesizes the essence of what has been said, serves several key purposes in the mediation process:

• Toletthepartiesknowthatthemediatorhasbeenlistening• Toletthemediatortesthisorherunderstandingofwhatwassaid• Tohelpthepartiesorganizetheirthoughts• Tohelpthepartieshearwhatothersaresaying• Toshowthepartiesareasofcommoninterest• Tobringordertothediscussion• To remind parties of progress that has been made

Mediators can use summarizing simply to be sure that all participants have heard what was said, to focus on particular issues, or to move the discussion for-ward (for examples, see the transcripts in Chapters 16–19). In classical mediation, the mediator does not begin to summarize until after all parties have completed their opening statements. Summarizing after only one party has spoken runs the risk of seeming to endorse that speaker’s view and often leads to a discussion of or response to it before the other parties have had a chance to be heard. This model is not necessarily appropriate in the bioethics setting. In a bioethics mediation, after family members have responded to the request “Tell us about Mama,” the mediator typically summarizes what she or he has learned about the patient as a person—thereby showing appreciation for the pa-tient and for the patient’s importance to the family and loved ones—before turn-ing to medical facts. Once the physician has stated the medical facts, the media-tor again summarizes, translating into lay language if necessary to ensure that the patient or the patient’s family understands. She then checks on whether anything has been omitted or whether there is disagreement (about the data themselves, not about their implications) and again summarizes, before moving on to give other participants the opportunity to speak about their concerns and views of the situation. Mediators find it useful to summarize throughout the mediation, especially after an exchange of information, suggestion of a possible solution, expression of emotion, or acknowledgment of another participant’s views. Summarizing is much more than simply playing back the speaker’s words. Mediators use summaries to capture in their own words the essence of what has been said, focusing on inter-ests, issues, and feelings, and perhaps tying a new statement to earlier statements. They also use summaries to remind parties of their interests; to help bring order to what the parties may be experiencing as a chaotic, unmanageable, out-of-control situation; and to amplify helpful statements while editing out the biting words. Re-peating some of the nondestructive language of the speaker can also be a powerful tool. In addition, summarizing can help mediators who feel stuck, giving them a moment to collect their thoughts and decide what to place next on the agenda for discussion. The following are useful openings:


“Let me see if I understand what you are saying.”“If I hear you correctly . . .”“So you are saying that . . .”“Let me take a minute and try to summarize what you’ve both been saying.”

The mediator can use a summary to point out something the parties have in common:

“So you are both saying that you want to be treated with respect and for you, Ms. A, that means . . . , and Mr. B, you would like . . . , and each of you has some other concerns.”

“Ms. A, if I heard you correctly, . . . and, Mr. B, you feel . . .”

Without repeating hostile, hurtful, or attacking words, the mediator can ac-knowledge the feelings expressed by those words and summarize the information behind them. What follows is a mediation scenario and an effective summary, in which the mediator includes issues, interests, and feelings.

Ms. A: I brought this complaint because he trapped two of my children in the elevator and threatened them. Now they are terrified of him. He had no right to treat my children like that. If he has problems, he should talk to me. He is crazy—a madman.

Mr. B: The noise from her apartment is unbearable. Her children are like animals. Someone has to tell them how to behave. It is no wonder they don’t know how to behave with a bitch like that for a mother. I work hard and have to get up early. I need to get my sleep.

Mediator’s summary: Let me summarize what I’ve heard so far. You are both angry and upset [feelings they have in common]. Mr. B, you are concerned about the sounds coming from Ms. A’s apartment [issue], and you need it to be quiet enough for you to get your sleep [interest]. And Ms. A, you are concerned about the way Mr. B communicates with your children [issue] and you don’t want your children to be afraid of their neighbors [interest]. And you also indicated you would like Mr. A to speak directly with you if he has concerns about your children [proposal]. Is there anything I have missed?

Notice that the mediator ends the summary with a question designed to move the discussion forward and avoid creating a pause that the parties could take as an invitation to repeat and embellish what they have already said. The summary allows the mediator to check with the parties to be sure he or she has understood them and, if not, to give them the opportunity to correct any misunderstanding. Participants are likely to have strong feelings and to express those feelings in quite different styles. The mediator should be alert to the feelings of all partici-


pants, acknowledge them in the summary, and give permission for their expres-sion but also be aware that the unmoderated venting of feelings is likely to be counterproductive (Allred 2000). In the bioethics setting, as in all mediations, if parties remain so emotional that they cannot engage productively in the discus-sion, the mediator should check to see whether he or she has missed an important issue. In the early stages of a mediation, the mediator usually follows a summary with a clarifying question:

“Mr. B and Ms. A, could you each tell me about your daily schedule, when you and the other people in your apartment get up, what your routines are?”

“When you say you want to be treated with respect, what do you mean?”

In a bioethics mediation the same is generally the case:

“Mr. A, you say that Mama was always very clear that she did not want ma-chines at the end of her life. Can you tell us about those conversations and how she explained her values and wishes?”

“How do you think that she would regard her present situation given what you know about her?”

Later in a mediation, after summarizing additional information gained as a result of asking questions to clarify, the mediator may want to ask a further question—based on what the parties have said—that presents an option for solving part or all of the dispute. In this case, after summarizing as earlier:

“Given those concerns, do I understand that you both think it would make sense to agree that, Mr. B, when you have concerns about the A children you will tell Ms. A instead of talking to the children?”

If the parties say yes, the mediator goes on to test the agreement by asking how it would work. (Would they speak directly? Communicate by phone or e-mail? Etc.) In a bioethics mediation, the mediator might say:

“Given the nurses’ assurances that your mother is not in pain and your broth-er’s feeling that it is too soon to give up, would it make sense to try dialysis for a week to see if her cognition improves at all?”

Reframing

Note that in the course of summarizing the mediator also reframes, that is, removes the sting from hostile, negative, or threatening statements while preserving the


speaker’s core meaning. Reframing requires the mediator to restate what was said in more constructive form, but without sugarcoating. When a mediator reframes, she restates positions as interests, judgments as problems, stories about the past as questions about the future, and individual con-cerns as shared concerns (Frenkel and Stark 2008, 140).

Tenant: That thieving, no-good scoundrel locked me out of my apartment and then took my stuff. He’s going to pay for that.

Mediator: So you are very angry because you believe that your landlord was responsible for your missing property, and you’d like to be compensated. Is that right?

Physician: Do you understand that turning off Mama’s ventilator now would be for me like killing her—it would be murder.

Bioethics Mediator: I realize that you have concerns about the appropriate-ness of this action given your personal commitments and are angry at being asked. However, it might be the case that other members of the hospital staff might feel differently and that they would be free to so act. Is that something that we should explore?

Questioning

Mediators ask question for many reasons, including:

• Toobtainabroadoverview:Whatbringsyouhere?Tellmemoreaboutthat. I’m not sure I understand—could you give me more details?

• Toobtaininformation:Howmuchisyourrent?Couldyoudescribethelayout of your apartment? How old are your children?

• Toclarifyabstractideasorgeneralizations:Whatdoyoumeanwhenyousay that she never returns your calls? How do you propose to accomplish this? When you say you want to be treated with respect, what do you mean?

• Tofocusthediscussion:Howdoesthisrelatetotheissueof...?• Toencouragepartiestoevaluatealternatives:Whichofthesetwoop-

tions do you consider the best? Do both options work equally well for both of you? What do you see as the advantages and disadvantages of this proposal?

• Tolearnwhyapartyholdsaposition:Whydoyouthink...?Howwillthis solve the problem?

• Tointroduceahypotheticalidea:Supposeyoutriedthisoption,whatdoyou think would happen? What if Mr. C could repair your sofa? Given the nature of the problem, is it possible to . . . ?

• Togeneratenewoptions:Arethereotherwaystosolvethisproblem?Ifyou could write the script, what would it be?


• Toencourageparticipationinthediscussion:Whatdoyouthinkaboutthat, Ms. M? How does that idea strike you, Mr. J? (Sally Pope, handout for mediation training, 1993)

Asking the right questions at the right times and for the right reasons is critical to productive mediation. Choosing the appropriate questioning technique is also important.

Effective Questioning Techniques In general, mediators should choose questions carefully, think about their goals in asking the question, and ask only one question at a time. Asking multiple questions gives the person responding a chance to choose which question to answer, and the choice is usually to answer the easiest and avoid the most difficult questions. How-ever, where the mediator senses that parties are uncertain about what they want to say, using multiple questions invites them to choose from a range of topics, letting them start where they are most comfortable while still providing some guidance regarding the structure of the discussion. Open-ended questions give the speaker the opportunity to say what is im-portant to him or her in whatever form he or she chooses. They also are a way of encouraging the party to speak. (Examples: What brings you here? Tell me your view of the situation. Tell me more about that.) Narrow questions focus the speaker on a specific topic. (Examples: Tell me about the conversation. What is the layout of your apartment? What is your nor-mal billing procedure?) Closed questions ask for specific information or a yes or no answer. (Examples: What color is your house? What time do your children go to bed? Is that your green car? Do you normally work from nine to five?) Clarifying questions are one of the mediator’s most powerful tools. These questions help the speaker, the other participants, and the mediator develop in-sight into the meaning of statements, demands, and positions. They also help the mediator and the parties avoid inaccurate assumptions and make explicit those assumptions that turn out to be accurate. For example, a mother says of her fifteen-year-old daughter who has been vio-lating curfew: “She can’t hang out on the street all night. She needs to be home by ten.” (Here she is stating a position.) The mediator might respond, “Could you tell us more about why you want your daughter home by ten?” This is a clarify-ing question, which might lead the mother to say that the streets are dangerous or that she wants her daughter to learn to follow rules and respect authority, two very different interests. The mediator would follow this response with a summary: “So it sounds like you are concerned about your daughter’s safety and about her being responsible, is that right?” Or a mediator might respond to a daughter’s statement about the way her family makes health care decisions—“That isn’t how my family deals with these is-sues”—by asking a clarifying question: “Could you tell us a bit about your family’s approach?”


Or if a son keeps saying in regard to the question of whether to sign a DNR that he does not want to give up on his mother, the mediator might ask, “What do you mean by ‘give up’?” Even more common is to have a family state that they want “everything” done for Mama. That sort of comment demands unpacking and clarifying, as it is rare for nonmedical staff to really understand what the full panoply of interventions might entail. The bioethics mediator needs to ask clarifying questions, such as: “When you say ‘everything,’ what do you mean?” or “When you say ‘everything,’ what are your concerns?”

Looking beyond Labels

Medical professionals often use labels as a useful shorthand way to communicate and at times to relieve the tension of stressful work. But labels may get in the way of dealing with problems, dehumanize patients or family members, or mask one’s emotional reactions to challenging and stressful situations. Medical professionals too often use the terms difficult patient or difficult family to characterize patients or family members in bioethics conflicts. When a bioethics mediator probes to find out what is meant by those terms, health care professionals use terms like compli-cated, belligerent, rejecting, resource intensive, making the professional feel inadequate or helpless, litigious, demanding attention immediately, testy, threatening, crazy, makes the professional feel angry, entitled, inconsistent, and refusing to talk. Note that five of these reflect challenges to the professional’s identity and competence (rejecting, making the professional feel inadequate or helpless, makes the professional feel angry, re-fusing to talk), while six reveal feelings of being under attack (belligerent, entitled, li-tigious, testy, threatening, crazy) and others are indications that the patient or family members make the health care professional’s job difficult (complicated, resource in-tensive, demanding attention immediately, inconsistent). Helping sort through these reactions to determine which behavior has provoked the label is critical to finding a way for the health care professionals, patients, and families to work together. Labels don’t help solve problems but instead often obscure possible solutions. If by diffi-cult the physician means anxious or demanding, the way to address the behavior is very different from the way to respond to angry or threatening behavior.

Dealing with Power and Power Imbalances

Much of the early criticism of the alternative dispute resolution movement came from theorists who cautioned against replacing the public decision making of the formal justice system with processes which lack transparency because they occur in private. Those critics (e.g., Delgado 1988; Fiss 1984) argued that informal pro-cesses would disadvantage those who traditionally lacked power because of race, gender, or poverty. In our view, those concerns need to be taken seriously, but they


also reflect a naïve and romanticized view of the litigation process and a lack of understanding of the ways in which mediators can address power imbalances. Power has been defined in many ways by different disciplines, but most simply as “the ability to make things happen or to bring about desired outcomes” (Cole-man 2006, 121, referencing Follet). One’s power to affect the outcome of a dispute may be derived from one’s formal role; legal rights; access to or control of infor-mation or resources; associational influence; ability to bestow rewards and impose sanctions or other costs; control of process; moral power; individual traits such as intelligence, experience, or communication skill; and ability to define the conflict (Moore 2003, 377–78, citing Mayer 1987, 2000). In the health care context, the physician’s power is based on role, access to in-formation, and control of resources. Although a hospital is not a prison, someone there takes away your clothes and some of your belongings, assigns you a room, usually with other patients, schedules your day, arranges for meals, and stops you at the door if you try to leave without permission. Given the “total institutional nature” of the enterprise combined with the regression that often accompanies ill-ness and augmented by the benefits of the “sick role,” the hospital is designed to disempower the patient, and, by extension, the family (Goffman 1961; Parsons 1951). These power imbalances are real and cannot be eliminated, but bioethics mediators can take action to ensure that power disparities do not deprive patients and families of their voices or their autonomy. They can also empower members of the treatment team who have important insights but whose views, because of their positions in the hospital hierarchy, are too often ignored. Mediators can use a number of techniques to level the playing field, such as:

• Showing respect to all participants• Giving all participants voice• Encouraging generation of a number of options, not just the one proposed

by those with the greatest power• Allowing the expression of emotions and fears• Recognizing that most people have the ability to make good decisions

for themselves and their loved ones and supporting that decision-making ability

• Being nonjudgmental, especially of approaches to decision making or belief systems

• Encouragingthesharingofinformation—aboutmedicalscienceandaboutfamily values

• Coachingallparticipantsinnegotiationskills• Interruptingandcontrollingintimidatingbehaviorbytheprofessionals• Providingtranslation—forthosewhosefirstlanguageisnotEnglishand

from medical language to lay language when appropriate• Ensuringthatfamiliesandpatientsdonotagreeonacareplan out of fear

of decreased care or emotional or physical exhaustion. (This list draws in part on Davis and Salem 1984.)


Not all bioethics disputes are appropriate for mediation, as mentioned earlier. When the power imbalance is so great that the patient or family cannot, even with the support of the mediator, participate effectively and without fear in the decision-making process, then it becomes the responsibility of the mediator to identify other decision makers or other decision-making processes.

An “Old Lady” and Her Twelve Cats

The case study that follows involves a patient who lacked power. She was living on the fringe of conventional society, making lifestyle choices that may have had a negative impact on her health and that most would find unacceptable. But she was still able to articulate her desire and perhaps decide for herself. If the patient had been deeply demented but still articulated a consistent position, that might be characterized as a “spoken choice” (Collopy et al. 1990) and would not have the same moral force. If decisional capacity survives, it gives greater moral weight to the articulation. As decisional capacity wanes, the same statements, articulated without regard for person, have less force. But in this case the mediator empow-ered the patient to have her choices recognized, respected, and accepted. The case presents the classic clash of caregiver-paternalistic impulse versus the force of less-than-perfect autonomy. The patient, Ms. F, was brought into the hospital when her fragile systems for caring for herself failed to prevent a medical crisis. As the crisis had abated, how-ever, staff expressed concern about her lifestyle and mode of functioning, which did not meet the usual and accepted pattern of caring for oneself. Ms. F had always been an isolated and secretive person. She had few social or familial contacts and was not involved in church or neighborhood. She had a large collection of cats—at least a dozen, according to the EMTs who brought her to the hospital—that were not cared for in conventional ways. They roamed the apart-ment, relieving themselves at multiple sites and eating from bags of food scattered throughout the apartment. They had made her apartment a smelly mess that might be dangerous to her and potentially to her neighbors. Some staff members felt that she was close to meeting the standard for civil commitment as a “danger to herself and others.” Most of the members of the medical team thought she should not be living on her own and were unhappy about discharging her to return to her apart-ment. Ms. F no longer required in-hospital care and her discharge was imminent. The clinical ethics consultant was contacted to help the team consider what op-tions, if any, should be presented to the patient. State regulations require that there be a safe discharge plan before a patient is permitted to leave the hospital. In most cases the creation of that plan involves the patient, care providers, and family in a discussion of the diagnosis, prognosis, and realistic options for the future. The majority of the team took the position that this patient was without capacity to make decisions about her future life. Sometimes the character, judgment, and compromised capacity of a patient


block logical consideration of the discharge alternatives. In this case, staff felt that all three factors were at work to frustrate the decisions of the care providers regard-ing what was in the best interest of the patient. As is often the case in disputes about the decisional capacity of patients, the mediation took place with members of the care team without the patient’s involve-ment in the discussions (though the mediator did stop by to meet and engage the patient before meeting with the staff). In the course of the mediation, the bioethics mediator, in her role as educator, reviewed with the staff the rather standard defini-tion of decisional capacity: Decision-making capacity requires, to greater or lesser degree, possession of a set of values and goals, the ability to communicate and to understand information, and the ability to reason and to deliberate about one’s choices. One of the nurses argued forcefully that Ms. F’s consistently expressed desire to go home to her apartment should be respected, pointing to literature evidencing that these sorts of isolated patients who are forced to go to a nursing home tend to wither and die within a very short period of time. The social worker argued that Ms. F was endangering her health with the pattern of neglect that her apartment demonstrated. He argued that autonomy was bounded by the rights of others and that living in a congregate facility, a New York City apartment house, demanded a certain level of sanitation that Ms. F was incapable of maintaining. The physician argued that this patient had residual autonomy, which, if sup-ported, could give her continued life in her own space. (This articulation particu-larly pleased the bioethics mediator, as she had recently given grand rounds in geriatrics on the topic “Dimensions of Autonomy in Cognitively Declining Elderly Patients.”) During the mediation, the team explored other discharge options—“snowing her out” (giving her a massive amount of sedation) and delivering her to a nursing home against her will, and asking for a court-appointed guardian, who was all too likely, given the history in the jurisdiction where Ms. F lived, to choose the nursing home placement as the least bothersome alternative for him or her rather than the least restrictive alternative for the patient. At the end of the discussion, the staff reached consensus: Ms. F did qualify as capacitated, even if she was at the end of the spectrum of morally cognizable ability. Ms. F knew where her home was and had clearly and repeatedly stated her wish to go home and her refusal to go to a nursing home. While she did not un-derstand all the dangers that the team thought she would face by returning to her apartment, she was clear about how central this notion of home was to her life and her being. She stated that she was willing to incur the risks to her health entailed in returning to her apartment and her pets. The recommendation of the staff was to suggest to the attending physician that the patient’s wishes to go home be recognized and supported as a reflection of her waning, yet existent, decisional capacity. The plan developed during the mediation was to ask the social worker to take the following steps in support of Ms. F’s decision:


• PutProtectiveServicesforAdults,acityagencywithjurisdictionoverendangered adults, in touch with the case.

• Gettheapartmentcleanedupbeforeshegoeshome.• Atleasttrytogetheragreementthatshewillaccepthelpinthehome—

although the long-term chances are not great for continuance.• Seeifthereissomemedicationthatmighthelpher—althoughthistoo

may be a short-term solution.

The alternative to accepting Ms. F’s choice was imposing a choice that posed other and very grave dangers for her. It seemed clear she would be returning to the hospital in the future. (One seasoned and wise geriatrician had argued for a “three strikes and you’re out” rule in this case and in others, meaning that the third time the patient was brought to the hospital, the decision to go home would be barred as an attempt to support decrepit autonomy that was doomed to fail.) Perhaps next time Ms. F might be more amenable to the team’s suggestions. She could also become so difficult for her neighbors that they, in conjunction with Protective Ser-vices for Adults, might petition for civil commitment—a story for another time. Patients who have the capacity to decide have the right to make wrong deci-sions. That is the dark side of patient autonomy. It can go awry and produce poor decisions that make care providers uncomfortable. But this was a patient who had probably made poor decisions forever. It was not the mandate of the care team to recreate this personality, her standards of judgment, and her decision making. In this case the clinical ethics consultant met with the patient, but the media-tion took place among the staff members, most of whom had written off the pa-tient’s ability to make decisions for herself because of her unconventional lifestyle. The mediation process allowed a thorough exploration of the options for Ms. F and for discussion of the ethical norms that needed to guide decisions. The case is an example of augmenting the power of the weak with the process of bioethics mediation.

Generating Movement

Mediators use several techniques to overcome impasses and keep the discussion moving during the problem-solving stage of the mediation.

Asking Problem-Solving Questions Questions that ask the parties to focus on their interests and possible solutions can help move the parties toward resolution. For example, in a dispute between a par-ent and a teenager about curfew, friends, and other issues, the mediator might say to the mother: “You have said you are concerned about your daughter’s safety when you don’t know where she is or whom she is with. What could she do to make you less concerned?” Or the mediator could say to the daughter: “You’ve heard your mother say she is worried about your safety when she doesn’t know where you are


or whom you’re with. Do you have any ideas about what you could do to make her less concerned?”

Raising Issues It may also be important for the mediator to ask questions about issues that the parties have not addressed explicitly. Parties will often hint at underlying issues or interests as a way of testing whether they can safely be discussed. For example:

• Businesspartnersmayhavehadafallingoutandbefightingabouthowthe assets should be divided. The mediator may sense that each is feeling hurt and betrayed, much like parties to a divorce, and ask them about those feelings.

• Anolderwomanmayhavesaidseveraltimes:“Nooneshouldbespokento like that. His language was inexcusable”—but never specified what was said. The mediator, sensing that the language itself is critical to the dispute, might ask parties whether they would be comfortable telling him or her what was said.

• Ayoungmanmayhavereferredatseveralpointstoanotherparticipantand her family as “those kinds of people.” The mediator might ask for clarification, sensing that there are underlying stereotypes that need to be addressed or cultural differences that are having an impact on the dispute.

• Inadisputebetweenneighborswithchildrenwhohadplayedtogetherinthe past, the mediator might ask about the impact of the dispute or of a proposed resolution on the children.

In the bioethics context, the mediator may need to raise the following issues:

• Isthepatientsuffering?Aprimeconcernforthebioethicsmediatoristhatthe patient not suffer unnecessarily. However, in end-of-life situations, if the patient is beyond help or suffering, the balance shifts. At that point, the mediator might concentrate on the needs of the family rather than the needs of the patient.

• Doesthefamily/patientorstaffhaveunrealisticexpectations?Shouldthefocus be on palliative treatment? Are one or both parties so invested in this case that they are supporting futile treatment?

• Isthefamilytakingupadisproportionateamountofstafftime?Isthereanissue of the fair allocation of scarce resources?

Hearing Proposals In the midst of heated and attack-filled statements, parties often make proposals. The party who makes a proposal may not even be aware of having done so in this circumstance, and most likely the other party will not have been able to get past the hurtful words to hear it. The mediator should listen for the proposal and at the appropriate time—often later in the mediation when the parties are beginning to feel heard and to trust the process—inquire about it.


Mr. A: This isn’t gonna work. You can’t trust that guy for a minute. He’s so crooked. I’d have to hire someone to watch him the whole time just to make sure he does what he’s supposed to.

Mediator [later in the process]: Are you saying that if Mr. B were supervised in fulfilling his part of the agreement you’d be able to accept these terms?

Mr. B: I can’t believe that after all of her suffering you will really be able to keep her comfortable without one of her children here with her.

Mediator [later in the process]: Are you saying that one of her children would like to be with her at all times? Are you aware that if we shift Mama to the hospice unit that this is entirely appropriate and usual? Could that be another reason to move her to the hospice program?

StrokingWhen mediators talk about stroking, they are actually referring to two different techniques: first, acknowledging feelings; and second, recognizing the work of the participants in the mediation. Statements that acknowledge feelings begin with phrases such as “So you are saying you felt disrespected,” or “You were feeling hurt,” or “It sounds like you were confused and frightened by her reaction.” Statements that recognize the parties for their efforts in the mediation pro-cess can acknowledge suggestions and offers parties have made, the way the par-ties inter act with each other, their willingness to listen or to talk about difficult subjects, the understanding they show of the other’s perspective or concerns, or their willingness to make concessions or compromise. A mediator might say, for example: “I know it is difficult to discuss these issues, especially with strangers, and I appreciate your willingness to talk about them”; or “That is a very helpful proposal. I can see you want to work this out”; or “This is a difficult situation. I can see that it is hard for you to be here”; or in response to a concession or change in perspective, “It is helpful that you are willing to consider the problem from his perspective”; or to recognize progress, “It’s great you two have agreed on these three points. You’re making real progress here.” Bush and Folger (1994) argue that the goal of mediation should be empowerment and recogni tion. By empowerment, they mean looking for opportunities for parties to make decisions for them selves; by recognition, they mean encouraging opportunities to develop an understanding of the other person’s perspective. We have found that recognition is often a three-step process. Parties ar rive at a mediation feeling uncertain and unworthy. The media-tor provides recognition to each party by acknowledging his or her feelings and interests and the impact of the dispute on his or her life. This recognition by the mediator allows the parties to give themselves and their concerns recogni tion and then perhaps to give recognition to the other party.

Allowing SilenceMany people have difficulty tolerating silence, but simply sitting quietly and wait-ing for a response gives people time to think before speaking. Silence can also be a


gentle tool for eliciting useful information. Mediators should be aware, however, that some cultures are more comfortable than others with silence.

Holding CaucusesCaucuses are private meetings between the mediator and one of the parties or a group of participants with similar interests or goals. Aside from the meetings with the medical team and the family before the initial joint session, caucuses, though a useful tool, are rarely used in bioethics mediation. Nonetheless, caucuses may be necessary to help the parties articulate their questions, explore the interests under-lying their positions, and order their values and preferences. For example, when a party appears intimidated or disempowered, a caucus can provide the emotional, intellectual, and sometimes physical space for quiet contemplation, perhaps allow-ing him or her to regain enough emotional composure to better understand the facts, implications, and options. In a caucus, family members can decide how they are going to proceed with the process of decision making. Parties may request that some or all of what is discussed in caucus not be shared with the other party. To repeat, however: in bioethics mediation, the confidentiality rules are different. However, there are situations in which the mediator will not divulge information told to him or her in private that may be critical to understanding the emotional construction but not relevant to the clinical decisions. In some cases, mediators caucus only once with each party. In other cases, the mediator may use multiple caucuses, sometimes with joint sessions mixed in. Whenever a mediator caucuses with one party, it is important that he or she also meet in private with all others. The possibility of private sessions is best introduced during the mediator’s opening statement. Mediators use caucuses for a variety of purposes: to allow expression of strong feelings without increasing the conflict; to cut off unproductive communication; to provide an opportunity to discuss the situation without the stress of talking in front of the other participants; to obtain confidential information; to clarify issues; to reality test with one party where doing so in a joint session might make the mediator seem partial to one side; to avoid reactive devaluation and other psycho-logical phenomena that research has shown can get in the way of finding solutions (Arrow et al. 1995); to prevent one or both parties from getting entrenched in early positions; to explore possible power imbalances; to address unproductive tactics and coach on how best to use the process; to allow parties to take risks in generat-ing options and exploring alternatives; to test a party’s bargaining range; to break a deadlock; and to help a party evaluate a proposal. Mediators should also be aware of potential problems with the use of cau-cuses. Initially, caucuses may make one or both parties suspicious. Mediators may use caucuses prematurely or too frequently because of their own discomfort with conflict, thereby depriving the parties of the opportunity to work together to ad-dress underlying issues and resolve their differences.


Reality TestingOne of the tasks of a mediator is to help the parties be realistic about their goals and predictions. Reality testing, most often used in caucus, encourages parties to abandon extreme positions and think more realistically about possible solutions. One of the most common methods of reality testing is simply to ask what will happen if the problem is not solved. Another, in the face of an extreme demand, is to ask how the person making the proposal thinks the other party will respond. For example, a bride and her mother are furious because they ordered peach roses for the wedding but the florist provided yellow and pink, which, in the women’s view, ruined the visual effect they had planned for the day. The florist sued in small claims court after they refused to pay any part of the bill, three thousand dollars. Well into the mediation and after the florist has explained that the peach roses available the day of the wedding were wilted, the mother is still refusing to pay anything. In a private session with the mother and bride, the mediator might, after acknowledging their disappointment, say: ”So help me understand how you think it is fair that you pay nothing at all for the flowers. What do you think a judge would say about that?” In a dispute between neighbors about noise in which the upstairs neighbor refuses to consider options such as removing shoes, moving the TV to another lo-cation, or putting in carpet, the mediator (again in private session) might ask: “So do you have a lease? And does your lease, like most standard leases, require that 75 percent of your apartment be carpeted?” Another reality test might be: “You’ve said you are upset by the constant battles with your neighbor. How is refusing to make any changes going to help end the battles?” In the health care setting, when a family is refusing a DNR for a frail and clearly dying patient, the mediator might pose an indirect reality-testing question by asking a physician to describe the process of resuscitation so that the family is able to understand the violence of the intervention.

Reversing RolesMediators can help a party gain insight into possible solutions by asking questions that invite him or her to consider how the other party in the mediation experi-enced a particular situation, how he or she would respond if in the other party’s shoes, or what he or she thinks the other party will say about an offer. Role reversal can seem closely linked to reality testing but, at its best, goes further and helps parties broaden their perspective on the problem and develop empathy for one an-other. However, in many disputes parties are too angry to care about or be willing to consider the other’s perspective.

Developing OptionsMediators should remember that parties’ first proposals are rarely the best, because they are based on imperfect information. Taking time to explore the parties’ inter-ests, gather information, and then develop a range of options often leads to much richer and more nuanced solutions. (Useful studies on brainstorming and gener-


ating options include Adams 2001.) Be aware, however, that recent research has found that people faced with too many choices make suboptimal decisions (Ariely 2008; Guthrie 2003).

NormalizingPeople in conflict often feel isolated and hopeless because they have never encoun-tered the sort of problem they are facing now and cannot imagine a way out. Sim-ply letting them know that others in similar situations have found solutions can be enormously helpful.

Packaging ProposalsResearch has shown that factors that influence the way people respond to a pro-posal include whether they see it as a gain or loss (loss aversion), who made the pro-posal (reactive devaluation), and what they believe about why the other party acted as he or she did (attribution theory) (Allred 2000; Arrow et al. 1995; Mnookin, Peppet, and Tulumello 2000, 165–66). Loss aversion describes the tendency of individuals to take risks to avoid a loss but to avoid risk when faced with a gain. Research in this field suggests that how a proposed solution is packaged—as a gain or as a loss—significantly affects the like-lihood of its acceptance. For example, in a dispute between neighbors about noise, the man upstairs may see a proposal that he stop playing music after ten o’clock as a loss, which may make him willing to risk litigation over the nuisance complaint. If, however, the proposal is framed as leaving him free to play music until ten with-out worrying about the reaction of the downstairs neighbor, he is likely to see it as a gain worth holding onto rather than risking a worse outcome in court. Reactive devaluation describes the phenomenon that leads people to be suspi-cious of proposals when they are offered by someone they view as an enemy but to be accepting when the same proposal comes from someone they trust (Arrow et al. 1995; Mnookin, Peppet, and Tulumello 2000, 165–66; Thompson and Nadler 2000). The line of thinking seems to run: “That seems like an interesting idea, al-most what I was going to propose, but my adversary is suggesting it, so it must be good for him. And if it is good for him, it must be bad for me.” Attribution theory suggests that whether people respond to a perceived offense with anger and blame may depend on the beliefs of the offended person about why the offender acted as he or she did (Allred 2000). For example, someone cutting in line at the checkout counter is likely to be met with angry words, while someone who cuts in saying, “I’m so sorry, but I need to get home to my sick child,” will be met with cooperation. Mediators can improve their chances of avoiding these cognitive barriers that block resolution by using caucuses to float proposed solutions without attributing the solution to the adversary and by packaging proposals as gains for both sides (for more on such barriers, see Arrow et al. 1995; Thompson and Nadler 2000).


Focusing on the FutureOften by the time parties get to mediation, they have become hostile and are fo-cused more on who is to blame than on the problem and what to do in the future. Thus the mediator’s job, after gathering enough history to understand what brought the parties to the mediation table and why they may react in certain ways, is to re-direct the parties’ concern about blame to what needs to happen now. Whereas in a trial the focus is on proving facts and assessing blame for past behavior and events, in bioethics mediation the focus is on the present and the future—on determining the parties’ current goals and finding a solution to the dispute. These are only some of the techniques mediators use to help parties resolve their disputes. They can be powerful tools, so mediators should use them responsibly, remembering that the mediator’s role is not to impose his or her ideas on the par-ties but to empower the parties by helping them explore solutions and choose the resolution that honors their goals, values, and needs.

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Part III

Chart Notes

Once the participants in a bioethics mediation have reached principled resolution on a recommended course of treatment, the role of the bioethics mediator shifts to a more standard function of the clinical ethics consultant. That function is the creation of a chart note that accomplishes three tasks:

1. Communicates the agreement reached and explains the ethical bases for that agreement couched in a recommendation that reflects the nature of the principled resolution

2. Explains the resolution/consensus in terms of commonly agreed upon ethi-cal concepts

3. Elucidates the process and the product so that staff members who were not present will be able to understand and implement the agreement

Communicating the mediation consensus agreement regarding treatment and the rationale for that consensus, or the failure to reach agreement and the reasons for the failure, is essential to understanding the dynamics of the case. Thus, when the clinical ethics consultant writes the chart note, she takes on roles that in many ways diverge from that of neutral mediator. She becomes an advocate for the reso-lution as well as an educator and norm enforcer. Part III provides a framework for writing chart notes that permits effective oversight and quality improvement for clinical ethics services, as well as guidance about the goals and structure of chart notes. The chapter also contains a number of short analyses of common ethical is-sues that can be used as a guide for a principled resolution and for the substance of educational sections in the chart note.

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6

How to Write a Bioethics Mediation Chart Note

Introduction

The bioethics mediation chart note has a special place in the medical record. As a subset of a note on clinical ethics consultation, it must adhere to conventions of ethical analysis and standards for best practice in clinical medicine. It must be knowledgeable, readable, clear, and descriptive of the narrative history of the case, compelling in its identification and analysis of ethical issues, and respectful throughout to patients, family members, and the staff. It should lead by example. The chart note should: (1) reflect and discuss the process of the mediation; (2) relate the story of what happened to the patient and how the family and signifi-cant others were involved; (3) explain and analyze the ethical issues in the context of the case; (4) detail the options that were generated by the mediation; (5) discuss the consensus reached; and (6) present the agreement as the basis for the recom-mendations for the future care of the patient. The note should also educate the reader about the ethical issues that were involved in the consultation, as part of the on going augmentation of staff knowledge and awareness. This chapter, like others in the book, reflects our heightened awareness of how bioethics mediation relates to clinical ethics consultation. As discussed earlier, it is our contention that many, if not most, clinical ethics consultations involve the resolution of conflicts, and that those involved in the conflict are best served by a mediative approach and the specific techniques and skills that mediation offers. There are times, however, when clinical ethics consultants must address factual or policy questions, or aid in clarification that stops short of intervention as a media-tor. The chart note needs to be clear about what the issue or problem was, about the process used in reaching a decision, and about the implications of this consulta-tion for like situations in the future. First, bioethics mediation is a subset of clinical ethics consultation in that it recognizes that the presenting bioethics dilemma is really a conflict and therefore is best addressed with awareness of the dynamics of conflict and with tools for resolution. But it is also a conflict that occurs within a complex institution that provides health care. Thus bioethics mediation must respond to the patient’s values, expressed preferences for health care, needs, wants, and desires, generally as repre-


sented by the family, and to the understood ethics of providing care as expressed by the care providers. However, the mediation must do so in a context affected by the organizational ethics of providing care as defined by institutional arrangements and policies structured by case law and state and federal regulation. What happens dur-ing the consultation is most important, but how it is conveyed and communicated is also critical. Second, more than most consultations, one that carries the label bioethics comes (often mistakenly) with an aura of right and wrong, good and bad, ethical or not ethical—territory that must be addressed cautiously. How issues are resolved in clinical ethics disputes is subject to the same vagaries of dynamics as are other con-sultation areas of medicine in which there can be good-faith disagreements among equally talented professionals. Professionals of goodwill, skill, and intelligence can disagree about the label and the subsequent analysis that applies in any patient care situation. The recommendation of the clinical ethics consultant or the consensus reached in a principled resolution of bioethics mediation must still be implemented by the care team as part of the plan of care. A clinical ethics consultation, like any other consultation in the care of a patient, is but a recommendation to the attend-ing physician, who is legally responsible for the course and conduct of the patient’s care. A bioethics mediation that reaches a consensus is also a recommendation to the physician. Almost always the physician is a part of the mediation and thus has bought into the process and the outcome as it develops. Third, many on the care team may have been present at the bioethics media-tion, but they generally represent only one shift of care providers. In most institu-tions there are three shifts a day, and all the care providers not present at the media-tion need to be brought up to date on what has happened, what the reasoning was for the resolution and the consensus, and what the suggested plan is for patient care in light of the mediation. So the chart note is a way of communicating the process and the outcome. Because of these realities of medical care in institutional settings, the chart note is key to the effective implementation of the resolution arrived at during the bio-ethics mediation. In the complex authority structure of health care institutions, the mediation consensus must be endorsed and adopted not only by the attending physician, if she or he was not present at the discussion, but also in special cases by others in the institution. If, for example, the family agreed to a palliative plan of care for their dying mother, if she were to be given “special vitamins from her home country” (a mediated solution in one case), the head of the pharmacy would need to vet and agree to that plan. Thus the chart note is key to moving a consensus from theory to reality. A bioethics mediation chart note tells a story. It explains to the naïve readers—rotating staff members who were not at the mediation but encounter its outcome in the chart—what happened and reinforces the event for the participants in the consultation: what happened, how it happened, who the players/stakeholders are—patient, diverse family members, various providers—what their interests are, how those interests are either in concert or conflict, how the options for care were ethi-cally developed and supported, how the consensus was reached, and how it might

How to Write a Bioethics Mediation Chart Note 97

be implemented. Much of the narrative perspective presented in this discussion has been honed over the years in scholarly debate among academics and providers and in particular collaboration with Rita Charon, MD, the master of narrative ethics. It was Dr. Charon who first proposed that any medical chart note could be read as a short story. It has a plot and perhaps a subplot. It has intertwining characters, some of whom have interacted before and have a history together, and some of whom are new to the setting and the issues. It demonstrates the power, and perhaps the prejudice, of providers and the cooperation, compliance, or obstinacy of patient or family (often labels applied to patients or family members who agree with or who challenge the smooth operation of the medical machine and the established culture or various prejudices of the members of the care team). How the play-ers—patient, family, and providers—perceive the situation and their prerogatives, threatened rights, or imperiled interests determine, to some degree, how they play out their roles. The chart note author, especially in clinical ethics consultation and bioethics mediation, is also a character in the unfolding narrative; she, too, has a role and in-terests. Her interest is largely conducting the bioethics mediation in light of the is-sues and the needs of the parties. She “employs expert discussion of bioethical prin-ciples, practices, and norms and uses reason, facilitation, negotiation, or media tion to seek a common judgment regarding a plan of care going forward” (Dubler et al. 2009, 26). To the extent that the case requires the mediator to take on a norm-explaining and norm-enforcing role, that intervention should be reflected in the narrative of the chart note and in the section that addresses the ethical issues and analysis. That patient decisions are framed within and constrained by common ethical conventions and laws of modern U.S. health care makes bioethics mediators almost always to some degree norm explainers and sometimes norm enforcers. Bio-ethics mediators are just that: professionals in bioethics with mediation training, and both sets of expertise must be demonstrated in the chart note. The bioethics mediator should present the options that encompass, to the de-gree possible, all the clashing, colliding, and conforming values and interests of the parties. She is the reflector of all the past and recently collected history and the pur-veyor of the present clashes of perspective, needs, wants, and desires. It is through her eyes, and in her voice, that the chart note takes form. That voice should reflect the reality of the meetings and interactions. Finally, as part of the hospital chart, the bioethics mediation note is a docu-ment with legal implications. It is part of the record of the care of the patient in the institution. It may be subject to subpoena and may be discoverable as a precursor to being introduced as evidence if the care is ever challenged in a court proceeding. The bioethics mediator thus should generally remain silent on the state of the law. If the chart note is typed—and best practice argues that it should be (Dubler et al. 2009, 26)—it can be an excellent vehicle for transmitting an ethical analysis of the situation, the dynamics of the consensus, and the resolution reached and recommended to other offices in the institution, such as the Office of the Medical Director or the Office of Legal Counsel. Experience indicates that a transparent process in regard to these and other related, allied, and coordinate players in the


institution establishes trust among levels of institutional decision makers. If a case might be of concern to the Office of Legal Counsel or the Office of Risk Manage-ment, the chart note can be e-mailed to those offices after it is placed in the chart. The integrity of the process does not permit negotiating the content of chart notes. The effectiveness of the bioethics mediation service and awareness of its role as one among many institutional players argues for sharing the note when appropriate. Be aware, however, that some situations may not be appropriate for clinical ethics consultation at all, depending on the issues and the prior determinations of administrators. If there has been a consultation on a case that was referred to me-diation as a last-ditch effort, by which time the parties hate and distrust each other, the chart note must be written very carefully and with the full expectation that it will someday emerge in court. Be especially aware of cases that involve very hostile family members or patients who are threatening to sue; of cases in which a suit has already been instituted; and of cases that involve special circumstances, such as wards of the state who are liv-ing in group homes as long-term mentally ill or congenitally retarded persons for whom special state rules regulate decisions about care. As a responsibility of the clinical ethics service, the bioethics mediator may be asked to attempt an interven-tion. In such cases, chart notes must be constructed with special attention to their possible later exposure in court.

The Chart Note

Clinical ethics consultation and bioethics mediation are not stand-alone interven-tions. They are part of the fabric of delivering clinical care to the patient. Clini-cal ethics consultation and bioethics mediation are clinical services that help the patient, family, and members of the medical team clarify, maximize, and evaluate ethical options and the benefits and burdens of these options. The bioethics media-tor then communicates these discussions, the consensus reached, and the recom-mendations through a note that is placed in the patient’s chart. The clinical ethics consultation chart note, whether the product of mediation or not, communicates best with the entire medical team if it follows a standard template. Using a template helps readers recognize that this is a different sort of note, designed to convey an unusual kind of material. Over time, as members of the institution become accustomed to seeing ethics and mediation chart notes in patient records, use of a standard template also helps readers know where in the note to find specific information.

A. Time and place of the consultation and list of participants. This section locates the discussion. It sets the stage—cramped or spacious, orderly or somewhat chaotic. It may describe a meeting in an empty room in the Medical Intensive Care Unit with staff sitting on beds and on the windowsill. The conditions of the con-sultation and the participants emerge here. This section identifies persons present at the consultation and provides their


Clinical Ethics Consultation Bioethics Mediation • Chart Note Template

This checklist is for use when managing a clinical ethics consultation or bio-ethics mediation and as a template for constructing a bioethics mediation rec-ord of the intervention in a chart note. Its elements are designed to remind the consultant of the relevant issues in mediation or consultation and to serve as a tool to assess the adequacy of the draft note before it is placed in the chart.

Date of consultation Name of consultant

A. Time and place of the consultation and participants

1. Note person requesting the consultation [for reasons that might emerge in the mediation, this fact might not be recorded in the chart]

2. If it was not the attending physician, inform that person and request involvement.

3. Involve critical care providers, the clinical team and specialists consulted.

4. Determine whether the patient is cognitively able to participate. 5. Conduct a face-to-face patient visit. 6. Contact, inform, and involve important family stakeholders. 7. Determine who is making decisions on the patient’s behalf.

B. Relevant medical and social history

1. Present ethically relevant medical history. 2. Present ethically relevant social history.

C. Consult implementation

Discuss these issues: Was the consult largely mediation—that is, dispute

resolution among care providers, family, or patient? Was the consult largely consultation—that is, clarification

and analysis of relevant ethical principles and practices? Were there meetings/discussions with care providers only? Were there meetings/discussions with family only? Was there a joint meeting/discussion with care

providers and family (or patient/proxy)?

(continued)


D. Ethical problem

1. What was the ethical/mediation issue(s)? 2. Identify which of the following ethical issues most apply: Advance directives Allocation of scarce resources Assent and consent Benefit burden analysis in care options Best interest standard Brain death and reasonable accommodation Confidentiality Conscientious objection Consent to and refusal of treatment Cultural values and treatment Dealing with the adolescent patient Decision-making capacity Decisions about artificial nutrition and hydration Decision making in the neonatal intensive care unit “Demanding families” DNR orders Doctrine of double effect Do not resuscitate and do not intubate End-of-life balance of acute and palliative care interventions Failure of the medical team to assume responsibility

for difficult medical choices False choices Informed consent Medical fertility Palliative care Religious values and treatment Sharing the burden of responsibility Signing out against medical advice Substituted judgment Therapeutic exception Truth telling Withdrawing and withholding treatment Other (describe)

(continued)


E. Ethical Analysis

1. Integrate the relevant bioethical knowledge into the note. 2. Be certain that the chart note is sufficient for educational purposes.

F. Summary of Process

1. Give a clear description of the dynamic of the discussion. 2. Reflect the voice of the patient. 3. Record the voices of the family stakeholders. 4. State the positions of the care providers. 5. Document disagreement among health care team members and

family members and the consensus reached in resolution.

G. Recommendations

1. State the consensus and recommendations clearly. 2. If consensus was not achieved, state the recommendation.

H. Style

Review for use of appropriate and neutral language.

titles (house officer, hospitalist, patient’s attending, social worker for the patient, etc.). It also explains which important staff members were not present and why. If the patient’s attending physician, or others necessary to understanding the history and future possible courses of medical action, did not participate, the note should indicate whether or not they were contacted and why the meeting was held in their absence. If possible, a bioethics mediation about care for a decisionally capable patient takes place with the patient present. If there is some reason to exclude the patient from the discussion, which would be odd indeed, the reason is noted in the chart (see Chapter 19). If the patient is able to participate but chooses not to attend, the note should record that she has been interviewed and should state her preferences clearly. Respect for patients requires that the patient be encountered as part of the pro-cess. A clinical ethics consultant should never write a chart note, or even convene a discussion about a patient’s care, without having encountered the patient. Some-times that means trying to rouse the patient and failing to do so. The attempt is what matters. If the patient is not alert, aware, and communicative, then the note


should state that the patient was visited and give the consultant’s impression of that visit, supported by additional material in regard to decisional capacity.

B. Relevant medical and social history. This is a more difficult section to write than one might think. Nonmedical staff must be clear about what the sentinel medical issues are that correlate with the ethical questions. Before placing this sec-tion in the chart note, new consultants who are not medically trained find it wisest to prepare a draft of this section of the note for review by a medical person. This section needs to indicate whether the medical history of the patient was clear and provide sufficient facts so that readers have a sense of the course and development of the illness or condition. Was it clear that there were, or were not, additional medical consultations that needed to be explored or facts that needed to be clarified? Were all at the meeting satisfied that the medical discussion explained the present status and possible future options for the patient? This is an interesting section to construct, as the complexity of families is one of the givens of modern bioethical and literary life. As Leo Tolstoy famously observed in the opening line of Anna Karenina: “Happy families are all alike; every unhappy family is unhappy in its own way.” This section needs to explore the patient and family history as they relate to the decisions that are looming.

C. Consult implementation. This section describes the initial arc of discussion with the care providers, including what issues were raised, what disagreements sur-faced, and what possible resolutions emerged. It should reflect the progress and process of the various meetings, telephone calls, e-mails, and other relevant inter-actions. It is often helpful for the chart note to include brief quotes; this textured language makes the discussion more authentic and vivid. The note should attempt to capture the tone of the conversations and the voices of the patient, family, and care providers, especially if the patient is no longer able to participate in the dis-cussion. The bioethics mediator should choose carefully in order to capture and record the feeling, tenor, emotion, information, and dynamic of the meeting. This discussion helps direct readers’ attention to the relevant ethical issues and how they should be resolved.

D. Ethical problem. This section describes the ethical problems encountered in the consultation and, if possible, assigns them to categories. This is a critical section in the chart note and is the core of the consultant’s obligation to educate. It should address the categories of bioethical problems that have been elucidated in bio-ethics and legal literature. Clinical ethics consultants should explain the contours of the problem, both in the mediation itself, where teaching is always appropriate, and in the chart note, where the same holds true for staff education (see “Typical Ethical Issues and Analysis” at the end of this chapter for categories and analytic discussion). This section should not focus on the identification of principles—autonomy,


beneficence, nonmaleficence, and distributive justice. These are perfectly good midlevel ethical principles that animate much of the philosophical discussion in foundational bioethics, but telling the staff that a problem is solved by a deonto-logical or consequentialist analysis is not helpful. Nor it is helpful, in and of itself, to identify the ethical issues involved. Autonomy may be the platform for the dis-cussion, but it needs more elaboration to be ethically useful to the staff, patient, family, and chart-note readers.

E. Ethical analysis. This is a central feature of the chart note and draws on all of a clinical ethics consultant’s training. The paragraphs suggested in “Typical Ethical Issues and Analysis” at end of this chapter will be very useful in this regard, as they can provide a roadmap for the analysis. Ethical knowledge and mediation skills are what qualify the bioethics mediator for the role. This section needs to be clear but not extensive.

F. Summary of process. This section follows closely on the ethical analysis section and describes the process of dissection and disaggregation of issues, discussion, and consensus building. Conversely, it describes unmanageable conflict that can’t be ameliorated by the consultation process. This section describes the discussions that took place among the staff and be-tween staff members, patient, and family in order to help those staff readers who were not present to understand how the decision evolved. The more the narrative relays the developing dynamic of the conversation, highlighting its nuances, the better the readers understand what happened. If there were shifting positions, de-scribing these will help readers understand how the decision turned out and why.

G. Recommendations. This is an extremely important and very complex section to create. This is not a medical note that will suggest a medical intervention, although carrying out the ethical recommendations may require some medical follow-up. This is a recommendation that should emerge from the case discussion and analysis of the chart note and must reflect the categories of a principled resolution. The recommendations section for a complex case might read:

Case summary: This is a difficult case of a medically complex patient, with COPD and a below-the-knee amputation, whose ability to remain at home and be safe is in question. However, despite some deficits, with the support of her son, all concluded that it was worth the attempt at one more discharge to home. Neither the patient nor her son wants her discharged to a nursing home. The patient has sufficient capacity to assess her situation and to opt for some level of risk in her setting to meet her needs for independence and au-tonomy. This is an example of “supported autonomy,” which depends in large measure on the ongoing involvement and caring interventions of her son. However, as these remain in place, it seems not to endanger the patient more than her capacity to assume risk would support.


Recommendation: This patient, with some cognitive deficits and complex medical conditions, has sufficient “supported autonomy” to be discharged to her home with the supervision and support of her son. Both the patient and the son are aware that the complexity of care may determine that this discharge plan is not possible. However, both the patient and the son value independence and privacy and opt for this choice now, even though it was not the preferred staff plan.

This wording would have been more helpful to readers than that of the recommen-dation actually written in the case:

Recommendation: There is no reason at the present time to push for nurs-ing home placement. Neither the patient nor her son wants it and we have a discharge plan that may work. We have K’s cooperation. The big question is how the patient will respond.

The suggested recommendation is also far better than the sort often seen that states:

Recommendation: Psychiatry should assess her capacity one more time. The pulmonary service should be asked to assess the oxygen machine in the home to determine whether or not it is working at peak capacity. Home care should assess her for services.

A clinical ethics consultation or a bioethics mediation is focused on decision-making dynamics and power of choice, maximizing options and choosing from among them. It is not a medical consultation that provides medical direction; it is an ethical consultation that provides guidance in decision making. It should therefore couch its recommendations in the language and form of ethics and not as a set of medical directives. An ethics consultation, whether explanatory, didactic, analytic, or meditative, should provide a set of recommendations that utilize and reflect ethical concepts and language. Ethics should beget ethics.

H. Style. The language of the chart note should be precise, careful, respectful, and nonjudgmental. Slang should be avoided in favor of more formal medical, ethi-cal, or sociological language. Avoid abbreviations and all derogatory terms. For instance, labeling a patient a lolfof—a little old lady found on the floor—does not advance her dignity. The chart note should model the sort of language and presentation that should be the goal for medical communication. The following are several particularly comprehensive examples.


Chart Note Example #1

The following chart note was written after a mediation with only staff present. It involved a fifty-seven-year-old male admitted from a nursing home after being found unresponsive. He had multiple medical problems and a clear lack of the decisional capacity that would permit him to choose among medical options. As described in the chart note, he was consenting to and refusing care on an inconsis-tent basis. The staff was deeply divided as to whether he should be coerced, cajoled, or tricked into undergoing certain tests, with the oncologist arguing for the most aggressive plan and the nursing team more willing to accept the consequences of no further tests and treatment. There had been heated exchanges between and among these groups and various members of the house staff in discussions peppered with charges of unethical behavior. It was at this point that the bioethics mediator was called. After a discussion of several hours, the team reached consensus, which was the basis for the recommendation in the chart note.

Clinical Ethics Consultation/Bioethics Mediation

Patient: GHMR# 000000

Time and place of consultation and participants: AB, MD internist and attending of record, CD, MD consult liaison psychiatry attending, EF, MD psychiatry resident, GH, Ethics, IJ, Ethics, KL MD Ethics. Location of consultation: Hospital 6B. The patient was interviewed in his hospital room. Discussion followed in the nurses’ workroom on the unit. Consult was requested because the patient, who appears not to have de-cisional capacity, is refusing recommended medical care. But he is consistent and clear in his position, although that position may not be responsive to the issues at stake. The staff was conflicted on how to proceed.

Relevant Medical and Social History: Mr. GH is a fifty-seven-year-old man who lives in XX Care Center nursing home. He has lived there for about five years. He has a history of psychiatric illness, homelessness, and substance abuse. Additional medical history includes diabetes and hypertension. Prior to living in the nursing home, he did not seek regular medical care. In the nurs-ing home, his diabetes is managed with insulin but remains poorly controlled. He is treated with antipsychotic medications in doses used for the treatment of schizophrenia. Mr. GH was admitted to the hospital in [date]. In the nurs-ing home he was described as being found pulseless, received CPR, and was revived. Throughout the hospitalization, he has been clinically stable, without evidence of cardiac illness. He has intermittently refused blood draws. As part of the workup for a possible syncopal spell or cardiac arrest, a chest CT with contrast was done to rule out pulmonary embolus [PE]. There was no PE, but a speculated lung nodule was found, highly suspicious for lung cancer. To fur-


ther evaluate his cardiac status, the cardiology team has recommended cardiac catheterization. To further evaluate the lung nodule, the pulmonary team has recommended a bronchoscopy and biopsy of the nodule. Mr. GH has refused both tests. Mr. GH states he has parents in a western state as well as a brother and sis-ter there. He has provided no contact information. The nursing home records have no contact information for friends or family.

Consult implementation: I first interviewed Mr. GH in his hospital room. He knows that he is in the hospital because he passed out and that there might have been something wrong with his heart or lungs. He remembered having the CT scan and did remember that it had showed something that might be cancer in the lung. He remembers that more tests would be needed. He does not wholly believe that there is a tumor in the lung, stating a few times, “I never had that before.” I told him again about the bronchoscopy that would be necessary to definitively diagnose cancer and he said a few times, “I don’t want that.” When asked why, he said, “I never had that before.” He seemed upset by giving a piece of his body in the form of a biopsy. He said, “There must be a better way to do that.” When asked if he would want to know if he had cancer, he did not answer directly or definitively. I asked if his brother and sister were people he would confide in about this kind of medical problem. He said yes, and that they would tell him to have the tests, but that he didn’t want to. He stated his plan is to go home to the nursing home and come back to the hospital if he gets sick. He declined an offer to view the CT scan to see the tumor. I explained that the bronchoscopy was needed to try to see if he had cancer, and that if he had cancer, it could kill him, and that his doctors wanted to prevent that. He does not believe that he could have cancer or die from it. When asked what he is giving up by not having the recom-mended tests, he said he was not giving up anything. He does not understand that at the point he develops symptoms it could be too late to cure. When offered the option of trying the test, but stopping if he didn’t like it, he said no, he didn’t want to start.

Ethical problem and ethical analysis: Mr. GH is a patient who does not understand, or more precisely avoids, the nature of the medical problem he is facing. He does not understand the risks and benefits of the plan for workup his doctors have recommended. He does not have the capacity to provide informed refusal. He has nobody that can act on his behalf as a surrogate deci-sion maker who might argue with him or contest his decision. However, his prior very clear and distinct pattern is to avoid medical care; some call this a “sedimented life preference” that is a strong pattern of be-havior that is independent of understanding particulars of any situation. He has a hernia causing an enlarged scrotum that is the size of a small watermelon that he has never allowed to be fixed. In the hospital at this admission he has


consistently stated that he does not want invasive procedures, but has toler-ated a noninvasive test. This consistency over time in his refusal of medical care could be viewed as adding up to a statement of who he is and how he approaches life even without confronting the reality that we as caregivers encounter. Honoring these consistently stated preferences may honor the patient’s steady conviction but may not be in the patient’s best interest. Some might argue that this is a moment to employ the “best interest standard”: This standard requires an objective assessment of the relative burdens of

the benefits of available treatment options. Since this standard is employed when there is no knowledge of a particular patient’s prior wishes or inferred wishes, it is primarily an impersonal standard. In the absence of such particularized knowledge, the best interest standard considers what would be most likely to benefit or promote the well-being of a hypothetical reasonable patient in the same circumstances as those of the patient. Any additional information specific to the particular patient being treated might also contribute to an assessment of what is in his or her best interest [drawn from “Typical Ethical Issues and Analysis” at the end of this chapter].

However, this patient has a consistent pattern of choice that would contest the use of the best interest standard. This patient is not “decisionally capable,” as he does not understand that his life might be saved by proceeding now and may not be if he waits until he is symptomatic. Decisional capacity requires the components that follow that this patient does not possess:

Capacity refers to the patient’s ability to perform a set of cognitive tasks, including:

• Understandingandprocessinginformationaboutdiagnosis,prognosis,and treatment options

• Weighingtherelativebenefits,burdens,andrisksofthetherapeuticoptions

• Applyingasetofvaluestotheanalysis• Arrivingatadecisionthatisconsistentovertime• Communicatingthedecision[drawnfrom“TypicalEthicalIssuesand

Analysis” at the end of this chapter]

Some might argue that he should not be allowed to choose a potentially harm-ful plan of care if he does not understand the harm. He has told the care team that he likes his life in the nursing home and he has given no indication he is ready to die. Additionally, Mr. GH did not indicate that he would not want


to know if he had cancer. He did leave also a door open when he said, ”There must be a better way to do that,” which I took to mean that he might be will-ing to undergo further noninvasive tests that did not involve taking tissue.

Options: The team debated the following options about which there was, at the outset, no consensus:

1. The oncology physician argued that we should be proceeding with bron-choscopy with “administrative consent.” However, the patient would need to provide assent to even begin the procedure or be sedated at the very outset. Advantages—a definitive diagnosis could be made according to the recommended care plan, which may allow a definitive treatment, i.e., sur-gery, to be done. Disadvantages—going against the patient’s stated wishes, uncertain that Mr. GH would go along with follow-up care (blood draws, etc.) which might be required to minimize the risks of bronchoscopy/surgery. Even more invasive procedures would be required to fully realize advantages of this diagnostic test.

2. The nurses caring for the patient argued for discharging the patient to the nursing home without further workup and revisit when/if Mr. GH agrees to invasive tests or develops symptoms. Advantages: honoring Mr. GH’s stated wishes. Disadvantages: missed opportunity to provide for Mr. GH care that optimizes his chance of healthy survival. Because it has been difficult to contact the MD at the nursing home, continuity of care is not ensured. A plan for treatment/palliation of symptoms when they arise would need to be in place.

3. The house staff argued for pursuit of further noninvasive tests if these would provide additional information, such as a PET scan to evaluate for metastatic disease and a stress test to evaluate for high-risk coronary artery disease. The presence of either might alter the plan of care. Advantages: Because Mr. GH has a history of getting accustomed to things and allow-ing them more over time (insulin, medication), this plan may get more information for him and give some time for him to understand he may have cancer and assent to the workup. Medical conditions (metastases, severe cardiac disease) that would decrease his chance of having a favor-able outcome with surgery or chemo could be uncovered and added to the risk/benefit analysis. There is a small possibility that Mr. GH could have a cancer that is curable by surgery and that he could medically tolerate that surgery well. Disadvantages: continued hospitalization. Mr. GH prefers to go to the nursing home.

Recommendation based on consensus: The team agreed that this is a patient with strong life themes who is inconsistent in his acceptance or refusal of care. He consistently refuses what he considers to be invasive tests. He has agreed to noninvasive testing. It is not clear how he evaluates these. As PET scanning and stress testing might offer useful data that could be incorporated into the


care plan, and as these might be acceptable to the patient, it is suggested that these be performed, if possible with the assent of the patient. Pursuing this sort of interim plan requires that the care team and the clini-cal ethics consultant agree to reconvene when more information is available to recalibrate the risks and benefits of further invasive procedures for Mr. GH. A follow-up meeting will take place.

Chart Note Example #2

The chart note that follows was written for a case in which the staff was caring for patient who was dying and unable to acknowledge her terminal breast cancer. Her inability to participate in planning for her best care had pitted the surgical service against the palliative care service in terms of who had the responsibility and au-thority to manage her care. The stress caused by her case was heightened because she arrived at the hospital on the Wednesday before Thanksgiving. In this case the bioethics mediator met with the patient alone, the patient and her husband (who was also in denial), and the surgical service and the palliative care service both sepa-rately and together to try to figure out how to care for this patient.

November 26, 20XXA, B. Time and place of the consultation and participants; relevant medi-cal and social history: This consultation took place on the surgical service. This case involved a fifty-four-year-old woman with recurrent breast cancer who had put off treatment until the lesion had developed into an open and foul-smelling wound. She had been married less than a year before and she was committed to keeping her “secret”—the fact that she was dying—to her-self. Her husband was committed to the same process of secrecy. The resident team on the surgical service where the patient was placed was uncomfortable with the nondiscussion of the fact that the patient was dying. The consult was called by the surgical resident who was in charge of the patient’s care, although it had been determined by the surgical attending that there was no possible surgical intervention in this case. The patient had been admitted to the hospital from the Emergency Department and when it was observed that there was bleeding from the tumor, she was admitted to surgery. At the time of the consultation, the patient was receiving dressing changes, transfusions for blood loss, and radiation, all of which were palliative. Each time the dressings were changed there was extensive bleeding. Diagnostic tests had indicated widespread metastases to the brain, spine, bones, liver, and pancreas. Despite the diagnosis and prognosis, in conversations with the husband, he requested that the tone of talk with the patient be “upbeat.” Part of the problem was that this consultation was the Wednesday before Thanksgiving and the patient’s primary oncologist was not available. The mediator met first with the care team, then with the husband alone, then with the wife-patient


alone, and then with the couple together, followed by the staff again. Taking her cue from the patient and her husband separately and together precluded any open and honest discussion of the fact that the patient was dying. The staff accepted this state of affairs but remained uncomfortable.

C. Conduct of the consultation: The mediator was stymied in her inclina-tion to get all the parties together. The shared commitment to the “secret” made open discussion impossible. As a result this mediation was done almost exclusively by independent caucuses, the substance of which was relayed to the parties as appropriate. The mediator continued to return to the patient, which resulted in the second note in this case.

D. Ethical problem and analysis: The first issue presented is whether a pa-tient with this degree of denial is capable of making health care decisions. Determining whether a patient has the capacity to make medical decisions is often a key ingredient of a clinical ethics consultation. Decisional capacity is not a legal determination (this is called “competence”) but a clinical one that can be made by any member of the health care team who is familiar with the patient and has interacted with him or her over a more or less extended period of time. Capacity refers to the patient’s ability to perform a set of cognitive tasks, including:• Understandingandprocessinginformationaboutdiagnosis,prognosis,

and treatment options• Weighingtherelativebenefits,burdens,andrisksofthetherapeutic

options• Applying a set of values to the analysis• Arriving at a decision that is consistent over time• Communicating the decision

Having capacity enables an individual to make decisions; it does not obligate him or her to do so, and in fact a person with decisional capacity may waive the right to make decisions or confer this right on others [drawn from “Typi-cal Ethical Issues and Analysis” at the end of this chapter]. In this case the patient is in denial (or is acting as if she is), as is her hus-band, although a conversation alone with him after the consult indicates that he knows that she is dying. That does not mean that she cannot choose among options for care that are presented by her care team. In this case the most appropriate staff would be the palliative care team. However, the title of the team might be disturb-ing to the patient, and thus a palliative care consultation should be arranged without being labeled as such.

Recommendation: This case involves a dying woman who is comfortable continuing all palliative care interventions despite the fact that it prolongs and extends her dying process. She wants every moment of life that can be hers.


Radiation, blood transfusions, and dressing changes, which might be uncom-fortable to some patients in her condition, comport with her stance on her condition and her nonacceptance of her dying status. As such her choice is to die slowly and in the hospital rather than, perhaps, more quickly at home on hospice, an option that her denial makes unavailable to her. The team needs to be assured that this is an extreme case of denial but one that warrants our ethical support as the choice of a capable patient. One exception to the above would be in the case of a blood shortage in the hospital at which time the blood service would have to decide if blood would be available for palliative purposes for this patient and for all others with com-parable need.

While this case was not a classic example of a bioethics mediation, since the patient, her husband, and the medical team never met as a group, mediation tech-niques were critical to its resolution. There is a hook of a bioethics issue, that of the capacity or lack thereof on the part of the patient. But, more important is the plight of staff, patient, and family caught in the grasp of hard decisions with no real choices. (The following second note in the case was added two days later.)

I have met with the patient and she stated clearly that she wants her husband to make decisions about her care. This idea—called delegated autonomy—is within permissible ethical analyses. This patient does not want to hear about her impending death. We cannot force her to engage with us. Dr. O—[the head of the palliative care team] and I have discussed this case, met together with the patient, and agreed that oblique communication, not direct, is likely to continue. This is a capacitated patient who wants (has chosen) to be pas-sive. She cannot and will not confront her dying. We will need to support her comfort without her clearly accepting or refusing interventions. Her husband is beginning to meet with the team and discuss the options that are presented. He is sad but is adjusting to the situation and to the needs of his wife.

Typical Ethical Issues and Analysis

These mini-discussions of important ethical concepts were written largely by Jeffrey Blustein, who was part of the faculty on the Clinic Ethics Credentialing Project and is now professor of philosophy and Zitrin Professor of Bioethics, City College of New York. The paragraphs track the list of ethical issues listed under “D. Ethical problem” in the bioethics mediation chart template.

Advance directives. All patients who are capable of making decision have the right to execute an advance directive to ensure that their wishes will be followed if they become incapacitated. Advance directives may be oral or written. There are basically two types, living wills and proxy or health care agent ap-pointments. A living will is a document that explains what the patient would want


if in the future she could no longer discuss the decision and provide contempora-neous informed consent. Living wills are value neutral and could be used to pro-spectively request or refuse care. Most living wills, however, are structured to refuse interventions like surgery, ventilators, and antibiotics. Health care proxy appoint-ments give the person appointed general ability to make decisions for the patient based on the standards of what the patient has said she would want (explicit direc-tive), what one could surmise she would want from her behavior and pattern of life (substituted judgment), and absent both of these, what is in her best interest. Health care proxy appointments are generally more flexible and more responsive to the nuances of medical conditions than are living wills. Proxy appointments permit the team with the proxy to begin an intervention, to assess its success, and then to continue or withdraw it as the condition of the patient requires. Living wills are less flexible and tend not to reflect the nuance of patient wishes: “I do not want a ventilator” does not generally mean that the patient would not want a few days of supported breathing if the result is likely to be effective and then would let the pa-tient continue unassisted. Living wills tend to make absolute rather than nuanced statements, and as such are less appropriate to the art of medicine.

Allocation of scarce resources. A condition of scarcity occurs when demand ex-ceeds supply, and medical examples include intensive care resources and transplant-able organs. An important distinction is between scarce and expensive resources. Ventricular devices are currently extremely expensive resources, but they are widely available. By contrast, hearts for transplant are expensive as well as scarce. Scarce resources are generally also expensive, but the converse does not hold. Another dis-tinction is between natural scarcity and created or artificial scarcity. For example, ICU beds are an expensive resource that is made into a scarce resource by an orga-nizational decision limiting the number of beds. If the institutional budget permit-ted ICU expansion, more beds could be made available. In contrast, solid organs, such as hearts, are from the outset a scarce resource because of their finite supply, and the scarcity cannot be eliminated entirely. When the scarcity is a created or artificial one, an appropriate question to ask is what it would take to eliminate the scarcity and at what cost to other programs meeting other needs. Sometimes, because the cost would be ethically prohibitive, the scarcity must be accepted as the least bad arrangement. Scarce resources are those that cannot meet the needs of all who could benefit from them, and therefore some way of setting priorities among the recipients must be devised. Because not everyone who could benefit can receive the resource, some will have to go without, and this may mean some will have to die. Because of the stakes involved, decisions regarding allocation of scarce resources must be based on sound medical and ethical criteria. Ethically, a system of allocating scarce resources must be both fair and designed to benefit the greatest number of patients. In the case of ICU care, priorities are established and patients with a greater likelihood of benefiting from ICU care are given preference over those who are less likely to benefit from care in that setting. Generally accepted medical criteria exclude patients who won’t benefit from critical care because it would be physiologically


futile, or they are in a persistent vegetative state or are brain dead. Criteria that are considered ethically unacceptable include ability to pay and social worth.

Assent and consent. Effective informed consent provides ethical as well as legal authorization for the physician to treat. Consent contrasts with assent. The latter, a notion with particular relevance in pediatrics, reflects the patient’s agreement with a treatment plan, rather than authorization of it. Only when the conditions of informational disclosure, understanding, and voluntariness have been met in the context of decisional capacity can the patient’s consent or refusal be considered truly informed. Though young children cannot provide truly informed consent to treatment, they can, depending on the circumstances, assent to it, at least in the sense that they do not actively oppose it. Assent in this context is important because it facili-tates treatment that is deemed to be in the child’s best interest. It may be difficult it not practically impossible to treat a child who is unwilling to cooperate with the plan of care. As the child matures and becomes an adult, he may be able not merely to assent but to provide legally and ethically valid consent. Among incapacitated adults, assent also has value. Though an adult patient may lack the capacity to con-sent to dialysis, for example, long-term treatment is likely to be unsustainable if the patient persists in actively opposing it.

Best interest standard. Frequently treatment decisions must be made for patients who lack capacity and cannot decide for themselves. These may be persons who were formerly but are no longer capable of making decisions, or individuals, like newborns or severely retarded persons, who never had the opportunity to form values or preferences. The standards for health care decisions for patients who lack capacity give preference to the patient’s voice as the central and most widely ac-cepted source of authority. In some cases, the decision maker may rely on the prior stated wishes of the patient or, if these are not known or were never articulated, the inferred wishes of the patient. But when neither is possible, the decision maker must rely on a best interest standard. This standard requires an objective assessment of the relative burdens of benefits of available treatment options. Because this standard is employed when there is no knowledge of a particular patient’s prior wishes or inferred wishes, it is primarily an impersonal standard. In the absence of such particularized knowledge, the best interest standard considers what would be most likely to benefit or promote the well-being of a hypothetical reasonable patient in the same circumstances as those of the patient. Any additional information specific to the particular patient being treated might also contribute to an assessment of what is in his or her best interest. In assessing best interest, both the outcome and the probability of achieving this outcome for different treatment options should be considered. In the clinical setting, the best interest standard would consider mitigating pain and suffering, prolonging life, restoring and enhancing comfort, and maximizing the potential for independent functioning. In all cases where this standard is invoked, best interest should be determined as far as possible from the perspective of the patient, not that


of the decision maker. A life that may be unacceptable to the decision maker may be acceptable to the patient, and it is the latter standpoint that the decision maker should adopt.

Brain death and reasonable accommodation. According to traditional criteria of death, death is the irreversible cessation of heartbeat and respiration. How-ever, with the advent of heart transplants in the late 1960s, it became necessary to supplement this definition with a neurological definition that allowed the timely retrieval of usable organs for transplantation. The first well-accepted definition of brain death was the product of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, which issued its report in 1968. The committee defined brain death as the irreversible cessation of total brain func-tion. The Uniform Determination of Death Act, adopted in 1980 by the National Conference of Commissioners on Uniform State Laws, expanded the definition of death to include both cessation of circulatory and respiratory function and brain death. Brain death should not be confused with other neurological conditions, such as permanent vegetative state or minimally conscious state. Though the nature of death has been a question with which philosophers and theologians have wrestled for millennia, there is widespread consensus that, medi-cally speaking, a brain-dead patient is dead, period. The qualifier brain can be con-fusing to families because it suggests that only one organ of the patient is dead, so many clinicians prefer to use the expression dead rather than brain dead. Patients who are brain dead might have their organs maintained on a ventilator for some period of time, awaiting organ retrieval, and families often have difficulty accepting that the patient is truly dead when looking at a body that is warm and healthy colored, has a heartbeat, and appears to be breathing. It only adds to the family’s confusion to say that the patient is brain dead but “is being kept alive” on a breathing machine, and such language should be avoided. Because the definition of death raises deep ethical, religious, and philosophical issues, some patients and families—for example, some Orthodox Jews and Mus-lims—reject defining brain death as death. Their religious and ethical convictions should be respected to the extent of making an effort at reasonable accommoda-tion. Reasonable accommodation includes, for example, continuing ventilation, nutrition and hydration, and/or medications for a short, specified period of time. It does not mean that the now dead individual should continue to be treated as a patient. Since brain-dead patients can no longer benefit in any way from care, they should not remain in the ICU in particular, where resources are scarce and should be allocated to those who can benefit from them the most.

Confidentiality. Confidentiality is one of the bedrock ethical principles in health care. The principle of confidentiality has a number of bases. First, respect for per-sons underlies patients’ right to control who has access to their health care informa-tion and requires that medical records and communications in the clinical setting be protected from unwarranted disclosure. Control of this information can be seen as a form of self-determination. Second, the effectiveness of the clinical relationship


and the resulting quality of the health care provided depend on an atmosphere of trust between the patient and the physician, and this trust is facilitated by confi-dentiality. Without assurance of confidentiality, patients may be reluctant to pro-vide all relevant information about their medical condition. Third, confidentiality protects patients from unauthorized disclosure of information that, if made public, may be personally embarrassing or damaging to them. The principle of confidentiality governs other relations as well, including priest-penitent and lawyer-client, and various protections for the confidentiality of these relationships are established in the law. In recognition of the fact that most health care today is provided by teams of medical professionals, and consonant with the requirements of the Health Insurance Portability and Accountability Act, the prin-ciple of confidentiality does not preclude the free exchange of patient information within the team caring for the patient. In other ways as well, changes in health care delivery have altered the contours of the principle of confidentiality, allowing legal and government bureaucracies and third-party payers access to personal medical information. The principle of confidentiality is not absolute. There are three exceptions: first, when the patient poses an imminent risk of serious harm to him- or herself; sec-ond, when the patient poses an imminent threat of serious harm to identifiable others (as argued in the 1976 case Tarasoff v. Regents of the University of California); third, when the patient poses an imminent threat of serious harm to society at large (the so-called public health exception, as in cases of reporting infectious diseases).

Conscientious objection. Conscientious objection refers to a situation in which a physician or other caregiver opts out of participating in a plan of care or provid-ing a particular medical service on moral or religious grounds. Most hospitals have policies permitting conscientious objection, as long as certain other conditions are met. Common examples include objection to honoring the decision of a patient or surrogate to forgo life-sustaining treatment or to institute a do-not-resuscitate order, and objection to assisting with or performing an abortion. The grounding in religious or moral principles is definitional of conscientious objection. Thus, ob-jection to participating in withdrawal of life support because it reminds one of an unpleasant experience from one’s past does not count as conscientious objection, however much we may sympathize with the clinician’s reluctance. Similarly, treat-ment that the physician believes is detrimental to the patient’s best interest is not the same as treatment to which a physician has a conscientious objection. The rationale for honoring conscientious objection is that it respects and pre-serves the clinician’s personal integrity. One’s moral and religious convictions rep-resent what one stands for on a deep level, and they constitute one’s identity as a responsible individual accountable for one’s actions. To violate them is to do dam-age to one’s moral and religious identity; and to bar an individual from engaging in conscientious objection is to put him or her in the position either of resigning or violating his or her conscience. It is unfair to health professionals to put them in this position. At the same time, there are certain conditions that must be satisfied if conscien-


tious objection is to be permitted. First, the clinician who conscientiously objects must notify the patient or surrogate, as well as his or her supervisor or superior, that religious or moral convictions prevent his or her participation. Second, the ob-jecting clinician must make reasonable efforts to find another nonobjecting clini-cian to take his or her place and to arrange transfer of the patient to that physician. Continuity of care should be maintained as far as possible, and nonabandonment remains an important ethical obligation. Third, if transfer of the patient cannot be arranged, the objecting health professional may have to provide the requested ser-vice, depending on the seriousness of the patient’s medical condition and prognosis with or without the intervention.

Consent to and refusal of treatment. The flip side of a capable patient’s right to consent to proposed treatment is the right to refuse proposed treatment. It is an established principle of law and ethics that a capable patient has the right to refuse any proposed medical treatment, even if its likely consequence is his or her death. Respecting the patient’s refusal, like seeking the patient’s consent, is an aspect of honoring the patient’s right to autonomy. Refusal of recommended treatment should initiate a discussion about the rea-sons for the refusal. The patient might not understand the nature of the treatment that is being proposed and its potential risks and benefits, may have certain fears relating to the treatment that can be addressed, or may have a treatable depres-sion. Because of their profound implications, refusals of life-sustaining treatment in particular should receive heightened scrutiny. In general, in the case of treatment refusal, special attention should be given to the adequacy of the information pre-sented and the quality of the explanation, possible language or cultural barriers to understanding, and the patient’s capacity and appreciation of the consequences of forgoing treatment.

Cultural values and treatment. Patients and family members live in the real world of different cultures and in the sui generis world of their own making. There are documented differences among cultures that have profound differences on how they think about and make health care decisions. In Japan, for example, it is most unusual for a physician to talk with the actual patient about diagnosis and prog-nosis. In certain Native American cultures, language does not reflect reality but creates reality. For patients and family members steeped in these traditions, the Western medical commitment to open discussion of diagnosis, prognosis, alterna-tive treatments, and risks and benefits of those treatments could be alarming and even harmful to the patient. There is always the possibility of a clash between the legal and ethical dictates of contemporary American medicine and the traditions and comfort zones of persons whose values and expectations are honed in a differ-ent culture. In addition to the difference of cultural context, there is the matter of family conventions and arrangements, some of which may be conscious and chosen but many more of which are unconscious and accretions over time of frequent success-ful patterns of interaction. Some families leave all decisions to the paterfamilias, as


the embodiment of power and authority. Others cede decision-making aegis to the mother or have a gradual evolution to the children. These patterns precede, and will likely dominate, the medical crisis. Understanding the family dynamic is im-portant in establishing trust and opening up useful communication about options for care.

Dealing with the adolescent patient. Adolescence is a developmental stage that falls between childhood and adulthood and that shares properties of each. By the age of fourteen, the normal child demonstrates a capacity to reason, including the ability to understand the causes and effects of illness, that is both as good and as flawed as it will be in adulthood. However, the capacity to reason is not the only ingredient of decisional capacity, and adolescent capacity may be deficient in other respects. Other factors include personal values, biological and emotional maturity, life experience, and appreciation of the long-term consequences of one’s actions. Moreover, the capacity of adolescents to make autonomous decisions is enormously varied because it is tied to the development of a sense of identity and to the adop-tion of a more or less stable set of values. As the adolescent matures, she acquires an increasing ability to assume control of and responsibility for her own decisions, and correspondingly, a greater weight should be given to her values and wishes. All these factors make ethical decision making for adolescents very complex. Adolescent decisions are typically the product of less experience and more vola-tile emotions than are adult decisions, and compared with those of adults, the deci-sions of adolescents reflect immature self-image, unrealistic appraisal of risks and consequences, and susceptibility to peer pressure. However, the decision-making capacity of some adolescents is not impaired in these ways, especially older adoles-cents or those who have lived with chronic illness for much of their lives. While the law makes categorical distinctions between adults and minors based on some-what rigid and arbitrary standards, ethically a more individualized assessment of adolescent decisional capacity is required. The factors to be considered include the adolescent’s emotional maturity, her ability to solve problems and consider alterna-tives, and her experience with illness and loss.

Decision-making capacity. Determining whether a patient has the capacity to make medical decisions is often a key ingredient of a clinical ethics consultation. Decisional capacity is not a legal determination (this is called competence) but a clinical one that can be made by any member of the health care team who is famil-iar with the patient and has interacted with him or her over a more or less extended period of time. Capacity refers to the patient’s ability to perform a set of cognitive tasks, including:

• Understanding and processing information about diagnosis, prognosis, and treatment options

• Weighing the relative benefits, burdens, and risks of the therapeutic options

• Applying a set of values to the analysis


• Arriving at a decision that is consistent over time• Communicating the decision

Having capacity enables an individual to make decisions; it does not obligate him or her to do so, and in fact a person with decisional capacity may waive the right to make decisions or confer this right on others. It is an established principle of law and ethics that adults who have the capacity to make their own medical decisions should be permitted to do so. Not to give them the opportunity to make their own decisions is a violation of their right to autonomy. Decisional capacity is decision specific, that is, it varies according to the com-plexity and seriousness of the decision at hand: more complex and more weighty decisions require a greater degree of decisional capacity than do less complex and less serious ones. The appointment of a health care agent, for example, requires only a fairly low level of decisional capacity, whereas deciding whether to have a compli-cated surgical procedure requires considerably more. In addition, decisional capacity is not always clear-cut or necessarily constant. In some cases, there may be no definite answer to whether the patient has the capacity to make a particular decision. And depending on their age, cognitive abilities, clinical condition, and treatment regi-men, patients may exhibit fluctuating capacity. For example, elderly patients often exhibit greater alertness, clearer reasoning, and better communication earlier in the day. Drug interactions can also cause a temporary loss of capacity.

Decisions about artificial hydration and nutrition. The issue of withdrawing artificial hydration and nutrition frequently arises for patients who have perma-nently lost consciousness; it is also considered for patients who are irreversibly and terminally ill and do not tolerate the procedure well. Ethical concerns about for-going artificial hydration and nutrition often take the form of worries that we will be “starving” the patient if he or she is not fed or hydrated. However, existing medical opinion suggests that patients who have permanently lost consciousness do not experience pain or discomfort following the withdrawal of artificial hydra-tion and nutrition. Less information is available about the experience of patients in the end stage of the dying process, but available information here too suggests that these patients appear to experience little if any discomfort when routine comfort measures are provided. In fact, provision of artificial hydration and nutrition can in some instances actually increase the patient’s discomfort and cause numerous complications, including pulmonary edema, nausea, and mental confusion. Ethical debate about artificial hydration and nutrition has centered on whether these measures should be distinguished from other treatments on medical or clini-cal grounds. On one side, some argue that artificial hydration and nutrition con-stitute basic care rather than medical treatment, hence that artificial hydration and nutrition should almost always be provided. Also, some commentators argue that forgoing artificial hydration and nutrition intentionally causes death—unlike, say, the forgoing of ventilatory support—and is tantamount to killing. On the other


side of the debate are those who argue that artificial hydration and nutrition should not be distinguished from other medical treatments. They are not universal needs for all persons but interventions in response to an underlying disease and condi-tion. In addition, it has been argued that forgoing artificial hydration and nutrition is crucially different from intentional and active killing. The view that artificial hydration and nutrition are not to be distinguished from other medical treatments is reflected in statements by the AMA’s Council on Ethical and Judicial Affairs and recent court decisions.

Decision making in the neonatal intensive care unit. Decision making in the NICU involves three parties—caregivers, parents, and the state, in its role as parens patriae, or protector of the vulnerable. In this setting, parents have a great deal of authority to make decisions on behalf of their newborns, including, in some cir-cumstances, the right to terminate life-sustaining care. Our society’s deference to parental decisions rests on respect for family integrity, the presumption that parents act in their child’s best interests, and the need to have a designated authority to make such decisions. Specifically, three ethical rules guide decision making in the NICU:

1. If the parents are making decisions that are medically indicated and clearly in their child’s best interest, their decision should be supported.

2. If the parents are making decisions that are not medically indicated and not in the child’s best interest, their decision should be resisted.

3. If it is unclear whether the parents’ decision is in the child’s best inter-est, or if there is legitimate disagreement about this, the parents’ decision should be respected.

Conceptions of benefit and harm may be defined differently by caregivers and par-ents, creating conflicts in the NICU over how or even whether to treat their sick newborns. These conflicts may reflect different conceptions of what constitutes an acceptable quality of life for the child. In addition, prognostic uncertainty compli-cates decision making. Often conflicts between parents and caregivers can be re-solved as the child’s condition and prognosis become clearer, parents are given time to absorb bad news, and parents receive the emotional support of the team. Part of this emotional support is dispelling the notion that they are monsters because they have decided to terminate life-support for their critically ill newborn.

“Demanding families.” Health professionals sometimes find themselves confront-ing families that they describe as “demanding,” “difficult,” or “unreasonable.” It is important for good patient care to uncover and deal with the source of these prob-lems. Families may demand treatments that clinicians judge to be therapeutically inappropriate or otherwise not indicated, such as dialysis for a patient who is ac-tively dying; or families may refuse treatments that are clearly medically indicated, such as a lifesaving blood transfusion for a young child. Another possibility is that


families may try to micromanage care for their loved ones. However, although family members often provide consent for recommended treatment, there are ethi-cal limits to what they may demand or refuse, and these limits are set by existing standards of care. Though members of the health care team may feel intimidated by demanding families, there is no ethical obligation to provide treatment simply because the family wants it. Boundaries also have to be set by the health care team to prevent intrusive and obstructive interference by family members in the care their loved ones receive. Demands for treatment should trigger a discussion with families that explores their understanding of the patient’s medical condition and prognosis, the specifics of their demands, and their hopes and expectations for the patient. A mediation approach, which seeks to level the playing field and provides a forum for all inter-ested parties to voice their concerns and raise questions, is often helpful in these circumstances. Families may demand that “everything” be done without having an understanding of what “everything” encompasses or that everything reasonable and medically indicated is already being done. Carefully probing their concerns may reveal fears and misconceptions that can be addressed. In the end, however, if no consensus can be reached between family and caregivers, it is the ethical obligation of health professionals to adhere to the standards of practice in medicine.

DNR orders. An order stating that a patient should not be resuscitated (“do not resuscitate,” or DNR) means that in the event of cardiac or respiratory arrest, resus-citation efforts will not be initiated. The resuscitation team will not be called emer-gently, according to the institutional code, to the bedside to administer stimulating medications, to insert a breathing tube, to pound on the chest, and most invasively to open the chest and engage in cardiac message. It is now appreciated that certain patients with complex medical problems and multiple organ failure will not survive the resuscitation itself; it is even more un-likely that they will survive until they can be discharged. Thus an unwitnessed cardiac or respiratory arrest in a frail elderly patient will almost certainly result in death. DNR orders are now an accepted practice in ICUs, and their use follows basic ethical and scientific guidelines. Patients who are decisionally capable are often asked to choose whether they want resuscitation. If a dying patient, with relevant data presented, chooses this intervention, it should normally be honored. For incapacitated patients, the family is often approached for direction. In these circumstances it is imperative that the medical team know the data on survival and be ready to bear the burden of sug-gesting either that resuscitation would be helpful or that it would only prolong the process of dying. Family members should be shielded from being primary deciders, as they will often struggle to avoid responsibility and deny complicity. Many family members, weighing the risks and benefits and choosing a DNR order, feel as if they have signed the patient’s death warrant. It is thus critical for the staff to bear the burden of the decision without disempowering the family who for emotional or social reasons must insist on resuscitation. In these discussions, staff must empha-size that the patient will not be medically or emotionally abandoned if the order is


written but rather will be saved an intervention that would extend and complicate the dying process.

The doctrine of double effect. The doctrine of double effect was formulated in response to the recognition that an act may have both a good and a bad effect. Ac-cording to this doctrine, the permissibility of an action depends largely on whether the bad effect is intended or is merely foreseen and permitted to happen. In addi-tion, it must also be the case that the act is not wrong in itself; the good effect is the result of the intentional act, not the result of the bad or harmful effect; and the benefits of the good effect outweigh the foreseen but unintended bad effect. The doctrine of double effect has been used to support adequate palliation of symp-toms, especially at the end of life. The doctrine recognizes that, while the admin-istration of sufficient opioids to manage pain at the end of life may risk depressing respirations enough to hasten death, the clinical and ethical mandate to relieve suffering is paramount. The physician’s intent is not to kill but rather to alleviate pain, although he fore-sees that death is possible, perhaps even likely. Also, giving drugs to relieve pain is not wrong in itself, and the good effect—the relief of pain—is produced directly by the administration of the drug, not by the patient’s death. Finally, when a patient is terminally ill and suffering, the desirability of relieving pain sufficiently compen-sates for the shortening of his or her life. The doctrine of double effect is recognized as a valid ethical principle by pro-fessional medical associations, as well as by state and federal courts of law, includ-ing the Supreme Court in the 1997 physician-assisted suicide cases. However, the doctrine also has its critics. They argue that the doctrine is often difficult to apply because it not always easy to know whether a result is intended or merely foreseen, or whether it is brought about by the bad effect (e.g., the patient’s death) or by the morally neutral action (e.g., administration of pain killers). Whatever the final ver-dict about the difficulty of its application, the doctrine is an important part of the practice of end-of-life care, and it would be unwise to abandon it. To do so would risk equating pain relief that has the effect of causing death with pain medication administered in order to cause death, and this would have a detrimental impact on the quality of patient care near the end of life.

End-of-life balance of acute and palliative interventions. As a patient nears the end of life, or experiences pain and suffering that can be alleviated, the balance between acute interventions and palliative interventions will likely shift. The shift requires involving the patient, and the family if the patient desires, in a discussion of the obligations of medicine to address the needs of the patient, in pursuit of greater health and well-being, or to address the symptoms of the patient in need of comfort. These are not incompatible goals; however, the balance will likely shift as the patient becomes less likely to return to a prior stage of function and the discomfort, both physical and emotional, or the illness advances. In this gradual shift to a different sort of intervention, it is critical to assure the patient and loved ones that the patient is not being abandoned but is being offered


those interventions that are best suited to present needs. The shift does not entail withdrawing or withholding acute care interventions but rather providing those interventions designed to address the advancing prognosis and symptoms of the patient.

Failure of the medical team to assume responsibility for difficult choices. Medi-cine is not magic. It cannot prevent a patient who is in the process of dying, after all appropriate interventions have been offered, from that ultimate end of the hu-man condition. Much of religion and philosophy is addressed to the existential crisis of life, which is always death. However, medical staff can—and should, when possible—shield the patient and the family from the feeling or the notion that they are in any way complicit in this death. Thus it is important for the team to be clear and precise about how the inevitability of death limits and changes the options for care. As with the later section “False choices,” it is important for the team to as-sume the responsibility of stating that the treatment will not be of benefit and that they do not recommend it. This course is far preferable ethically and practically to offering a treatment and leaving it to the family to reject the offer—and to feel re-sponsible for the inevitable negative outcome.

False choices. The suggestion is sometimes made that the full disclosure necessary for informed consent requires that the physician offer patients and families all pos-sible treatment options for their consideration. However, this is an incorrect inter-pretation of what informed consent requires, because some care decisions do not require and should not impose the burden of patient or family consent. These are cases of false choice, in which patients and families are asked to reject interventions that have no clinical indication and that can provide no real benefit. Presenting patients and families with false choices actually diminishes rather than enhances the exercise of their autonomy, and abdicates the professional’s responsibility to exercise clinical judgment and to guide patients and families in ways that make clinical sense. When reversal of or improvement in the patient’s condition is no longer pos-sible, it is inappropriate for physicians to present care options in a way that suggests otherwise. Interventions that are physiologically futile (see the later section “Medi-cal futility”) or outside the standards of medical practice should not be proposed. When specific treatments, such as dialysis, antibiotics, or vasopressors, are no longer effective, it is disingenuous to present them to patients and families as if they were real options, and unfair to burden them with a choice that is not theirs to make. This is not an instance of medical paternalism that disempowers patients and fami-lies. Rather, it involves physicians assuming responsibility for making the judgments that only physicians can make, and leaving patients and families with choices that fall within the realm of the medically possible. In this way, physicians support rather than usurp the genuine health decision-making authority of patients and families.

Informed consent. Informed consent is a process of communication between physician and patient characterized by mutual participation, respect for the au-


tonomy of the patient, and shared decision making. Informed consent is not a perfunctory discussion or a signature on a document. The legal doctrine of in-formed consent, out of which the ethical principle developed, was initially based on the law of battery, holding that any unconsented-to touching constituted an unlawful act. The signal case establishing the principle of informed consent in medicine was Canterbury v. Spence, 464 F.2d 772 (D.C. 1969), which held that the physician is obligated to provide sufficient information about a procedure’s risk so that a reasonable patient can make an informed decision. All health care procedures and treatments require the informed consent of the patient or an au-thorized representative. Informed consent has a number of requirements. There are disclosure require-ments: the physician must disclose information about the proposed diagnostic or therapeutic intervention, the purpose of the intervention, the consequences of nontreatment, and alternatives to the proposed intervention; and the physician should make a recommendation about how the patient might consider the benefits and burdens of the intervention. There is also a requirement that the consent be voluntary, that it not be coerced, or forced, or unduly influenced. However, this does not preclude providing a recommendation and support to the patient. Inde-pendent decision making is not the same as isolated decision making. There are a number of exceptions to the consent requirement: emergency care; the so-called therapeutic exception in which disclosure of information is reasonably believed to present a substantial risk of immediate, direct, and significant harm to the patient; and waiver of consent by the patient.

Medical futility. The term medically futile is commonly used quite broadly and loosely to describe treatments that are felt not to benefit the patient because he or she has a very poor prognosis. For example, dialysis for a patient with terminal cancer may be said to be medically futile. However, the term futile should be used with great care and may in fact be unhelpful to the process of resolving conflicts in patient care. Some physicians use futile narrowly, considering treatments futile if they would be physiologically ineffective or would fail to postpone death for any significant period of time. Some physicians adopt a broader understanding of the term to refer to treatment that cannot improve the patient’s prognosis, comfort, well-being, or general state of health. Following this approach, a treatment might be seen as futile if it does not offer what the physician considers to be an acceptable quality of life. Debates about medical futility are not just about labels. How we define futility has important practical consequences for how conflicts in patient care are addressed and resolved. Underlying different definitions of futility are different assumptions about the balance that should be struck between the authority of patients and families, on the one hand, and the authority of physicians, on the other. The term futility commonly functions as a trump card, permitting the physician to discon-tinue or not initiate treatment, and it is appropriately used in this way when it has a narrow physiological sense. Physicians currently have no duty to provide treat-ment that is futile in the narrow sense, even if patients, families, or both request


it. But it is not appropriately used as a unilateral physician trump card when it reflects judgments about acceptable quality of life or broader notions of patient well-being. In general, the term futile should be avoided except in the very narrow circumstances of physiological futility. The danger of using too expansive a notion of medical futility is that it will preempt communication and conversation between the physician and the patient

Medical futilityIn this time of soaring medical costs and proliferating technology, it should not be surprising that an intense debate has arisen over the notion of medical futility, a concept that is as old as medicine itself. Should doctors be doing all the things they are doing—in particular, should they be attempting treatments that have little likelihood of achieving the goals of medicine? What are the goals of medicine? Can we agree when medical treatment fails to achieve such goals? What should the phy-sician do and not do under such circumstances? Exploring these issues has forced us to revisit the doctor-patient relationship and the relationship of the medical profession to society in a most fundamental way. Some argue that medical futility cannot be meaningfully defined, even calling for the term to be expunged from the medical lexicon. Spokespersons for various ethnic and religious groups raise the challenge: What right does medicine have to set its own professional standards over our values? In response, law professor George Annis argues that it is up to medicine, like any profession, to propose its standards of practice, which society can accept, modify, or reject. Other profes-sions, when subjected to outside pressures, stand up for their professional stan-dards. For example, the teaching profession consistently has resisted demands to teach creationism as a science, on the grounds of professional standards, even in communities where it is a majority belief. And within the medical profession itself surgeons make futility decisions every day simply by refusing requests to operate on a patient they deem “inoperable.” As Edmund Pellegrino, chairman of the President’s Council on Bioethics, points out in his article “Decisions at the End of Life”:

Those who call for the abandonment of the concept have no substitute to offer. They persist in making decisions with, more or less, covert definitions. The common sense notion that a time does come for all of us when death or disability exceeds our medical powers cannot be denied. This means that some operative way of making a decision when “enough is enough” is necessary. It is a mark of our mortality that we shall die. For each of us some determination of futility by any other name will become a reality. Some working definition therefore must be recognized by which the criterion of futility can be judged.


or family regarding difficult matters, such as withdrawal or withholding of life-sustaining treatment. Lawrence Schneiderman, a colleague in bioethics who takes a very different ap-proach to this issue than we do, offered the analysis in the box on pages 124–25, which we include at this point in the spirit of open and frank disclosure of schol-arly oppositions. We use this material with his permission.

Today, more and more hospitals are writing futility policies, recognizing it as an inescapable necessity. These policies, like all health care institutional policies, attempt to bridge the gap between the cultures of medicine and the law—physi-cians trying to say legal things, lawyers trying to say medical things. Health care providers tend to seek specific and descriptive definitions of futile treatments, while lawyers and judges seek to put in place procedures that protect vulnerable patients. Definitions and processes are both essential, even when pursuing a “case-by-case” analysis. Without this grounding, end-of-life outcomes run the risk of being deter-mined less by medical circumstances and justifiable standards and more by non-medical factors, including rhetorical skills and economics. Will all hospitals agree on the same definition and process? No. Is unanimity necessary to establish a professional standard of practice? Not at all, given that the law does not demand unanimous agreement among professionals regarding issues that are matters of professional judgment. Rather it allows for a “respect-able minority,” namely hospitals that would continue to provide life-prolonging treatments that the majority of hospitals regard as futile. These hospitals, however, should consider the obligations and actions associated with their position. Spe-cifically, are these hospitals willing to accept the transfer of such a patient? If so, disputes over end-of-life treatments could be resolved without requiring hospitals to go to court. It is worth noting that the word futility derives from futilis, a religious vessel that had a wide top and a narrow bottom. This peculiar shape caused the vessel to tip over easily when filled, which made it of no practical use for anything other than ceremonial occasions in ancient Greece. The root of the term reminds us that words have a mythical power as well as a literal meaning. Is it not possible that unrealistic expectations and unreasonable demands for futile treatments, such as a family’s insistence on attempting cardiopulmonary resuscitation in a cancer pa-tient with barely hours to live, may represent deep ritualistic needs to express love and devotion? CPR, the only intervention that requires no informed consent, has become almost a religious ceremony in today’s television age. Indeed, it is not too extreme to point out that in the past when patients sought a miracle they went to church and prayed to God. Today they come to the hospital and demand it of the physician. It is important to emphasize, therefore, that physicians are not and have never been capable of or obligated to produce a miracle. And comfort care mea-sures are much better ways to express love and devotion.


Palliative care. Providing comfort, especially at the end of life, is not a new con-cept or a departure from the traditional responsibilities of the caring professions. However, its importance has been overshadowed by the tremendous advances medicine has made in recent years in curing disease and forestalling death. The discipline of palliative care has successfully cast the light once again on the notion that relieving pain and suffering is central to the complete and authentic practice of medicine. Its defining philosophy is that cure and comfort are consistent objec-tives that may assume greater or lesser prominence, depending on the patient’s condition, prognosis, wishes, and values. When the potential exists for significant improvement, the plan of care tends to emphasize aggressive curative measures supplemented by comfort measures. As the likelihood of cure fades and the patient approaches the end of life, the goal of care ought to shift, and aggressive palliation should become the primary focus. Aggressive palliation refers to the provision of therapeutic interventions, including narcotic medications and surgery, to relieve pain and manage other symptoms effectively. When curative measures are no lon-ger possible, the message to patients and families should not be, “There is nothing more we can do,” but rather, “There is a great deal we can do to keep the patient comfortable and allow for a dignified death.” The relief of pain is both a professional obligation and a moral imperative, clini-cally as well as ethically mandated. Before the advent of palliative care as a medical subspeciality, it was frequently noted that patients’ pain was often not adequately appreciated or managed and that many patients died in pain. With greater under-standing of pain and of how to assess and treat it, and an enhanced appreciation of the importance of this long-overlooked aspect of patient care, this situation has begun to change in significant ways.

Religious values and treatment. There is broad-based consensus in our society that adults who have the capacity to make their own decisions have the right to consent to and refuse medical treatment, even if that refusal leads to their death. This right is endorsed in the bioethics literature, as well as by federal and state courts of law, including the famous New Jersey case In re Quinlan in 1976, the first right-to-die case to achieve national prominence, and the U.S. Supreme Court decision in Cruzan v. Director, Missouri Department of Health in 1990. The right to refuse unwanted treatment is not predicated on any specific reasons that the patient has for refusing. As long as the decision can be construed as a more or less rational or reasonable one, the obligation to respect it applies. In particular, the refusal of treatment may be based on religious objections, such as the objection of a Jehovah’s Witness to receiving blood transfusions. A person’s religious faith embodies some of his most cherished values and deepest commitments, and respecting them is part of respecting patient autonomy. The right to refuse treatment based on one’s religious convictions does not in-clude the right to refuse treatment for one’s child, especially lifesaving treatment, based on those convictions. Ethically, parents may martyr themselves to their re-ligion, but not their children who are too young to have autonomously adopted religious beliefs. Further, most states do not allow individuals who have a religious


objection to brain death to reject this definition of death (the only exception is New Jersey). What is called for in such cases is “reasonable accommodation,” and this does not include giving patients and their families the right to define death as they choose. Finally, the rights of physicians may impose some constraints on the exercise of religious choice by patients. For example, some anesthesiologists may refuse to participate in surgery on Jehovah’s Witness patients if they cannot use blood as needed.

Sharing the burden of responsibility. It is sometimes assumed that respect for pa-tient autonomy means providing patients and families with full information about available treatment options along with their risks and benefits, and then stepping back and allowing them to make their own decision. However, in most cases, such a view of patient autonomy amounts to truth dumping. It overlooks the very real vulnerabilities that are part of the experience of illness and disability, and the need of patients and families for professional guidance in making sound health care deci-sions. Patients and families depend on such guidance, and depriving them of the benefit of clinical judgment, advice, and support, relying solely on the provision of full information, can be seen as a form of abandonment. Instead, physicians should be encouraged to clearly recommend what they believe to be the most appropri-ate therapeutic course and to discuss with patients and families their reasons for recommending it. Physicians often avoid giving advice, recommendations, and guidance out of the fear that they amount to the imposition of unjustified physician paternalism. But unjustified paternalism means violating another person’s right to freedom of choice, whereas advice and guidance can augment freedom of choice rather than curtail it. Recommending should not be confused with imposing; assisting the exercise of autonomy should not be confused with usurping the exercise of au-tonomy. When physicians share the burden of decision making with patients and families and take some responsibility for guiding them in ways that make best clinical sense, they actually enhance the capacity of patients and families to make autonomous decisions.

Signing out against medical advice. Patients who choose to leave the hospital pre-maturely and against the advice of their physician represent a common and chal-lenging dilemma. These patients who sign out against medical advice are at risk be-cause they have a higher rate of readmission. Finding a balance between attempting to protect patients from making unwise medical decisions and permitting patients to fully exercise their autonomy is challenging. This issue is particularly important because patients facing illness are in a higher-risk state both medically and emo-tionally. Physicians relying too heavily on their patients’ right to self-determination without a careful and thorough evaluation of their decisions may be abandoning patients when they are particularly vulnerable. Framed in terms of ethical prin-ciples, this problem is characterized by the tension between beneficence for patients and respecting patients’ autonomy. Describing the patient’s medical decision as “unwise” in these types of dilemmas


assumes the priority of health concerns over all others. Indeed, health and longevity are only two of many values patients routinely take into account in making deci-sions about their life. Using a nonjudgmental approach to patients’ decisions can collect clearer information about their motivations for leaving the hospital before an appropriate discharge. Better information about patients’ motivating behavior allows physicians to target their counseling more appropriately and potentially ne-gotiate a discharge at a more medically appropriate time. For example, when the clinician is able to determine that the patient wants to leave the hospital because she feels pressure to return promptly to work, he can attempt to reduce that bur-den by focusing on that issue (advocating on the patient’s behalf to her employer), rather than on the conflict over discharge. Discussion with the patient can maximize the possibility that patients who choose to sign out against medical advice are receiving the best possible care. An informed decision means that patients have arrived at their decision by consulta-tion with their provider, not under duress or coercion, and by understanding and appreciating its risks, benefits, and alternatives. Part of this process requires a ca-pacity evaluation of the patient’s decision to discharge herself from the hospital.

Substituted judgment. The standards of proxy decision making for incapacitated patients place particular emphasis on respecting the wishes and values of the pa-tient when he or she had capacity. Often, however, the prior wishes of the pa-tient are not known or were never expressed; in such cases, proxies should consider whether a substituted judgment standard applies. A term originally borrowed from law, a substituted judgment is a decision by others based on the formerly capacitated patient’s inferred wishes. The question for the clinical ethical consultant to ask here is: “Knowing what you know about this patient’s values, behavior, and decision his-tory, what do you think she would decide in this situation?” It may also be helpful to pose the question this way: “Suppose that the patient were sitting here now, ca-pable of making decisions, listening to this conversation and knowing his medical condition and prognosis. What do you think he would tell us to do for him?” Since patients often have not given much thought to what they would or would not want if they became critically or terminally ill, or they have not discussed these matters with others, substituted judgment is frequently a useful approach to deci-sion making for incapacitated patients. Persons who know the patient well and are familiar with his values and beliefs, such as close friends or family members, are in the best position to make substituted judgments. It is particularly important in discussions with them to stress that, as far as possible, they should try to make deci-sions based on what they believe the patient would want, not what they would want for the patient.

Therapeutic exception. Informed consent, including disclosure of information, is generally a requirement of ethical patient care. However, the requirement is not absolute and without exception. In very rare circumstances, physicians may believe that the disclosure of information about diagnoses or prognoses will cause clinically unstable patients to suffer immediate, direct, and significant harm. In these cases,


potentially harmful information may be withheld from patients, even if the patient is judged to otherwise have the capacity to make medical decisions. The rationale for the exception is that disclosure of information is designed to support and fa-cilitate autonomous decision making. When disclosure of information is likely to result in immediate, direct, and significant harm, autonomous decision making is not enhanced but threatened. Even if information is justifiably withheld on therapeutic exception grounds, once the patient’s clinical condition permits disclosure, the disclosure must take place. The therapeutic exception is not a license to withhold information indefi-nitely, regardless of any change in the patient’s medical condition. Further, with-holding information on grounds of therapeutic exception must be based on strong evidence that the patient will or is likely to suffer harm from the disclosure. Con-jecture that the patient may suffer harm, or that the harm may be significant, is not ethically sufficient, given the strong presumption in favor of truth telling and informed consent. In this connection, it is particularly important for clinicians to determine whether withholding information is really for the benefit of the patient, or for their own comfort or the comfort of the family. Breaking bad news is diffi-cult, and it is understandable that clinicians may be reluctant to disclose an unwel-come diagnosis or prognosis to the patient or may defer to a family’s request that their loved one not be informed. However, this cannot serve to justify withholding clinical information from an otherwise capacitated patient. To preserve the basis of trust in the doctor-patient relationship, information should be withheld from ca-pacitated patients only in the narrowly described circumstances of the therapeutic exception.

Truth telling. Collaborative decision making and informed consent depend on the reasonable disclosure of necessary or material medical information. Patients and their authorized surrogates are ethically and legally entitled to information that enables them to understand the likely course of the medical condition, evaluate the therapeutic options, and make choices consistent with the patient’s goals and values. The ethical basis of the principle of truth telling is twofold. First, disclosure reflects respect for the patient’s right of self-determination. Patients or their sur-rogates cannot make autonomous decisions if they are denied information relevant to those decisions. Second, patients are normally the best judges of what is in their best interest, and they may not be able to protect those interests if material infor-mation is withheld from them. The principle of truth telling does not permit physicians and other health pro-fessionals to bludgeon the patient with the truth. Truth must normally be told, but it should be told when the patient is ready to hear it and in a manner that the patient is able to assimilate. If a patient has clearly indicated that he or she is not ready to receive the truth, the truth is not required, at least for the time being. Also, the truth may be withheld if disclosing it would cause immediate, direct, and significant harm, although this occurs only rarely. Withholding truth is not the same as lying, however, and lying is more difficult to justify ethically. Bad news is always difficult to hear, but sadness at such times is normal, and avoiding causing


sadness should not be used as an excuse for withholding information. Indeed, truth telling can be therapeutic, in that it dispels the complicity of silence that often sur-rounds discussion of such matters. There are cultural differences with respect to truth telling. In some cultural groups, telling the truth to the patient is not a moral requirement and may even be frowned upon. In these circumstances, clinicians should ask the patient how much she wants to know about her medical condition, how much she wants to be involved in decision making about her care, and if there is someone else she would prefer to have making decisions.

Withdrawing and withholding treatment. Health care professionals often distin-guish between withdrawing and withholding treatment; as a result, they are some-times willing to honor decisions by patients or families not to start treatment, but will not allow them to refuse treatment once it has begun. Studies have shown that for clinicians there is a significant emotional difference between withholding and withdrawing treatment: in general, withdrawing is felt to be more emotion-ally difficult. This may be due in part to the belief that withholding treatment is an omission, whereas withdrawing treatment is a positive action and hence more culpable. Some regard withholding as letting nature take its course, and withdraw-ing as killing. Over the past decades, however, consensus has emerged that there is no moral distinction between withholding and withdrawing treatment. Whether treatment is stopped or never initiated, all relevant moral factors are the same, including the health professional’s duty to respect the patient’s wishes, the consequences, the intentions, the cause of death, and the potential for abuse. Indeed, if there is any distinction to be drawn at all between withdrawing and withholding, it may favor the former, for withdrawal may occur after a therapy has been tried and found inef-fective or unacceptable to the patient. The law also does not distinguish between withholding and withdrawing treatment. When one is legally permissible, so is the other. It is important to understand that withholding and withdrawing treatment are morally and legally equivalent, for this may facilitate good patient care. If with-holding is believed to be morally or legally permissible, but withdrawing is be-lieved not to be, then physicians may elect not to start treatment and patients may suffer.

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Part IV

Case Analyses

Real cases that demonstrate the strengths and the weaknesses of the mediation process make up this part of the book. The three cases analyzed here come from the files of the Montefiore Medical Center Bioethics Consultation Service. “Mr. Samuels’s Case” (Chapter 7), “Mrs. Bates’s Case” (Chapter 8), and “Mrs. Leonari’s Case” (Chapter 9) tell the stories of three challenging mediations and the me-diators’ reflections on each case. The names have been changed and the medical histories altered to protect the privacy of the patients, families, and care providers. None of the stories, however, has been changed to heighten the service’s successes or disguise its failures. Where memoranda are quoted, they reflect the actual text as closely as possible, while preserving the privacy of the participants. It is important to understand that the order of interventions varies from case to case. Personalities affect the outcome as much as—often more than—theories do. Practice is influenced by factors that are extraneous to the case. So, for example, any conflict that begins to build before a major holiday—especially between Christmas and New Year’s, when most doctors take time off—is doomed to stumble along without much resolution until the key attending physicians and consultants return from a long holiday. The immediate needs of the patient are addressed, but diag-nostic tests are slow to be accomplished, and difficult medical judgments tend to be postponed. Such is life in most teaching hospitals. Reality shapes these narratives, as do power differentials, personalities, unad-dressed discontents, and unrelated family crises; these are patients and families in conflict, and the unfolding narrative cannot be expected to move smoothly. The cases, commentaries, and discussions provide a valuable basis for thinking about the nature and composition of a bioethics mediation. Please note that, as in other sections of the book, all possibly identifying material has been changed.

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7

Mediation with a Competent Patient: Mr. Samuels’s Case

Background

Mr. Samuels was a seventy-seven-year-old man admitted to the medical center from home with end-stage emphysema. According to Dr. Peterman, a pulmo-nologist who had been his community doctor for several years, Mr. Samuels was a “Damon Runyonesque character”—an irascible man who had never married, loved to gamble, and continued to smoke even after his health was threatened. Dr. Peterman treated him for emphysema for many years, although the patient, despite a worsening condition, refused to stop smoking, use his oxygen, or take his medications regularly. One year before the mediation of his case, Mr. Samuels was hospitalized in acute respiratory failure. He had had trouble breathing, he had widely disseminated infection in his blood (sepsis), and he had recently exhibited severe liver damage. At that time he was put on a ventilator. With treatment, he improved and was suc-cessfully weaned from the ventilator, but after he returned home, he deteriorated rapidly. At about this time, his companion of forty years, Dorothy Langer, gave up her apartment and moved in with him. She referred to herself as his common-law wife. Once a very active woman, she now suffered with severe arthritis and was compelled to use a walker. A few months later, Mr. Samuels complained of pain in his side and back, which Dr. Peterman initially thought was due to fractured ribs caused by several falls. Eventually Mr. Samuels was admitted to the hospital with severe back pain; an MRI showed possible metastases and a CT scan showed extensive osteoporo-sis. He was managed with medications, and although a bone biopsy was recom-mended, it was not done. The test requires that a patient lie on his stomach, which Mr. Samuels was unable to do because of his pulmonary compromise. He was put on a ventilator and there was a discussion about the possibility that he might not come off. Mr. Samuels was very clear that he did not want to live like that. Finally, however, a biopsy showed no cancer and he was again weaned from the ventilator. At that time, Mr. Samuels appointed Ms. Langer as his health care proxy.


Subsequently, Mr. Samuels experienced more respiratory problems that led to a readmission to the pulmonary intensive care unit (PICU). He suffered a cardiac arrest and was put back on the ventilator, from which it was not possible to wean him. Mr. Samuels, however, began asking to be extubated or removed from the ven-tilator, clearly articulating his understanding that removal might very well lead to his death. Ten days after the intubation, a tracheostomy was recommended to make him more comfortable and perhaps permit him to speak. Mr. Samuels ini-tially refused and again asked to be allowed to die; this was on a Friday. Dr. Peter-man was concerned about proceeding without Ms. Langer and suggested waiting until Monday when he would again be on duty. During the weekend, Ms. Langer came in with her nephew, a doctor at another metropolitan hospital, and together they persuaded Mr. Samuels to consent to the procedure. Throughout this period, there had been numerous discussions with Dr. Peter-man and other caregivers about the consequences of extubation, and Mr. Samuels had been consistent and clear about his wish to die. At one point, Dr. Peterman wrote on a piece of paper, “You want to die” and “You want to live.” The patient signed his name under the first sentence. Ms. Langer was vehemently opposed to extubation and insisted that Mr. Samuels did not know what he wanted. She was far from certain that he wanted to die. She believed that he was simply depressed. At this point Dr. Peterman asked for a bioethics mediation. The first step the mediator took, after meeting with the care team, was to ask for a consultation with a psychiatrist from Geriatric Psychiatry. Dr. Garrison con-ducted a psychiatric evaluation and found Mr. Samuels to be capacitated and ap-propriately depressed about his situation. In her opinion, it would be unethical to give him psychotropic medicine to combat depression for the sole purpose of changing his mind about extubation. The risk manager, Ms. Torrent, supported the hospital’s honoring the patient’s request. The mediator met with Dr. Peterman and several members of the care team, after which she and Dr. Peterman met for an extended discussion with Ms. Langer. Ms. Langer was quite desperate and had not been open to approaches by Dr. Peter-man or the social worker assigned to the case. She accused Dr. Peterman of trying to influence Mr. Samuels to die and yelled that he should stay away from him. She said that Mr. Samuels was being selfish, thinking only of himself. She also expressed concern about the location of Mr. Samuels’s money and the disposition of the apartment. Furthermore, she said, she had spoken with someone in the Patient Relations Department, complaining about what the hospital was doing to Mr. Samuels and suggesting she might hire an attorney. Dr. Peterman told Ms. Langer that Mr. Samuels was very concerned about her well-being and had asked for the name of an attorney who could help him make a will. Shortly thereafter, the mediator met with Mr. Samuels, who nodded at one point that he wanted to die and at another point that he did not. Mrs. Feather, a supervising social worker, met with Ms. Langer for an extended discussion about Mr. Samuels’s condition, prognosis, and wishes, as well as Ms. Langer’s own needs. Ms. Langer described her background and provided some in-

Mediation with a Competent Patient 135

sights into her current situation. She had been a fashion model, and her orthopedic problems requiring the use of a walker were very distressing to her. Her marriage had ended in a messy, painful divorce and she was distanced from her only child, a son who was a pediatrician in Florida. Ms. Langer expressed her great fear of being alone, especially at night, and her inability to envision anything to live for if Mr. Samuels died. She acknowledged that perhaps it was she who was being somewhat selfish in clinging to Mr. Samuels. She consented to Mrs. Feather’s calling her son and exploring the possibility of her going to Florida to live with him and her two grandchildren. She also revealed that she had a history of psychiatric illnesses and, on her own, called a psychiatrist from liaison psychiatry for help; he agreed to pro-vide ongoing psychiatric treatment. Previously, a nurse from the PICU had asked this psychiatrist, Dr. Burton, to see Mr. Samuels. By the time Dr. Burton met with Mr. Samuels, he had become less certain that he wanted to die and had asked the staff to explore other options, including his going home on the ventilator. Ms. Langer insisted that a feeding tube, also under consideration, would be a poor choice for Mr. Samuels because food was so important to him, and a speech-and-swallowing consult was scheduled to diagnose swallowing problems. At this point most staff thought that the resolu-tion would be a transfer to a nursing home. After a week of consultation and patient vacillation, Dr. Peterman and the bio-ethics consultant posed several questions to Mr. Samuels about future care options. Mr. Samuels was now consistent, expressing clearly that he wanted to be discon-nected from the ventilator and that he accepted that the likely consequence would be death. In fact, he mouthed that he wanted to die and indicated with unequivo-cal hand gestures that he wanted his life-support cut off. He rejected any option that included remaining attached to the ventilator—including being transferred to a nursing home or returning home to be cared for by Ms. Langer and home health aides. Despite his expressed desires in private conversations, Ms. Langer continued to claim that Mr. Samuels did not want to die and would like to be cared for at home. And when questioned in Ms. Langer’s presence, he did sometimes change his statements. After meeting briefly with Mr. Samuels, the care team convened to discuss a plan of care. In addition to Dr. Peterman and the mediator, the team included a representative from Risk Management, two social workers, and two pulmonary residents. The mediator opened the discussion by reminding the team that decisions to terminate life-sustaining treatment are inherently accompanied by ambivalence. Mr. Samuels’s apparent indecision and Ms. Langer’s expressions of fear and anxiety were natural. Nevertheless, it was essential that all participants in the decision-making process concur that Mr. Samuels was now clear and that his expressed interests and his unambivalent wishes were best served by disconnecting him from the ventilator. While no member at the meeting dissented, there remained some lingering uncertainty about whether disconnecting the ventilator would result in Mr. Samuels’s death. The team decided to pursue the following course of action. First, Mr. Samu-


els would have another psychiatric evaluation to establish, finally, his capacity to make a decision about his care and about his death. Second, Ms. Langer would re-ceive grief counseling. Finally, one week from the meeting, Mr. Samuels’s situation would be revisited. If all remained the same (especially his desire to end his present suffering), the ventilator would be disconnected. If he were unable to breathe on his own, comfort care and morphine would be provided. After the meeting, Dr. Peterman and the mediator discussed the plan with Mr. Samuels and Ms. Langer. They made it clear that in one week the situation would be reevaluated and that if Mr. Samuels still wished to be disconnected from the ventilator at that time, his wishes would be respected. In the meantime, the team hoped, Ms. Langer would be able to come to some sort of peace with the possi-bility of his death. The mediator called in a special social work supervisor with experience in bereavement counseling. This person agreed to meet with Ms. Langer daily for the week that the plan was in progress. Assured that his wishes would be respected, Mr. Samuels agreed to the one-week delay. The psychiatrist reported that Mr. Samuels was aware of his condition and clear and consistent about his wants. The final discussion a week later confirmed that Mr. Samuels was ready to have his ventilator disconnected. He said good-bye to Ms. Langer, who went back to their apartment, where her son awaited her. (Ms. Langer had used the week to talk with her son and arrange for him to come to be with her when the extubation took place.) The resident started an intravenous line so that morphine could be provided when needed. At this point, a new question arose, and the mediator and Dr. Peterman en-gaged in a lively discussion about the administration of morphine. The mediator questioned when morphine would be given—perhaps at the outset? Dr. Peterman replied no, that morphine would be provided when the patient indicated discom-fort. He canceled all plans for the remainder of the day. Then he disconnected the ventilator and sat down next to the bed to monitor Mr. Samuels’s condition. Twenty minutes later, Mr. Samuels started to squirm. When asked if he was un-comfortable, he nodded yes. Morphine was administered. Two hours later, when Mr. Samuels still seemed comfortable but was no longer aware, Dr. Peterman and the mediator left. A constant shift of nurses stayed by Mr. Samuels’s bed; he died forty-three hours later.

Analysis

The mediator’s role in Mr. Samuels’s case was sixfold. (This analysis is based on extensive comment from Professor Barbara Swartz.)

1. Supporting the patient. It was important that the mediator not ask Mr. Samu-els the same question continually (“Do you want to terminate life supports?”) so that he would not feel he had to beg for support for his decision. Once capacity is established and clinical depression is ruled out, the role of the mediator is to cap-ture and amplify the voice of the patient. The patient must be told that he has been


heard, that his wishes will be respected, and that there is a plan to implement his choice. This plan represents a principled resolution based on his status as a compe-tent and fully informed patient who has chosen to refuse care and accept death.

2. Exploring all options. The mediator had to consider whether it would be worth delaying the termination of life-support for a few days to help Ms. Langer prepare for the inevitability of Mr. Samuels’s death. If such a delay would not be harmful to the patient and was acceptable to him, it might help his partner and thus also be in his interest. The determinative factor in this decision was how the delay would affect the patient and whether he would agree. If remaining on the ventilator, even for a few days, would significantly increase Mr. Samuels’s physical or existential suf-fering, such a plan would be difficult to justify. If, however, appropriate medication and the assurance of a time-certain plan for extubation would enable Mr. Samuels to tolerate a few more days on the ventilator to promote Ms. Langer’s comfort, her needs might assume greater weight ethically. End-of-life care requires treating the patient in the context of family and beloved others.

3. Determining who would be at the table. The staff of the PICU was very at-tached to Mr. Samuels. He had been there for almost three months and had been cared for by every nurse and house staff officer who had rotated through the unit. He had become part of the family that lives and works together in the PICU; everyone wanted to respect his wishes and not see him suffer. This level of concern among the staff was not crucial to the practical or ethical outcome of the case, but it underlined the importance of including the staff in the decision-making process. Although they did not necessarily like her, staff members were also attached to Ms. Langer. They respected the fact that she was there every day and sat by the bedside. They respected the positions that she took in fighting for Mr. Samuels’s life. They had sympathy for her panic at being left alone; they wanted to support her. Some of the consultants had assumed the care of Ms. Langer, seeing her as a patient to whom they owed separate and individual obligations of care. This sense of obligation to Ms. Langer became a factor in how care providers assessed their roles and responsibilities. As the plan developed, the mediator held frequent conferences with the staff to keep them up to date on Mr. Samuels’s position, on the state of the negotiations, and on the evolution of a plan. She explained that while she was committed to Mr. Samuels’s support, she was equally committed to ensuring that Ms. Langer not be left out of the circle of concern. All agreed. Many staff had suggestions for how to talk to and deal with both Mr. Samuels and Ms. Langer. The developing timetable was discussed and all staff were asked if they wanted, particularly, to be excluded from the staffing during the extubation. No one took this option. All were comfortable with the patient’s decision and all were comfortable being part of the process.

4. Disaggregating the issues and bringing clarity to complex discussions. Two issues, in sequence, challenged the team: the first was Ms. Langer’s inability to face


the fact of Mr. Samuels’s impending death, and the second was Dr. Peterman’s re-luctance to use morphine in the initial stages of extubation. With regard to the first, the mediator worked slowly but consistently to re-iterate the right of a decisionally capable patient to choose to refuse care and ac-cept death. This principle was familiar to the staff, but the issues of prognosis and clinical depression encouraged some staff to question the capacitated basis of Mr. Samuels’s decision and his ability to confront the awesome choice. Although there had been some psychiatric evaluation over the months of Mr. Samuels’s stay in the PICU, the psychiatric consultant requested by the mediator was particularly skilled in geriatric care and was very comfortable with the issue of choosing death. His note in the chart that the patient was “appropriately depressed” by the prospect of death was extremely helpful to the staff. The mediator, acting in the role of consultant within the mediation process, insisted that Mr. Samuels be told that his wishes had been heard and his request would be honored. She then explained to him that the staff would like some time to work with Ms. Langer to help her be ready for his extubation and confirmed that this step would be acceptable to him. In complex multiparty mediation, there is some ethical responsibility to all of the parties, including the staff and the family. The patient is the primary focus, but others have interests that need to be isolated and addressed, if at all possible. Finally, whether and when morphine would be administered was an issue be-tween the mediator and Dr. Peterman, who was determined not to use morphine until he deemed it necessary. The mediator was very concerned about Mr. Samu-els’s comfort but was reassured that Dr. Peterman would be there and would re-spond immediately. Since this was a difficult case for Dr. Peterman, who hates to “lose” a patient, the mediator accepted his stance. Had the physician objected to the use of morphine or set rigid rules, the mediator would have been faced with a different set of issues that might have required triggering a broader discussion with other pulmonologists or with the palliative care team. This part of the mediation called for the mediator to be prepared to change hypotheses. Mr. Samuels’s case illustrates the mediator’s responsibility to be the advocate for the plan. Resolution and follow-up may be as difficult in the medical setting as are the initial fact gathering and development of options. Implementing a plan, espe-cially one that facilitates the death of a patient, challenges the instinct and training of many medical professionals.

5. Providing ongoing education about the principles and practices involved in the case. In addition to engaging in lengthy discussions with the staff, the me-diator left long notes in the chart that provided the rationale for such concepts as “ decision-specific capacity” and the right of the patient to choose death not as a form of suicide but as a reflection of capacity. These notes were especially helpful to staff members who had not been at the team discussions.

6. Advocating for the principled resolution. The mediator assumed the role of advocate for the patient’s plan to discontinue care once it was clear that this was


an informed and voluntary choice that was not the product of clinical depression. Advocacy, however, needed to occur in the frame of the ethical obligations not to abandon Ms. Langer and to help her prepare for the advent of Mr. Samuels’s death. This advocacy for fairness and the regard for the patient’s beloved others is one aspect of bioethics mediation that differentiates it from other types of mediation. The mediator felt, as did the PICU staff, that Ms. Langer’s inability to permit Mr. Samuels his desired outcome was an issue to be addressed in the context of putting together a care plan for Mr. Samuels. Had Mr. Samuels insisted on being extubated immediately, leaving the staff no time to work with Ms. Langer, his rights and the interest of Ms. Langer would have been in conflict and the staff would have had to choose to meet the patient’s needs. But some negotiation with Mr. Samuels averted that direct collision.

7. Summary. In this case the roles of mediator, helping the parties to identify op-tions for solution and choose among them, and consultant, identifying the right of the patient to choose death and working clearly toward that goal, were intertwined during all stages of the mediation. The mediator pursued the issues with the staff, the consultants, and Ms. Langer, confident that consensus could be reached. As it developed, Ms. Langer was implacable; she could not be persuaded that Mr. Samu-els was truly making a decision to choose death. But as the staff and the patient moved toward consensus and additional supports were provided for Ms. Langer, a plan emerged that all could support.

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8

Mediation with a Dysfunctional Family: Mrs. Bates’s Case

Background

Mrs. Bates was a seventy-five-year-old patient who was transferred to the medical center from a community hospital with the diagnosis of stenosis (narrowing of the cardiac valve). Her admission had followed a series of four visits to the emergency room of the hospital near her home, where she had gone to seek help for difficulty in breathing. She arrived at the medical center with a guarded cardiac prognosis and the label “schizophrenia,” though this characterization did not come up in the mediation and seemed irrelevant to the issues under discussion. The patient was alert and able to make the decision to transfer from the com-munity hospital and, after admission, the subsequent decisions to undergo surgery. She had appointed a daughter, one of her five children, as her health care agent, or proxy. She had also executed a living will that stated that it would take effect if there were a “terminal condition.” At the medical center she underwent two surger-ies. She did well following the first, to replace the aortic valve, and was considered for discharge but developed a deep infection leading to heart block and needed a second surgery to implant a pacemaker. The atrial lead then became dislodged and the patient became hypotensive and was returned to surgery for repair of the mitral valve. She also developed an infection on her tricuspid valve, for which she was treated with antibiotics; she entered renal failure, for which she was started on peritoneal dialysis. The medical team was not certain that the infection could be controlled with antibiotic use but had agreed that further surgery was not an option. Soon after the start of the dialysis treatments, the patient experienced a cardiac arrest and was placed on a ventilator. The patient’s daughter, acting as her mother’s health care agent, requested a do-not-resuscitate (DNR) order; the cardiac surgeon was opposed to writing the order. To resolve the impasse, the clinical care coordinator (CCC), a nurse in the Cardiac Intensive Care Unit, requested a bio-ethics consultation. At the time of the initial consult, Mrs. Bates was intermittently “somewhat


alert.” She had been refractory to weaning from the ventilator and had been la-beled “vent dependent.” The bioethics mediator was not able to meet first with the medical team alone. Present at the initial meeting were the patient’s daugh-ter, the daughter’s husband, the cardiac surgeon, the cardiac surgical fellow, the bioethics mediator, and an experienced mediator on sabbatical with the consult service. The bioethics mediator started the meeting by introducing herself and the pro-cess. She explained who she was, that she worked for the hospital as chairperson of the Ethics Committee and director of the Division of Bioethics, and that her role in this case was to see whether any agreement could be reached on the plan of care. She then asked for a review of the medical facts. The cardiac surgeon stated at the outset that the meeting could be short, for he had determined that the patient was not “terminal” and in fact was getting better. The CCC, however, did not share this judgment. After the facts had been presented, the mediator asked the daughter to state what she had learned in discussions with her mother and why she felt that her mother would want a DNR order at this time. The daughter, clearly under stress, began quite strongly. In discussions, she re-ported, her mother had been very clear that if she had a diminished quality of life from her cardiac disease and from chronic obstructive pulmonary disease, which continued to worsen in response to her continued smoking, she would not want to have life-sustaining care continued. She had been clear, too, the daughter stated, that she did not want to “die twice”; if she arrested, she did not want to be resus-citated. As a devout Evangelical Christian, Mrs. Bates felt that if she experienced a cardiac arrest, it was her time to die and she did not want to act against what she saw as a divine verdict. The daughter pointed out that these wishes, though voiced in the context of a “terminal condition,” were, in general, what her mother wanted to guide her care. She had had many discussions with her mother on this issue and the message had been consistent. As soon as the daughter finished speaking, her husband and the surgeon at-tacked her. Her husband stated, and the surgeon agreed, that a DNR order would lessen the amount and the quality of care that the patient would receive and might compromise her chances of recovery. The husband explained that he was speaking from experience. His father had been in the hospital recently and the family had fought to get him the most aggressive care. The husband intimated that his wife, the patient’s daughter, was morally inadequate and not sufficiently loving and pro-tective of her mother if she did not do the same. He equated a DNR order with a do-not-treat order and suggested that by signing such an order she was abandoning her mother. The daughter stood fast in her position for a while and then folded under the assault of the two men. The dynamic of the conversation in the mediation meeting was extremely un-balanced and the atmosphere was tense. The mediator backed off, reluctant to intervene in the complex relationships of dependence and abuse that seemed to characterize the daughter-husband and daughter-surgeon relationships. But once

Mediation with a Dysfunctional Family 143

the daughter withdrew her support for a DNR order, the mediator reentered the discussion, emphasizing that decisions about ethical issues are grounded in the medical status of the moment and can and should be revisited as the status of the patient evolves. The chart note, filed on the consultation report form, stated that the daughter had agreed “for the moment not to insist on the DNR but that, should her mom take a turn for the worse, she would want this decision reconsidered [and] . . . if the patient continues to improve, the plan is ethically supportable. If the patient deteriorates, her wishes and those of her proxy should be respected and a DNR written, [for] . . . time is the ally of an ethical plan.” A week after the meeting, the CCC called the mediator to report that the pa-tient was yet weaker and less responsive. The mediator asked her to call the daugh-ter, report this finding, and confirm that she was still comfortable with a care plan that did not include a DNR order. The CCC made this call, and shortly thereafter, the daughter called the surgeon to report that she was being harassed by the CCC. The surgeon then called the CCC, who called the mediator. The mediator sent an e-mail message to the surgeon to clarify that the call to the daughter had been at the request of the mediator pursuant to the notion that the conclusion of the prior mediation had identified a time-limited solution that should be reevaluated as the status of the patient changed. Three days later the surgeon called the mediator to state that the patient had taken a turn for the worse and he was, in consultation with the daughter, writing a DNR order.

Analysis

After this case, the following issues were identified by the visiting mediator, Pro-fessor Barbara Swartz, who sat in on the mediation (with full agreement of all parties).

1. The physician’s judgment of the medical status of the patient. The physi-cian’s judgment would seem to be the natural grounding for any discussion about the ethical plan of care. Yet in this case one could argue that the physician’s judg-ment was not necessarily a reliable basis for patient evaluation and decision mak-ing. Surgeons are particularly committed to supporting their patients through the hard times that follow the complicated course of recovery from multiple surger-ies. They hate to lose. Moreover, any death within thirty days of surgery must be reported to the medical examiner’s office. Such reports almost never result in any action, but the process is distasteful to most surgeons. The CCC seemed more ob-jective, yet when conflicts of interest exist, and fixed prospective payment and lim-ited reimbursement conflict with a plan of care with little prospect of success, the CCC’s responsibility for length-of-stay and discharge planning must be factored into interpretations of medical advice. The CCC in this case might have seen Mrs.


Bates as a vent-dependent patient who would greatly exceed her length of stay and thereby lose money for the hospital and tarnish the CCC’s record.

2. The daughter’s statements about her mother’s conversations and wishes. The daughter was very specific about her mother’s wishes and quoted conversations in detail and with the sort of language that rings true to discussions with medically unsophisticated patients and families. The mediator had never heard of the concept of not wanting to “die twice” and therefore accorded it great weight.

3. The living will. Many advance-directive documents are filled out carelessly at the instigation of some institutional official. Many do not reflect the real wishes of the patient. Yet they may be the best evidence available of the personal values of the patient. A written document that deals with transplantation and autopsy, as this one did, and where the other choices are consistent, has a great deal of force. In general, written documents need to be interpreted in the light of the patient’s condition and the other aspects of the patient’s personality that emerge in discus-sion with the family. This document supported and reinforced the statements of the daughter. Furthermore, the question of whether a patient is “terminal” is the trigger question for most living wills, and, as this case demonstrates, is a category that requires a level of interpretation that generally renders it counterproductive in discussion.

4. Family dynamics. Responding to the bullying and intimidating nature of the husband was an issue in this mediation. His attitude was threatening, his words harsh, and his behavior overbearing and hostile. The way the couple communi-cated was clearly not limited to this circumstance. It was not inconceivable that this was a physically abusive relationship, and if it was, the mediator had to take care not to provoke the man further against his wife. Dysfunctional modes of communication established in nonstressful times are likely to be even more pro-nounced under stress. In this case the bullying husband was supported by the physician. In standard family mediation, when one of the parties begins bullying the other, most mediators recognize their obligation to explore whether mediation is the best means of resolving the conflict. Although to be transparent about the problem in a joint session may risk reinforcing the power differential, in a private caucus with the less powerful party, the mediator could be open about the possibility that if the power differential cannot be overcome, mediation might be impossible. In the case of Mrs. Bates, however, this strategy was not an option. First, the mediation could not be postponed, since a decision was required to establish the patient’s care plan. Second, the power relationships were an established feature of the parties’ modes of interacting. The dynamics of the family, or at least those of the patient’s daughter and her husband, were bound to defeat the daughter-proxy in her goal of following her mother’s wishes as she understood them. Intervention by the mediator risked mak-

Mediation with a Dysfunctional Family 145

ing matters worse, interrupting the basis of the doctor-proxy relationship that ex-isted, and exacerbating the tension between the husband and the wife. Also, it was the perception of the mediator, based on a review of the chart and the statements of the members of the care team, that this was a dying patient. The patient’s course could have changed rapidly, but it was more, rather than less, likely that the patient was on a path to death. If the wishes of the daughter, reflecting the values of her mother, were supported and the patient died, the daughter would be blamed by her husband, and perhaps by the rest of her family, as causing the death. The me-diator was loath to place this burden on the daughter. Work on the doctor-proxy relationship has demonstrated that the proxy must not only factor in the interests and wishes of the patient but also protect his or her place in the constellation of the family. The proxy has his or her own interests to shield, and the mediator must not undercut this impulse (Dubler 1999). As Tia Powell (1999) so eloquently demonstrates, the fact that one person has been appointed as the legal proxy does not dispense with the complexity of family choice. The dynamics of the family are such that if the patient is not suffering, his or her wishes must sometimes be subordinated, at least temporarily, to the emo-tional needs of the family members, for they must live with the solution and the consequences after the patient dies.

5. Patient’s pain and suffering. This patient was not experiencing pain. She was sufficiently debilitated and sufficiently sedated that she was not fighting the ven-tilator and seemed not to be agitated. Because pain is an ethical issue, not just a medical one, if the patient had been in pain, the equities of the situation would have been different. But she was, to the best of the caregivers’ ability to judge, not in pain, and the daughter had to decide what was good for her mother in the con-text of her own life, at that moment and in the future. Family members, like the daughter in this case, often decide in ways that will permit them to face the future without the patient and with the surviving relatives. If the patient were suffering, then the role of the mediator would be bounded much more narrowly by the medical interests of the patient. Although bioethics mediation is patient centered and must take account of patient suffering, it is also family centered and must help the family members live with each other after the death, recovery, revival, or disability of the patient. As with any mediation, the agenda for the mediator is determined by the im-mediacy of the situation and by the characteristics of the drama. The mediator needs to approach the meetings with family and staff with a notion of the issues (a working hypothesis) and some rough order of priority of the issues to be discussed, all subject to emendation as the narrative unfolds. In an end-of-life mediation, the interests of the patient in a realistic care plan that balances the burdens and bene-fits of the treatment and in a death without unnecessary pain and suffering are paramount. These issues, again, are no different from the sort of issue, such as property, custody, and visiting schedules, a mediator might face in any situation of family


conflict. In every case, mediation must be grounded by rules, principles, public policy, and the reality of the family dynamics. One final role of the mediator, as illustrated in this case, is to help the family bear the burden of difficult decisions. There is a huge difference, for example, between asking a family member whether he or she wants to sign a DNR order for the patient and suggesting that such an order is the appropriate care plan. In the former scenario, many family members feel that they have signed a death warrant. In the latter, if the family accepts the plan, the physician can carry the onus of the decision. For family members there is a fine line, to which mediators must be sensitive, between bearing the burden of the decision and disempowering the family.

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9

A Complex Mediation with a Large and Involved Family: Mrs. Leonari’s Case

Background

The first sign that a conflict was brewing was a flurry of e-mail messages. One from an administrator high up in the organization went to a hospital vice president. The note stated that the family of a patient was unhappy with the care the patient was receiving in the Surgical Intensive Care Unit (SICU). A second e-mail message between the same parties indicated that the two surgeons in charge of the unit were in dispute about the care the patient should receive. A third message, a response from the vice president with the previous e-mail correspondence attached, sug-gested that the Bioethics Consultation Service be called in to the case. On that same day, the nursing supervisor in the SICU called the bioethics me-diators for the hospital, requesting a bioethics consultation. The reason provided for the request, a bioethics issue, was that the family was interfering with the ap-propriate care for the patient and the interests of the patient were imperiled. The two bioethics mediators who picked up the case, Andy Purdure and Vir-ginia Lieland, agreed that a principled frame for the problem would probably be that the patient’s well-being was in jeopardy and that the obligation of the staff to pursue the best interest of the patient, a principle called beneficence, was threat-ened. As a matter of course, the ethical obligation of the staff to care for the present needs of the patient defines appropriate care. Family interference with the standard of care is always troubling. A second bioethics issue inherent in the initial narrative was the allocation of scarce resources. A bed in the SICU is a scarce resource that must be allocated fairly and is generally assigned according to the principle of triage—a bed to that person who can benefit the most, who is neither too sick to benefit nor too healthy to jus-tify this level of care. The staff in an intensive care unit is also a scarce resource. A patient’s family that is too demanding and takes up a disproportionate amount of time and energy deprives other patients of the care that they require.


This bioethics mediation team usually begins the mediation process by speaking with the referring person, reviewing the chart, and convening all the care providers. In general, this initial meeting comprises four to six staff members who brief one or more of the mediation team on the case, describe the medical condition of the patient (history, diagnosis, prognosis), relate the interactions with the family, and express whatever emotions are clouding the creation of a successful and shared plan of care for the patient. This case was unusual from the start: eighteen staff members gathered in one of the empty rooms of the SICU. Participants included the two surgeons in charge of the unit, the supervising nurse and six nurses from the unit, two physician assistants, the two surgical fellows, one social worker, and four house staff and medical students. The emotional maelstrom was immediately apparent, indeed overwhelming. The first step in any classical mediation, setting the stage or arranging the par-tici pants around a table, is rarely possible in bioethics mediations and was not pos-sible in this case. Staff rolled chairs over from the nurses’ station, the bank of moni-toring machines, the other patient rooms, and the adjoining medical service; three or four sat on the empty bed; others leaned against the windowsill. One of the surgeons sat, but the other one, concerned about the care of another patient who was in crisis, stood in the doorway to have a clear view of a particular monitor. Mr. Purdure and Ms. Lieland began by using their standard protocol: introduc-ing themselves as bioethics consultants and mediators and asking the person who called the consult to explain why in this case she had thought there was an ethical problem. The supervising nurse explained that the nursing staff was so distraught over the behavior of this family and so fearful of them because of their complaints to supervisors and administrators that they were reluctant to care for the patient; the staff continued to provide excellent care, she hastened to assure everyone, but she was concerned that this family’s behavior was on the verge of compromising the patient’s care. Drs. Kibbe and Lordson, jointly in charge of the case, then explained that in-deed there was no difference between them in their evaluation of this case and in their plan for managing the patient. The rumor of conflict between the surgeons had originated, they explained, not in disagreements about the care of the patient but rather in miscommunication about the management of the family. The facts, Dr. Kibbe explained, were as follows. On the Monday morning preceding this first bioethics meeting, the supervising nurse had arrived to find that Dr. Kibbe had written a note: “The family is only allowed to visit the patient between the hours of noon and 8:00 p.m. and only for ten minutes each hour.” On her arrival at 8:00 a.m., she was accosted by the family and, because she had been absent for the week-end, she checked with Dr. Lordson, who stated: “I am in the middle of rounds. Do what you please with the family and we will discuss it later.” Under pressure from the family, the nurse permitted them into the patient’s room at 8:30. The confrontation had its roots in the family’s use of cell phones in the patient’s room. They had been warned time and again that cell phones might interfere with the patient monitors. After one of the daughters was caught three times talking on a cell phone in the patient’s room, Dr. Kibbe set the limit: the family would be able

A Complex Mediation with a Large and Involved Family 149

to visit the patient for only ten minutes an hour between noon and 8:00 p.m. They were to be barred from visiting at any other time. The family, and not the patient, was clearly the focus of the conflict. Mr. Purdure asked the surgical fellow in the unit to provide a brief medical his-tory of the case. At the time of the meeting, the patient, Mrs. Leonari, had been in the SICU for more than three months. She had been stricken with pancreatitis—rather like being hit by lightning—had quickly progressed to multisystem organ failure, had been brought to surgery twice, and appeared now to have a colonic fistula that would likely involve additional surgery. At the moment, the patient was dependent on ventilatory support and probably not experiencing any pain. The surgical fellow noted that the patient appeared not to recognize or respond to family and staff, although some of the family members felt otherwise and asserted their opinions clearly when challenged. The surgical fellow’s report was a straightforward recitation of the devastation that pancreatitis creates. At the moment the patient was improving slightly, but 98 percent of the way to real stability was yet to be traversed. And, were the patient to become stable, she would face many more months in a rehabilitation facility before she might be able to negotiate a return home. The best scenario was more months in the SICU, perhaps more surgery, and if all went without further complication, an extended stay in rehabilitation—a guarded and grim prognosis. Ms. Lieland then asked about the family and the following facts emerged. This was a Sicilian American family with five grown children, three daughters and two sons, who had immigrated to the United States in the 1960s. They had all prospered, some had attended college, others had entered businesses, and all had established flourishing careers. Three of them were involved in politics at the local, state, and national levels and paraded their political contacts whenever challenged by staff. All the patient’s children had numerous, mainly small, children of their own at home. Most of the nurses and the medical staff saw this family as a devoted group who loved their mother with passion and who were disoriented by her sudden dis-appearance from their lives. This was a woman who made her own pasta sauce and pasta every weekend and had at least twenty of the family for dinner every Sunday. She offered food, advice, support, love, comfort, and structure to a family who had come together to this new land and succeeded beyond their dreams. This was not just the mother; this was the leader of the tribe. Now the family was engaged in what they perceived to be the fierce pursuit of their mother’s interests. They had explained to the supervising nurse that their mother had always done everything for the family and that now, when she needed them, they intended to be there for her. Their interpretation of this commitment was translated into staying with the patient day and night throughout the week. Indeed, two of the daughters had gone on reduced work schedules at their jobs and were running back and forth between houses, offices, and hospital. The chil-dren were convinced that their mother knew that they were there and that she experienced their abandonment when they were absent. They were all devout Ro-man Catholics who believed that saying prayers with their mother was one of the important elements in her recovery. The family began early in the morning saying


prayers, stroking the patient’s forehead and hands, bathing her gently with a damp cloth, smoothing her bedcovers, and straightening her hospital gown. The family was extremely solicitous for the staff and regularly brought them pastries, fruit, and multiple cups of coffee. They tried to be generous with all but always singled out some for particular praise. Some of the staff commented that this was a remarkable family, mutually supportive, loving, caring, and well orga-nized. They were described as “doing the best they know how given the terrible condition of the patient.” Dr. Kibbe suggested that these adult and very competent children of the patient were all infantilized by their status as children, albeit grown and largely in their thirties and forties, without the emotional and moral center that their mother provided. The patient’s husband was devastated by her illness and appeared to grant leadership in staff relationships to the oldest of the children, Mrs. Cotrelli and Mrs. Dominick. But this was only half the story. Other staff experienced the family as aggres-sive, intrusive, meddling, and threatening. Indeed, on one occasion when a tube had been temporarily closed by one of the bed wheels, a daughter threatened to murder the nurse if she were not more careful. The incident that had preceded the latest crisis had been the complaint by Mrs. Cotrelli, one of the patient’s daugh-ters, about the behavior of a nurse named Patti. Mrs. Cotrelli had reported to the supervisor that the nurse was rough and uncaring; Patti, when confronted with the family’s displeasure, had reacted with outrage. She stated that she had cared for the patient with unfailing skill and was furious that the family had complained about the care. As soon as one of the physicians or nurses entered the room, the family bom-barded him or her with questions. If there was any discrepancy in the answers pro-vided, they pounced on another physician, physician assistant, or nurse to resolve what they saw as a conflict. When criticized for asking too many questions, they began to keep a notebook with responses that the family members who visited sub-sequently might read for the up-to-the-minute data on the status of their mother. Some of the staff understood this tactic as an accommodation to the needs of the staff, and others saw it as preparing a record for a later attack. All the staff resented the family’s flouting of unit rules, such as no use of cell phones in the rooms of the patients, especially since they had been told repeatedly that the use of cell phones could interfere with the monitoring equipment. To the staff, the family’s continued use of cell phones was sneaky and in disregard for the welfare of the patients, and they were unmoved by the explanation that the daugh-ters had to use cell phones to keep in touch with small children at home—they should have left the unit for that. Tempers were short, understanding was limited, and emotions were aroused. The visiting hours rule had been articulated on a Sunday, implemented the fol-lowing Monday, affirmed on Tuesday, and intermittently disregarded by the family since then. The bioethics mediators entered the case on the Thursday following the promulgation of the rule. At the conclusion of the meeting with the staff, the mediators stated that they


would proceed to meet with the family members and would report back to the staff if compromise seemed possible. The SICU is one of the critical care units in the hospital. Its staff is specially trained to make decisions about patient care in consultation with, but not under the authority of, the operating surgeon. This rule is variable, however, depending on the power and prestige of the patient’s primary surgeon. In the vast majority of cases, including this one, the SICU team plans for and directs patient care. In addi-tion, Dr. Kibbe was also the one who had performed the most recent operation on the patient. The rules in the SICU state that visiting hours are twenty-four hours a day. The nurses had lobbied hard for this change from the previous policy, which had stipu-lated fixed visiting hours from 11:00 a.m. to 1:00 p.m. and from 6:00 p.m. to 8:00 p.m., because these set hours had excluded many family members and friends who had inflexible work schedules. In an effort to accommodate family needs, the rules had been changed. But until this case, no one had ever interpreted the rule literally to mean that the family could be there twenty-four hours a day, seven days a week. The two mediators entered the patient’s room and introduced themselves to Mrs. Cotrelli and Mrs. Dominick. They explained the Bioethics Consultation Ser-vice and their roles in identifying bioethics issues and helping resolve bioethics con-flicts. They also explained their roles in mediating disputes in the hospital, pointing out that they were employed by the hospital and therefore were not independent mediators. During this time the daughters were sitting by their mother’s bed, stroking her arms and saying prayers. They came to the side of the room to talk, and they and the mediators pulled chairs into a circle. The mediators explained that they had just completed talking with the staff as a way of trying to understand the history of the present situation. They stated that the staff were very concerned that the family’s constant presence in the unit was a disrupting factor in the care of the patient. They also explained that some staff felt threatened by what they perceived as the family’s belligerent behavior and were very upset that the family would continue to use cell phones when clearly asked numerous times to refrain. They wanted to understand, from the perspective of the family, what had occurred. The older daughter, Mrs. Cotrelli, began: “Our mom devoted her life to us and now she needs us and we expect to be here for her every moment of the day. She deserves no less. . . . We never interfere with care and we always leave when the nurses ask. . . . They are jealous that we love her so much and no one loves them like this.” The two daughters stated that they were very pleased with the care and denied any problems with the staff, with the exception of one nurse who they felt was not properly responsive to their mother and did not bathe and care for her appropriately. Ms. Lieland stated that the staff agreed unanimously that the family was inter-fering with the care of their mother. The daughters expressed shock and dismay and asked for help in ameliorating the situation. Mr. Purdure suggested that they meet soon with some other members of the


family, especially Mr. Leonari—the patient’s husband—and try to forge some agreement that would help the family and the staff, locked in this forced together-ness, to get along. He especially requested that Mrs. Cotrelli invite her husband, who was a physician at this hospital, to join the discussion. The sisters agreed and asked that a meeting be set for that afternoon at five o’clock. Mr. Purdure knew, but the family did not, that this physician, son-in-law of the patient, had told the surgeon that he thought some boundary setting would help the family. “Too much freedom is hard for them to handle,” he had said. At five, Ms. Lieland and Mr. Purdure returned to the patient’s room and found the two sisters and the husband of one of them, Mr. Dominick, a lawyer; neither the patient’s husband nor Dr. Cotrelli was present. Mr. Dominick introduced him-self and stated that he had been appointed the spokesperson for the family and he would negotiate for them all. After much shouting by all three family members about the unfairness of the rules and of the surgeon who had promulgated them, the three agreed to abide by the rules for the weekend if the beginning hour could be changed from noon to 10:00 a.m. and if there were no restrictions on visiting hours for the patient’s husband. The daughters stated that they were especially con-cerned about their father, who had taken this illness of his wife as a mortal threat to his being. They emphasized that because of the restrictions on the children’s visiting, their father had been staying longer, and they feared for his health. None-theless, they wanted him to be allowed to be there whenever he felt that he could. The daughters were reluctant to agree to anything, but Mr. Dominick urged them to agree as a strategic move to calm the waters. When Mr. Dominick asked who employed the mediators, they explained that they were paid by the hospital and that part of their task was to try to find some consensus about care plans and behavior when there were conflicts between and among staff, family, and patient. They explained that they were on the hospital payroll and therefore could not be considered neutral and independent mediators, but that they did try nonetheless to listen to all parties and assist in the process of mediation. Sometimes they were able to help, they explained, and sometimes not. They offered to look for common ground. An hour into the discussion, the father joined the group. He seemed quite frail and was tearful. He stood by the bedside for a short moment and then arranged himself silently at the farthest corner of the room from the patient’s bed. Finally an agreement was forged and the mediators wrote it up as a chart note. After discussing the substance of the note with the family, they showed it to the nurses, who agreed generally that it was an improvement but were reluctant to commit to the unlimited hours for the husband. One nurse swayed the discussion by noting that the husband never stayed for long and was the easiest to handle. All agreed that Dr. Kibbe needed to approve the compromise before it became official. The chart note stated:

Consult requested by nurse supervisor to consult on the care of this patient, given a breakdown in communication with the family. Mr. Purdure and Ms. Lieland met with the staff on Thursday at 11 a.m.


and with two daughters, and a son-in-law, Mr. Dominick, at 5 p.m. At six o’clock the patient’s husband joined the discussion. Our goal is to forge a temporary consensus to quiet the strong feelings on both sides. The policy now in effect restricts visits to the hours between 10 a.m. and 8 p.m., and limits them to ten minutes per hour. We suggest the following as a reasonable temporary compromise:

1. Rule limiting visits to ten minutes/hour between noon and 8 p.m. remains in effect for Friday through Monday and applies to all visitors except the patient’s husband.

2. Patient’s husband may visit at will as long as all visitors, including the patient’s husband, comply with the following conditions:

Use the intercom for clearance before each visit before entering. Do not interfere with any nursing care and leave when asked.

On Tuesday morning at eleven, the staff and family with these consultants will review the policy and the family’s compliance and will consider rules for the future. Acceptance of this plan must await approval by Dr. Kibbe or Dr. Lordson.

A copy of the note was given to the family members to share with others who were not present. That night Ms. Lieland sent the following e-mail message to Dr. Kibbe, who had originally ordered the restrictions. She felt that the staff’s perspec-tive had been presented to the family but that there had not been an equal oppor-tunity to argue the family’s feelings and position to the surgeon.

TO: Dr. KibbeFROM: Virginia LielandRE: Thoughts over the night; 5:30 a.m.Needless to say you have seen the note that Andy Purdure and I left in the chart. I realized that I should have left a private note for you—thus this message. We spent time with Mrs. Cotrelli, Mrs. Dominick and her husband, and the patient’s husband. I was impressed by all of the themes that had been raised yesterday morning. They are desperate at the loss of this person who has been the center of the family. Mrs. Cotrelli, especially, feels this woman is her line to life and to meaning. But, there is more. This is a very religious family, religious in a way that would strike you, and is to me, quite literal. They honestly do believe that prayer will be effective and is part of her healing process. Literally, not in any metaphorical sense. They experience these rules and restrictions as you, the staff, forcing them to neglect their mom. That is truly hard for them. I have encountered these sorts of families before; this family is a paradigm of the matriarchal, religious, mystical family. I realize that they are more than difficult. They are so intense as to be overwhelming, . . . no question. But they


are the “real stuff.” . . . They do believe that their prayers and ministrations are part of the cure, part of the solution. The plan that we forged is not perfect—indeed it may not work at all—but it was a plan that we felt would let them demonstrate good faith and let you give a bit—on the issue of weekend visiting and on the matter of the father’s visits. It has all of the marks of mediation in that neither side is really happy. The nurses were not happy at least and the family is not. But, they want so much to try to remedy the mess, as do the nursing staff, with the ex-ception of one nurse who is so mad that nothing short of tar and feathers will satisfy her. . . . I am trying to sell this plan and give it a chance. Would I be able to do this if I were you? I am not sure. But I do know that you guys are in it together for the long haul and this might, just might, start things again. Of course not start from a clean slate, . . . that is not possible. . . . But perhaps this agree-ment will cool things down. Interesting to note that Mr. Dominick was key to accepting this plan. He said “do it” and get this rolling again. The deal breaker or clincher, however, was a different rule for the husband. That became the symbolic center for their not losing face. One of the nurses said that he never stays very long in any event—of course in the perverse universe of mediation this will change immediately. So, those are my 5 a.m. thoughts. I sure hope that this cooling off period works—as I said I don’t have great hopes but I still do harbor a few.

Dr. Kibbe arrived the next morning and agreed to the terms. By Tuesday morn-ing tempers had soared on both sides of the white-coat rack. A meeting with the staff revealed that the family had not abided by the rules, had not called each time before entering the unit, and had not limited their visits to ten minutes. The family was equally adamant that the experiment had been a failure. Mrs. Cotrelli, Mr. and Mrs. Dominick, the two mediators, and an outside ex-pert met in an empty room. Mrs. Cotrelli stated that she was sorry that she had agreed; it was ridiculous that they were not permitted to visit for as long as desired, and because they were not there to say prayers, her mother had deteriorated over the weekend. Mr. Dominick stated that they would agree to no limitation of their visits and that if there were interference with their access they would soon see the hospital in court. They stated flatly that they would agree to no rules and there would be no compromise. Because of the explosive nature of the case and the complex dynamics, Mr. Pur-dure and Ms. Lieland had invited an experienced mediator and teacher of media-tion practice to accompany them to the meeting. He was introduced at the outset and his role explained. The participants were asked whether they had any objection to his presence and they stated no, they did not care who was or was not there. The expert was asked to comment but offered no suggestions for a resolution. Ms. Lieland closed the discussion and stated that she and Mr. Purdure would document the breakdown of the negotiations in the chart. The visiting mediator


stated privately that in order to forge a consensus and reach an agreement, each side needs the same desire to reach a common point. Without that shared com-mitment to search for consensus, the process will certainly fail; this discussion, he stated, was an example of that principle. The mediators wrote the following note in the chart:

We consulted on this patient last week. Because of problems with the family (interfering with the care of the patient and intimidating the staff) we were asked to become involved. We met with family and staff and all agreed to the plan. See note of last Thursday. Today we met again, according to the agreement, with staff and family. Family said at the outset that they would accept no restrictions but for a limit from 12 a.m. to 6:30 a.m. Staff at first wanted to extend 10 minutes/hour to 20 minutes/hour. Finally, we got staff to agree to unrestricted visiting from 11 a.m. to 8 p.m. with 2 limits.

1. Family members must intercom before entering.2. Family members must leave when any nurse arrives to care for the patient.

Family has rejected this and is very intimidating and threatening. We have alerted the hospital medical director who first referred the case, the risk-manager, the director of patient services, and the director of security. This attempt at mediation has failed. The family does not understand why the staff perceives them as disruptive. They absolutely reject limitations and see their presence as necessary to their mother’s spiritual and emotional well-being. They are a devoted and loving family that can’t understand how disruptive their behavior is.

This is a very sad case: devoted family and very caring staff who have tried to work it out. The family is now adamant and will not accept any limitation of visiting. Common ground requires both sides to want to reach an agreement. The family sees that the policy the staff wants is not what they want—a sorry state—but no compromise possible. One last point. The family feels that these restricted hours are making their father’s health worse—he feels the pressure to be there more. We have reported to Dr. Kibbe on the lack of an agreement and have alerted administrators.

Two days later Dr. Kibbe saw the husband in the patient’s room. Despite the fact that the family had stated that Mr. Leonari should not be involved in decisions about his wife’s care and only Mr. Dominick should decide about arrangements, Dr. Kibbe had continued to speak with the husband about the patient’s status, new developments, and the changing prognosis. He asked Mr. Leonari before each meeting whether he wanted to be involved in discussions and he consistently said yes.


On day two after the breakdown of the negotiations, Dr. Kibbe presented the agreement to Mr. Leonari and asked him whether he thought it was fair to the family and to the patient. He said yes, it was fair and that he would like the at-mosphere between the family and staff to be better, adding that he would tell his family to abide by the rules. The staff agreed to unlimited visiting from 10:00 a.m. to 8:00 p.m. All others agreed. On visiting the SICU some time later, Ms. Lieland asked a visitor, a daughter she had never met, how the relationships were between family and staff. “Oh,” she stated, “I don’t get involved in any of that.” Two weeks later, Dr. Lordson reported that tension was beginning to mount again and asked that one of the mediators pay a visit. On arrival a day later, Ms. Lieland found that all was calm. The patient had experienced a dramatic improve-ment, and Mrs. Cotrelli and Mrs. Dominick were tremendously pleased. Dr. Kibbe had discovered a hidden source of infection that, when drained, led to an im-mediate improvement in mental status, responsiveness, and kidney function. The pushing for extended hours had ended abruptly and all agreed to ask, one day in advance, for variation of the usual procedure. Despite the efforts of an accomplished staff and a devoted family, the patient died.

Analysis

Medicine interacts with people’s lives on the planes of suffering, reliance, trust, and fear. Depending on individual wisdom, the strength of family support, one’s sense of afterlife, and the effectiveness and compassion of care providers, the hospital experience can be tolerable or horrible for all involved. When conflict surrounds the process, it can magnify the negative aspects of the experience for all the partici-pants—family, patient, and staff—and intensify the contrasting perspectives and interests. Mrs. Leonari’s case is the story of a mediation that failed. But ultimately the compromise that had almost been forged was the plan that was implemented—so maybe it is actually the story of a mediation effort that succeeded. That effort be-gan when the mediators started the process of communication that let the staff and the family work together or at least bump more productively against each other. It continued when they shuttled back and forth between the family and the staff, arguing alternately for the position of one or the other of the parties and suggesting the various compromises that became the basis for the new understandings and, finally, for the solution. All along the way, the mediators absorbed the anger of the family when the first attempt at forging a new plan had failed. Perhaps that is one of the chief lessons from this case and one of the salient characteristics of the hos-pital mediative process: the process, its intermediate steps, and its interim solutions are key components of the product.


1. Letting the Staff Express Their Feelings. The mediators began by providing a safe space, in front of an audience who were neutral to the extent that they were unknown to the family and unfamiliar with the conflict, where the staff could come together and express their anger and frustration at the behavior of the family. An interesting point is that some of the staff at this first meeting defended the family and tried to calm the waters and soothe the most agitated staff, especially the nurse who had recently been reported to her supervisor. Many of the staff sub-scribed to the explanation of one of the surgeons that this was a loving, close, and interlocked family who had never tried to function outside the supervision and support of the matriarch. Midway into the discussion, one of the mediators raised what is a standard bioethics analysis in the context of intensive care units. She suggested that the staff of an intensive care unit is itself a scarce resource and that the behavior of a family that seeks too much attention and therefore takes more than its proportionate share of the staff’s time is not only a staff organization issue but also an issue of the al-location of scarce resources. One of the nursing supervisors pointed out that this line of reasoning, although salient, would be counterproductive for this family and actually quite explosive. The family’s response was likely to be: “How you take care of your other patients is not for us to say. If our mom needs this much care, it is your responsibility to provide it.”

2. Helping the Family Understand the Situation. Once discussions with the family had begun and the family was apprised of the anger of the staff, they under-stood that a united staff, not just one or two disaffected persons, was appealing to them to change. The reality that emerged from the collective discussion of the care team could no longer be denied. The first family members the mediator spoke with were the patient’s two older daughters, who were the most in evidence at the SICU and who had, despite the frequent admonitions of the staff, continued to use their cell phones while in the patient’s room. The mediators’ task then was twofold: they must try to understand the perceptions and feelings of the family and try to convey to them the feelings and perceptions of the staff. This second part was particularly difficult because the two daughters emphasized again and again that their quarrel was with only one nurse. The mediators tempered their comments about the staff as a united front by repeating the compliments and praise that the staff had offered in support of this family and in recognition of their devotion to their mother.

3. Identifying the Conflict as a Conflict. The most important product of this first discussion with the daughters was their agreement that there was a problem and their assertion that they would like help in solving it. With difficulty, they accepted the notion that the staff shared a common perception. They did not want a frac-tured relationship with the staff because they realized that this tension could not be helpful to their mother’s care. Most mediators are contacted once the parties have reached an impasse and have recognized their need for help. In this case, as in all hospital settings, under-


scoring the existence of a conflict is an initial task for the mediators. The fact that the family wants “everything done,” for example, and the staff thinks that aggres-sive care is not in the best interest of the patient—a common conflict—is identified as a disagreement to be solved only when the mediators enter the picture. Hospital staff and most family members are frightened by the notion of conflict and shy away from its identification. This first step, identifying conflict, is critical in that it permits both sides to see that a common plan is a necessary precondition to caring comfortably and adequately for the patient. The mediators must help both sides see that the best interest of the patient can be served only by a plan that encompasses the perspectives of the care providers and the family, as well as an objective evalua-tion of the needs of the patient. This case was unusual in that the conflict was not about the care provided but about the behavior of the family. The perception that the family was intimidating the staff and interfering with the best care for the patient was as powerful a conflict, however, as are the more usual disagreements about the care plan.

4. Developing Options. Patients and family members are particularly vulnerable in the hospital setting. They are totally dependent on the staff to care for the pa-tient, interpret the data that indicate the patient’s progress or regression, advocate for the patient in the strange world of tests and consultants, and, most important, prevent death or, in the case of the very ill or terminally ill patient, permit it. The staffs seem to stand in a position of unparalleled power, leaving many families reluctant to express uncertainty, discontent, anger, or frustration; all behaviors are fraught with danger. Family members fear retaliation and worry that patient care will be compromised if the staffs have any negative feelings about their behavior. The mediators are related to but separate from the staff that are actually caring for the patient. Thus, family members perceive the mediators as safer recipients for criticism, worries, and feelings of discontent. The mediators can reassure family members that their anxieties are normal and that any concerns they express, as long as they do not bear directly on the patient’s condition, will remain confidential. They can serve as interpreters between family and staff, setting the framework for discussion and creating a protected space where both sides can comfortably express any emotions that might interfere with care of the patient.

5. Meeting with Family and Staff. Once the mediators understand some of the issues on both sides, they try to move the sides as quickly as possible to a common understanding about the future care plan for the patient. But whereas caucusing in standard mediation might mean asking one of the sides to step out of the room to allow the mediators to have a brief discussion with the other side, caucusing in the hospital setting is a very different and far more complex matter. Just reach-ing all staff can require many hours because of the twenty-four-hour nature of care, changing staff shifts, and the hierarchy of authority among staff. In this case, the mediation effort began at 2:00 p.m.; by 8:00 p.m., the mediators had spoken with most of the staff, once with the two daughters alone, and again with the two daughters and the son-in-law. But since Dr. Kibbe was out of the hospital at the


time the second meeting with the family took place, Ms. Lieland had to resort to the early morning e-mail message. The mediators had presented the staff’s concern to the family but had not had time to reflect the family’s perspective to the surgeon who, in the hierarchy, made the ultimate decision. A second important characteristic of the caucuses in bioethics mediation is the mediators’ totally transparent stance. Maintaining this stance is difficult for the mediators, however, because they have not been chosen by the family and they are employed by the hospital. And although the mediators always acknowledge this lack of independence, which Mrs. Leonari’s family noted, it makes them subject to suspicions that are not normally part of the mediation process. But their position also gives them access to the staff, hospital records, hospital discussions, and staff relationships, none of which would be available to an outsider. This is, as noted later, a difficult trade-off made necessary by the setting and the stakes. In Mrs. Leonari’s case, the mediators’ transparent stance is illustrated in the e-mail message to Dr. Kibbe in which Ms. Lieland acknowledges that she is trying to sell the solution that emerged the evening before. But the mediators were equally open with the family, promising to try to explain the position of the family to the staff but acknowledging that they were also trying to sell the family on the need to compromise to make life bearable with the staff. In her e-mail message, Ms. Lieland notes that none of the participants is “really happy” with the proposal. Whether everyone leaves a mediation happy about the outcome is not relevant; it is more appropriate to frame the goal of mediation as finding an agreement that satisfies as many of the parties’ interests as possible and provides a solution all can live with.

6. Being the Advocate for the Forged Solution. Once a compromise is reached, the mediator’s job is to be its advocate to ensure that it is implemented. The essence of a mediated solution is the consensus about the core of the agreement. In this case the core of the agreement was the idea that the family would abide by rules and that the staff would expand the usual visiting hours. The family followed the advice of Mr. Dominick and agreed to the restriction but then regretted the deci-sion. The core of reciprocity held, just barely, over the test time of a long weekend. By the end of that time, both sides were angry and the process was almost back to the start but for the important facts that conflict was acknowledged, each side understood more about the feelings and perspectives of the other, and a temporary solution had been proposed. Thus, the parties could never return to the state they had been in before the process was initiated. Each possessed more information and therefore a more sophisticated level of understanding than had existed before.

7. Recognizing Impasse. Once it was clear that the family was not only un-cooperative but also actively hostile and threatening, it fell to the mediators to call an end to their process. In any mediation both sides must want to reach an agree-ment before the process can succeed. If either side withdraws from good-faith par-ticipation in the mediation—from openness to reaching a shared solution—then the mediation must end and other processes and forums, such as arbitration or


civil court, must be sought to resolve the conflict. In Mrs. Leonari’s case, once the daughters had asserted that they would not compromise, the mediators alerted the administration of the hospital that the family had withdrawn from the process and had threatened to sue. At this point the behaviors and conflicts in the case passed from the hands of the mediators to the hands of the administration, especially the medical director of the hospital and the director of risk management. The former is ultimately responsible for the care of patients and the latter for assessing the risks for possible future hospital and individual liability. Because the family also threatened to ignore all restrictions and be present whenever they chose, not just at the times stipulated by the staff, and because the staff insisted that this behavior would not be permitted, the director of security was also alerted. In one more attempt at transparent mediative behavior, the mediators told the family that they would be required to alert the hospital administrators; once they did, they reported the fact to the family. They also informed the family that the director of security had been briefed on the matter. The family representatives were in a rage and not inclined to listen, certainly not to compromise. Emotions were high, and they had become aggressive, seem-ingly more concerned with winning than with reaching a positive outcome for the mother’s care. What they had not calculated on was the hospital’s closing ranks and, ultimately, the father’s taking a more conciliatory stance.

8. Finding a Solution. Mr. Leonari’s sensitivity to the needs of the staff and his ongoing connection with the surgeon director of the SICU permitted the discus-sion to continue and a plan to be implemented. Despite the two daughters’ statement that all communication should be with them and Mr. Dominick, the surgeon continued to talk with Mr. Leonari. He thought that this was the appropriate thing to do and was not intimidated by the daughters and the son-in-law. His line of discussion with Mr. Leonari was a lifeline for the agreement. Once Mr. Leonari learned from the surgeon about the disagree-ment and the structure of the solution that had been mediated, he accepted the solution and the responsibility to impose it on his family.

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Part V

Role-Plays: Practicing Mediation Skills

The role-plays in Part V are based on a combination of experience and imagina-tion. They are designed to expose the peculiar challenges and configurations of bio-ethics mediation, including the multiplicity of players, the variability of motives, and the complexity of management. Neither this set of role-plays nor any text can teach all the skills that a mediator in bioethics consultations needs—this book is only a beginning. Clinical ethics consultation has a mediative and a consultative aspect. For expertise in clinical ethics, there is no substitute for education about the principles and normative rules that form the intellectual foundation for the prac-tice of bioethics. For expertise in mediation, further training will also be needed. This part of the book may be especially useful for mediators working with bio-ethics students and professionals. It can be a self-help guide for experienced clinical ethics consultants who desire a new lens on practice. It can also provide the basis for workshops and classes. The six role-plays presented here have been used in the Certificate Program in Bioethics and Medical Humanities. The first two, “Discharge Planning for a Dying Patient” (Chapter 10) and “An At-Risk Pregnancy” (Chapter 11), were created by Leonard Marcus, David Matz, Jane Honoroff, and Nancy Dubler in 1993 for the original project on mediating bioethical disputes. They have evolved over the years to the form presented here. The third and fourth, “HIV and Postsurgical Compli-cations in the ICU” (Chapter 12) and “Treating the Dying Adolescent” (Chapter 13), were developed by Linda Farber Post and Jeffrey Blustein of the Division of Bioethics as teaching tools for the Certificate Program. The fifth, “She Didn’t Mean It” (Chapter 14), was written by Tia Powell, MD, and Hannah Lipman, MD, of the Montefiore-Einstein Center for Bioethics, and the final role-play, “Don’t Tell Mama” (Chapter 15), was written by Linda Farber Post.

Using the Role-Plays

Each role-play includes general instructions, a list of participants (in these role-plays, from four to eight), and confidential instructions for each player. The player assigned the mediator role plays himself or herself as a mediator. All other parties to


the mediation have been given fictitious names. The role-plays as educational tools work best if each participant plays a role different from his or her real-life position, with the exception that at least one of the role-play doctors should be an actual nurse or doctor or someone else with medical knowledge. Taking on an unfamiliar role gives the participant insights into the perspective of another position in the health care system. And those who hold the roles in real life can see, as participants take on their roles, some of the assumptions held about those roles. The first four role-plays are in order of increasing difficulty. Allow sixty to ninety minutes for each role-play, including at least thirty minutes of feedback. If possible, give out the role-play assignments ahead of time so the participants can prepare. When this is not possible, add fifteen minutes for preparation to the time allotted for each simulation. Explain to the role players that they should work in real time, that is, they should get as far in the mediation as they can in the allotted time and not rush, even if they do not have time to complete the mediation. All the role-plays use solo mediators, but we encourage trainers to adapt the solo role to co-mediators. Co-mediation increases the chance that all information will be heard and all interests identified; it also increases the likelihood that the parties will find someone across the table with whom they feel comfortable. For training purposes, co-mediation allows more participants to practice in the role of mediator. There are drawbacks to assigning co-mediators, however, to which trainers should be alert; for example, some pairs may be a poor match because one mediator dominates, allowing a more tentative mediator to stay uninvolved.

Giving Feedback

Begin the session by reminding the role players that the purpose of the simulations is to give trainees the opportunity to practice mediation skills. Thus, while getting involved in a role is valued, caution the parties not to get so deeply into a role that they speak at length (leaving little time for the mediators to intervene) or fail to respond to appropriate mediator moves. Tell the mediators that they can call time-out during the simulation and ask for help. Discuss with them whether they would like you to call a time-out if you see them struggling during the simulation. The role-plays are where most of the real learning takes place. Although every trainer has his or her own way of providing feedback, we recommend the following approach:

• Be aware of the time allotted for each role-play and the division of your time with the group between role-play and feedback.

• Take process notes—a rough running transcript with evaluative notes in the margin. These can be as simple as +,–, discuss.

• Plan to spend at least a third of the allocated time giving feedback. If the simulation is going well, you can save feedback until the end, but because of the complexity of the bioethics situations, it is likely that some interven-tion will be required.

Role-Plays: Practicing Mediation Skills 163

• One intervention technique for getting the mediators back on track with-out stopping the session is for you to move behind them, temporarily take on the role of mediator by making a comment or suggestion, let the parties respond, and then return to your seat.

• Some struggling is acceptable, but if the mediators seem to be totally lost, call for a time-out. You might also simply suggest that they wrap up the session and take a break. Then you can help during the recess.

• Begin the final feedback session by asking the mediators how they thought the role-play went. One advantage of this technique is that participants may be more comfortable, and thus less defensive, making negative com-ments about their own performances than hearing negative comments from an observer. Also, allowing the mediators to speak first lets you know immediately how much insight they have into their own performance. If the mediators accurately describe areas of difficulty, it is important to praise them for their insight and equally important to let them know that you agree.

• After getting the mediators’ perceptions about how the session went, you may want to turn to the other participants for their critiques. This is a good chance for them to practice using neutral, nonjudgmental language. Sometimes, especially early in a training, trainees may be overly protective of their peers. An effective technique for dealing with this reluctance to criticize is to ask the participant to pick something he or she would have handled differently and demonstrate or explain it.

• Begin the discussion of the trainees’ critiques by asking questions. To the mediators or other trainees: “How did you feel when——said——?” To the mediators: “When you said/did——, what were you thinking/feeling/trying to achieve?” To the mediators: “What would you like to have said instead?” (After this question, go into role playing with you playing the ap-propriate party so the mediator can practice.) These kinds of question are great teaching devices in general and are especially valuable when you run into a defensive trainee.

• During a feedback session, it is helpful to be descriptive rather than evalua tive: “Carl, it is important for the parties to have time to take in the opening statement. If you slow down it will be easier for them to catch everything.” And it is helpful to be specific. Say: “Jody, after you asked Mr. Jones what he wanted from mediation, you waited a split second and then went right on to say, ‘Is it money, an apology . . . ’ ” rather than: “Jody, you seem to have trouble tolerating silence.”

• It is as important to give positive feedback, with lots of stroking, as it is to point out problem areas. Many people learn better from hearing what went well than from hearing what was wrong.

• Anything that seems troublesome or bogs your group down is probably worth sharing with the whole class.


The next part, Part VI, is made up of annotated transcripts of simulated bio-ethics mediations based respectively on the Part V role-plays “An At-Risk Preg-nancy,” “HIV and Postsurgical Complications in the ICU,” “She Didn’t Mean It,” and “Don’t Tell Mama.” (Note that the medical facts in the “Don’t Tell Mama” transcript differ somewhat from those in the role-play.) These are not model mediations but rather examples of four mediators at work, doing their best to choose interventions that will help the participants find a resolution to the wrenching situations that led to the bioethics mediation. After participating in each role-play, participants may find it helpful to read the appropriate tran-script and discuss how their experience differed from the recorded one.

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10

Discharge Planning for a Dying Patient: A Role-Play

General Instructions

All players should read the general instructions. Before beginning, teachers should review “Using the Role-Plays” in the introduction to Part V.

Parties R. Klein, social worker C. Ware, nurse Dr. J. Hathaway, attending physician Bioethics mediator

Background Harold Hadoni is a seventy-six-year-old patient with colon cancer who is anxious to leave Perpetual Memorial Hospital (PMH). Mr. Hadoni had a bowel resection with a colostomy. The cancer has now metastasized to his liver and his spine, caus-ing some bladder compromise. He requires heavy nursing care, an IV, and strong pain medication. Mr. Hadoni’s condition is terminal and he wants to die at home. The question of whether to release him from the hospital has become a mat-ter of dispute among staff on Five West of PMH. Dr. J. Hathaway, Mr. Hadoni’s physician at PMH, feels that, although Mr. Hadoni might derive some marginal benefit from continued medical care, nothing more can be done for him in the acute care hospital. Moreover, Dr. Hathaway sympathizes with Mr. Hadoni’s wish to die at home and therefore has issued an order for his discharge. But Nurse C. Ware, head nurse on Five West, believes that it is medically irresponsible to dis-charge Mr. Hadoni, given what is known about his medical status and his home circumstances. Mr. Hadoni, a widower, lives alone in a secluded area of the county accessible only by a dirt road. He has become estranged from much of his family, except for a twenty-three-year-old granddaughter who lives in the large city of Beacon ville, 150 miles away. Mr. Hadoni has caught wind of the dispute and has declared that, as a veteran, he will take nothing less than an “honorable discharge” to his own home on his own conditions. Mr. Hadoni insists that under no circumstances will he die in


the hospital or in a nursing home. He says he is grateful for all that has been done for him in PMH but that now it is time to get ready to say goodbye. He wants to spend his remaining time in a place that is familiar and comfortable—in the wild, with his trees, his animals, and his memories. Dr. Hathaway is a well-respected physician. Active in a number of local medi-cal society committees, he/she believes that, while medicine’s first responsibility is to the patient, the profession also has a moral and social responsibility to help control health care costs. The best way to do this is to use the appropriate level of care for each patient. Hospitals should be used only when required by the patient’s acute condition. Since Dr. Hathaway has gone public with this sentiment, he/she believes he/she must follow it in the way he/she renders care. To do any less would be to compromise his/her credibility. Moreover, Dr. Hathaway is under pressure to discharge this patient. Mr. Hadoni’s managed care medical insurance policy limits the length of his hospital stay and his number of covered days has almost run out. Nurse Ware has a different view of this case and of the role of hospitals in gen-eral. A forty-year veteran of hospital nursing, Nurse Ware has seen trends come and go. But the one principle that has not changed for him/her has been the highest concern for the welfare of the patient. He/She has seen health care providers and hospital administrators become more obsessed with early discharge over the past ten years, causing havoc for many patients and their families. This obsession also has had the unintended side effect of making Nurse Ware’s job more difficult, be-cause the patients who remain in the hospital are far sicker and require more care. Certainly, most patients can manage with a quick discharge. But over the years, Nurse Ware has seen many instances where the interests of the patient have been sacrificed to the concerns of social and administrative efficiency. The case of Mr. Hadoni, Nurse Ware believes, is typical of this trend. A man this sick and with this little support should not be sent home. Although the possi-bility of nursing-home placement has been raised, Mr. Hadoni is unwilling to sign the papers that would authorize his discharge to a nursing home. Indeed, it is not even clear that a nursing home could handle his care. And, to Nurse Ware’s dismay, Dr. Hathaway, knowing all this, still wants to send him home. R. Klein, one year out of a master’s degree program at the State College of So-cial Work, joined the staff of Five West as a social worker just three months ago. In that time, Klein has found that his/her degree work did not prepare him/her for the reality at PMH, where much of the work boils down to discharge plan-ning: working with the staff, working with the patient and family, and connecting them to local services. Klein has found that because PMH is not located in a large metropolis, few services are available nearby. Furthermore, Klein finds a persistent belief among many patients and families that a person who is sick belongs in a hospital. Klein’s boss, the director of the Department of Social Services, made it clear when Klein was hired that the job of the social worker at PMH is to move the patient out of the hospital as efficiently as possible. A record of continual efficient discharges has been responsible for the increased respect and recognition that the department has received.

Discharge Planning for a Dying Patient: A Role-Play 167

Klein has done some investigating about Mr. Hadoni’s case and has some good ideas for solutions. Unfortunately, his discharge has become such a contentious issue between Dr. Hathaway and Nurse Ware that neither has shown any interest in sitting down and looking at the options. Dr. Hathaway said, “Nursing home or discharge to home” in the last conversation, emphasizing that there was no need or time for further discussion. Nurse Ware said, “No way,” also emphasizing that there was no need for further discussion.

The Request for MediationThe social worker, R. Klein, frustrated with the impasse, has called the Bioethics Committee to request a consult. A member of the Bioethics Committee has been asked to mediate a meeting of Dr. Hathaway, Nurse Ware, and Klein to see whether there might be some resolution to the case.


Discharge Planning for a Dying Patient: Bioethics SimulationConfidential instructions for R. KLEIN, social worker(Please do not show these instructions to the other participants.)

You never scored high on those assertiveness tests. You are particularly intimidated by well-known doctors like Hathaway or hard-crusted nurses like Ware. But in this case, you think you have developed some workable options. Although you have tried to raise your questions to both Dr. Hathaway and Nurse Ware and even to explain what you’ve learned in your research, you have found both of them to be more concerned with their principles than they are with the patient. The information you have uncovered may provide the basis for resolution of the conflict. You know that Mr. Hadoni has a granddaughter and he has told you that they have a very close relationship. She seems to be the only person in the family who has been able to connect with him. However, she is a student at a local college, where she is now completing her exams. She has been working her way through school, and her graduating with good grades has been important to her and her grandfather. In fact, Mr. Hadoni has forbidden her to come to the hospital until she has finished her exams, two days from now. Although he never had much money, he has contributed what he can to help her through school. He often re-minds her that his dream has been to see her hold a college diploma, the first ever in the family. She is a pre-med student and over the years has spent many hours doing volunteer work in hospitals. She has cared for her grandfather in the past and may be able to stay with him over the summer, but you are not certain whether these plans are firm. You are not sure whether there is a Visiting Nurse Association (VNA) in that part of the county. Nurse Ware would know more about that. There is also men-tion in the medical record of a local physician, but you know nothing about him or his availability. You have had several interviews with Mr. Hadoni. He seems at peace with his terminal condition and he knows what is ahead of him. He has been an indepen-dent man and is proud of having been in control all his life. He told you that he wants to do the same thing with death that he did with life. You believe that a discharge plan that meets everyone’s concerns can be devel-oped. The question is whether Dr. Hathaway and Nurse Ware are interested in putting one together.


Discharge Planning for a Dying Patient: Bioethics SimulationConfidential instructions for DR. J. HATHAWAY, attending physician(Please do not show these instructions to the other participants.)

If you had to spend this much time and energy debating every hospital discharge, you would have virtually no time to practice medicine. Between the social worker and the nurse, someone should have figured out some way to move this case along. You have seen plenty of patients like Mr. Hadoni; his is precisely the type of case for which physicians rightly get so much heat. If Mr. Hadoni can indeed bene-fit from further medical care, there are nursing homes that can care for him just as well as PMH can and for far less money. If he does not want to go to a nursing home, the social worker should sit down with him and persuade him to sign the papers. More to the point, you believe that he is in possession of all his faculties and, if he still insists on going home, he should be allowed to do so. That is his right. This is not a medical problem. This is a social problem, and hospitals are not social service agencies. You want to see this problem over and done with in not more than twenty-four hours. One day is more than enough time to resolve a matter as simple as this. You are feeling pressure from all sides. Mr. Hadoni’s insurance coverage is about to run out, and you do not want the hospital stuck paying for further days while people try to make discharge decisions. You have kept your average length of stay admira-bly below that of other physicians at PMH, and you intend to keep it that way. If Mr. Hadoni insists on going home, you do know a doctor, Edward Sylvan, out in his part of the county. You met Dr. Sylvan at a medical society meeting and he mentioned that he is willing to do home visits for his patients as long as there is good Visiting Nurse Association (VNA) backup. Sylvan’s name appeared in the medical chart, so some home support arrangement might be possible. Because this has become such a complex and far-reaching case, you are con-cerned that it will set a precedent for similar cases. You are concerned about patient well-being but equally concerned about cost containment. Someone has to make the hard decisions. It would take some strong persuading for you to change your mind.


Discharge Planning for a Dying Patient: Bioethics SimulationConfidential instructions for C. WARE, nurse(Please do not show these instructions to the other participants.)

The hospital is facing the prospect of a large liability suit if Mr. Hadoni is dis-charged. Moreover, releasing a man as ill as Mr. Hadoni is unethical. If Dr. Hatha-way wants to become president of the state medical society, the campaign should not be waged on the backs of the patients at PMH. Dr. Hathaway’s outspoken support for controlling medical costs and patronizing admonishments of medi-cal colleagues for not joining the effort have alienated many doctors and nurses, even beyond the walls of PMH. It’s time to put an end to this unprofessional and unethical behavior. It is true that there are patients in Mr. Hadoni’s condition who have received adequate posthospital care in a nursing home. But this case is different. Mr. Ha-doni has confided to you that his wife died in a nursing home. He said to you just two days ago: “Mark my words, I would commit suicide before I go into one of those places.” You are convinced that he was not kidding. And people need to see his delusions about life at home in their proper context. You have never been out to his part of the county, but you know that there can-not be much out there except trees and bears. He may think he knows what is in his best interest, but sending him back there would be irresponsible. He told you about his loving twenty-three-year-old granddaughter who is ready to take care of him. But this is probably just another delusion. In all the time he has been here at PMH, she has not visited even once. His own daughter was here twice and, in both instances, relations seemed strained between them. He probably cannot depend on her for help. You know that there may be some services available in the section of the county where Mr. Hadoni lives. You have heard about another patient near Mr. Hadoni’s home who is receiving intensive Visiting Nurse Association (VNA) care. But it is not clear that the VNA could handle someone in Mr. Hadoni’s condition. The nurse assigned to the area would have to have some of her responsibilities reas-signed. It would take at least three days to arrange this, and maybe more. You are willing to listen, but there is a point to be made in this case that can-not be compromised. Hospitals were built to take care of patients, even patients like Mr. Hadoni. You do not care what some bureaucrat says at the managed care headquarters, or what Dr. Hathaway says here at PMH. It would take some strong convincing for you to change your mind.


Discharge Planning for a Dying Patient: Bioethics SimulationConfidential instructions for the BIOETHICS MEDIATOR(Please do not show these instructions to the other participants.)

This is a difficult situation compounded by the fact that you have some tough char-acters around the table. The issue goes beyond medical ethics. There are clashes of personality, as well as significant social, professional, and managerial issues at stake. Everyone seems to have a strong position to defend. You need to find a resolution that addresses all the issues in this case. Other-wise, problems will fester and may well come up with other patients. You may not reach a final decision in this case today. However, you want to establish the criteria for eventually making a decision, including determining what facts, information, or conditions will trigger a decision for each option. If these particulars can be established, the case can be moved along without this group hav-ing to reconvene. You are concerned that one or all the parties may leave the negotiating table before a resolution is achieved. The legitimacy of the Bioethics Committee is still questionable at PMH and, you realize, here at the table as well.

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11

An At-Risk Pregnancy: A Role-Play



PartiesHans Olsen, patient’s husband Dr. Leah Prince, obstetricianDr. Ron Walker, obstetrics chief resident Bioethics mediator

BackgroundSouthend General is a busy urban hospital. Its ambulatory care center serves the many low-income residents in the area who have no other resource. Thanks to a generous long-term grant from the federal government, it has a busy maternal and child health clinic (MCHC) that provides a comprehensive set of services for women through pregnancy and into motherhood. A problem has arisen in the care of one of the regular patients of the MCHC. A thirty-two-year-old woman, Cindy Olsen, is in her eighteenth week of preg-nancy. She and her husband, Hans, have one child, a six-year-old girl. Mrs. Ol-sen has had three recent miscarriages. She has been extremely apprehensive about her pregnancy, worrying and constantly asking questions about her diet, her hus-band’s work environment, and her medical care. The medical team working with Mrs. Olsen agrees that her anxieties are excessive, even for a woman with so many miscarriages. On an ultrasound of the fetus, Mrs. Olsen’s obstetrician, Dr. Leah Prince, notes that the structure of the fetus’s heart does not seem quite right. She has her suspi-cions, but she is not sure whether there is really a problem or whether the anoma-lous appearance of the heart is the result of the angle at which the ultrasound was taken. Dr. Prince wants to repeat the ultrasound and do a fetal echocardiogram to rule out a heart defect. A confirmed defect in the structure of the heart could indi-cate not only a serious heart problem but also a chromosomal abnormality.


Dr. Prince has been seeing Mrs. Olsen and her husband for the past seven years, from the birth of their first child through all the miscarriages. They have developed a very warm professional relationship. Dr. Prince, a doctor for thirty-one years and a mother, believes that sharing her findings and their possible implications with Mrs. Olsen at this point would cause Mrs. Olsen extreme distress. If Dr. Prince’s suspicions are not confirmed, she reasons, she will have spared Mrs. Olsen needless suffering. If her suspicions are confirmed, she will have time later on to discuss the implications of her findings with Mrs. Olsen and her husband. The obstetrics chief resident, Dr. Ron Walker, has been involved with Mrs. Olsen from the start of this pregnancy. Dr. Walker is upset because he finds it in-conceivable that a doctor would withhold information about the first ultrasound from the parents. Such a move would deny Mrs. Olsen the right to full informa-tion about her baby and the right to decide about her own health and that of her child.

The Request for MediationDr. Prince has decided to call for a clinical ethics consult to help resolve the ques-tion of whether to tell Mrs. Olsen about the doctors’ concerns. (The patient, Mrs. Olsen, is not an active role player in this exercise. This simulation ends when a decision is made about whether to tell her, how to tell her, and what to tell her.)

An At-Risk Pregnancy: A Role-Play 175

An At-Risk Pregnancy: Bioethics SimulationConfidential instructions for HANS OLSEN, patient’s husband(Please do not show these instructions to the other participants.)

Your wife’s intense anxiety weighs heavily on you. Indeed, you worry that all her tension cannot be good for her health or that of the baby. Still, Cindy has come through three miscarriages pretty well psychologically, and you believe that deep down she is a strong woman. You are reinforced in this belief after talking with Cindy’s close friend Carol. Carol and Cindy have had long talks about the preg-nancy, and Carol—a very levelheaded person—continues to reassure you. The real cost of all the tension around the pregnancy is the strain on your mar-riage. Cindy never misses a chance to worry about the microwave you bought, your halogen lamp, your computer screen, the carbon monoxide from your car, and even—once—the garlic on your breath from lunch. You have tried to humor her. But you have exploded with increasing frequency lately, because she has seemed almost to enjoy and need these worries. Your hope is that the pregnancy will go smoothly and produce a healthy child, and then the relationship will revert to its usual assumptions of sharing and trust. Another miscarriage will be tough for Cindy, and for you. It might also push you as a couple to consider pursuing adoption, something both of you have resisted until now. You trust Dr. Prince, and as long as Cindy is well cared for, you will be satisfied.


An At-Risk Pregnancy: Bioethics SimulationConfidential instructions for DR. RON WALKER(Please do not show these instructions to the other participants.)

You have finally exposed Dr. Prince as the rigid, power-hungry tyrant she is. She sometimes pretends to a little feminist chic, but really she cares only that doctors make all the decisions, and by that she really means doctors with centuries of expe-rience, not residents. There could hardly be a clearer case for a patient’s autonomy. Who else should decide about the welfare of a fetus if not the mother? Dr. Prince is wildly exag-gerating—as she often does—the harm that learning about a possible heart defect might cause the mother and fetus. But even if her suspicion is accurate, who ap-pointed her God? Even the risk management people would agree that Mrs. Olsen has to be told. The last thing the hospital needs is a lawsuit because a patient failed to get crucial information. Of course, if the decision is made to tell Mrs. Olsen and it causes her harm, you might be on the spot as the advocate for informing her. That would give Dr. Prince all the ammunition she would ever need in future battles with you. It would be aw-fully nice to find a way out of this corner. You are not happy about the possible impact on your career of being in conflict with a senior physician, but in the end, this is a matter of principle. You went into medicine because of your commitment to certain values. Informing patients about their condition is one of those values.

An At-Risk Pregnancy: A Role-Play 177

An At-Risk Pregnancy: Bioethics SimulationConfidential instructions for DR. LEAH PRINCE, obstetrician(Please do not show these instructions to the other participants.)

You are troubled by this case for several reasons. First, there is the danger to the patient. Second, there is the matter of overriding the judgment of a senior physi-cian. From your point of view, Dr. Walker is more concerned about patients’ rights than about patients. Yes, there is a place for the principle of informing patients about their condition. But each patient is different, and each piece of information is different. If the individual needs of each patient are ignored in the name of some higher principle, then we have done a great disservice to patient care. This is an example of the ideology of patients’ rights run wild. You are quite sure that the resident assigned to you, a young man, is chor-tling over the position that this case puts you in. He becomes the champion of a woman’s right to decide, and you look like an antifeminist. He has more than once made clear his dissatisfaction with your view that a doctor’s first, and often only, responsibility is to the patient’s physical well-being. He has chided you for being simplistic whenever this topic has come up. He has, for example, accused you of ignoring other interests, including patient autonomy and the psychological welfare of patients. The two of you have never discussed the matter in depth. Your position in this case just reinforces the image you know the younger house staff have of you as a rigid old traditionalist. You think this image is unfair and inaccurate. You would like to get out of this corner. If you do not tell Mrs. Olsen about the ultrasound and she finds out later that you had suspicions you did not share with her, she may be very angry with you. You also have to find some way to deal with the echocardiogram. You truly like the Olsens and do not want them to despise you, much less to sue you. This is a tough one. But as the physician for the Olsens for all these years, you believe the decision is yours.


An At-Risk Pregnancy: Bioethics SimulationConfidential instructions for the BIOETHICS MEDIATOR(Please do not show these instructions to the other participants.)

You have served as the on-site clinical ethicist at Southend General Hospital for six years. It has been a fascinating though taxing job for you. Several hours ago, you received the call from Dr. Prince. This latest case from the MCHC seems to be another real challenge. As a first step you called the Office of Risk Management. The director of risk management told you that telling Mrs. Olsen is definitely the safer route from a legal point of view. The results of the ultrasound must be included in the medical record. That record could be used as evidence if the Olsens later decide to take legal action. You take the view that all the relevant parties need to work together, and that your task is to bring about that collaboration. While you hope Dr. Prince and Dr. Walker will be able to resolve their differences, you are not required to bring them to the same conclusion. Your role is to give each a full chance to hear and explore the views of the other so that the outcome can be greater clarity about their own and others’ motives and the alternatives, as well as an agreement or a more sophis-ticated set of alternatives to choose from. Your preliminary hypothesis about the case is that the key question is whether to tell Mrs. Olsen, how to tell Mrs. Olsen, and what to tell Mrs. Olsen. As in any group process, you first need to decide whom you should involve in these discussions. Then you must decide how to begin. Do you bring all the rele-vant players together for an opening conversation or meet with them one at a time or in subgroups? These choices are yours.

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12

HIV and Postsurgical Complications in the ICU: A Role-Play



PartiesMr. and Mrs. Abruzzi, patient’s parents M. Aquino, ICU nurseDr. A. Schwartz, immunologist J. Henry, risk manager Dr. B. Heinstein, oncologist Bioethics mediatorT. Chen, social worker

BackgroundFrankie Abruzzi is a thirty-seven-year-old man currently in the intensive care unit (ICU). He admits to IV drug abuse in the past but claims he stopped using drugs several years ago. Seven years ago Frankie tested positive for HIV, and five years ago he was started on AZT. Also significant in his medical history is a heart-valve replacement several years ago due to endocarditis (inflammation of the tissue sur-rounding the heart) contracted through his drug use. According to his parents and immunologist, Dr. A. Schwartz, who has known Frankie for several years, Frankie has coped fairly well emotionally with his condition and has been very conscien-tious about taking care of himself. Recently, Frankie was divorced from his wife. He has tried to maintain contact with his young daughter. In August, Dr. Schwartz referred Frankie to Dr. Heinstein, an oncologist, be-cause of an elevated white blood cell count. A bone marrow biopsy was done, and Frankie was diagnosed with a very early stage of CML, a form of leukemia. Inter-feron was started six weeks later but was discontinued shortly thereafter because Frankie continued to spike fevers. According to Dr. Heinstein, Frankie’s leukemia is definitely treatable. While in the hospital, Frankie developed abdominal swelling due to fluid buildup. He also developed an acute retroperitoneal bleed, for which he was trans-


ferred to the ICU. The bleeding was coming from his right kidney; the kidney was removed one week ago. Postsurgery, Frankie has not recovered consciousness. He is on a ventilator, and weaning attempts have so far proved unsuccessful. He also has low blood pressure and has developed renal failure, for which he has received dialysis on three occasions. Unfortunately, because of Frankie’s low blood pressure, dialysis has had to be discontinued, at least temporarily. There is no health care proxy for the patient and no living will. Frankie’s parents seem genuinely concerned about doing what is best for Frankie and sparing him any unnecessary suffering. The day dialysis was started, Frankie’s parents walked into his ICU room and were shocked to see yet more tubes and machines hooked up to him. They asked for a do-not-resuscitate (DNR) order. The surgical resident provided one and Mrs. Abruzzi signed it. The social worker, T. Chen, witnessed the signing. The parents also told Dr. Heinstein, who was Frankie’s attending physician at the time, that they wanted dialysis stopped and no further aggressive treatment instituted. Dr. Heinstein explained to the family that he/she could not agree with their decision about resuscitation, dialysis, and other treatments. In Dr. Heinstein’s view, the patient’s condition was potentially reversible, that is, the patient might be “salvageable.” Dr. Heinstein stated that he/she does not want to continue to be Frankie’s physician under these circumstances. Dr. Burrows, the renal attending, stated that though Frankie is critically ill, if his blood pressure can be raised it would make sense to resume dialysis. If it cannot, then the issue of dialysis might be moot.

The Request for MediationAt this point, M. Aquino, a staff nurse in the ICU, called the bioethics mediator. The mediator set up discussions with two of the doctors involved with the case, Dr. Heinstein and Dr. Schwartz. Dr. Burrows was out of town at a conference and could not attend.

HIV and Postsurgical Complications in the ICU: A Role-Play 181

HIV and Postsurgical Complications in the ICU: Bioethics SimulationConfidential instructions for MR. ABRUZZI, patient’s father(Please do not show these instructions to the other participants.)

You are unsure about what is best for Frankie, though your wife feels very strongly that aggressive treatment should be stopped. Because you are somewhat intimi-dated by your wife, you did not strenuously object to her signing the DNR order. You have been pressing the physicians for a clear prognosis and do not know how optimistic to be. But you know that Frankie has always been a fighter and that he’s a person who loves life, and so you are pretty certain that Frankie would want everything done for him now and would not want to forgo care. During the meet-ing, you disagree, somewhat hesitantly, with your wife about termination of care. If you are comfortable with the way the meeting is going and if you receive ade-quate information and emotional support, you may agree to have the DNR order revoked and dialysis resumed when appropriate.


HIV and Postsurgical Complications in the ICU: Bioethics SimulationConfidential instructions for MRS. ABRUZZI, patient’s mother(Please do not show these instructions to the other participants.)

Your greatest concern is that Frankie not suffer. Because Frankie occasionally pulls at his tubes and grimaces, you are afraid that he is in pain and you want the treat-ment causing it to stop. You continually press the physicians to talk to you about Frankie’s prognosis. What really is his chance of returning to any kind of normal life? Even if Frankie should get over his postoperative complications—which you feel is extremely unlikely—he will still face a future with AIDS. You feel very strongly that aggressive treatment should be stopped. You believe that Frankie’s prognosis is grim and that he is in pain and suffering for no good purpose. Your husband is less sure than you are about termination of treatment, and you have argued with him about it. Also, you had to persuade your husband to agree that you should sign the DNR order. If you are comfortable with the way the meeting goes and receive adequate information about management of Frankie’s pain, as well as emotional support, you may agree to revoke the DNR order and resume dialysis if and when it becomes possible.


HIV and Postsurgical Complications in the ICU: Bioethics SimulationConfidential instructions for DR. A. SCHWARTZ, immunologist(Please do not show these instructions to the other participants.)

You do not feel as strongly as Dr. Heinstein does about the inappropriateness of a DNR order or of stopping aggressive treatment. You believe that Frankie is criti-cally ill and may very well not recover to leave the hospital. Should he arrest, re-suscitation may very well be medically futile. Even if it is not futile, resuscitation would likely impose an extraordinary burden on Frankie in light of his medical condition and the expected outcome of resuscitation. You are less sure about the appropriateness of discontinuing dialysis. In terms of pain management, you believe that Frankie is being adequately se-dated. In general, you are not adamant that in this case it is morally appropriate to sign a DNR order and withdraw aggressive treatment. You are willing to concede, however, that under the circumstances, Mrs. Abruzzi’s wanting the DNR is not unreasonable.


HIV and Postsurgical Complications in the ICU: Bioethics SimulationConfidential instructions for DR. B. HEINSTEIN, oncologist (Please do not show these instructions to the other participants.)

You do not agree with the DNR order or with Mr. and Mrs. Abruzzi’s wishes to stop all aggressive treatment for Frankie. The CML is in an early stage and treatable with chemotherapy. Frankie may be weanable, his peritoneal bleeding has stopped, his ascites (buildup of fluid in the abdomen or peritoneal cavity) is being treated, and his mental status may improve. Furthermore, there is no way of knowing how much longer Frankie can live with HIV. He has already made it seven years. Finally, resuscitation would not be futile or necessarily extraordinarily burdensome. You believe that the HIV issue must be separated from post-op issues so that the HIV issue does not unduly influence people’s thinking about what is appropriate care for Frankie. In your view, the situation is not hopeless. You may want to remind the mediator and Dr. Schwartz that the renal attending, Dr. Burrows, agrees with you that additional treatment is appropriate. You believe strongly that it is morally wrong not to treat Frankie aggressively and morally wrong to enter a DNR order. You are not conciliatory and you are convinced of the moral correctness of your position. You see it as your obliga-tion to do everything you can to help Frankie as long as there is a possibility of improvement.


HIV and Postsurgical Complications in the ICU: Bioethics SimulationConfidential instructions for T. CHEN, social worker (Please do not show these instructions to the other participants.)

When you witnessed Mr. Abruzzi’s signature on the DNR order, you thought the family fully understood Frankie’s condition and prognosis. You believe that Frankie is critically ill and that his parents are within their rights to consent to a DNR or-der and to request termination of aggressive treatment. The family, in your view, has a great deal of moral decision-making authority in such cases. You believe that withdrawal of life support is quite appropriate in Frankie’s case. But you are con-fused about what your role should be in the mediation. What should you do about the DNR order?


HIV and Postsurgical Complications in the ICU: Bioethics SimulationConfidential instructions for M. AQUINO, ICU nurse (Please do not show these instructions to the other participants.)

You take pride in the care you provide Frankie and do your best to comfort his parents as they wrestle with this wrenching decision. You see your job as offering emotional support to Frankie’s family. When you suggested to the family that it might be helpful to speak with a bioethicist, you did not make it clear to them that the bioethics consultation is advisory only and that the ultimate decisions about Frankie’s care belong to his attending physician.


HIV and Postsurgical Complications in the ICU: Bioethics SimulationConfidential instructions for J. HENRY, risk manager (Please do not show these instructions to the other participants.)

You are concerned first about the hospital’s liability. As legal adviser to the hospital, you are able to describe the legal situation in your state regarding DNRs and with-drawal of life-sustaining care. There are four medical predicates—terminal condi-tion; persistent vegetative state, or PVS (irreversible severe neurological damage, leaving the patient unaware of his or her surroundings and unable to recognize and relate to family and friends); medical futility; and extraordinary burden. At least one of these must be satisfied before anyone but a health care proxy can consent to a DNR order for an incapacitated patient. Stopping dialysis, an issue that may come up in the mediation, requires ei-ther a health care proxy or clear and convincing evidence of the patient’s prior wishes in this matter. The clear and convincing evidence standard is very demand-ing. General information about the patient’s values is not sufficient. The evidence must relate specifically to the patient’s condition and must show a firm and settled conviction to refuse aggressive treatment under these circumstances. Since there is neither a proxy nor clear and conclusive evidence from a legal point of view in this case, your stand is that withdrawal of dialysis is out of the question.


HIV and Postsurgical Complications in the ICU: Bioethics SimulationConfidential instructions for the BIOETHICS MEDIATOR(Please do not show these instructions to the other participants.)

Your working hypothesis going into the mediation is that the following issues will be discussed:

1. Patient’s current condition2. Patient’s prognosis3. Family’s understanding of these issues4. Family’s wishes regarding continued aggressive treatment5. Patient’s previously expressed wishes, if any; patient’s values, outlook on

life

During the meeting, you may have to decide whether to point out that the goal of medicine is not simply to provide all available treatment but to provide the treat-ment that is medically and ethically appropriate. You might mention that there is a significant bioethics literature arguing that withdrawal of dialysis may sometimes be ethically appropriate. And you might also discuss the importance of trying to determine the patient’s wishes regarding treatment and what is in his best interest.

189

13

Treating the Dying Adolescent: A Role-Play



PartiesMr. and Mrs. Ajuba, patient’s parents H. Albright, social workerDr. K. Salazar, oncologist Bioethics mediatorL. Harper, risk manager

BackgroundLucy is a seventeen-year-old Kenyan female who was diagnosed with cancer eigh-teen months ago. At the time of diagnosis, the cancer had invaded one kidney and metastasized to bones, lungs, liver, and aorta; Lucy’s prognosis was fairly poor given the extent of the metastases. Lucy underwent surgery to remove the diseased kid-ney six months prior to this hospitalization. She began a nonexperimental course of chemotherapy, but she showed no improvement. She was therefore placed on an experimental chemotherapy protocol. A scan done two months ago showed new metastases in her shoulders and bones. By the time of her admission, Lucy was ex-periencing significant abdominal pain, most of which could be controlled through the use of an analgesic patch. Shortly after her admission, her pain problems increased, and Lucy was admit-ted to the Pediatric Intensive Care Unit (PICU) in renal failure. She continued to experience significant pain, which was again controlled with an analgesic patch. During her stay in the PICU, she was often very restless and unable to lie still, even though every movement was painful. She was also terrified because she was clearly getting worse instead of better. In addition, her abdomen had become quite distended. She repeatedly asked why her “belly” was “so big.” After a few days in the PICU, she was stabilized and transferred back to the ward, but her remaining kidney was, in the words of her oncologist, “a disaster.” Lucy is emotionally immature for her age and unusually dependent on her par-


ents, especially her mother. Both of Lucy’s parents have been involved in her care from the beginning. They are both very religious and have repeatedly expressed their faith that God will cure their child. They lost their only other child to malaria before they moved to the United States. Her father has described Lucy’s illness as a “white man’s disease.” From the time of diagnosis to the present, both Lucy’s par-ents have insisted that she be told nothing about her prognosis or her medical sta-tus. Nonetheless, Lucy has given some indications that she is aware that her disease is serious and, more recently, that she is terminally ill. Throughout the course of her illness, Lucy’s father has insisted that she receive all possible treatment to keep her alive. Lucy’s mother has not opposed her husband’s orders but is generally more accepting of her daughter’s condition and prognosis. Shortly after Lucy was transferred out of the PICU, her oncologist, Dr. K. Salazar, stated that a do-not-resuscitate (DNR) order would be appropriate, that her tumors needed to be reevaluated, and that it was probably inappropriate to continue curative treatment. Dr. Salazar therefore raised the subject with Lucy’s parents. After considerable reluctance, the parents agreed to the order. The follow-ing day, however, the parents rescinded the order, and there was some indication that Lucy’s father had pressured his wife into this action. Now, a few days later, significant changes have begun to occur in Lucy’s condi-tion. It has deteriorated and worsened to the point that she has had to be readmit-ted to the PICU and intubated. In the PICU she has continued to deteriorate, and within the past twenty-four hours she has experienced four episodes in which her blood pressure has fallen to a dangerously low point, each of which was treated aggressively. She is receiving escalating support to maintain respiration, blood pres-sure, and other vital signs. In addition, her level of pain and discomfort requires heavy sedation.

The Request for MediationThe treating team, including physicians, nurses, and social workers, is concerned about the appropriateness of continuing aggressive curative treatment. Lucy’s on-cologist has sought a clinical ethics consultation to discuss appropriate treatment. A meeting has been set up to discuss the case.

Treating the Dying Adolescent: A Role-Play 191

Treating the Dying Adolescent: Bioethics SimulationConfidential instructions for MR. AJUBA, patient’s father(Please do not show these instructions to the other participants.)

Your faith is strong. You believe that God will save Lucy and that it is the respon-sibility of the hospital to keep her alive until God does his work. You are adamant that everything possible be done for your daughter. You see Lucy’s cancer as “a white man’s disease” that she never would have contracted if you had not brought your family to the United States. For that reason you sometimes blame yourself for her illness. Despite Dr. Salazar’s recommendation, you believe very strongly that Lucy’s sedation should be reduced or eliminated in the PICU so she can regain full consciousness. Your wife pressured you into signing the DNR order. When demanding that the DNR order be revoked, you said to your wife, “If Lucy dies it will be on your head.”


Treating the Dying Adolescent: Bioethics SimulationConfidential instructions for MRS. AJUBA, patient’s mother(Please do not show these instructions to the other participants.)

You do not want to continue living if Lucy dies. You believe that Lucy’s physicians are correct about her prognosis and you want to follow their recommendations. In your culture, family harmony is valued and a wife defers to her husband, so it is difficult for you to challenge your husband’s insistence on continued aggressive care for Lucy. You think your husband feels responsible for Lucy’s illness: you suspect he believes that if he had not brought the family to the United States, Lucy would not be dying of this “white man’s illness.” You reluctantly agreed to sign the DNR order. When your husband then demanded that the order be rescinded, he said to you, “If Lucy dies it will be on your head.”


Treating the Dying Adolescent: Bioethics SimulationConfidential instructions for DR. K. SALAZAR, oncologist(Please do not show these instructions to the other participants.)

In your medical judgment, Lucy’s prognosis is hopeless. With aggressive treatment, Lucy may be able to get through her current crisis, but all she has to look forward to is a few more months of physical and emotional suffering. You now advocate that Lucy’s level of treatment be scaled back and that the goal be provision of pal-liative care, even if this results in her death, as is probable. You have been frustrated in your efforts to deal with Lucy’s parents. Mr. Ajuba does not seem able to hear these facts, and Mrs. Ajuba appears too emotionally fragile to handle this forecast. Up to this point, you have acceded to the wishes of Lucy’s parents to continue aggressive treatment and not to tell Lucy of the gravity of her condition. But now you are deeply conflicted, torn between not causing Lucy further suffering and honoring her parents’ instructions out of a sense of moral obligation, as well as fear of their wrath. You feel strongly that Lucy should be kept sedated in the PICU, because without sedation she would experience a great deal of pain both from her disease and from the ventilator tube in her throat. You are thus distressed by Mr. Ajuba’s demand that Lucy be permitted to regain consciousness. You believe that if Lucy were to recover to the point of breathing on her own, it would be more diffi-cult to keep her pain-free and impossible to keep her both pain-free and conscious. You also are deeply disturbed that Lucy has never been informed about her condition and has never had the opportunity to participate in decision making, even though she has given indications of her ability to do so. You regret not having taken a more forceful stand on this issue earlier.


Treating the Dying Adolescent: Bioethics SimulationConfidential instructions for H. ALBRIGHT, social worker(Please do not show these instructions to the other participants.)

You appear to be the only person in whom Lucy has confided her awareness of her condition and her fears of dying. Lucy told you that she does not want her “heart to stop” and that she does not want to be alone when she “gets sicker.” She also indicated on several occasions that she was thinking about and afraid of dying, especially dying alone. You have felt very uncomfortable about not being able to discuss with Lucy the likelihood and the circumstances of her dying. However, you believe that as long as the medical staff are acceding to the parents’ wishes not to disclose this information to Lucy, you must also accede. You have talked with Mr. and Mrs. Ajuba about cultural norms and famil-ial bonds. They told you that since Lucy is their only remaining child, her death would mean the end of the family line, and this possibility is deeply upsetting to them.


Treating the Dying Adolescent: Bioethics SimulationConfidential instructions for L. HARPER, risk manager(Please do not show these instructions to the other participants.)

Your first responsibility is to protect the hospital from liability. You do not agree with Dr. Salazar’s recommendation that Lucy’s level of care be scaled back to focus on palliation. You are worried that the hospital is “walking into a lawsuit.” Go-ing against the parents’ wishes for life-sustaining treatment for their child could be legally explosive and would put the hospital at unnecessary risk. You feel that the parents will be less angry and more accepting if Lucy’s death is delayed, giving them more time to adjust to the inevitable and reassuring them that everything possible has been done for their child.


Treating the Dying Adolescent: Bioethics SimulationConfidential instructions for the BIOETHICS MEDIATOR(Please do not show these instructions to the other participants.)

You have been consulted by Dr. Salazar at a time of extreme turmoil among the health care team and the family. There are strong feelings on the part of the care-givers that the goals of care for Lucy need to be revised in her best interest. Great distress is evident among the health care team over the unwillingness of the parents to recognize the validity of the medical judgments and the inevitability of the suf-fering Lucy will experience with continued life-sustaining treatment. You are dis-turbed that the issue of communicating with Lucy was never squarely addressed by the caregiving team, and you feel this issue should be raised during the mediation. Another issue that must be resolved is Lucy’s sedation and pain control. Your working hypothesis going into the mediation is that you will need to lead a discussion about Lucy’s current condition and prognosis, her family’s un-derstanding of the condition and prognosis, family and provider wishes regarding treatment, and Lucy’s previous and potential for future involvement in her own care and decision making. You hope the mediation will result in a plan of care that respects the wishes and feelings of the parents, as far as this is possible without compromising the well-being of their daughter. It is also necessary to recognize and support the professional integrity of the caregivers. A central issue in the mediation is what constitutes “unacceptable suffering.”

197

14

She Didn’t Mean It: A Role-Play



PartiesPat Dee, patient’s son/daughter Dr. HendersonTanner Dee, patient’s son/daughter Bioethics mediatorM. Eberhart, patient advocate

BackgroundMrs. Dee is an elderly woman, critically ill with multiple medical problems, cur-rently in the ICU. She is on a ventilator and her blood pressure is falling, even though she is on medication to support her pressure. She has had one episode in which the staff felt they might need to attempt resuscitation, but the patient stabi-lized and remains in the same tenuous condition. Mrs. Dee’s kidneys have failed, and the renal consultant raised the possibility of dialysis. Mrs. Dee made a living will years ago that she later affirmed, stating that if critically ill and unlikely to recover she should not get dialysis, a ventilator, or artificial hydration or nutrition and that she should have a DNR order. She also stated that she never wanted to be a burden to her family. Her named health care proxy is her husband, who has since become severely demented. Mrs. Dee has been his primary caretaker at home. The Dees have two grown children, Pat and Tanner. Tanner, who wants to honor her mother’s intentions, just heard that the nephrologist got Pat to sign consent for dialysis and is very upset.


She Didn’t Mean It: Clinical Ethics SimulationConfidential instructions for PAT DEE, patient’s son/daughter(Please do not show these instructions to the other participants.)

You have always had to struggle to be heard in your family. You have not had the same level of success as Tanner, either in making friends or in the business world. You have struggled for years with depression. You have been living at home with your parents. You have had various jobs but have had trouble finding work that matches your level of education, since your illness doesn’t usually permit you to stay on for more than a year at any one place. Still, you are a part of this family and they are talking about your mother. She was the biggest drama queen in the world. Yes, they have a lot of fancy legal documents she signed, but you don’t for one minute believe that your mother meant a word of that. She is the last person in the world who didn’t want to be a burden to her family. She loved to be the center of attention, and she certainly is now. If she had wanted to die she would have com-mitted suicide. But that’s not what she wants. She has always been a fighter, and you are sure she still is. Plus, she means the world to your father, who will be lost without her. Who is going to take care of your dad, so frail and dependent, if she can’t do it? And even if she couldn’t take care of him, it would mean a lot to him to be able to see her, even if she was in the nursing home. When the kidney doctor came up to you and asked about dialysis, you were happy to agree because you really don’t like the idea of everyone giving up on your mother, especially Tanner. You signed the consent and you think they should go ahead. Why not? And they should definitely start her heart again if it stops—who wouldn’t want that for their mother? (In the media-tion, you are uncomfortable and distressed about your mother’s condition and you avoid eye contact at the beginning.)

She Didn’t Mean It: A Role-Play 199

She Didn’t Mean It: Clinical Ethics SimulationConfidential instructions for TANNER DEE, patient’s daughter/son(Please do not show these instructions to the other participants.)

You have always had to take on a parental role in this family. Your sibling, Pat, is someone you have had to shield from the world. Pat has depression and is just starting to get better. You don’t want the staff placing pressure on Pat to make de-cisions. Pat is having a hard time with the fact that both your parents are getting older. Your dad is demented and your mother, who has been his primary caretaker, is dying. She foresaw this and did the best she could to show her children what she wanted. She created a living will and went to the trouble of correcting it when her circumstances changed. She has seen firsthand through your father what it is like to continue living although severely disabled, and she doesn’t want any part of that. She also knows what a burden it would be on you to take care of both your disabled father and your mother in a similar state. (Pat is certainly not going to be able to contribute to their care either emotionally or financially.) However, that’s not why you want to honor her living will. You want to respect her wishes and do what she asked by avoiding dialysis and other aggressive treat-ments. She could not possibly have been clearer. You are quite upset that the renal doctor went around you and asked Pat for consent for dialysis, which Pat readily agreed to because (for good reason) no one ever puts Pat in charge on these issues. Pat’s consent has put you in the horrible position of seeming to want your mother to die. Pat loves your parents just as much as you do but is too upset by their ap-proaching mortality to make decisions that are rational or that reflect your parents wishes. Your mother should be taken off the vent she never wanted, should not have dialysis, and should be DNR, according to her clearly stated wishes.


She Didn’t Mean It: Clinical Ethics SimulationConfidential instructions for M. EBERHART, patient advocate (Please do not show these instructions to the other participants.)

These cases really drive you crazy. Patients go to the trouble of educating them-selves and making choices about end-of-life care, and then everyone just ignores what the patient wants. The doctors either don’t care what the patient wanted or don’t stand up to the families. The families have no idea what resuscitation means, and they have fantasies that the doctors can cure everything. If it were up to you, you would just tell Pat, who strikes you as a bit nutty, that there is just no reason to get in the way of Mrs. Dee’s wishes. Mrs. Dee let us know what she wanted, and what she said is what is going to rule this situation. This is exactly what patient rights are all about.

She Didn’t Mean It: A Role-Play 201

She Didn’t Mean It Clinical Ethics SimulationConfidential instructions for DR. HENDERSON(Please do not show these instructions to the other participants.)

This case was complex enough without the nephrologist coming in and recom-mending dialysis, and—without talking to you—going ahead and getting consent. You have had trouble with that doctor before, one of those who sees patients as kidneys surrounded by some skin and other stuff and has no sense of either the whole patient or the patient in the family. These siblings are not doing that well. You had a good understanding with Tanner, who gets the picture and understands exactly what you are recommending. Tanner is on the same page—someone you can work with. But Pat just doesn’t get it and thinks Mrs. Dee can pull through. The nephrologist created false hope that getting Mrs. Dee’s kidneys working would somehow change her overall situation, which you seriously doubt. It certainly won’t improve her quality of life, and you don’t believe it will even prolong her life, but instead will just contribute to a bad death. But now there is consent for dialysis in the chart and you will look bad if you advise the family not to go ahead with it. What a mess!


She Didn’t Mean It Clinical Ethics SimulationConfidential instructions for the BIOETHICS MEDIATOR(Please do not show these instructions to the other participants.)

You encounter a team and a family in distress. The patient left a living will clearly stating that if she were critically ill, she would want a DNR order and no ventilator, pressors (medications to keep her blood pressure stable), dialysis, or other aggres-sive measures. She meets those criteria now, yet she is on a vent and on pressors, and the family is arguing about dialysis. One grown child, Pat, appears to be quite fragile, has poor eye contact, seems possibly depressed, and is highly distressed by Mrs. Dee’s condition. Pat is insisting on a trial of dialysis, and the other grown child, Tanner, is insisting that they honor the terms of Mrs. D’s living will. Yet Mrs. Dee doesn’t want to burden her family, and the choice of comfort care would be terribly stressful for Pat. Is there a way to support the patient’s wishes, including her wish not to burden her family? How would Mrs. Dee want all concerned to understand the notion of burden? There is a range of contested decisions on the table regarding continuing the vent, DNR status, and dialysis. How can you help this patient, the team, and her family?

203

15

Don’t Tell Mama: A Role-Play



PartiesDr. Simon, chief resident Dr. Miller, attending physicianB. Wong, head nurse Jeffrey Gold, patient’s sonEleanor Katz, patient’s daughter Bioethics mediator Dr. Lowe, intern (Omit if there are too few people to cover all the roles.)

Background “I didn’t know what to do,” said Dr. Lowe, the intern. “I was about to go into Mrs. Gold’s room to get consent for the colonoscopy when suddenly they were all there in my face saying, ‘Don’t tell Mama if she has cancer. Tell her anything else, but not that, not even that it’s a possibility. It would kill her.’ ” The “they” Dr. Lowe referred to were the grown children—a son and a daugh-ter—of the patient who had been admitted two days ago. Mrs. Gold is an eighty-two-year-old widow who was brought to the hospital by her daughter after several weeks of fatigue, weakness, and gastrointestinal disturbance. Her history and physi-cal strongly suggested colon cancer, and a colonoscopy would be helpful in estab-lishing the diagnosis and developing a treatment plan. “I was so startled, I just kind of nodded at them and mumbled something about not having anything definite to tell anyone yet,” Dr. Lowe continued. “We all trooped into Mrs. Gold’s room, and they stood there while I explained that we needed her consent to do some tests to see why she is not feeling well. I don’t know if I sounded as evasive as I felt. When I told my resident what had happened, she was furious. She said that patients have the legal right to know their medical infor-mation and the family has no business telling us not to disclose it. When we made rounds the next morning, the family was waiting outside the patient’s room and warned the team again. My resident explained about the patient’s right to informa-


tion, and the son said: ‘Listen, I’m a lawyer and I know all about rights. If you say anything that upsets or harms my mother, you’ll find out firsthand what the law has to say.’ Before things got even more tense, however, the attending, Dr. Miller, stepped in and assured the family that we would not do anything to put the patient at risk.” Mrs. Gold’s tests have revealed that she does indeed have colon cancer. Dr. Miller put a big note on the front of the chart: “Patient is not to know her diag-nosis as per instructions of family.” There is considerable difference of opinion on the team about the appropriate way to handle the situation during the time Mrs. Gold is hospitalized for surgery and subsequent treatment. The effort to avoid talk-ing with Mrs. Gold about her condition has been very awkward for the house and nursing staff. Several staff feel that they are being dishonest and, as a consequence, not spending as much time with her as she deserves. Others feel intimidated by the threat of a lawsuit if they disregard the family’s instructions. At the suggestion of Brenda Wong, the head nurse, Dr. Lowe has requested an ethics consult to clarify the issues and provide guidance in dealing with this un-comfortable situation.

Don’t Tell Mama: A Role-Play 205

Don’t Tell Mama: Clinical Ethics SimulationConfidential instructions for DR. LOWE, intern(Please do not show these instructions to the other participants.)

You are the intern taking care of Mrs. Gold, and you are thoroughly confused. On the one hand, you agree with your resident that patients should be told about their conditions. Not only are they entitled to the information, but also it was so awk-ward being evasive with Mrs. Gold. Even though you didn’t exactly lie to her, there was a sense of conspiracy, as though you and her children were working together to keep her in the dark. And now they will expect you to continue withholding the information, even if she asks you directly. It would be so much easier just to be open with your patient. On the other hand, Mrs. Gold’s children have known her a lot longer and know her much better than you or anyone else on the care team. If they say that the news of her cancer will be harmful to her, they may very well be right. In addition, the attending, Dr. Miller, has probably had a great deal of experience with these things. If Dr. Miller thinks it’s appropriate not to tell the patient bad news, who are you to argue? The very last thing you want to do at this point in your career is antagonize the people who will be evaluating you and writing your recommendations.


Don’t Tell Mama: Clinical Ethics SimulationConfidential instructions for DR. SIMON, chief resident(Please do not show these instructions to the other participants.)

As chief resident in internal medicine, you have had more than four years of clini-cal experience. You are responsible for running the service and teaching the junior house staff. One thing you have learned is that working successfully with patients and their families depends on mutual trust. If they know that you are telling them the truth, they will give you full and accurate information. If they think you are holding out on them, they will suspect everything you tell them. In addition, pa-tients who trust you are much more likely to believe in and cooperate with the plan of care you recommend. What’s more, informed consent is impossible without full disclosure, and you question the validity of Mrs. Gold’s consent for the colonoscopy. The intern, Lowe, is inexperienced and without being heavy-handed, you’ll have to do some teaching there. But what’s the matter with the attending, Miller? Dr. Miller should know better than to suggest being less than honest with patients. Really, it was almost embarrassing to see a doctor cave in to the family because of the threat of litigation. It’s simply unethical to be asked to lie to patients. The more you think about it, the more indignant you become.


Don’t Tell Mama: Clinical Ethics SimulationConfidential instructions for DR. MILLER, attending physician(Please do not show these instructions to the other participants.)

You’ve been Mrs. Gold’s primary doctor for about eleven years, and until recently, she has been fairly healthy. You see her for regular checkups and when her arthritis and elevated blood pressure need attention. She’s a sweet lady who rarely com-plains. Her kids, however, are incredibly concerned about her health and somewhat overprotective, especially since Mr. Gold died of cancer about four years ago. So when her daughter, Eleanor, called a few weeks ago to talk about her mother’s “digestive problems,” you were not initially alarmed. When you saw Mrs. Gold in the office, however, you thought this might be something more than indigestion. Her obvious weight loss, fatigue, weakness, and pallor suggested that she might be anemic. When she acknowledged that her stools were dark, you were pretty sure she had some GI bleeding going on. Now the tests have confirmed colon cancer. In your thirty-two years of practicing geriatrics, you’ve learned a thing or two about elderly people and their grown children. Some patients want to remain in control and manage their own affairs, and they get very testy if anyone tries to do things or make decisions for them. Others are happy to be taken care of by their children. It’s hard to know whether Mrs. Gold was ever very independent, but in the years you’ve known her, she has seemed content to let her husband and then her children handle things for her. She shows no signs of dementia and she seems to understand what she is told; she just isn’t told very much because her children want to shield her from anything that might distress her. That’s perfectly understandable. You’ve also learned that just as important as protecting the patient is not dis-turbing the family. There is nothing more unpleasant—and potentially litigious—than the angry family of an upset patient. Indeed, there’s more than a little truth to the old adage, “Dead patients don’t sue, but live angry families do.” And the son in this case is an attorney. Just what you need. All in all, there’s no reason to burden Mrs. Gold with information that her children are convinced will be harmful to her and that she probably doesn’t want to know anyway.


Don’t Tell Mama: Clinical Ethics SimulationConfidential instructions for B. WONG, head nurse(Please do not show these instructions to the other participants.)

You’ve been taking care of Mrs. Gold for several days, ever since she was admitted, and you are troubled by the way she is being ignored. The care team is very focused on her diagnosis and treatment, and her family is devoted to her well-being, but they are not really seeing or hearing what is going on with her. Everyone is talking about her, but no one is talking to her. She’s a quiet little thing and she doesn’t ask questions, but it seems to you that she notices everything that goes on. She searches the faces of the people who exam-ine her as though she’s waiting for them to say something. She watches when the doctors and her children gather in the hall to talk. At those times, she just seems so alone. She’s very pleasant when you engage her in discussion about her grandchildren or a favorite television show, and when she gets going on her New York Mets, she is really lively. Once or twice you’ve asked if she has any questions or would like to speak with the doctors about her condition and treatment. She just gets quiet, shakes her head, and says: “My children always take care of everything. They are very good to me.” You don’t want to create problems, but you don’t think it’s right to just assume that someone who seems able to understand should be shut out of discussions about her health care. At the very least, someone should find out whether she does want to be involved, and if so, what she wants to know.


Don’t Tell Mama: Clinical Ethics SimulationConfidential instructions for ELEANOR KATZ, patient’s daughter(Please do not show these instructions to the other participants.)

Mama looks so tiny and helpless in that hospital bed. She’s lost more weight in the past weeks than you had realized and she’s so pale it seems she will disappear. You think you should have brought her to see Dr. Miller sooner. Even if he couldn’t have prevented her illness, he might have gotten to it earlier. Now it may be too late to matter. You realize that you can’t even say the word cancer to yourself, let alone to her. She would be so frightened, remembering what Papa went through during those last months when he was dying. He insisted on doing everything—surgery to re-move the tumor, a full course of radiation, and rounds of chemotherapy. He was so horribly sick, and through it all, Mama was right there with him. You never heard him discuss his illness, except to say, “The doctors know what to do,” and all Mama ever said was, “Papa has to do what he has to do.” Come to think of it, during that whole time and even after he died, she never talked about what she thought or what she would want if she were ever in the same situation. Just as Papa protected Mama from upsetting things, you and Jeff have to pro-tect her now. She’s just not strong enough to handle the knowledge that she has cancer—she might automatically think it means she will die. You and Jeff will deal with the doctors and help them understand that you’ll make sure she does whatever she needs to do. But she shouldn’t be burdened by anything that will only distress her and take away her hope and the will to beat this. She needs all her strength and good energy.


Don’t Tell Mama: Clinical Ethics SimulationConfidential instructions for JEFFREY GOLD, patient’s son(Please do not show these instructions to the other participants.)

You are trying very hard to stay calm, pleasant, and cooperative with Mama’s care team. You’ve been around long enough to know that there is a power structure in almost every setting and successful negotiation depends on identifying the people who can make things happen and the people who will stand in the way. You fully appreciate that the medical center hierarchy can work for or against you, depend-ing on the balance you strike between accommodation and assertiveness. That said, you are close to giving someone in the administration a piece of your mind, including a thinly veiled suggestion about possible litigation. You and Ellie have explained clearly and repeatedly that, for her own good, Mama is not to know about her diagnosis. It would be cruel to subject her to the anxiety and fear she would surely experience if she knew she had cancer. This is not, as that self- righteous resident seems to think, a matter of your wanting to control Mama’s life. Not all patients have families who know or care about them, but Mama is fortunate enough to have children who love her enough to protect her from things certain to be upsetting. What arrogance for these people—even if they are profes-sionals—to assume they know what’s best for someone four days after meeting her! At least Dr. Miller has enough sense to recognize how to work with concerned families. And the next person who talks to you about patient rights is going to hear plenty. This isn’t about some abstract legal or ethical principle. This is about your mother, who has been your responsibility for the last five years since you promised Papa you would take care of her after he was gone. All you need now is for Ellie to fall apart from the stress. These folks are going to have to understand that you will not tell them how to practice medicine and they will not tell you how to handle your family.


Don’t Tell Mama: Clinical Ethics SimulationConfidential instructions for the BIOETHICS MEDIATOR(Please do not show these instructions to the other participants.)

You assume charge of the meeting by establishing a climate of safety for com-munication, helping to identify the parties’ interests and goals, promoting the ex-change of information, and facilitating a resolution of the dilemma. You begin by introducing yourself and explaining that your role is to act as a neutral mediator of conflict between and among the various parties in this case. Rather than imposing a solution on the parties, your job is to help them reach some consensus on the best way to proceed and to articulate the relevant ethical and legal principles as they apply to this case. The order of speakers and issues is up to you, as well as the weight given to dif-ferent matters. It is your job to decide on the structure of the discussion and pos-sibly suspend the meeting if you think caucuses with individual parties might be beneficial.

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PART VI

Annotated Transcripts of Bioethics Mediation Role-Plays

The four chapters that follow are annotated transcripts of simulated mediations that were conducted during the 1999 and 2010 spring semester retreats for the Certificate Program in Bioethics and Medical Humanities. We have edited them slightly for teaching purposes. The commentary added throughout the transcripts calls attention to the use of mediation skills. The mediators for the “At-Risk Preg-nancy” (Chapter 16), “She Didn’t Mean It” (Chapter 18), and “Don’t Tell Mama” (Chapter 19) role-plays were students in the course. The mediator for the “HIV and Postsurgical Complications in the ICU” role-play (Chapter 17) was a profes-sional bioethics mediator.

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16

An At-Risk Pregnancy: A Role-Play Transcript

Parties

Hans Olsen, patient’s husband Dr. Leah Prince, obstetricianDr. Ron Walker, obstetrics chief resident Bioethics mediator

Background

A thirty-two-year-old woman, Cindy Olsen, is in her eighteenth week of preg-nancy. She and her husband, Hans, have one child, a six-year-old girl. Mrs. Olsen has had three recent miscarriages. She has been apprehensive about her pregnancy, worrying and constantly asking questions about her diet, her husband’s work envi-ronment, and her medical care. The medical team working with Mrs. Olsen agrees that her anxieties are excessive, even for a woman with so many miscarriages. On an ultrasound of the fetus, Mrs. Olsen’s obstetrician, Dr. Leah Prince, notes that the structure of the fetus’s heart does not seem quite right. She has her suspi-cions, but she is not sure whether there is really a problem or whether the anoma-lous appearance of a heart is the result of the angle at which the ultrasound was taken. Dr. Prince wants to repeat the ultrasound and do a fetal echocardiogram to rule out a heart defect. A confirmed defect in the structure of the heart could indi-cate not only a serious heart problem but also a chromosomal abnormality. Dr. Prince has been seeing Mrs. Olsen and her husband for the past seven years, from the birth of their first child through all the miscarriages. They have developed a very warm professional relationship. Dr. Prince, a doctor for thirty-one years and a mother, believes that sharing her findings and their possible implications with Mrs. Olsen at this point would cause Mrs. Olsen extreme distress. If Dr. Prince’s suspicions are not confirmed, she reasons, she will have spared Mrs. Olsen needless suffering. If her suspicions are confirmed, she will have time later to discuss the implications of her findings with Mrs. Olsen and her husband.


The obstetrics chief resident, Dr. Ron Walker, has been involved with Mrs. Olsen from the start of this pregnancy. Dr. Walker is upset because he finds it in-conceivable that a doctor would withhold information about the first ultrasound from the parents. Such a move would deny Mrs. Olsen the right to full informa-tion about her baby and the right to decide about her own health and that of her child. Dr. Prince has called for a bioethics consult to help resolve the question of whether to tell Mrs. Olsen about the doctors’ concerns.

Annotated Transcript

Doctors Prince and Walker meet with the bioethics mediator.

Bioethics mediator: All right. Well, I think, Dr. Prince, you know me. I know you know Dr. Walker. Dr. Walker, I’m the medical ethicist at Southend General Hospital, and I’ve been here for six years. Dr. Prince has called me in so that we can talk about what to do about Cindy Olsen. And I’ve called in the two of you to speak alone initially. What I’d like to do is to get the two of you to explore what are the medical limitations for Cindy Olsen—what are the possibilities, what are our roles in taking care of her. And, ultimately, what’s the best course of action for her: if she should be told, what she should be told; and if she is told, what kind of support she might need. So, I think, Dr. Prince, you’ve known Mrs. Olsen for the longest, so I wonder if you’d start by telling us a little bit about her history and her condition.

The mediator starts with introductions. She reframes the issues to focus on the patient’s needs rather than on the disagreement between the doctors and maintains that frame as she asks Dr. Prince to speak. By starting with Dr. Prince, she chooses to defer to the hospital hierarchy. This approach seems appropriate here as a way both to get information about the patient care issues and to build trust with Dr. Prince, who is under attack by the resident, Dr. Walker. In other situations the mediator might find it useful to go against the existing power structure and start the conversation by having someone lower in the hierarchy speak, thus sending the message that during the mediation everyone’s views are important and will be heard. The mediator’s use of the words “called in” (“Dr. Prince has called me in,” and “I’ve called in the two of you”) could cause a misunderstanding. In lay terms those words have a bit of a scolding tone. In medical settings consults may be “called in” to give an opinion in a case. Using that language in mediation may set up an expec-tation that the mediator will be presenting an option or making the decision.

Dr. Prince: I’ve been Cindy’s obstetrician for seven years. She has one child who’s six. Subsequent to that, she had three miscarriages. She’s now at

An At-Risk Pregnancy: A Role-Play Transcript 217

the eighteenth week of her pregnancy. She had an ultrasound last week, which revealed an abnormality—what appeared to be an abnormality in her baby’s heart. I don’t know if it’s a function of bad positioning of the machine, or whether it really reflects an abnormality. The other thing I’d like to mention is that Cindy’s a very anxious, overly nervous person, patient; everybody agrees that she’s excessively nervous, even though she’s had three miscarriages. What I would like to do is have this ultrasound repeated to clarify the evidence as to whether there is a heart abnormality or not. And I’d also like to get an echocardiogram. However, given Cindy’s history of anxiety, I don’t want to tell her what I’m doing or, let us say, I don’t want to tell her that I think there may be a heart abnormality in the fetus. I would just like to tell her the films didn’t come out, or the pictures didn’t come out, and I’d like to repeat it. That’s my position. I feel that in order to protect Cindy’s peace of mind it would be better to go ahead, do the tests, get the final results, get more definitive results, and then, if they reveal there’s a problem, talk to her about them.

Bioethics mediator: OK. Well, the husband does not know at the present time?

The mediator asks a quick clarifying question.

Dr. Prince: Neither the patient nor the husband.Bioethics mediator: Dr. Walker, tell us about your contact with Cindy—what

your feelings are about that?

This is an open-ended question for Dr. Walker.

Dr. Walker: Well, I’m the chief resident, and I’ve been with her since the beginning of the pregnancy. I’m aware of all of the situations leading up to this point. The ultrasounds we’ve done have not confirmed a heart defect at this point. My problem right now is realizing that the patient does not have the information that we have. And so I’m very concerned about concealing—which is exactly what we’re doing—concealing important information that the patient has a right to know.

Dr. Prince: My feeling is that by informing her you’re just going to exacerbate her mental state, which is precarious at the moment. And nothing is lost by telling her that we just need to repeat the test. Then we’ll get a more definitive result, and then we’ll tell her. We’ve lost nothing but a week, or even a couple of days.

Dr. Walker: Some things that come up for me, some issues are the fact that I do know this patient, and she tends to be quite anxious. She’s hyperalert to any signs of problems. If she, I believe, feels that we are doing additional tests, she’s going to have anxiety far beyond anxiety that she may get if we give her a reasonable explanation. You bring a patient like this in for their procedure, another ultrasound—we would be misleading her, actually


lying to her, if we told her the films didn’t come out. If you tell her that you’re going to do an echocardiogram, that’s further indication to a patient like this that there are other problems.

And I think you’re going to end up in the same anxious state, perhaps an even worse one, but you will have violated a patient’s right to know her condition, and you’ll lose trust.

Bioethics mediator: Let me clarify some things, if I can. You both think that she’s an anxious patient. Would you explain a little bit about what she’s done that’s led you to believe that this is going to be anxiety producing?

The mediator is transparent about what she is doing, saying, “Let me clarify some things.” She highlights an area of basic agreement between the doctors: that they are dealing with an anxious patient. She then asks a narrower but still fairly open question, seeking information.

Dr. Prince: Well, she’s constantly questioning the medical instructions I give her, asking questions about her diet, about her well-being, whether her husband’s job had anything to do with the prior miscarriages. Just much more so than any other—than most patients I have, and certainly much more than her first pregnancy.

Bioethics mediator: Has she done anything that’s unusual? Can you describe a little more of what she does? How does this affect her life, or her family?

The mediator asks further clarifying questions. Asking multiple questions allows the respondent to talk about whatever is most comfortable. One drawback, how-ever, is that the respondent may choose the questions that allow him or her to avoid talking about difficult subjects that need to be discussed.

Dr. Prince: I’m not aware of any particular action she’s taken, I just—you know, it’s a practical matter. I think, living—having a wife and mother in such a state of high anxiety has got to be difficult for the other members of the family.

Bioethics mediator: Has the husband expressed this to you?Dr. Prince: No.Bioethics mediator: Have you spoken to him about it? Dr. Prince: No.Bioethics mediator: OK. And could you give us some information about the

miscarriages?

The mediator slips into fact-finding mode here, asking for information that is un-likely to help resolve this dispute.

Dr. Prince: She’s had three prior miscarriages. They’ve been fairly recently.Bioethics mediator: And has this—Dr. Prince: Not that I’m aware of.


Bioethics mediator: Have you both seen the ultrasound that shows a possible heart defect?

The mediator is back on track, asking for information that will help problem solve. Here she makes sure that both doctors have seen the critical test result—that they are operating with the same information. This question begins a series of narrow questions by the mediator.

Dr. Walker: I have seen it. Dr. Prince: Yes.Bioethics mediator: And you said that this was going to be a matter of days.Dr. Prince: Yes.Dr. Walker: Yes. Assuming that we get her in for an ultrasound fairly quickly.Bioethics mediator: OK. After the repeat ultrasound and cardiogram are

done, do you feel that there’s going to be a degree of certainty about what you can tell the patient?

Dr. Prince: More than there is now. I certainly hope we know that—obviously, the baby could keep moving and wind up in the same place. But I think we’d have a much better fix on whether there are any heart abnormalities.

Bioethics mediator: But it’s still possible that you might have to wait another several weeks and repeat the test again, in order to have a level of certainty that you would like to have?

Dr. Prince: That’s possible. I hope it wouldn’t happen.Bioethics mediator: Dr. Walker—Well, maybe both of you could address

this. It seems that, in the best scenario, there would be an issue of several days involved before this test is done. Dr. Walker, what is the importance of these few days to you?

The mediator invites Dr. Walker, who has not spoken much, to become active in the conversation.

Dr. Walker: I have a tremendous concern, if this turned out to be very bad news for the patient and she needed to consider an abortion, that she would be running out of time. I don’t know that she’s thinking this, but I, as her doctor on her case, I’m trying to look at this from the patient’s perspective. And this is why I’m adamant about the patient’s need to know. This is of utmost importance to her, and for her family, and for the future of this child. And I think it is unethical not to tell her.

Bioethics mediator: Will her knowledge about a possible heart defect be crucial?

Dr. Walker: I believe it will be.Bioethics mediator: So then, going ahead with the testing has to precede her

making any decision?


With this and the previous question, the mediator is moving the focus of the doc-tors away from a debate about principle and toward the practical aspects of the situation.

Dr. Prince: But she has a lot of time. She’s only in her eighteenth week of pregnancy. She has until the end of the second trimester, which is another—I understand the risk increases as the weeks go on, but she’s got time. She’s not in the twenty-seventh week.

Dr. Walker: But even if that wasn’t the outcome, the fact is that we have information about this patient which is very critical, and we are keeping it from her. And I believe the ethics of our situation demand that we share this information with this patient. There is no clinical reason for us to withhold information.

Dr. Prince: There is a clinical reason. She is highly anxious, and I’m afraid that—If the information were 100 percent certain, I wouldn’t have a problem. But as it is now, we’re uncertain about the clarity of the films, and we have a patient who might be adversely affected, just by the simple fact of telling her this and then making her wait.

Dr. Walker: However, that’s hypothetical. We don’t know. We don’t know whether the fetus has a heart defect and we also don’t know that the patient is going to become anxious. This is staff’s impression of the patient. She’s done nothing to evidence her anxiety.

Dr. Prince: Well, I’ve known this patient for seven years.Dr. Walker: She hasn’t been—Dr. Prince: She’s really—I know this patient much better than you do. You’ve

only seen her for six months.Dr. Walker: But the present time is when I’m seeing her now. The past seven

years may have been that way. And in fact, in the past seven years, you haven’t been able to mention one time that her anxiety has put her in jeopardy.

Dr. Prince: Well, there’s physical jeopardy, and then there’s mental jeopardy. Increasing a person’s level of anxiety is jeopardy.

Dr. Walker: We have no psychiatric liaison, information as to the fact that the patient is overly anxious, and it’s damaging her present—

Dr. Prince: But we all agree that she’s excessively anxious, even for a person who’s suffered three recent miscarriages.

Dr. Walker: I wonder if it’s not staff anxiety that we’re talking about. We’re talking about reports from the staff. We don’t hear from the husband.

The mediator has allowed the exchange between the doctors to go on until it esca-lates and then intervenes with another clarifying question.

Bioethics mediator: Let me just ask you again. You’ve felt that it was very important to report this information to the patient as soon as it’s received by the staff.


At this point it would have been helpful to summarize before asking the question. For example: “Let me take a minute to summarize where I think we are now. You both agree that Cindy Olsen is an anxious patient, though you may differ about what should follow from that fact. And you both have seen the ultrasound and agree that the results are inconclusive but that it shows a possible cardiac defect, and that if there is a defect, the patient needs to know about it so she and her hus-band can make some hard choices. And it sounds as though you both agree that the test should be repeated and that it can be done in the next few days.” This sum-mary narrows the dispute by highlighting the areas of agreement. The mediator might then have gone on to acknowledge the doctors’ feelings and interests with statements such as: “It seems clear that both of you are com-mitted to this patient and are concerned about her well-being and that you both have strong views about how best to care for her. Dr. Prince, you have cared for Cindy through the birth of her first child and the subsequent miscarriages and you have seen the impact of those losses on her and want to minimize the stress of this pregnancy, and Dr. Walker, you are sensitive to Cindy’s stress level, but you are concerned that keeping information from her now may make it harder for her in the long run and you also see this as a matter of principle about a patient’s right to information.” The mediator, by showing that she understands both the feelings and the interests of the two doctors, may eliminate or at least reduce their need to carry on their battle. Then the mediator might have gone on to break the dispute into more manageable pieces, saying: “And it sounds as though there are two issues we need to spend some more time on: what Cindy should be told about the reason for the repeat test and when that information should be given.” Such a statement by the mediator would make the issues that need to be resolved explicit and focus the doctors on the problem that needs solving.

Bioethics mediator: [For continuity, the last statement from the transcript repeats.] Let me just ask you again. You’ve felt that it was very important to report this information to the patient as soon as it’s received by the staff.

Dr. Walker: Right.Bioethics mediator: But that the delay of two days, so that there could be

more conclusive information—Dr. Prince: That’s absolutely right. I think this notion that the patient has

to know everything we know as soon as we know, it’s not correct. I think there’s room for discretion. In this case, I think discretion is warranted.

Bioethics mediator: Is there any decision that the patient would be taking or that she would have to take that could potentially be made in the next two days, if she were told today?

Dr. Walker: Well, to my way of thinking, the patient needs to be informed about these other procedures, and she would have to give an informed consent. Without the proper information, she cannot give a valid informed consent about an echocardiogram and a repeat of the ultrasound.


Dr. Walker reverts to a positional response. The mediator should note the response and consider the significance of this reversion. It is not unusual to have parties circle back to earlier stages of a mediation, especially when they are being asked to make choices.

Bioethics mediator: How would you feel about involving the patient’s husband in this decision? Because he is dealing with her, he may have some insights into her mental condition about this situation. How would you feel about that?

The mediator makes a proposal. The basis for this proposal, however, is not clear. She needs first to do some information gathering about the husband, his role dur-ing his wife’s treatment, and their relationship.

Dr. Walker: I would be very reluctant to do that. I think it puts a terrible burden on the husband, to give him information which you then tell him he can’t tell his wife. That poisons the well. I would not want to do that. I don’t think that’s good for Cindy.

Bioethics mediator: Well, don’t forget, we’re talking about two days.

The mediator, having thought of the option of involving the husband, seems to be pushing it.

Dr. Walker: I don’t care whether it’s two days or twenty minutes. I just don’t think it’s the right thing to do. I don’t think it’s morally right to ask one marriage partner to conceal this information.

Dr. Prince: I agree with my colleague, but for different reasons. I feel that we’re talking about patient confidentiality, and that we must not go to the nonpatient and give the information that the patient rightfully needs. And I don’t believe time is the real issue here. I think it’s the actual concealment of information.

The doctors both reject the mediator’s proposal. Note that she made the proposal as a question so it was easy for the parties to say no.

Dr. Prince: I think time is absolutely the only issue. We wait forty-eight hours, we get more definitive information, and we—The possibility exists that we may never have to tell Cindy anything about this heart, that the baby’s heart may be perfectly fine, and then the problem is gone.

Dr. Walker: The problem remains, because we’re still concealing from the patient her condition, and the possible condition of her child.

Dr. Prince: But we don’t know definitively what the condition is.Dr. Walker: Then tell me how you’re going to get an informed consent from

the patient on two procedures without telling her the reason why.Dr. Prince: You tell her that—


In the foregoing exchanges the discussion escalates as the doctors reiterate their differing positions. Dr. Walker raises an important question but phrases it as a challenge.

Bioethics mediator: This was actually going to be my next question to you and, that is to say, what would you like to tell the patient at this point, before she goes for these procedures? And how would you propose to answer her, if she starts asking you pointed questions?

The mediator steps in and reframes the question so that it is not a challenge. Note her choice of words and the way she breaks down the problem into smaller pieces. She shifts from how Dr. Prince is going to get informed consent to what she would like to tell Cindy and how she will answer if Cindy asks pointed questions.

Bioethics mediator: Tell me what you feel would be a reasonable way to approach Cindy, in terms of asking her to do these two procedures. How would you put this to her? And how would you handle the situation, if she starts to ask you pointed questions?

The mediator clarifies further and gives Dr. Prince the opportunity to, in effect, practice her conversation with Cindy.

Dr. Prince: I would approach her by saying that the ultrasound was taken at the wrong angle, and that there’s an area of the baby’s heart that we were unable to see clearly, and we need to repeat the procedure to do this.

Bioethics mediator: Would you be comfortable with that explanation?

The mediator does a quick check with Dr. Walker.

Dr. Walker: I think I would be, because it seems to deal with the facts as we know them. It isn’t a distortion of facts. It represents what we have.

Bioethics mediator: OK. Well, suppose that she needs to go for an echocardiogram. What would you tell her then?

The mediator returns to Dr. Prince and continues walking her through, step by step, what will happen in her conversation with Cindy. This is a form of reality testing.

Dr. Prince: I would say that we’ve seen something on the film that is slightly abnormal, and we want to confirm it or rule it out by having an echocardiogram.

Bioethics mediator: Now, how will you approach Cindy if she becomes very agitated? Do you feel that there’s going to be something that you will have to tell her now?


Further reality testing by the mediator.

Dr. Prince: I don’t know. I would have to play it by ear. I would not lie to her, I just wouldn’t volunteer the information.

Reality testing, asking specifically what Dr. Prince would do if Cindy asks ques-tions, produces a response that is very different from the position Dr. Prince was taking that Cindy should be protected.

Bioethics mediator: How would you feel about that?

The mediator checks again with Dr. Walker.

Dr. Walker: It’s sounding a bit more reasonable. We absolutely can’t keep from her anything that we definitively know. But my concern is getting her through to have these tests done, which we really need to do. But also to walk a fine line respecting her right to information.

Dr. Walker, having heard that Dr. Prince does not propose to lie to Cindy, is able to acknowledge that the conversation proposed by Dr. Prince is “reasonable” but surrounds this acknowledgment with continued positional posturing. In this situation it is important that the mediator hear the agreement and let the rest of the statement go. Dr. Walker also may need time to absorb the fact that he and Dr. Prince really do not disagree when it comes to practicality rather than principle.

Bioethics mediator: So, let me see if I understand this. We have two possibilities. One is that you tell Cindy that the ultrasound was taken at the wrong angle and that she goes through with the test, and we then have definitive answers to tell her one way or the other. The other possibility would be that, in the process of explaining to Cindy, she asks specific questions which make it necessary for us to divulge our concerns at the present time. Am I understanding our options correctly? Are there other options that we have?

The mediator, rather than jumping on the agreement, summarizes the options. By doing so, she gives the doctors time to absorb the fairly significant concessions each has made. Consider her use of the words “we” and “us.” In the second sentence it is ap-propriate to say “we” because the options are the result of discussion between the mediator and the two doctors. In the third and fourth sentences the use of “we” and “us” is not appropriate because the mediator will not be participating in those discussions.


Dr. Prince: In other words, we leave it up to the patient to point out the direction she wants to go. And if she does ask very deliberate, pointed questions, we would give her more information and not hold any back.

Dr. Walker: We have to.Bioethics mediator: Now, have we considered what the role of the husband

is in this process? Is there anything that you’d like to say to the husband to help hold him back, so that he doesn’t come in and ask the questions for her? Would you like to share with him just enough so that he does not ask those pointed questions?

Note that in course of the discussion, references have become depersonalized. The doctors and the mediator have shifted from referring to the patient at least some of the time by her name, Cindy, to calling her the patient. In this intervention by the mediator, Hans Olsen is also depersonalized. He is “the husband.” Just as earlier in the discussion the mediator shifted focus from the dispute between the doctors to the needs of the patient, here she should get back to that patient-centered focus by using their names.

Dr. Prince: Well, I suspect that we would not be able to talk to the wife without the husband present, or at least that she would then go and talk to her husband. So I propose we tell the husband and wife the same thing. And then, if he asks pointed questions, which certainly as a practical matter would be near her or in front of her, we’d have to answer the questions.

Bioethics mediator: So you would feel that it would not be productive to speak to her husband, take her husband aside, and express that he not ask too many questions at this point?

The mediator is again trying to sell her idea or to deal with her concern about the husband.

Dr. Walker: No. For the same reason that I said earlier, that I don’t think you can put that burden on one of the partners.

Dr. Prince: And, again, it’s an ethical situation. It’s confidential information for the patient. I would hope that we could tell the patient that we would like to discuss her ultrasound, and would she like to have her husband present. That way, we can deal with that confidentiality issue. Again, we can’t conceal from him, or even hope that he won’t ask pointed questions, because it’s his right to ask whatever questions and our responsibility to answer them.

Dr. Walker: I agree with that.Bioethics mediator: Then, as I understand it, we have agreed that

you’re going to try to schedule her ultrasound, with or without an echocardiogram, within the next two days. And that the patient will be told that, because of the angle of the baby, the heart couldn’t be clearly


seen and for this reason the ultrasound will have to be repeated. If the baby hasn’t moved enough, then we’ll do an echo to further delineate the sections of the heart. That this is necessary because at this stage, we need to check all of these factors, and it’s a routine procedure, and that once the tests will be finished, then we can get the results.

Dr. Prince: Yes.Dr. Walker: I agree.Bioethics mediator: I want to thank both of you. It is clear you are both very

committed to Mrs. Olsen and I’m glad you’ve been able to agree on ways to work together in taking the next step.

Further Discussion

There are some common themes in this mediation: the desire on the part of some doctors to make decisions that they view as best for the patient without involving the patient or the patient’s family, and the cultural clash between young doctors trained in an era of informed consent and more senior doctors comfortable with a more paternalistic approach. One issue that was not discussed in this mediation but that the mediator needed to be aware of was the likelihood that Dr. Walker would be committing professional suicide if he could not find a way out of the confrontation with a senior attending. So an unarticulated need of Dr. Walker was to save face while backing down. The role-play (Chapter 11) was written with the husband, Hans Olsen, as one of the players. He is included to confront the mediator with two choices: whether to include him and, if so, when. This mediator made the decision not to speak with him separately from his wife. She felt that the disagreement was between the two doctors and that she should try to resolve things between them. If suc-cessful, she would not have to deal with whether to involve the husband. The mediator recognized that he was not a party at this stage in the dispute. Even if the mediator decided to include the husband, in bioethics disputes when there are disagreements among members of the treatment team, the bet-ter practice is for the mediator to meet first with the medical staff, either to resolve their differences or to clarify those differences and decide how they will be presented to the patient or the family.

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17

HIV and Postsurgical Complications in the ICU: A Role-Play Transcript

Parties

Mr. and Mrs. Abruzzi, patient’s parents M. Aquino, ICU nurseDr. A. Schwartz, immunologist J. Henry, risk manager Dr. B. Heinstein, oncologist Bioethics mediatorT. Chen, social worker

Background

Frankie Abruzzi is a thirty-seven-year-old man currently in the intensive care unit (ICU). He admits to IV drug abuse in the past but claims he stopped using drugs several years ago. Seven years ago Frankie tested positive for HIV, and five years ago he was started on AZT. Also significant in his medical history is a heart-valve replacement several years ago due to endocarditis (inflammation of the tissue sur-rounding the heart) contracted through his drug use. According to his parents and immunologist, Dr. A. Schwartz, who has known Frankie for several years, Frankie has coped fairly well emotionally with his condition and has been very conscien-tious about taking care of himself. Recently, Frankie was divorced from his wife. He has tried to maintain contact with his young daughter. In August, Dr. Schwartz referred Frankie to Dr. Heinstein, an oncologist, be-cause of an elevated white blood cell count. A bone marrow biopsy was done, and Frankie was diagnosed with a very early stage of CML, a form of leukemia. Inter-feron was started six weeks later but was discontinued shortly thereafter because Frankie continued to spike fevers. According to Dr. Heinstein, Frankie’s leukemia is definitely treatable. While in the hospital, Frankie developed abdominal swelling due to fluid buildup. He also developed an acute retroperitoneal bleed, for which he was trans-ferred to the ICU. The bleeding was coming from his right kidney; the kidney was removed one week ago. Postsurgery, Frankie has not recovered consciousness. He


is on a ventilator, and so far weaning attempts have proved unsuccessful. He also has low blood pressure and has developed renal failure, for which he has received dialysis on three occasions. Unfortunately, because of Frankie’s low blood pressure, dialysis has had to be discontinued, at least temporarily. There is no health care proxy for the patient and no living will. The day dialysis was started, Frankie’s parents walked into his ICU room and were shocked to see him hooked up to yet more tubes and machines. They asked for a do-not-resuscitate (DNR) order. The surgical resident provided one and Mrs. Abruzzi signed it. The social worker, T. Chen, witnessed the signing. The parents also told Dr. Heinstein, who was Frankie’s attending physician at the time, that they wanted dialysis stopped and no further aggressive treatment instituted. Dr. Heinstein explained to the family that he could not agree with their decision about resuscitation, dialysis, and other treatments. In his view, the patient’s condition was potentially reversible. Dr. Heinstein stated that he/she does not want to continue to be Frankie’s physician under these circumstances. Dr. Burrows, the renal attend-ing, stated that though Frankie was critically ill, if his blood pressure can be raised it would make sense to resume dialysis. If it cannot, then the issue of dialysis might be moot. At this point, a staff nurse in the ICU, M. Aquino, called the bioethics mediator.


Bioethics mediator: Good morning. Thank you all for agreeing to come together this morning. I think that I have met most of the staff and I had a brief opportunity to talk to Mr. and Mrs. Abruzzi earlier today. Good morning to both of you. I especially appreciate your coming since I know something about this case and realize that this is a very difficult time for both of you.

Let me explain my role today. I am trained as a lawyer but have worked at this hospital for twenty-five years and have developed the program in medical ethics. In 1978 I founded the Bioethics Consultation Service, which is often asked to participate in discussions about cases in which difficult decisions need to be made. It is my task, or the job of my two colleagues in the service, to try to convene all of the parties so that everyone can hear each other. We don’t come to make the decision. We come to be certain that all of the medical facts are on the table and that all of the options for action have been stated and considered. When possible, our goal is to help the patient, family, and medical staff to reach a consensus about a plan of care that all are comfortable with and that will guide the medical interventions provided. So that is why I asked you all to come together today, and I thank you all. Now, let us take a moment and have each of you introduce yourself and explain your role in Frankie’s care and treatment. [Introductions omitted.] Thank you all very much.

HIV and Postsurgical Complications in the ICU: A Role-Play Transcript 229

The mediator begins by introducing her role. Next, she lets the family know that she has some information about the case and shows empathy for what they are going through. Then, after establishing her expertise, she quickly and concisely explains the goals of the session: giving the parties a chance to hear each other, getting out all the medical facts, identifying and considering options, reaching con-sensus if possible. Finally, she asks participants to introduce themselves and explain their roles. Even though Mr. and Mrs. Abruzzi probably know the team members, in any mediation, starting with introductions ensures that family members under-stand each staff member’s role.

Mr. Abruzzi: Can we talk about the DNR order now?Bioethics mediator: Well, if you would not mind, I would like to put that

off for just a while. One of the issues in thinking about a DNR order is what the physicians hope or expect might be the possibility of recovery. So if we could put off the discussion for just a bit perhaps, I am hoping that we will have more facts to consider and discuss together. I promise you, Mr. and Mrs. Abruzzi, that we will not end this discussion today before we have decided about the DNR order. I realize that this order seems the most important decision to be made, but let us try to understand what is happening medically with your son first, and then consider all of the possibilities for actions second. Is that OK? [All participants nod assent.] Good.

The mediator responds to Mr. Abruzzi’s attempt to begin the mediation with a discussion of the DNR by proposing an alternative way to structure the discussion to focus first on obtaining medical facts. In doing so she expands the grounds on which the decision will be made. She reassures him that the DNR question will be addressed and acknowledges how important this issue is for the parents.

Bioethics mediator: As I think everyone knows, Dr. Schwartz and Dr. Heinstein, you have differing opinions about what the course of Frankie’s treatment should be. So, would you mind beginning, Dr. Heinstein, and telling us what you think is going on with Frankie’s new diagnosis of cancer. I am sure that we all appreciate that for Frankie’s family, this seems to be the last straw—how could their son get any sicker? But I must admit that sometimes, as a nonphysician, I am amazed by how sick a patient can seem and how hopeful the physicians can remain. So, Dr. Heinstein, could you review the medical facts and tell us what you think is happening with Frankie.

Dr. Heinstein: Well, let me explain why I did not want to agree with the DNR order that the—

Bioethics mediator: Dr. Heinstein, let me interrupt for just one moment. If you would not mind, could we leave the discussion of the DNR order for a bit later? I promise everyone that we will get to this discussion before we break. But for now let us all try and understand what is happening with


Frankie. I realize that it is a very complicated picture and difficult to sort out, but since the family is responsible for deciding about this order, I would like them to have as much information as possible before they have to grapple with this task.

And, before you return to the issues, Dr. Heinstein, may I ask you and all of the other medical staff to try to speak in terms that a nonmedical person would understand. One of my mentors once said: “Remember, the doctor speaks doctor and the nurse speaks nurse, and no one speaks patient or family.” So let us return to Dr. Heinstein. Thank you for letting me add these few words—

At the outset of any bioethics mediation, the mediator faces an important decision about who should speak first—the person with information, the person who initi-ated the consult, the person who needs to be heard, the person of higher rank, or the person of lower rank. There are no rules for making this choice, but it is impor-tant to be aware of the advantages and disadvantages of each choice. Since completing the first edition of this book, we, the authors, have changed our theory of the preferred sequence of speakers at the outset of a mediation. We now recommend that the mediator give the patient or the family members the op-portunity to speak first. This early inclusion helps them to find their voice in the context of the mediation. It empowers them, as the experts on the patient, to offer information unavailable to other participants in the mediation. Please be reminded that it is inadvisable to ask the families what they think is going on medically. An answer to that question commits them to articulating material that will likely be incorrect and will make them feel somewhat embarrassed or ashamed. In any event, it places conjecture on the table rather than the best medical presentation. We include the transcripts and the accompanying commentary from the first edition (Chapters 17–19), in which the mediator calls first for the medical facts, as they are a rich source of robust advice and provide examples of problems encoun-tered and conquered by the mediator. It is important early in the mediation to have one of the participants state the medical facts, especially where several physicians are involved in the patient’s care, since the medical facts will be the basis of subsequent discussion. Often, even among health care providers involved with a specific patient, there are misconcep-tions about the medical facts. These facts can be clarified by having one doctor pull them all together and state them for the group. Moreover, medical facts are always in flux. Tests and monitors produce ever-changing data and doctors differ on the meaning and interpretation of the data. The mediator tries to obtain agreement on the facts before moving the discussion to the meaning that treatment team mem-bers assign to those facts and the doctors’ theories about what is going on (their differential diagnoses), what treatment alternatives are available, and what is likely to happen in the future (the prognosis). In this case, the bioethics mediator chose to start with Dr. Heinstein, the on colo gist, whom she saw as the source of the problem, rather than with Dr. Schwartz, who was in charge of Frankie’s care and therefore in a position to give the


most complete overview of the facts. The information the mediator had before the session suggested that the parents wanted a DNR order but were being pressured by Dr. Heinstein to withdraw it. The bioethics mediator decided to let Dr. Hein-stein speak first in order to get a sense of his current position. She entered the me-diation expecting, because of her experience with oncologists, that Dr. Heinstein would be the most difficult participant in the mediation. When asked, during a debriefing of this mediation, why she decided to invite the oncologist to speak first, the mediator acknowledged that her history with on-cologists had made her biased. She expected that Dr. Heinstein would want to treat this patient until the moment the patient crashed. She entered the mediation with information that suggested it might be time to stop treatment, expecting to deal with a physician whose approach was that it is never time to stop treatment. No mediator can be unbiased. Each is influenced by his or her life experiences. What is critical and is demonstrated by the mediator in this case is that the mediator be aware of her bias. Here she remains open to the possibility that she is wrong; and, despite her preconceptions, she treats Dr. Heinstein impartially. Other mediators might choose to start with Dr. Schwartz in order to elicit a com-plete overview of the medical facts, possibly in a less contentious tone. The mediator needs to take time to think through the pros and cons as he or she decides on the initial order of speakers. It is also important to remember that mediation is a very for-giving process. Usually the only cost of making a wrong judgment about the timing or order of speakers is that it will take more time to gain the trust of the participants and obtain a clear sense of the issues that need to be addressed in the mediation. Beginning mediators often think they should allow the person who initiated the consult to speak first. In some cases that approach may be appropriate, but in others the initiator may have a heightened perception of conflict, which is likely to be expressed in ways that set an unnecessarily contentious initial tone. In addition, depending on where the person who initiated contact with the bioethicist fits in the hospital hierarchy, he or she may be feeling vulnerable and prefer to avoid the initial spotlight. Notice that in this case the mediator does not identify the person who initiated the consult, and no one asks who did so. In a well-designed program, anyone in the medical center can ask for intervention by a bioethicist. The bioethics mediator should be prepared to deal with situations where participants want to focus atten-tion, and possibly blame, on the initiator, rather than on the problem that needs to be solved. Often, part of the agenda of the mediator is to reveal who asked for the inter-vention in a setting where resentments about making the dispute public can be dealt with. Such might be the case if a junior person calls a consult and in doing so angers the senior attending physician. Early in Dr. Heinstein’s presentation, he (like Mr. Abruzzi) raised the issue of the DNR order. The DNR order had been the focus of a positional battle involving members of the treatment team and Frankie’s parents about the proper response to Frankie’s deteriorating condition. Without the mediator’s intervention to postpone discussion of the DNR issue, the participants would probably have focused on


positions and, while doing so, found it difficult to listen or give information. The mediator’s again saying, “We’ll get to that later. We’re not going to do that now,” allowed all parties to relax and listen rather jump to battle mode to defend their positions. At the same time, the mediator indicated her awareness that this was an issue that would need to be addressed.

Dr. Heinstein [after summarizing the medical facts as just set out]: So you can see that we can’t hold off on the DNR decision for very long.

Bioethics mediator: So, Dr. Heinstein, let me just understand from your perspective. You came in as the oncologist for the patient, and he has a leukemia which you think is possibly treatable. He may get better from this leukemia, but we would have to get his blood count up and get him back on dialysis, but you think he could get better?

Dr. Heinstein responds to the bioethics mediator’s deferring of the DNR discus-sion with a statement that could be taken as a challenge to the mediator’s proposed structuring of the discussion. Rather than treating the doctor’s statement as a chal-lenge, the mediator responds by summarizing the presentation of medical facts and his assessment of the prognosis. She then checks with him to be sure she has heard correctly. This checking with the speaker also demonstrates the mediator’s respect for the speaker and is an important way of validating the speaker’s participation in the process. At this point the bioethics mediator might also have checked with the family to see whether they had any questions about the medical facts or had learned any-thing new.

Dr. Heinstein: Yes, indeed.Bioethics mediator: Dr. Schwartz, could you give us a little history of you

and the patient and tell us where you think the issues are now.

This is a fairly open question by the mediator. By asking for a history of the physi-cian with the patient and for the physician’s assessment of the issues, the mediator provides a frame that draws attention to the patient rather than to the conflict between the doctors.

Dr. Schwartz: Well, I started taking care of Frankie several years ago but transferred the care to Dr. Heinstein when he developed the leukemia because that really wasn’t in my area of expertise. I’m more of an infectious disease physician. My area of expertise is AIDS/HIV. His subsequent problems have necessitated that we work with many different specialists because, as you know, at this point HIV is a disease that affects many different organs and one person can’t really be responsible for all the parts of Frankie’s care. I think that I have a slightly different perspective than Dr. Heinstein does in the sense that although many of the parts of Frankie’s current disease are treatable in isolation, I have to wonder if he does have


a cardiac arrest that requires resuscitation, given all the many different problems he has, what the final outcome would be if we resuscitate him.

Bioethics mediator: Could we hold the resuscitation discussion just for now? Again, what I hear you saying—and this is a hard one, so please make sure I have it right—is that he is very sick. He’s got HIV disease, which has had a complicated course, and he now has leukemia, which has a complicated course. Can you give us some sense of how these two layer on each other? What does it mean to Frankie as a person, from your perspective as an HIV specialist, to have these two things together?

The mediator does three things: She summarizes what Dr. Schwartz has said about the medical facts. She again puts off discussion about resuscitating Frankie. Then she asks a clarifying question that directs the focus back to the patient. By asking, “What does it mean to Frankie as a person?” she reminds all the participants that this is not just a theoretical discussion; it concerns a real person.

Dr. Schwartz: I would just like to add also the renal disease, which is significant in terms of his prognosis.

Bioethics mediator: And is that a result of his HIV?Dr. Schwartz: They are all connected. The cardiac disease, the kidney disease,

they really are all part of the same problem. It’s very difficult to separate the causes and really not as important as understanding that there are many different things happening to him at the same time, each of which has a grave prognosis, which makes the hopefulness of his leaving the hospital very slim.

Mr. Abruzzi: So you think it probably doesn’t make sense to resuscitate him?Bioethics mediator: Well, again, Mr. Abruzzi, if you would just bear with

me for a minute, we will get to the decision about resuscitation. I just want you to have a feeling of what the physicians are saying. I think what Dr. Schwartz is saying is that he has HIV disease, which he has had for a long time. That’s related to his cardiac disease, which is now a freestanding problem. It’s also related to his kidney disease. He’s had one kidney removed and the other isn’t working, and he now has leukemia. So what I hear from Dr. Schwartz actually is a bit of a different presentation than from Dr. Heinstein. That is, he has all of these things happening at once, which is a little bit different from Dr. Heinstein, who is focusing on his leukemia. We will get to the DNR discussion, if you would just bear with me.

The mediator responds to Mr. Abruzzi’s question by slowing things down. She again summarizes what the doctors have been saying. Then she explains why she is proceeding as she has been before asking him to wait on the DNR discussion. It would have been helpful also to acknowledge how difficult it is for parents to be faced with this decision. Note the way the mediator presented the differences between the two doctors.


She did not mention the word disagreement; instead she said they had made differ-ent presentations.

Mr. Abruzzi: Whom do you agree more with?Bioethics mediator: I don’t agree or disagree with either of the physicians. I

would only point out that they seem to be focusing on different aspects of Frankie’s illness. That is not surprising. Dr. Heinstein is an oncologist, a specialist in the treatment of cancer. He is addressing this aspect of Frankie’s illness, which he was asked to do. Dr. Heinstein is really focused now on the leukemia, as he should be. He’s an oncologist and we brought him in as a specialist to look at this problem. Let us see first what the different perspectives of the physicians are and then see whether or not they disagree.

The mediator provides a bit of stroking for Dr. Heinstein by saying he is doing his job as a specialist. She preserves her neutrality by saying she does not agree or disagree with the doctors and brings some clarity to their differences by beginning to point out their different perspectives. Again, it would have been helpful to ac-knowledge Mr. Abruzzi’s feelings.

Mr. Abruzzi: That’s not exactly what I’m talking about. I don’t disagree that the deck is stacked against my son, but as long as there is one live card left to play, I think it’s wrong for us not to play it. But even if you try dialysis, we still think resuscitation is wrong.

Bioethics mediator: That was very helpful. The only thing I would ask you is to leave words like right and wrong out because that won’t help us. Your perspective, I think, is very clear and, I think, very helpful. So can we put the DNR discussion aside for just a minute? So, two slightly different perspectives: one from our specialist whom we brought in—“Let’s get this leukemia under control. I think we can.” And Dr. Schwartz, who seems to be saying there are so many problems going on that it might not help to look only at the leukemia. Is that a fair statement, Dr. Schwartz?

The mediator again diverts the discussion from talk about the solution and returns to clarifying the issues. The mediator’s request that Mr. Abruzzi “leave words like right and wrong out because that won’t help us” could be problematic on several counts. The statement could feel like a criticism to the parents, although framing it as a request mitigates the risk. Probably a more important problem with the statement is that the reason for it is unclear. The mediator was trying to remove from the table the notion that choices can be right or wrong but would have done so more effectively by saying something such as: “The goal of the mediation is to make decisions that feel right to all.” Also, rather than sticking to her agenda, the mediator might have allowed the discussion temporarily to move in a different direction by exploring the “it would


be wrong” statement by the father. She might have asked a clarifying question such as, “When you say it would be wrong, what do you mean?” and then again have reassured the parents with a statement such as, “The goal of the mediation is to make decisions that feel right to all.”

Dr. Schwartz: That and I guess my question about even if we can control many of these problems medically, what it’s going to mean to Frankie, who is the person that we’re trying to treat.

Bioethics mediator: Maybe it would be helpful to get two other perspectives before we go on to talk about where we go with this. [Turning to Nurse Aquino] You are the nurse caring for the patient?

The mediator missed an opportunity to respond to Dr. Schwartz’s comment fol-lowing her earlier reminder that the focus needs to be on Frankie. She could have responded, “Maybe it would be helpful to get two other perspectives on what all of this means for Frankie.”

Nurse Aquino: Yes. I’m in the ICU. There are a group of us who care for the patients there, but I care for Frankie.

Bioethics mediator: And you’ve known him now since he’s been in the ICU? Nurse Aquino: Yes.

After a few narrow questions to the nurse, the mediator then asks an open-ended question.

Bioethics mediator: Would you like to add anything?Nurse Aquino: I think that what we’ve been really struck with is the anguish

that Mr. and Mrs. Abruzzi have been going through trying to make a decision. We see them there at the bedside, and we know that they’re hearing different things from different people, and we know that they really love Frankie and they are really trying to make the very best decision for him. The nurses just feel that there is not enough for them to grapple with to make the decision that they’re going to have to live with, no matter what happens to Frankie, whether he has a DNR or doesn’t, whether he has treatment or not. They need to feel comfortable in their decision. I think the other thing is that the nurses are struggling with it too because we’re there every day with Frankie. Mr. and Mrs. Abruzzi are there a lot of the time, but we’re there twenty-four hours a day. We’re taking care of Frankie and bathing him and taking care of all of his needs. We know that some of these decisions are going to have real consequences for us as the primary caregivers. So we’re really concerned about making sure that this is a decision that everybody understands.

This is a terrific response from the nurse that everyone—including doctors and mediator—could learn from. Aquino begins by acknowledging the parents’ feel-


ings and recognizing their love for their son. She frames the issue as needing to give them enough information so that they can both make the decision (this is a statement of the issue) and live with it, whatever it is (this is a statement of their underlying interest). She then indicates her interests and those of the other nurses as the twenty-four-hour-a-day caregivers.

Bioethics mediator: You’re lucky you have such good nurses. That makes a real difference. But I think that, Ms. Aquino, you raised a very important point, which is what I hope comes out of these discussions is not that they will have to make a decision but that we’ll all reach an agreement that we’re comfortable with so that we won’t put all of that responsibility on them. [Turning to the parents] Obviously, you have the authority to make decisions for Frankie—you’re his parents. I think it’s a very important point that, at best, we try to share the burdens of those decisions. Mr. Chen, do you have anything to add?

The mediator acknowledges the value of the nurse’s contribution and builds on her framing of the issue. She reassures Frankie’s parents that the goal is to have the treatment team provide support for their decision making while recognizing the parents’ ultimate authority. Then she invites the ICU social worker to join the discussion.

Mr. Chen: Yes. We’ve talked in the ICU. I’m the social worker for the ICU. I see many situations like this, and I talked to the Abruzzis. We talked at length about Frankie. From their point of view, they have a lot of feelings, obviously, about what’s gone on to date. The sense that I got from talking to them is how overwhelming the situation is with their son and how unexpected all of these things are. He went into the ICU and now one of the things that hasn’t been mentioned, but I think should be, is that he is now on a breathing machine too and he’s not even conscious. He got dialysis, and Mr. and Mrs. Abruzzi came into the ICU and they were really shocked to see all of this. I can understand that. So we talked a lot about their feelings and their dismay and their anguish and their sense of hopelessness because of all these things that are going on. It didn’t seem like it would be this bad initially. They shared with me that they really wonder if Frankie is ever going to get better, and that maybe it’s time to say, “Look, there’s nothing more that we can do,” and just let Frankie go in peace. I heard their saying that, and I can sympathize with that feeling. I can really see how under the circumstances they could really feel that way. So I’ve met with them frequently. They are going through a very difficult time and are confused about what to do. I think that’s very understandable.

The social worker adds more to the picture of what Mr. and Mrs. Abruzzi are going through. In a sense he speaks for them, saying things about what they are feeling


that they might find difficult to say in a group. Although mediators encourage par-ties to speak for themselves, there are times when parties are unable or reluctant to do so and when having an advocate or surrogate speak for them is essential to having the process work. Note that important information does not always come from the most respected source. Here the social worker brought out an important medical fact—that the pa-tient was on a ventilator—that was not mentioned by either the doctors or the nurse.

Bioethics mediator: I wanted to make one more comment. [Turning to the risk manager] Ms. Henry, I’m not exactly sure why you’re here, but let me just make one comment based on what Mr. Chen said. In my role in this hospital over the last twenty-five years I’ve observed that hospitals are very good at making decisions to go ahead with treatment. They are not as good at making decisions to stop. One of the things that happened in bioethics discussions over the past years—the past decade really—is the sense that the perspective that maybe it’s time to stop has to be of equal importance in these discussions. We’re here to care for the whole patient, and if the patient isn’t going to make it, it’s our obligation to recognize that and support a process of dying. So we’re trying to figure out in the first instance whether we are at that point. So let me just ask Ms. Henry why she’s here and then let’s sum up where we are. Then I think it’s time to ask Dr. Schwartz to give us a summary of where you think we are and then begin to open the discussion of what our options are and how you might arrange those options. Does that make sense?

The mediator is doing several things here. She realizes she needs to acknowledge the presence of the risk manager and allow her to speak. But before doing so, she draws on her own expertise and experience, noting that it is harder to stop treat-ment than to go on treating and stating an ethical norm: the obligation is to care for the whole patient and support the process of dying if that is what is called for. This is a rich and sophisticated move by the mediator. With this statement she does three things at once: she reminds all participants of the ethical norm; in a nonconfrontational manner, she provides reality testing for the risk manager; and she reminds the risk manager that the mediator has been around long enough to know the games that get played in the hospital. The mediator’s statement provides a helpful frame for the risk manager’s comments and also a powerful hint about what kind of comment will be helpful. The way the mediator’s question to the risk manager is phrased, however, high-lights a potentially inappropriate exchange. In many situations, a mediator may disagree with the stance of one of the parties. Risk managers are concerned above all with the hospital’s liability, not necessarily with what is best for a particular pa-tient. Nonetheless, it would have been inappropriate for this mediator to address the risk manager in an openly hostile way. The mediator’s comments suggest she feels that what she has heard so far points to a DNR order. From information she gathered before the mediation, she had a


working hypothesis that continued treatment would be an extraordinary burden on Frankie and that the parents wanted a DNR but had been talked out of it by the oncologist. Rather than stating her view of the situation and then trying to sell the solution, she works with all the participants to help them reach a solution on their own. At the end of this statement, the mediator gives a roadmap for the next part of the discussion: hear from the risk manager; get a summary of the current status from Dr. Schwartz; then discuss options and how those options might work. The roadmap gives all the participants time to think about what will happen next. Also, by asking Dr. Schwartz to speak about the current situation, she is giving him rather than Dr. Heinstein control of the next part of the discussion. This is a vivid example of the type of choices mediators make throughout a mediation. Any time a mediator steps in to summarize or clarify, he or she makes choices about to whom to direct the next question. The mediator here does not limit choices by saying the group will discuss the DNR order but instead invites a broader discussion of possible solutions, saying they will discuss options. In addition she coaches the participants on how to make the discussion of options productive when she suggests talking about what has to happen to make the options occur (how to “arrange” the options). This transcript does not reflect the way the mediator speaks or uses body lan-guage. By tone of voice she cultivates an air of uncertainty—not about what she is doing but about the situation being discussed. For example, her voice goes up at the end of sentences so that she does not seem to be lecturing. She creates a feeling of “Listen, I’m struggling with this just as much as you are.” While she is clearly in control of this mediation, she does not impose her choices on the participants. She uses phrases such as “Does that make sense?” or “Is that OK?” She also uses eye contact to check with the family during the fact-gathering phase. The techniques she uses are designed to bring all the participants along with her on the journey toward collaborative decision making. Mediators and conflict resolvers need to be the most tentative when they are making their most powerful moves. Being tentative keeps the mediator from com-ing across as the heavy; it gives participants choices; and it lets them know that they do not have to follow the mediator’s lead. The mediator in this case has kept the discussion focused on the medical situa-tion, not on what should happen for Frankie. By spending so much time clarifying the medical facts she is empowering the parents, the ultimate decision makers, by providing them with information, by assuring them that they will have control over the ultimate decision, and by assuring them that the medical team—or at least most of the team members—will support them as they make a wrenching decision. Also, by using lay language in many of her summaries, she enhances the likelihood that the parents will understand what the treatment team is saying. Similarly, by stating the ethical norms, the mediator is leveling the playing field between the family members, who are wrestling with these issues for the first time, and the members of the treatment team, who have dealt with such situations be-fore. Certainly there are limits to leveling the field, since the family does not have


the experience to interpret the medical facts. But providing them with information about medical facts and governing standards can help the family members feel well enough informed to be more comfortable making the hard decision.

Bioethics mediator: Dr. Schwartz, I’m going to come back to you in a minute to give us a summary, and if you can bear with us one more moment, Mr. and Mrs. Abruzzi, I know that Ms. Henry sometimes has some very useful perspectives to add.

Ms. Henry: [To the parents] We haven’t met before, and the mediator asked initially why I was here. The risk manager’s job is to make sure that decisions that are made are in keeping with hospital policy and with state law. Most of the time there is no problem, but sometimes in difficult situations there can be. In a situation like this where we’re talking about possibly limiting the right to treatment, it’s helpful sometimes for me to know what’s going on and for me to be able to help you to know what the requirements are.

Bioethics mediator: Ms. Henry, just a point. Thank you for being here. You and I have worked together for a long time, and I think it’s helpful to have the administration, which Ms. Henry represents, as part of the discussion. And, Ms. Henry, you know that I respect those issues a lot, but again, can we put them aside for a minute? But let me make my perspective on this case clear. Mr. and Mrs. Abruzzi are the family of the patient and we’re going to look in a bit at what the patient would want and what they would want, but it’s very clear to me that they have the legal right to make this decision and the moral right to make it. I understand—and thank you for being here because it will be helpful for you to hear their perspective—but I don’t think there’s any question in this case. As Frankie’s parents, they really do have the right to make the decision.

The mediator validates the risk manager’s contribution but goes on to state, in very strong terms, a position about who has the legal and ethical right to make decisions in this case. In doing so she is fulfilling an institutional responsibility; she is being highly evaluative on this point. Given the behavior of the risk manager thus far in the mediation, the media-tor’s laying down the law about who will be the decision makers seems too strong. No doubt the mediator and the risk manager have a history, which moves the mediator to, in effect, make a preemptive strike. Doing so may keep the risk man-ager in line, but it may also make it hard for her to become part of the problem-solving team and it creates the risk that she will not buy into whatever agreement is reached. In addition, the highly evaluative intervention may send a message to the other participants that undermines their understanding of the mediator’s role as someone who is there to facilitate a resolution. Such an evaluative intervention suggests that the mediator is perfectly prepared to be a judge, and this suggestion may undermine the trust that she has been establishing with the other participants.


The mediator’s strong assertion to the risk manager may reflect the fact that in New York State, the site of this mediation, case law at the time of the mediation would have limited decisions to withdraw or withhold care from a decisionally incapacitated patient to those instances in which the previously capable patient had left explicit instructions, by clear and convincing evidence. But there was an exception if physicians said that the care was not medically appropriate In many hospitals it is common to have the risk manager participate in bio-ethics mediations. The risk manager’s presence here adds a potential legal dimen-sion to the discussion. The mediator must keep the discussion focused on the need for decision making and not let it turn into a debate about legal principles.

Ms. Henry: Well, we need to talk a little bit about limiting life-sustaining treatment in the absence of knowing what the patient would want.

Bioethics mediator: If we need to. But we may not in this case. So let’s go on to Dr. Schwartz. Sum up for us how you would characterize medically what’s happening now.

Rather than getting into a battle with the risk manager about the legal issues, the mediator acknowledges her point but defers discussion of it and returns to Dr. Schwartz for his summary. Here again the mediator’s choice to defer an issue that may derail discussion keeps the mediation on track.

Dr. Schwartz: Well, I think Frankie has multiple organs involved in his disease. He’s currently on a respirator. He has many conditions in and of themselves that could be treated, and if he had them alone, there would be the possibility of successful treatment. Although none of us can really predict what the outcome of serious illness is, in cases like Frankie’s, I think it would be very unusual if he were to be able to leave the hospital.

Bioethics mediator: So if I hear you correctly, you think that Frankie, given all of the problems with the different parts of his body and different organ systems—would it be too much to say that you think he may be in the process of dying?

The mediator summarizes in simpler language and uses the word dying rather than the euphemisms used by the doctor. Doing so accomplishes two things. First, her summary puts the reality of Frankie’s situation clearly on the table. Second, it lets the mediator test whether Dr. Schwartz can accept the characterization that this patient is in the process of dying, a strong characterization that even some doctors who would permit the DNR order would not be willing to accept. This mediator used the most extreme characterization of Frankie’s condition because she felt that whether Dr. Schwartz agreed with it would, to a large extent, determine the direc-tion of the rest of the discussion.

Dr. Schwartz: No. I think that’s a fair statement.Bioethics mediator: OK. I think we really need now to begin to grapple


with what we’re going to do. We’ve heard two very different things. We have two views here—and in both cases, I think, Dr. Schwartz and Dr. Heinstein, you both agree the probabilities are not great, but we’ve heard Dr. Heinstein say, “We can treat the leukemia,” and we’ve heard Dr. Schwartz say, “Even if we treat the leukemia, it may be that he’s just overwhelmed by all of the medical things that are happening.” So you, Dr. Schwartz, think it’s OK to stop and you [Dr. Heinstein] think you shouldn’t. It’s OK to keep on going. Mr. and Mrs. Abruzzi, which of those interpretations seems to make more sense to you? How have you experienced his care here and how are you thinking about what’s happening?

As the mediator turns the discussion to problem solving, she is clear and direct: the doctors agree that Frankie’s chances are not very good. Their views differ about what should be the next steps in Frankie’s treatment. After her summary, the mediator turns to the parents. She asks multiple ques-tions (“Which of those interpretations seems to make more sense to you? How have you experienced his care here and how are you thinking about what’s happen-ing?”). In general, asking multiple questions can be problematic, but here, where the parents have been waiting for the opportunity to speak and may be uncertain about what they want to say, using multiple questions invites them to choose from a range of topics, starting where they are most comfortable, while still providing some guidance about the structure of the discussion. These parents are being asked to make difficult decisions. They know that the doctors disagree, and therefore they might fear that they are being asked to choose between the two doctors, both of whose care is important for their son. While the mediator does not hide the differences, she first emphasizes the common ground: the doctors agree on the overall medical picture. (She actually catches herself start-ing with their differences: “We’ve heard two very different things. We have two views here . . .” Then she realizes that it would be better to point out the common ground and goes on, “and in both cases, I think, Dr. Schwartz and Dr. Heinstein, you both agree the probabilities are not great” before being specific about their dif-fering views concerning treatment.) This way of summarizing helps the parents see that even though the doctors have strong feelings about their differences, they are both committed to Frankie and are really not very far apart. A clearer summary that stressed the doctors’ agree-ment about the general prognosis and made clear that, in addition to being com-mitted to Frankie, each doctor wants what he thinks is best for Frankie might have made the parents’ decision-making task easier.

Mrs. Abruzzi: Well, I just see him being more and more overwhelmed. Every time I come in, there are more tubes in him. He’s not at all responsive. I just don’t want him in pain anymore.

Bioethics mediator: Well, let me assure you, just on that issue, that we take the treatment of pain as an ethical issue, not just as a medical issue. There


are studies now that show that 55 percent of the patients who die, die in pain. On our team we think that is ethically unacceptable. And so I think we can get agreement from Dr. Schwartz and the ICU nurses that he will not be in any pain, that he will have a level of sedation and analgesia that will keep him comfortable. Do you have any problems with that?

The mediator responds to the mother’s concern about pain with direct informa-tion, which both reassures the parents and takes that issue off the table. After she makes her statement about pain treatment, the mediator checks with the parents to see whether they have any additional concern about pain management.

Mr. Abruzzi: No.Bioethics mediator: All right. So let’s put that one aside. We promise you

that he will not suffer and be in pain. That’s a medical issue, and a nursing issue.

Mrs. Abruzzi: It’s just hard because he’s gone through so much. He’s a real fighter. There’s absolutely no question about it. It’s hard because now when we come in we see him unconscious with all these tubes. It’s just very distressing.

Bioethics mediator: Tell us a little bit about Frankie. You say he’s a fighter. It’s real important for this discussion not just because he’s your son and you love him, but I’m going to suggest to you that as we move on to figure out together what to do, what he would want is very important. So who he is and what he wants is really a critical next piece of the discussion, so tell us something about him.

The mediator does some active listening, reflecting not only what Mrs. Abruzzi has said about Frankie being a fighter but also her feelings, her love for her son. She is inviting the parents to introduce the whole Frankie, not just Frankie the patient, to the mediator and to the other participants. She also explains that knowing what Frankie would want is important to the decision making and to them. Regardless of whether the mediation involves just the medical team or the team and the family, it is important that the mediator provide an opportunity for the pa-tient to be introduced to her. The introduction can come from the family or from the family and members of the treatment team. Making sure the absent patient is introduced has several values: it reminds everyone of why they are there; it assures family members of the medical team’s concern; it may provide important informa-tion about what this patient would want; it may help the family members clarify their thinking and help them separate their own emotional reactions from deci-sions about what the patient would want; and it humanizes the decision-making process. When the mediator turned to the parents, she made a critical change in the direction of the discussion. She shifted from objectively gathering medical infor-mation to considering the parents’ concerns and how Frankie might approach the difficult decision.


Mr. Abruzzi: Well, he had a rough life. He has HIV and a problem with his heart and then the cancer. For a lot of people that would just mean depression, that would just mean a sense that your life is over. He’s never been like that. These have been really tough obstacles for him, but he’s gone on and tried to live and enjoy life. He’s the type of person that sees the bright side in everything. He’s a real joy, and he’s a very hopeful person. Obstacles have never slowed him down. It’s been very hard to see him unconscious here because we don’t see that side of him. It’s almost like when he’s unconscious, he’s not here anymore. Part of me says, If he were just awake now he’d be saying, “I’ll get through this, Dad. Don’t worry about it.” He’s just strong that way. Seeing him now is just like he’s not there. He’s a real fighter.

Mrs. Abruzzi: I’m sorry. Could I share my perspective of Frankie as a person?Bioethics mediator: Sure. I just wanted to understand something from Mr.

Abruzzi and then that would be very helpful. Mr. Abruzzi, it sounds to me like you’re saying that if you ran a summer camp, you would want Frankie in your cabin. He’s a really good, optimistic guy. As his illness went on, did he keep that optimism? So he wanted to have his kidney removed because he thought that was the next step, and he agreed to start dialysis. Let me rephrase the question. When his other kidney began to malfunction and he knew this was a whole new ballgame, he was still making decisions about his care, and he wanted to go ahead and get the machine that would supplant his kidney, the dialysis machine. He wanted to do that?

The bioethics mediator continues talking to Mr. Abruzzi even though Mrs. Abruzzi has asked for an opportunity to speak about Frankie. Although what the mediator wanted to ask was valuable, she could have waited and allowed Mrs. Abruzzi into the discussion. The language used by the mediator as she summarizes what she has heard from the parents about Frankie (“If you ran a summer camp,” “He’s a really good, opti-mistic guy”) shows the parents that she has developed an appreciation for Frankie the person and sees him as more than a patient.

Mr. Abruzzi: Yes.Bioethics mediator: For me, that’s really important, because one of the things

when a patient can’t make a decision, like Frankie clearly can’t, we try to figure out with you what he would want. That’s our first step. What would he want? Has he told us anything? Has he said anything specific, or has his behavior indicated anything? So that’s really important. Dr. Heinstein, is there something you wanted to say about what Frankie would want?

Here the mediator reiterates the guiding principle for the way decisions are made for unconscious patients: the patient’s own wishes are important and must be taken seriously. The goal is to do what the patient would want to do, and if that cannot


be determined, then the discussion becomes what is best for the patient. Setting out this guideline is an example of the bioethics mediator’s norm-establishing role. But note that the mother has still not had the opportunity, which she requested, to speak about Frankie.

Dr. Heinstein: Just two things. It was months ago when I made the diagnosis of leukemia. At that time, he did not have a do-not-resuscitate order. He did know he had the diagnosis of both HIV and the leukemia.

Bioethics mediator: He did know?Dr. Heinstein: Of course he did. At the point at which he had the renal

failure and had to have the nephrectomy, he wanted everything done. So the family and all of us thought that dialysis would be a good way to go, because Frankie was such a fighter. I totally agree with that. My only problem right now is that of the options we have—the do not resuscitate, the dialysis, and the treatment for leukemia—we don’t have a chance to treat any of those, and I think Frankie would want us to try something.

Bioethics mediator: That was very helpful. Let me tell you why I found that helpful, and tell me if you agree. Dr. Heinstein just identified three choices we have to make. One is whether to continue dialysis, two is whether to have a DNR order, and three is whether to treat the leukemia. OK. Let’s say that those are the three choices we now have to make because that’s helpful to me because it tells us where we have to go. I think that the piece about what Frankie would want is very helpful. So Dr. Heinstein is saying that as long as he could make decisions by himself, he went ahead. Patients, if they are lucky, have a loving family to make decisions. So when you were all making that decision together, which I assume you did, he wanted to go ahead, whatever the chances. So he wanted to go ahead with the nephrectomy when he had his kidney removed, and he wanted to go ahead with the treatment of his leukemia. And you supported that with him.

Mr. Abruzzi and Mrs. Abruzzi: Absolutely.Bioethics mediator: So my question to you now would be, do you think he

would change his mind now and why, or maybe, Mr. Abruzzi, if there is a chance, as Dr. Heinstein says, that maybe the leukemia will get better and maybe he’ll get over this crisis—which Dr. Schwartz is not sure of. Part of the problem in medicine is we don’t know what’s going to happen. We can’t give you promises that if you take route A, this will be fine. We can’t tell you that. So there’s a lot of uncertainty, but I want to know whether you think Frankie would want to go ahead now with the leukemia treatment, because I think that is the key issue. If we go ahead with the leukemia treatment, then at least for the moment, it doesn’t make sense to have the DNR. [To Dr. Heinstein] In other words, if we’re going to go ahead with the leukemia treatment, the DNR doesn’t make sense. Is that your position?


The mediator asks the parents to consider whether, given what has happened, Frankie would change his mind about wanting further leukemia treatment and acknowledges how difficult it is to make decisions under conditions of uncertainty. She then gives them a moment to sit with the question before asking for a re-sponse. In the meantime she clarifies the choice that needs to be made with a ques-tion to Dr. Heinstein.

Dr. Heinstein: More accurately, I think we should at least do the treatment whether we have the DNR or not. We should at least do the treatment.

Bioethics mediator: So you think you can separate those two?Dr. Heinstein: I can separate them, although my preference for Frankie and

what I think is the better position is no do-not-resuscitate order, given the fact that everything that’s happened to him is reversible.

The mediator’s clarifying question narrows the decision that needs to be made. The choice is no longer between treating the leukemia and signing a DNR order. Dr. Heinstein acknowledges that it is possible to do both, though he still opposes the DNR.

Bioethics mediator: So you would agree, too, that there are three decisions, and they are separate. One is whether to go ahead with his dialysis, which isn’t an issue now because, as I understand it, he’s too sick. But, if we went ahead with the leukemia treatment—that’s decision one—it might put him in a position where we could institute dialysis. That would be decision two, and then the DNR is a separate decision. Dr. Schwartz, does it make sense to you to look at those three decisions separately?

Dr. Schwartz: Well, yes. I’m not uncomfortable doing that. I think that they can be separated.

Once again the mediator slows the process down, breaks the decisions into parts, and gets both doctors to agree on the way she characterizes what needs to be de-cided. Having done this, she turns to the mother, who had earlier asked for an opportunity to be heard.

Bioethics mediator: OK. Good. So now let’s come back to Frankie. What do you think he wants? What would he want?

Mrs. Abruzzi: I’m not sure what he would want, but he’s a fighter. His father’s right about that. I wouldn’t want him to be in any pain.

Bioethics mediator: But remember, we will not let him be in any pain. Mrs. Abruzzi: You’re sure about that?Bioethics mediator: Absolutely. Absolutely. Has he ever talked about other

people who were in a similar situation, either people he knew, people in the family who were critically ill. Has he ever talked about their treatment?

Mrs. Abruzzi: No.Bioethics mediator: So let’s again put that aside for now.


Mrs. Abruzzi: So there’s no pain, even when he’s unconscious with the tubes and everything. It’s so hard. When somebody can talk, they can tell you. You can see it on their face. You can see it in their reaction. When they just have tubes in them and they are unconscious, it’s hard.

What is happening here happens often in mediations. Although the discussion has moved ahead, options have been generated, and the time has come to begin mak-ing decisions, Mrs. Abruzzi has concerns about Frankie’s pain, which she has raised twice before, that need to be explored and addressed before she can participate in the decision making.

Bioethics mediator: Nurse Aquino, could you talk a little bit to us about how nurses figure out when a patient is in pain? I agree with you. That for me is the most important ethical issue. So I think it would be helpful if the family understood how the nursing team reacts to pain.

Despite assurances from the mediator, Mrs. Abruzzi continues to be anxious about pain management. Even though for purposes of what needs to happen during the mediation, this is not an issue, the mother’s concern is getting in the way of the mediator’s efforts to focus on the three decisions she has identified. The mediator recognizes the need to deal with Mrs. Abruzzi’s concerns before trying to move on and asks for information from an expert, the ICU nurse. In a situation like this, when a party keeps raising a concern that the mediator thinks has been addressed, it is often a good idea to invite the party to talk more about it. Here the mediator might have acknowledged the mother’s concern by saying something like, “Mrs. Abruzzi, you’ve mentioned your worry that Frankie is in pain. I have the sense that even though we’ve promised that the nurses are sensitive to this issue and will do what is needed to keep Frankie pain free, you still have concerns about it. Maybe we haven’t been clear about what is being done for Frankie. In a minute I’m going to ask Ms. Aquino to explain more about how his pain is being managed, but first, could you tell us a little more about what is wor-rying you?” Giving Mrs. Abruzzi the opportunity to talk about her concern about Frankie’s pain might have helped her clarify her own fears and would also have told Nurse Aquino what information would be most helpful to Mrs. Abruzzi.

Nurse Aquino: Well, I think we try to do a couple of things. First, I think just what you’re saying. When people have tubes, the assumption would be that they are experiencing pain, just like anybody else. So we start from that perspective. We want to make sure that the pain is treated. We treat the pain, but also every time we turn Frankie, every time we try—we have to sometimes take out the fluid through his nose and suction him, we look to see if he flinches. We look to see if he grimaces in any way. We look to see if we have any evidence at all that he’s in pain. And we’ve gotten pretty good at knowing that. You’re right. It’s not like having the person tell us directly. Obviously, it’s not the same, but we’re experienced. We’re here


all the time, and we’re pretty good at trying to judge. Working with Dr. Schwartz and the other doctors, this is an ICU where if we’re in doubt, we treat the pain. We don’t say, “Well these people aren’t experiencing pain because they are unconscious.” We are really up on all the latest stuff, and we really try to treat the pain. The doctors and nurses are in agreement about that.

Dr. Schwartz: I just wanted to add that what you are feeling is pain, and it’s a different kind of pain than you are worried about Frankie feeling. So when you see him with all these tubes, you have to separate your pain as parents from his physical pain as a patient.

Nurse Aquino: But that’s what I was going to say. Sometimes parents identify so much with their children that their own suffering—they think that because they are suffering, their children are suffering too. And that’s not the case here.

Bioethics mediator: I think you can be comfortable that despite the terrible level of anguish and pain that you two have, he will not experience physical pain. So are you comfortable on that point?

Both nurse and doctor validate the parents’ feelings by recognizing their emotional pain while giving additional information about the treatment of Frankie’s pain. The mediator summarizes that Frankie is not in physical pain, adds her acknowledgment of the parents’ suffering, and checks to see whether they are ready to move on.

Mrs. Abruzzi: Yes.Mr. Abruzzi: That was very helpful.Bioethics mediator: OK. That’s a very important point. So now let’s come

back, because I think there is a very important issue here. Let me state to you what I know here. Frankie’s a fighter. Every time he reached a juncture where he could make a decision to go ahead and be treated, he did. That’s a really important thing. If we want to try to make the decision for him now that he would make, that’s very powerful evidence. Dr. Heinstein is saying that’s his sense of Frankie also. So let me try to break up these three decisions in the order in which they seem to make sense. One is to go ahead in treating the leukemia. But let me tell you what I hear. I hear from the two of you that if Frankie could make the decision, he might make the decision to go ahead. But that’s pretty important. I would argue to you now that if that’s the decision that he would make, maybe that’s the decision we should make.

The mediator demonstrates a key mediator skill—patience. She takes time to re-iterate what she has heard about Frankie’s being a fighter; she states the governing principle for making this decision—that it be what he would choose for himself if he were able—and only then does she present the hypothesis (“I would argue . . .”) that if Frankie were in a condition to do so, he would choose treatment for the leukemia. Here again the written transcript does not reflect the way the mediator’s


tone of voice softens the word argue and makes it clear she is only putting forward a hypothesis.

Mrs. Abruzzi: Oh, sure. We’re OK with that.Bioethics mediator: OK. So we’re moving along. Dr. Heinstein, Dr.

Schwartz, are you comfortable with that?

The parents agree with the hypothesis. The mediator characterizes what is happen-ing as progress, then checks with the two doctors.

Dr. Schwartz: I am. I think that I am here to try to represent Frankie’s needs. I think we all are, and it’s important that we get at them.

Bioethics mediator: OK. So I think we’re moving. As I said to you, my goal doesn’t always work. I’ve had some spectacular failures, but my role is always to try to get everyone to be comfortable with the decision because then nobody feels the burden exclusively. So let’s say that we’re going to go ahead with treating the leukemia. Dr. Heinstein, let me argue with you a little bit. The parents would like the leukemia treated, and my guess is that if you asked them, they would probably do it. But it’s pretty problematic. Even you would agree that this is a very sick patient. Treating the leukemia may not work. The patient is already intubated, so if there is a pulmonary event, if something happens in his lungs, he is not really going to go into arrest. So the question is, if under the assault of everything that’s happening in his body, if his heart stops, what should we do? I think that you might agree that if that happens and there is yet one more layer, that maybe it’s appropriate to recognize that we and Frankie have lost this battle. I really ask you to reconsider. The parents are saying they would like you to treat the leukemia. Let’s give it one more chance, but if he should arrest, let’s be ready to accept that judgment. Could you live with that?

The mediator tries some reality testing (she calls it arguing) with Dr. Heinstein. As she does so, she draws on her own medical knowledge to try to focus on the reali-ties of the case. At one point the mediator uses a medical term, “pulmonary,” but catches her-self and switches to lay language—“if something happens in his lungs”—which makes it easier for the parents to follow the discussion.

Dr. Heinstein: I would accept it [the DNR] then, but I’m not entirely comfortable with that, again given my tradition that we should at least try to restart his heart.

Bioethics mediator: But your tradition is if there is any chance at all, you take it.


Maybe the parents and Frankie come from a tradition that is more flexible, and in a situation of so much uncertainty and anguish, it would not be unreasonable for them to make the decision that a cardiac arrest really was the end of this—the end of the life of their child. The mediator presses Dr. Heinstein. Two things seem to be going on in these exchanges. First, she is making arguments to test his position. Second, she is setting things up to give the parents permission to choose to stop treatment if that is what they want.

Mr. Abruzzi: If my wife and I could just talk to each other for a moment. I appreciate you all being here because this has been very helpful. I was just wondering if we could just talk for a moment.

Bioethics mediator: Absolutely. Would you like some coffee? There is a coffee machine at the nurses’ station. It makes the worst coffee in history, but I’m sure they’d be willing to share it with you. Do you want to go and get a cup of coffee and talk, and then you can come back and we’ll talk some more.

After the parents leave the room, the battle becomes much more confrontational. During the debriefing of this mediation, the mediator noted that when mem-bers of a treatment team disagree about the appropriate course of treatment, she tries to have a preliminary meeting without the patient or family. In a staff-only meeting, the conversation can be more direct. In this case Dr. Schwartz might have said to Dr. Heinstein: “Come on. You’ve got to be kidding me. This guy is dying. One more day and putting him back on dialysis is really not going to help. Your talking to the family about the fact that this can happen is only confusing them, and you know and I know that this patient is dying. Let’s deal with this patient as a dying patient.” It can be useful for the medical staff to have this kind of di-rect airing of the conflict, something that would not be helpful for the family to hear. Once the parents left the room, the mediator continued with a more direct approach.

Bioethics mediator: Hey, what’s bugging you about this case? I think we’re moving nicely. The family is going to agree with treating the leukemia. Dr. Heinstein is going to agree.

Dr. Schwartz: We don’t know why they wanted it.Bioethics mediator: They want it because their son is dying.Dr. Schwartz: You haven’t heard from them why they want it. Bioethics mediator: You said you could live with treating the cancer.Dr. Schwartz: [To Dr. Heinstein] Well, I heard you say that you would only

accept the DNR order if you couldn’t do anything at all to help the patient.

Dr. Heinstein: [To Dr. Schwartz] So it sounds like you’re backing away from that.


Dr. Schwartz: [To Dr. Heinstein] What are you trying to save? You know, if you resuscitate this guy, the chances of him regaining consciousness are .01 percent. He has a million other problems that are going on. This guy is not getting out of the hospital if he has another arrest. You’re treating his bone marrow. You’re not treating him.

Bioethics mediator: I think, Dr. Heinstein, that in the business of compromising on medical decisions and where we’re going and what’s happening, you’ve won this one. Give them a break. You’ve won it. You’re going to go ahead. They’re very uncertain, but they’re with you. Give them a break on the DNR. We haven’t come to that yet. [The parents return.]

Mrs. Abruzzi: We were just listening to you before we went out to talk. The pain has really been my only concern. That’s why I signed the DNR order. I didn’t want him to be in pain. My husband has always not wanted to do that, but I have one more question about the DNR. If you do something and you resuscitate him, will he be in more pain? Will he hurt? Are you going to do things to him that will make things worse off?

Bioethics mediator: If his heart stops and we resuscitate him, or if we try—it’s not clear that that will work, but if we try, would that add to his pain? Let’s assume that he stays at the baseline that he is now. Could that cause additional pain?

Dr. Schwartz: It’s possible, but again, not unmanageably. It could prolong it though. More than additional pain, it could take us longer and longer in an area of greater uncertainty.

Mrs. Abruzzi: But the act of resuscitating him wouldn’t make him hurt a lot more?

Dr. Heinstein: He is unconscious already. If his heart stops and the blood ceases to flow to his brain, he is not going to feel any more pain. Yes, the resuscitation might not work.

Mrs. Abruzzi: The only thing we are worried about is his pain. If you’re telling me that he’s not going to be in more pain, then we’re prepared to tear the DNR up for now.

Bioethics mediator: Dr. Heinstein, Dr. Schwartz, are we agreed that even if we try to resuscitate the patient, given his present medical condition, giving the alertness of the medical and nursing staff, that he will not experience more pain?

Dr. Schwartz: I don’t think we can say it for sure. I think the thing is, after he’s resuscitated, if he lives, we may be back to where we were, but we may be into a situation we’ve got other medical options that we have to try.

Bioethics mediator: But why would that increase his pain?Dr. Schwartz: Because every time you have a new thing going on, it makes

it harder to control the pain. That doesn’t mean we wouldn’t make every effort, and in most instances we’re successful.

Bioethics mediator: This is hard for his parents to hear.Mr. Abruzzi: But isn’t he unconscious? Isn’t that what Dr. Heinstein said?


Dr. Schwartz: But there are levels of pain that can be experienced even when the patient is unconscious.

Bioethics mediator: So, deep pain. Can you leave an order for morphine that would be sufficient to control that eventuality?

Dr. Schwartz: Yes.Bioethics mediator: OK. If your single concern is the pain issue, then Dr.

Schwartz says he can leave an order that is sufficiently strong for pain medication. We can’t promise you 100 percent in a package wrapped in gold. Medicine isn’t that way. But we can promise you our best efforts. What I hear from you is that if we can do that, then you would like to go ahead with the leukemia treatment for now. Remember, the decision we reached today we can all get back together and change tomorrow. But for today, where we are now, you would like Dr. Heinstein to continue with treating the leukemia, and you would like for the moment to suspend the DNR. Is that comfortable for you now?

Mrs. Abruzzi: Yes.Mr. Abruzzi: Yes.Bioethics mediator: Are we all in agreement? OK. I think we can end for

now, although you have to understand, as we all do, that things change all the time, and we’re available for you if you’d like to come back into the conversation. My guess is that everyone is on board; that we’re going to try this. If this doesn’t work, if the leukemia doesn’t get better, then I think Dr. Heinstein and you will be more comfortable knowing everything was tried, and then it will be a different discussion. But for now, are we all in agreement? OK. Thank you. Thank you very much for coming. I know this was a very hard decision, but I think you were very courageous to face it, and we think you’re good advocates for your son.

Mrs. Abruzzi: Thank you.

In her last two comments the mediator summarizes what the participants have agreed on—controlling pain, treating the leukemia, and suspending the DNR—and reminds the parents and the treatment team that the decision can be revisited and revised depending on how Frankie responds. She also validates the contribu-tion of the parents to the decision-making process.

Further Discussion

The mediator entered this case with the working hypothesis that a DNR order was appropriate—a view that she still held at the end of the mediation. Because she was able to put her preconceptions aside, make sure that all the relevant facts were on the table, and listen to the participants, she avoided imposing her views and al-lowed the mediation process to lead to an outcome very different from the one she had anticipated. Some observers of this mediation were troubled by the decision to continue


treatment because they viewed this as a futility case. They thought that a DNR based on futility should have been written and that it was unethical to take up an ICU bed and continue to expose nurses to the risks of treating an HIV pa-tient. The mediator’s view was that these parents knew their son was dying but were not quite ready to face that fact. They needed to feel they had done every-thing they could for their son. Since the proposed treatment was not going to harm Frankie, the mediator did not see continued treatment as unethical. She anticipated that the resuscitation was not going to work but saw this treatment as being for the benefit of the parents, not the patient. She stated that when she is sure the patient is beyond pain, she sometimes thinks it is helpful to treat the family, because doing so lets them live more comfortably afterward with the consequences of the decision. Had any of the participants raised the futility issue, the mediator would have explored it. That no one on the treatment team saw the case as futile determined the direction of the discussion. When one of the doctors or nurses in a mediation says, “This resuscitation effort will be futile,” the mediator will argue that it is the team’s ethical obligation to write a futility order of DNR to avoid exposing staff unnecessarily to HIV infection. Other observers were concerned that the mediator did not ask the parents whether they understood what the process of resuscitation entails. When the parents returned to the room, they had decided on resuscitation. No one ex-plained how violent resuscitation can be, that it can result in broken ribs—information that might be important for the parents, especially given the mother’s concern about pain. The mediator explained that once the parents had made the decision, she did not go further with the discussion. She assumed that if this patient’s heart stopped, the staff would respond with a resuscitation attempt, and that no one was going to draw out this attempt over a long time. Her assumption was that if Frankie’s heart stopped, the staff would make an attempt at resuscitation, and they would be able to see pretty quickly whether it was successful; if it was not, they would stop.

Postscript

In January 1999, two years after this mediation, the mediator spoke with the oncologist in the case on which this role-play was based to get an update. The patient recovered enough to go on dialysis until he was able to leave the hospital without needing it. When asked, the patient made it clear that he would want everything done again if necessary. He was never told that his parents had initially signed a DNR order. At the time of the conversation between the mediator and the oncologist, the patient was still being treated for AIDS, and it was under good control. He was working and still receiving interferon for his chronic leukemia, which was also under good control.

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18

She Didn’t Mean It: A Role-Play Transcript

Parties

Pat Dee, patient’s daughter Tanner Dee, patient’s daughterM. Eberhart, patient advocate Dr. HendersonBioethics mediator

Background

Mrs. Dee, an eighty-seven-year-old, critically ill woman with multiple medical problems, is currently in the ICU. She is on a ventilator and her blood pressure is falling, even though she is on vasopressors to support her pressure, and her kidneys are failing. She has had one previous episode in which the staff felt it might need to attempt resuscitation, but the patient stabilized. Mrs. Dee remains in a tenuous condition. Mrs. Dee made a living will ten years ago, which she later reaffirmed, stating that if critically ill and unlikely to recover she did not want to receive dialysis, a ventilator, or artificial hydration or nutrition and that she did want to have a DNR order. She also stated that she never wanted to be a burden to her family. Her named health care proxy is her husband, who has since become severely de-mented. Mrs. Dee has been his primary caretaker at home. The Dees have two grown daughters, Pat, who lives at home, and Tanner, a successful professional with a family. A few days ago the renal consultant raised the issue of dialysis, and Pat signed the consent. Pat also opposes a DNR. Tanner is furious that the nephrologist went around her and obtained Pat’s consent for dialysis. She thinks her mother should be taken off the vent she never wanted, should not have dialysis, and should have a DNR order according to her clearly stated wishes.



Bioethics mediator: Good afternoon. Thank you so much for making the time today for all of us to meet together. I know that you all have busy days and this must have been difficult for you to make the time. So thank you. My name is Brenda Weaver. I’ve been asked to help out in this case. I’m what’s called a mediator. Often, I get asked to help when we are in situations when there are a lot of difficult decisions to be made. I help everyone involved talk through the issues and come to conclusions.

The mediator begins with stroking by thanking everyone for participating. (Never pass up an opportunity to stroke.) The mediator’s explanation of her role is rather limited. She does not explain that she works for the hospital or that, in this situa-tion, she will be functioning as a neutral and will not be making decisions but instead helping participants do so. It is also useful during the mediator’s opening statement to reinforce the goal of making good decisions for the patient. Here the mediator might have said: “Let me introduce myself. My name is Brenda Weaver and I direct the clinical ethics consultation service here at the hospital. I am paid by the hospital to help out when there are differences of opinion about what the plan of care should be for a patient or when difficult decisions need to be made. I try to help everyone involved understand each other and be comfortable with the decisions we reach. I also try and make the patient a part of the discussion, even though she really can’t be here, by asking questions about her and her wishes and values. I do this because what we want to do for a patient who cannot participate in a discussion is to reach the outcome that she would want if she could tell us. I then try to help you find a solution, a consensus, that is comfortable for all—like a mediator. I do know most of the staff at the hospital but I have not been involved in this case before.”

First, can we all introduce ourselves? [Introductions of Dr. Henderson, Pat and Tanner Dee, and the patient advocate, Ms. Ravi, omitted.]

Bioethics mediator: [To Pat and Tanner] And how are you related?Pat Dee: That’s my mom. That’s my mom, and I’ve been helping to take care

of her for a long time.Tanner Dee: My mother.Bioethics mediator: OK, thank you. So, I’ve learned a little bit about Mrs.

Dee’s medical situation, but I don’t know very much. So, if we could start off with Dr. Henderson, would you mind telling us from your viewpoint where we are?

Bioethics mediators have two choices about how to start the substantive discus-sion: either, as the mediator does here, by asking a physician to explain the medi-cal facts, or by asking the family to tell the mediator about the patient and about their concerns, in effect introducing the patient to the group. In most instances we recommend starting by asking the family members to introduce the patients: “Pat

She Didn’t Mean It: A Role-Play Transcript 255

and Tanner, is it all right with you if we use your first names? So let me ask at the outset: Tell me about your mom. I have seen her in the ICU and I have reviewed her medical record, and from both I have the impression that, at this moment, she looks and is very sick. However, I have no understanding of who she was, how she lived in the world, who she cared for and about. Tell me about your mother.” One of the reasons to begin with a question to the family about the patient is to level the playing field to give the family status in the discussion. The medical staffs are the experts in medicine, diagnosis, prognosis and medical possibilities and probabilities, but the family members are the experts on Mama. Beginning with the family gives them a place at the table that is meaningful. It would be helpful before the meeting to give Dr. Henderson a heads-up that the mediator will start with the family and then turn to him for an explanation of the medical facts. The mediator should not ask the family to explain what they think the medical facts are before hearing from the physician. Doing so runs several risks, including anchoring the family members to inaccurate views and prompting defensive reac-tions when the medical team corrects their presentation (see “Stage 4: Presenting and Refining the Medical Facts” in Chapter 4). The mediator says that she has “learned a little bit about Mrs. Dee’s medical situation.” It would promote trans-parency to have added how she obtained that information—from a quick review of the records or from conversation with the medical team.

Dr. Henderson: Sure. So, Mrs. Dee, your mom has multiple medical problems, congestive heart failure and diabetes chief among them, and we’ve been taking care of her over the years. Lately, with the decline in her health, she came into the ICU, she’s been on a ventilator, her blood pressure is falling, we’re trying to keep it maintained but we need medication to do that. So we’ve just about stabilized her, but our most recent issue is that her kidneys are also failing, and that has brought us to an important point in terms of how to move forward with her care, and there was a question raised whether dialysis was the appropriate next step, and I’m hoping that we can sort out whether that would really be consistent with Mrs. Dee’s wishes or not.

Bioethics mediator: OK.

The physician has given a clear statement of the medical facts that is fairly free of medical jargon and has avoided advocating for the course of treatment he recom-mends. Even so, the mediator needs to summarize what has been said for two reasons. First, summarizing gives the family members time to absorb and begin to accept the sad information about how sick their mother is, especially in a case where the mediator is aware that one of the children is having difficulty accepting the fact that her mother is dying. Summarizing also lets the mediator reframe hard-to-understand language or concepts in lay terms. So, even though we can assume that most people who have spent time in the hospital know what a ventilator is, the mediator might summarize by explaining: “And she is on a ventilator, that is, she needs a machine to help her breathe.” The mediator can follow the summary


with questions to clarify the medical condition, especially questions she thinks the family might be hesitant to ask.

Tanner Dee: My mom has a very clear advance directive, and she did not want any sort of extreme measures. She clearly said that she wanted to avoid dialysis and all other aggressive treatments. She doesn’t want to be a burden. She’s been caring for my sick father for years. She’s made herself perfectly clear. I don’t know why we’re having this discussion.

Pat Dee: I don’t think she meant what was on that piece of paper. That’s not who she is, that doesn’t make any sense, that’s not how she was, that’s not correct.

Bioethics mediator: Do we know when your mother made the advance directive?

As this mediation develops, we see the problems created when the mediator moves too quickly into the medical discussion. She needs first to ask the daughters to tell her about Mama. What was she like? What did she like to do? The goal of the me-diator is to set up the discussion so that it is as if the patient and her values are at the table. Getting the daughters to talk about their mom in neutral situations—go-ing to church, taking care of Dad, having the family for dinner—begins to develop a sketch of the person that is not constrained by the decisions that must be made. The mediator can slow down the discussion and shift the focus with a statement such as: “We will certainly talk about Mom’s wishes for her medical care; that is the reason we have all come together. But I would like to know a bit more about her as a person before we focus in on her as a patient.” In addition, the mediator asks a factual question rather than following up on what Pat and Tanner have said. Doing so moves the discussion away from their concerns. The mediator needs first to summarize what she has heard from Pat and Tanner and then to clarify what Pat meant by “that’s not how she was ” A possible mediator response might have been: “Pat and Tanner, thank you both for letting us know your views of what your mother would have wanted in this situation. I hear that you both want to honor your mother’s wishes, though you have different un-derstandings of what those would be. Tanner, you feel that she has been clear about not wanting treatment, and Pat, you are not so sure about that. Pat, could you tell us more about what you meant when you said, ‘That’s not how she was’?”

Tanner Dee: She made the living will right when my dad started getting sick. She actually updated the living will a couple of times since then, she’s kept it up-to-date, she’s made changes to it.

Bioethics mediator: How long ago was the last change?Tanner Dee: About four months ago.Bioethics mediator: OK.Pat Dee: I think that she was just stressed and confused, that’s not what she

meant, you know. She takes care of Dad, she’s a lively person, she would


have never wanted to give up, she wouldn’t want you to give up, that’s not what she would have wanted.

Here the mediator could have asked a clarifying question to probe for concerns underlying Pat’s position by saying: “That is interesting, Pat. Tell me more about your mom and her character. You said that she would not want to give up. Tell me why you think that. I promise all of you that we will get to the medical deci-sions—that is why we are here today—but I need to understand a bit more about the patient before we continue

Tanner Dee: What are you talking about? What’re you talking about? She has clearly written in her advance directive what she wants. How can you not respect her wishes? She took the time to state those wishes.

Bioethics mediator: OK.

The mediator might have acknowledged Tanner’s obvious frustration by saying: “I hear you, Tanner, and I know that this is difficult for you, but stick with us and we will ferret out all the relevant details.”

Dr. Henderson: I can actually attest to the fact that she spoke to specific issues of what care she would want when we talked about what dialysis was and what it meant. In the same way we spoke about what a ventilator was and what it meant. So in terms of her understanding what it was she was signing, I feel comfortable saying, as her doctor, that she knew what she wanted and knew what she was signing at the time.

This is a very important exchange, which the mediator needs to summarize to be sure she and the other participants hear what Dr. Henderson is saying. “Dr. Hen-derson, Let me see if I understand. You discussed the possibilities of dialysis and a ventilator with Mrs. Dee and she was clear that she would not want either?”

Pat Dee: She would not want to die, that was not her intention. She would want to be available for Dad and to be there for us.

Tanner Dee: Just because you don’t want to take care of Dad, where have you been? Is that what you’re worried about?

Bioethics mediator: OK, let’s slow down, let’s all slow down and try and regroup here. I want to make sure that I understand what everyone is saying. For Dr. Henderson here, it’s my understanding that you are telling us that Mrs. Dee is very sick, she’s requiring a lot of medical care right now, she’s intubated on a ventilator, her blood pressure had been very low and required additional medications to keep it up, and those things have stabilized it at this point, but her kidneys are now failing and there’s a question of where do we go from here.

Pat Dee: The kidney doctors said that the dialysis would help. So we should do what is going to help. That’s what he said, he made that clear.


Dr. Henderson: I would like to clarify that statement, whenever you feel it’s a good moment.

Bioethics mediator: OK, thank you. We’ll come to exactly what dialysis is good for and what it may not be good for at a later point. I’m just trying to actually figure out what’s been said right now, but we’ll certainly discuss that point. OK? It’s my understanding, Tanner, that you believe that your mother had filled out a living will that pretty much tells you what she wants done and what she doesn’t want done, and you want to be able to see that carried out and her wishes cared for and you think that following her wishes in the living will is what is best for her.

Tanner Dee: Yes, that’s correct.Bioethics mediator: And, Pat, it’s my understanding that you too are

concerned about your mother’s wishes and you want what’s best to happen for her, and you think that what is best for her is to provide aggressive medical care to try and make her better, because, in your words, “she is a fighter.”

Pat Dee: Yes.

The mediator recognizes the need to intervene, acknowledge what Pat, Tanner, and Dr. Henderson have been saying, lower the escalating tension, and remind Pat and Tanner of their common interest in respecting their mother’s wishes and in figuring out what is in her best interest. Here, where the patient is dying—even though that has not yet been specifically said—her best interest is to avoid suffering during the dying process. The mediator uses the summary of Mrs. Dee’s medical condition to give everyone some breathing space. The mediator also acknowledges part of what Tanner and Pat have said but ignores some important points. Pat’s comment, “She would not want to die, . . . she would want to be available for Dad and to be there for us,” also needs some acknowledgment. The mediator might have said: “And, Pat, this is hard because it feels to you as if following your mother’s wishes as she wrote them out is like saying that she was choosing death over being there for your family. Pat and Tanner, you have both mentioned your father and the need to think about how he will be cared for in the future. And as I said, we also need to answer your questions, Pat, about why the doctors have different views about whether dialysis would be useful.” This summary both acknowledges what has been said and begins to set an agenda for the rest of the discussion: what care arrangements the husband needs, and whether dialysis is appropriate.

Patient advocate: Excuse me, please, but I would like to join the discussion. I just want to say what’s important here. Actually, it’s not really what they want; it’s what the patient wants. If she has made up her mind about how she wants to take care of herself towards the end of life, we have to respect that, because her intentions were made clear when she signed. I think we are duty bound to respect that and to just follow it.

Bioethics mediator: OK. So I think we are all here to fulfill Mrs. Dee’s


wishes, although maybe there is not necessarily agreement on exactly what those wishes are. We can explore that more specifically. But before we do that, I don’t feel like I know Mrs. Dee. Tanner or Pat, would either of you like to take a moment to tell me more about your mother, the type of person she was?

The mediator diffuses the patient advocate’s dismissive and not very helpful state-ment by acknowledging both the common goal of honoring Mrs. Dee’s wishes and the different views about what her wishes are. Although family members’ introduction of a patient unable to participate is often best done at the beginning of the mediation, this is a good example of how mediation is a forgiving process in which an introduction later in the discussion is also valuable.

Pat: Well, Mom loved to be the center of attention. She loved doing a lot of things. She took care of Dad; she helped with everything; she was very dramatic—and I don’t think that she would want to give up. If she wanted to give up, she would have killed herself, she would have committed suicide, she would not want these fancy legal papers to be what decides how she’s going to be. She would want to be here for Dad. She would want to make sure that she can be available to him and that he could have contact with her and visit her. She would not want everyone to give up on her.

Bioethics mediator: Pat, have you ever talked with your mom about medical decisions?

Pat: I lived with my parents.Bioethics Mediator: But have you ever talked with your mom about medical

decisions? What she wanted?Pat: We talked every day, and she wanted to take care of things and she

wanted to be here for everyone.

The mediator asks a reality-testing question: has Pat discussed medical decisions with her mother? Pat avoids answering the question, and the mediator follows up. It is not unusual for a participant to try to duck hard questions as Pat did here rather than to acknowledge that their reading of the situation may be flawed. But, as here, it is likely that the reality-testing question helps the person to whom it is directed begin to reconsider their position.

Tanner: She protected you. She didn’t talk to you about any of her worries. You live in some fantasy world. You don’t have any idea of what’s going on.

Pat: You did not live with them, so I don’t think you have any idea.Bioethics mediator: OK, people have different relationships within a family,

and we learn things by living with people, and we learn things by talking with people, so I think we all have something to share and we can each continue conversation and respecting each other and trying to learn more


about Mrs. Dee, because that’s ultimately what we are here for is to fulfill Mrs. Dee’s wishes, and I think we can be cordial and work together at this. So, what I’m hearing from you, Pat, is that your mother was a very energetic woman who liked to be the center of attention and she did a lot for your family, she’s taken care of your father?

It was appropriate for the mediator to intervene and break up the unhelpful, esca-lating exchange between the siblings, but her tone was slightly scolding. It would have been more helpful to acknowledge their feelings as well as their differing per-spectives on what their mother was thinking about her illness and possible death. Also, mediators want to be careful not to overuse the word we. It seems appropriate to say, “We learn things by living with people, and we learn things by talking with people” but not “We all have something to share and we can each continue the conversation.” Some mediators might be even more direct about the anger and say: ”Well, I hear that you are both a bit angry and committed to a version of what Mrs. Dee would want. And it is not surprising that emotions are high, there is a lot at stake here. But I will try and be certain that everyone has a say and that we explore all options.”

Pat: Yes.Bioethics mediator: And that’s pretty important at this point in time?Pat: Yes.Bioethics mediator: Could I ask if your mother wasn’t by chance able to

come home, what would happen with your father?

The mediator has picked up on the fact that Pat’s fears about how care will be pro-vided to her father may be at the core of this dispute and begins asking about that issue.

Pat: Well, I think that even if she had to go to a nursing home or she had to go someplace else, that would be OK because then she could still be there for Dad. He could still visit her and they could still be together.

Bioethics mediator: So it’s mainly her presence that you’re concerned about, not necessarily that she . . .

Pat: She would still want to be with us.Bioethics mediator: OK. And, Tanner, what I’m hearing, I didn’t quite hear

how you saw your mother?

Even though the mediator starts to focus on care for the father, she realizes that Tanner needs the opportunity to add her introduction of her mother.

Tanner: I love my mom, I want what’s best for her, and I feel like I’ve been pitted into this corner and my job is to make sure that her wishes are respected, and I don’t want her to die, I love her, but she was very clear, she clearly stated in her living will that she didn’t want these extraordinary


measures, and it sounds like the doctor talked with her and she knew what she was signing and knew what all this meant, and how can we not respect that?

Bioethics mediator: Did you talk to your mother about the living will?Tanner: Yes. I was very aware of how she felt. I don’t know if I agree with her

or not, but it doesn’t matter, because it’s what her wish is.

Tanner has just said something important, distinguishing between her own feelings and desires and those of her mother, that it would help Pat to hear. Since disput-ing parties tend not to listen to each other, the mediator needed to improve the likelihood that Pat heard Tanner by summarizing what Tanner said before asking further questions.

Bioethics mediator: OK. To your knowledge did she have firsthand experiences with these decisions, with a family member that motivated these decisions?

Good probe by the mediator for the grounds for Mrs. Dee’s choice.

Dr. Henderson: I don’t know.Tanner: I think when Dad started getting more and more sick—he’s

demented and needs a lot of care at home—she felt she wanted to maintain her dignity and she didn’t want to be a burden on people.

Ms. Ravi: I think, if we look at everything she watched, she doesn’t want it to happen to her—

Pat: She wanted to be there for Dad.Ms. Ravi: We’re allowing it to happen to her now. She doesn’t want to be on a

ventilator, but she is. She doesn’t want to be a burden on anyone. We have to decide for her, not against her. We should not ignore her will because the siblings are trying to dilly-dally around the main issue. Are we working for her interest or for our own interest?

Bioethics mediator: So, Ms. Ravi, I think you brought up a pretty good point. I understand Mrs. Dee’s living will says, “I didn’t want to be a burden to my family.”

The mediator acknowledges the patient advocate’s point but needs to do more to bring her on board as a problem solver rather than a flame fanner by saying some-thing like: “I can see that you are committed to your role advocating for Mrs. Dee and for her wishes to be honored. I think that is everyone’s goal, but what I am hearing from Pat is that the document doesn’t capture all of Mrs. Dee’s goals, and it is worth some time talking about how to balance those.”

Bioethics mediator: [To Tanner] you mentioned that also she didn’t want to be a burden to her family. Can you explain to me your understanding of what she meant by “a burden”?


Tanner: She didn’t want to be on machines, she didn’t want to lose control over what was happening to her body, she didn’t want to be a financial drain. She wanted to be independent, and now she can’t be independent.

Bioethics mediator: How about you, Pat? What do you think your mother meant by ”burden”?

Pat: Well, she, I don’t think that this would be a burden. She wants to be there for my father and he needs her and she loves to be the center of attention, and she loves people around and that’s what she has right now. So I don’t see how this is causing her to be a burden. That makes no sense to me, and the kidney doctor said that these things would help, so then we should help her.

Bioethics mediator: I understand that you think that the interventions that are proposed so far are not a burden, but can I ask you what would be a burden, what would she mean by “a burden”?

Pat: If she died. Because then she couldn’t be there for everyone that she’s supposed to be there for. Then that would be a burden to her.

This response is so far off that it has to make the mediator wonder what else is go-ing on here and consider whether Pat has emotional issues that will prevent resolu-tion. But such an off-target response may also be an indication that Pat has gotten the message that her mother’s clear directions will need to be followed but hasn’t quite reached the point where she can acknowledge that. The mediator needs to be thinking about how to make Pat feel validated and heard.

Ms. Ravi: Boy! This is incredible, how could she—Pat: You don’t know her—Ms. Ravi: How can she be a burden to herself when she’s resting?

This is an example of the mediation principle that when you want to strangle a participant, you should instead try stroking: “Patient advocate, I know you have a role here to really advocate for Mrs. Dee and you are doing that with force. But, you know, one of the reasons for having this meeting is it is our experience that what is involved here is more than a piece of paper. We know that when faced with a decision about whether or not to continue treatment, it is better for a patient if everyone who loves her and everyone who’s involved with her care can be comfort-able with our choices about how to go forward. So thank you for being here, thank you for being a good advocate.” This is a very nice way of coaching the patient advocate to please back off.

Pat: She doesn’t know what she’s talking about.Bioethics mediator: So, Pat, you’re saying that as long as your mother’s alive

that she’s not a burden to you? It sounds like for you being a burden might be different from what your mother’s fear was?

Pat: Maybe.


Bioethics mediator: So, Pat, your mother’s being ill and in the hospital must be pretty hard on your father? How’s that going?

Pat: You know, Dad depends on her and he really needs to see her. And the doctor, the kidney doctor, said that if we do these things, they would help. And the other doctors, they are doing all this stuff and they’re doing it because it’s going to help her and so, you know, I’m very concerned about her and if anything’s going to help, then that’s what we should do.

Dr. Henderson: Can I clarify what dialysis would do for her?Bioethics mediator: Sure.Dr. Henderson: Dialysis would be a way to keep your mom’s kidneys going

for a little bit longer . . .Pat: That’s good.Dr. Henderson: Well, the thing is, it doesn’t actually change all the other

problems that are still happening. So in terms of what her prognosis is, it’s not actually changing—it might be prolonging her life, but it’s not actually making her any better. So it wouldn’t bring her any closer to her being able to take care of your dad or be around for him. I just feel like that’s—I don’t want you to have false hope that her having dialysis is going to get you closer to having her back and involved in your life the way she was before.

Pat: But it would help?Bioethics mediator: So let me see if I understand what you’re saying, Dr.

Henderson. The dialysis would fix, perhaps, the kidney problem itself for a time, a period of time—

Dr. Henderson: It doesn’t even fix the problem.Bioethics mediator: It will help the kidney problem for a period of time, but

not ultimately what’s causing the kidney problem. OK. So can you tell me more about what’s causing the kidney problem itself, and what it means for Mrs. Dee in the next days in terms of prognosis, or what do you expect to happen?

Dr. Henderson: In a general way, all of Mrs. Dee’s organs are starting to fail. Her heart is no longer able to pump enough blood on its own to get blood everywhere. And when you have these dramatic changes in blood pressure, that can affect the way the kidney runs. And it ends up being kind of a vicious cycle as all the different organs aren’t serving her well—the kidneys keep taking different hits and because the kidneys aren’t working well, that affects all the other organs, and so it’s just kind of a downward spiral and dialysis would let us keep her electrolytes even and it would help us keep some things normal so that she can still produce urine, she can still kind of get rid of some of the toxins, but it doesn’t really do anything to help any other organs that are also failing, I would say, including her lungs and she’s on the ventilator, so . . .

Bioethics mediator: Is there no treatment for her, what’s ailing Mrs. Dee ultimately? To correct this ultimately?


Dr. Henderson: I’m afraid to say that, at this point, there is no way to reverse where she is.

Bioethics mediator: So would it be correct, with or without dialysis, that you see Mrs. Dee’s prognosis the same in your professional opinion?

Dr. Henderson: I would say that with dialysis she may live longer but she won’t regain any functionality. Without dialysis that period of her decline and discomfort would be shorter.

Bioethics mediator: So, OK. My understanding is that she’s very ill and maybe her kidney failing is more like a symptom of her illness and you can help the symptom a little bit with dialysis but not ultimately fix the cause of her kidney failure.

This discussion of prognosis, which was necessary at this point in the mediation, might have been even more helpful had it occurred earlier. Everyone has been dancing around the fact that Mrs. Dee is dying. The physician has repeatedly avoided using the d-word. When Dr. Henderson talked about her heart being un-able to pump blood to her organs at the beginning of this part of the discussion, the mediator needed to say: “So, in summary, Dr. Henderson, if I hear you cor-rectly, you think that Mrs. Dee is dying and that there is nothing that you can do to make her better.” This is one of those moments when it is critical to hone in on what is happening in plain language. When the physician, other members of the medical team, and the family fail to introduce the word dying into the conversa-tion, it is the mediator’s job to do so and to make the patient’s dying state evident in the discussion.

Dr. Henderson: OK, that’s fair.Pat: But we’re not giving up.Dr. Henderson: We’re not giving up. We’ve been doing what we could but I

think—Pat: I don’t think that we should give up.Bioethics mediator: What does “giving up” mean to you?Pat: You know, my sister might want to give up, but I don’t want to give up.Bioethics mediator: We’re only talking about what we know and how we feel,

and I want to know what is giving up, what do you mean by “giving up”?

It was important that the mediator try again to get Pat to clarify what she meant by “giving up,” but this might have been a time to first address Pat’s repeated attacks on Tanner by highlighting their common interests: “Pat, I hear that you want to do everything you can for your mother. What I was hearing from you, Tanner, is that this is devastating for you as well, but you want to be true to what you promised your mother. You both are trying in our own way to be there for your mom.”

Pat: Anything that could keep her with us—I don’t think we should give up.


The mediator might also ask again what Pat means by “giving up”: “Pat you spoke about giving up. Giving up on what? What do you mean when you say ‘giving up’? Tell me what you mean so that we can all understand your perspective.”

Bioethics mediator: So would it be correct to say that whether an intervention for your mother meant a few more minutes of time on earth with you versus a few more hours versus a few more days wouldn’t make a difference. Would that make a correct statement?

Pat: Yes.

One reason this mediation is dragging on without much progress is the mediator’s failure until now to acknowledge Pat’s feelings and fears. Once she does so, in her next comment, the parties begin to make progress toward a resolution.

Bioethics mediator: Pat and Tanner, this must be so hard for you, with both of your parents so sick, and Pat, it must be especially hard and sad for you living with them. And I hear how worried you are about what will happen with your father now that your mother can’t take care of him anymore. It must be really hard on you now that your mom isn’t able to take care of him and interact with him?

Pat: Yes. We’re very worried about Dad and what’s going to happen with Dad and how Dad will be without Mom. Even if she was in a nursing home, Dad will still be able to see her, he’ll still be able to have her there and Mom will still be there for him.

Bioethics mediator: So, your father, has he been to see her in the hospital?

The mediator realizes that Pat is holding on to some notion that as long as her mother is alive, even if unresponsive, she can avoid facing the harsh reality of life without her. To help Pat think about what needs to happen to make that life manageable, the mediator asks a series of reality-testing questions.

Pat: No, no, he hasn’t been able to come.Bioethics mediator: I hear you saying that you think it would be helpful for

him to visit her, but I’m wondering how he will react. You said he’s pretty confused himself. How is he going to react if she’s physically there but isn’t there for him and can’t interact with him?

Pat: Yeah, but that’s why I think that—because the doctors said that these different things would help, I think that we should try.

Note that Pat may have just offered a solution to this conflict. She wants to try things that might “help.” It is possible that she will not insist on treatments that will not improve her mother’s condition or that she will agree to end treatment after a brief trial.


Bioethics mediator: So, Pat, you say if it would help, you want to do it, and your goal would be for your mom to still be there for you? What’s your understanding of how well the dialysis and the other treatments can help your mom? Where do you see her going?

Pat: Well, she would be there for Dad and she would be there for me and she would, you know . . .

Bioethics mediator: Do you see your mother being awake and alert?Pat: Why wouldn’t she be awake?Bioethics mediator: What I’m understanding from the doctors is that they

don’t foresee your mother waking up.Pat: Why wouldn’t she wake up? They said that they would do these different

things and they would help. Even if she wasn’t at home, we would still be able to visit her, so why wouldn’t she wake up?

The failure of everyone to use the d-word, to talk about the fact that Mrs. Dee is dying, has let Pat continue to avoid coming to terms with that sad reality. Avoiding talking about death might make a speaker less uncomfortable, but it is not helpful to Pat, who is struggling and in pain and terrified. Not talking about what really is going on just adds to her terror. Also the mediator has correctly identified Pat’s unrealistic expectations about the possibility that dialysis will improve her mother’s condition and she will regain consciousness. It might have been better to ask the physician the questions about the impact dialysis would have on Mrs. Dee’s level of consciousness. Asking Pat about her expectations runs the risk that she will lose face and become more defensive when she is told she is wrong.

Bioethics mediator: So what I heard from the doctors also was that your mother’s illness s has progressed very far, it’s caused a lot of damage to a lot of parts of her body, her brain’s been damaged, her heart’s been damaged, her kidneys have been damaged, and they don’t see them getting better. They may be able to make them work for a little while longer at the level they are working right now, but they’re not going to get better. Meaning the way she is right now, lying in bed unable to interact with you, is as good as it gets. That’s what I understand from the doctors. Have you heard something different?

Dr. Henderson: I hate to say it, but I don’t think she can leave the hospital and I don’t want her to suffer unnecessarily.

This is a real opportunity for the mediator to take some control of the conversation and help Pat come to terms with the consequences that the patient and family face: “Dr. Henderson, let me understand, given the loss of organ function in her heart and her kidneys and given the damage to her brain, is it possible that Mrs. Dee could wake up and is it possible that she could leave the hospital? I hear you saying that neither of these is possible, is that correct?” This is also a time when the mediator might want to educate Pat about the fact


that continuing treatment imposes a burden on Mrs. Dee, asking questions such as: “Dr. Henderson could she be suffering now?” “Could it be that the ventilator is causing her pain?” “Is there any way to be certain that she is not in pain?” The issue of suffering for no benefit is one that the mediator should highlight for the daughters.

Ms. Ravi: She’s on the ventilator right now and with little chance of being able to leave the hospital at all. She’s critically ill, she’s got multiple medical problems, and she’s been resuscitated once.

Pat: As you say, her heart stopped and they started it again, so they put her on all these things so that she will still be with us. So why, I don’t understand what . . .

Bioethics mediator: She’s had interventions while she’s in the hospital, and these interventions have been able to freeze time on her illness. They’ve been able to start her heart up, but now her heart was working this well [gesturing with hands about five inches apart] and now it works this well [gesturing with hands two inches apart].

Pat: So if it stops again, then you would start it again!

The problem with everyone’s failure to talk about the fact that Mrs. Dee is dying and to use the word death allows Pat to continue pushing her unrealistic views.

Dr. Henderson: I don’t know that it would restart.Pat: If it starts up again.Bioethics mediator: Once you’ve gone down a level, it’s not going to go back

up, and each time she gets more ill and has more damage, she’s going to progress to less and less function.

Good use of imagery; even better if the mediator had provided the information in the form of a question: “So doctor are you saying . . .”

Ms. Ravi: Will she be in pain? Will she be suffering at that point?Pat: What does that mean, “less and less”?Bioethics mediator: What I mean is, if we said that before she came into

the hospital, say she had a tank, like a gas tank. Say her heart had a full tank when she came into the hospital, her illness emptied her tank out 50 percent, let’s say it goes halfway down, there’s no way to refill it. The next event, the next time her heart stops, the tank is going to empty some more and there’s going to be no way to refill it. The doctors are concerned now that, you know, if it goes down even further, they’re not going to be able to hold it off, it’s just going to keep going down.

This is an effective use of a metaphor to help Pat understand that her mother is not going to get better even if the medical team can keep her heart going.


Pat: So how do we help her, because I don’t want to give up on her. I know that Tanner wants to give up, but I don’t want to give up—

Tanner: You’re not being fair. You know I love Mom, that’s not fair.Bioethics mediator: I think I’ve heard that Tanner doesn’t want to give up on

your mother. I think you don’t want to give up on your mother. I think that you’re not necessarily in disagreement. We hear that you both love your mother and you want to help her, and I’m also hearing that since your mother was your father’s caretaker, her not being available to him now in a role of caretaker is going to be pretty hard on you two. There’s some really hard decisions the two of you need to make together about your dad and how your dad’s going to be cared for. What are both of your thoughts about—since your mom, whether she lives a day or a year, is not going to be, from what the doctors have said, awake and ultimately participate like she was—what are your thoughts about what you need to do for your dad?

The mediator changes the focus from what additional treatment Mrs. Dee should get to the problem of getting services for the father. This turns out to be a critical move (and one that could have been made sooner).

Tanner: What are we going to do, Pat? What are we going to do with Dad?Pat: I know with Mom, Mom took care of him and Mom was there and Dad

needs Mom.Tanner: But I don’t think that Mom’s going to be able to take care of him the

same way that she has been, so what are we going to do with Dad? We have to make sure that Dad is safe and that we take care of Dad.

Pat: I know.

When the mediator raised the question of care for the father as a shared problem, the tone of the discussion shifted and the siblings for the first time in the media-tion began talking to each other.

Dr. Henderson: Your mom’s been in the ICU for a month—who’s been taking care of him?

Pat: I’ve been doing what I can because Dad and Mom and I lived together.Bioethics mediator: Do you work?Pat: I work sometimes.Bioethics mediator: So you’ve taken on the burden for the month while

looking after your mom in the hospital too—that must have been really getting to you, that must be so hard.

This acknowledgment of Pat’s efforts and the burden she has been carrying is im-portant for moving to a resolution.

Pat: It’s very hard.


Bioethics mediator: How are you managing?Pat: I’m having a really hard time.Bioethics mediator: What would help?Pat: I don’t know, that’s why we have to, can’t give up on Mom.Bioethics mediator: So what you’re saying is that you are pretty overwhelmed

by this?Pat: It’s very hard.Bioethics mediator: It is hard. It is really hard. And Tanner, you’re not here so

you’re—Tanner: No, I guess I hadn’t really thought about it. I guess I left that to you

to take care of Dad and I think that we need to work together and that we need to come up with a plan together to take care of Dad in a way that it’s not just all on you. It just doesn’t seem fair, so I’m sorry, I’m really sorry. You just never said anything, so I just assumed that everything was OK. I’m sorry. So what can I do to help?

Pat: I really don’t know.Bioethics mediator: We can’t, we wish we could, but we can’t change the fact

that your mom is dying, but one of the things we can do, we’ve got a social work team that can speak with both of you. We can set up a meeting so that you can start to plan and get what you need to manage going forward without your mom. Does that sound like a good idea?

Pat: I would like some help.Bioethics mediator: That’s good. So the two of you will work together

to come to an agreement as far as getting care for your father. We will certainly have the social worker give you some details on programs we have and what assistance we can offer to help you with those things.

Dr. Henderson: I guess I can say as the attending who is in charge of your mom’s care, I know there’s this consent for dialysis in the chart, I’m trying to be respectful here, but I just would like to know whether, you know, I can go ahead and take care of your mom in a way that’s going to make her comfortable, or do I need to start dealing with dialysis and getting that started?

Bioethics mediator: So, Dr. Henderson, the dialysis—you say that you’d rather not do that as opposed to providing, did you use the word “comfort”?

Dr. Henderson: Yes.Bioethics mediator: Do you believe that if she has the dialysis that she

wouldn’t be comfortable?Dr. Henderson: I don’t think she would be comfortable. I think I mentioned

before I feel as though she’s suffering more from all the treatments than they can benefit her. I think that there’s pain that comes with all the blood draws and with all the fluids and finding new IV sites, and dialysis means putting in another set of lines and eventually getting her a graft in her arm, and all of these things are really invasive and painful and not really helping. They are just prolonging her death and we’re not really getting her


any better by doing them. I’m thinking about your mom—I’m worried that we won’t do her the best service by moving forward with dialysis.

Pat: So it’s not going to help?Dr. Henderson: No.Pat: So what are we going to do for her?Dr. Henderson: We are going to make sure that she is comfortable and that

she lives the rest of her life the way she wanted to. She’s been pretty clear about what she wanted and what she didn’t want.

Pat: I think sometimes that we honor her by that.Bioethics mediator: A lot of times, with patients at the end of their lives,

physicians are able to change focus from unnecessarily doing procedures on a patient to making sure she’s comfortable during the time that she has left, is that correct?

This is a good summary of the shift in the focus of care for Mrs. Dee, but it would have been useful to acknowledge how much Pat has moved: “Pat, I want to stop for a moment and acknowledge how hard this conversation has been for you and what a really devoted daughter and great advocate you have been for your mom. We know that both you and Tanner love your mom and your dad, but as Tanner said, you have borne the burden of this last month. And you stayed faithful to your mom and to figuring out what could possibly help her. You were really strong in defense of her life. But now, as we all agree that she is dying, you have been able to see what is best for her, and that was hard. I really thank you for being so there for your mom.”

Dr. Henderson: That is exactly right.Bioethics mediator: How does that sound?Pat: Tanner, so we can visit her and Dad can visit her.Tanner: OK.[Mediator’s wrap-up and thank-you to parties omitted.]

Further Discussion

This case involves a not unusual problem: even though Mrs. Dee has made her wishes clear and done so in writing (among only 15 percent of the population who have written advance directives or living wills), she has discussed those wishes with only one of her two children. The result is conflict within the family best resolved not by an appeal to legal authority but through a mediation during which the underlying fears and suffering of both siblings can be addressed. The conflict was heightened by Pat, the adult child living at home, being over-whelmed and at sea about how she would manage life with her demented father after her mother’s death. Another source of the conflict was the nephrologist, who created the problem by giving Pat false hope or at least by using language that was so open to interpretation and misinterpretation that it was really not helpful.


It took the mediator in this case a very long time to use the d-word and say what everyone had been dancing around—that Mrs. Dee was dying. Only at the very end of the mediation did Dr. Henderson reframe the issue from prolonging her life to prolonging her dying. It can often be helpful for the mediator, early on, to say something like: “So, doctor, are you saying Mrs. Dee is dying and that start-ing her on dialysis is not going to improve her life but only add to her discomfort and prolong her dying?” Notice how making this powerful mediator move in the form of a question softens it somewhat and leaves space for the family members to ask questions and take time to process its implications. It is critical to remember that family members are unfamiliar with the language, terminology, and concepts of modern medicine and likely feel alienated and baffled by the discussion. But an additional strand missing from this mediation is the no-tion that the medical care team must bear the responsibility of the decision without disempowering the family members. In this case the mediator needed to ask the physician what he was suggesting and why in a way that set up the responsibility and authority for this terrible decision that would permit death. The mediator might have said: “Dr Henderson, I hear you saying that Mrs. Dee is dying and that you and all the medical interventions in the hospital cannot pre-vent this. Is that correct? I also hear you saying that these interventions that will not make her better and bring her back to her prior state may also be causing her pain and suffering. So it sounds like you think that it is best for Mrs. Dee to direct our efforts at her comfort and that prolonging her organ function will not bring her back to her daughters. If so, then is it fair to say that you are suggesting that it is best for Mrs. Dee to let her die comfortably?” If this logic is followed, the daughters hear the progression and hear the physician taking responsibility for the decision, and they may not feel that they have been the instrument of their mom’s death. This case illustrates another matter. Living wills are important, but in the clinch of hard decisions they amount to just one more piece of information that must be factored into a solution. It might have been useful to quote from the document early in the mediation and ask why Pat thought that her mom did not mean it. But in the process it was critical to help the daughters understand and agree. Imposing the dictates of a living will in a case such as this would be ineffective and mean. It would not help these daughters deal with the realities that face them or the future that they need to face together. Yet these were the wishes of the mother and were placed in a legal document. Many lawyers might ask, Why is this not the end of the matter? The answer is that in medical care there are ethical obligations to all the parties in the decision struc-ture. This is why we talk about a principled resolution to the conflict. Given the living will, it would not be legally supportable to introduce dialysis at this time in this patient’s care. It would not be a short-term intervention that we might argue she might want as a way of restoring her health. It would be a long-term interven-tion that would provide no benefit other than prolonging the dying process. That is why in this case, as in many others, conflict is the spur to examine all data as a way of arriving at a consensus that meets the emotional needs of the family and also comports with the legally documented desires of the patient.


Medical staff face death as a matter of course. They are trained to address this event with skill and without excessive emotion. The distancing that comes with medical education permits staff to be effective in emotional situations. Family members are not so accustomed, and the staff should ease their burden so that they can function within their family roles and responsibilities after the loved one has died.

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19

Don’t Tell Mama: A Role-Play Transcript

Parties

Dr. Simon, chief resident B. Wong, head nurse Dr. Miller, attending physician Eleanor Katz, patient’s daughterJeffrey Gold, patient’s son Bioethics mediator

Background

Mrs. Gold is an eighty-two-year-old widow who was brought to the hospital two days ago by her daughter after several weeks of fatigue, weakness, and gastrointes-tinal disturbance. Her history and physical strongly suggested colon cancer, which was confirmed by a colonoscopy. Her two adult children aggressively instructed the intern not to reveal the diagnosis to their mother. Mrs. Gold is very pleasant and seems to be aware and alert to her surroundings. The first few days she did not ask why she was in the hospital or what the problem was. Since that time she has questioned staff intermittently about why she is in the hospital and what the tests are demonstrating. When the intern told the resident, Dr. Simon, what had happened, Dr. Simon was furious. She said that patients have the legal right to know their medical in-formation and the family has no business telling the staff not to disclose it. When the team made rounds the next morning, the family was waiting outside the pa-tient’s room and warned the team again. Dr. Simon explained about the competent patient’s right to information and right to decide about her care. The patient’s son said: “Listen, I’m a lawyer, and I know all about rights. If you say anything that upsets or harms my mother, you’ll find out firsthand what the law has to say.” Before things got even more tense, however, the attending, Dr. Miller, stepped in and assured the family that the team would not do anything to put the patient at risk. Dr. Miller put a big note on the front of the chart: “Patient is not to know her diagnosis as per instructions of family.” There is considerable difference of opin-


ion on the team about the appropriate way to handle the situation during the time Mrs. Gold is hospitalized for surgery and during her treatment. The effort to avoid talking with Mrs. Gold about her condition has been very awkward for the house and nursing staff. Several staff feel that they are being dishonest and, as a consequence, are not spending as much time with the patient as they feel that she deserves. Others feel intimidated by the threat of a lawsuit if they disregard the family’s instructions. Brenda Wong, the head nurse, requested an ethics consult to clarify the issues and provide guidance in dealing with this uncomfortable situation.


Bioethics mediator: Good morning, everybody. I’m Dr. George Rey. I’m a member of the Bioethics Committee and I was asked by Nurse Wong to bring you all together to talk a bit about Mrs. Gold. It’s my understanding that there have been some differences of opinion about how much Mrs. Gold should be told about her condition, so I thought it would be good for all of us to sit together and discuss her ongoing care. Maybe if we can go around the room and introduce ourselves first and then I’ll start.

The mediator identifies the issue that led him to convene the session but fails to give a clear explanation of his role or what the participants can expect from the process. For example, he might have said: “I am a member of the Bioethics Com-mittee and I am often asked to help when there are disagreements about the plan of care for a patient. I am not involved in Mrs. Gold’s care. I work for the hospital, but during this discussion I will be acting as a bioethics mediator. I will not be making decisions but instead will be trying to help all of you reach a consensus, a principled resolution, about the best way to care for Mrs. Gold.” In this case the mediator identified the person who asked him for help. Bio-ethics mediators need to consider whether doing so will help or hinder the process. Especially when the consult has been requested by someone with relatively less power in the institution, it might be better not to volunteer that information. In our experience, the question of who called for a consult has never been raised by a mediation participant, but that information is often offered at the start of the mediation as a way of clarifying the process. It can be as vague as “a member of the medical care team.”

Eleanor Katz: I’m Eleanor. I’m Mrs. Gold’s daughter.Bioethics mediator: Nice to meet you.Nurse Wong: I’m Brenda Wong. I’m the nurse that has been working with

your mom for a few weeks now.Carol Simon: I’m Carol Simon, the chief resident, working with your mom.Jeffrey Gold: I’m Jeffrey Gold, the son of Mrs. Gold.

Don’t Tell Mama: A Role-Play Transcript 275

Dr. George Miller: I’m Dr. Miller. I’m Mrs. Gold’s primary doctor and not just for a few weeks, but for eleven years.

Bioethics mediator: Nice to meet you finally. Ms. Wong, I think it would be nice to start with some of the medical facts about the patient and, since you brought this to my attention and the reason for us getting here is to talk about Mrs. Gold, I thought maybe you could tell us why we’re here.

As we have noted at other points in the book, this is an excellent time to introduce the patient as a participant (see “Tell me about Mama” under “stada” in Chapter 5). The mediator might also have opened by saying: “You all know that one of our goals in these sorts of discussions is to try and make the patient a participant, even though she is not here in the discussion. This is a particularly difficult case because Mrs. Gold appears to be capable of participating in health care decisions but her children are opposed to her involvement. So making her present in the discussion would be easy—simply move the discussion to her room—but her family, who know and love her best, supported by her longtime physician are uncomfortable with that inclusion. So let me ask the family: Tell me about your mother. What kind of person is she? What is important to her? What has her life been like? Re-member that we are the experts in medicine, but you are the experts about your mother and your family.”

Nurse Wong: Well, I called you because it is very uncomfortable for me to watch Mrs. Gold not being told about her condition. I think people are feeling awkward in front of her because they are afraid they might tell her inadvertently what her real condition is or what stage she’s at in her illness. And the family has asked us to not say anything in front of her. So I think we’re holding back a little bit with her. Also, some of us are uncomfortable because we have been told that a patient who can understand the medical issues needs to be included so that she can provide informed consent for any procedures. So we are confused and uncomfortable.

The mediator needs to give careful consideration to the choice of whom he asks to start the discussion. Here the decision to start with nurse, who is the person who brought the situation to the bioethicist’s attention, worked. She gave a caring state-ment of her concern. The choice to have Nurse Wong speak first could be seen as a way to validate her request for help and to empower her by letting her frame the problem. But starting with her also runs the risk of making the nurse the target for other participants. It might have been better for the mediator to begin by indicating his under-standing of the precipitating issue: “We are here because I understand there is some difference between the medical team and family regarding what Mrs. Gold should be told about her diagnosis, and the staff has some concerns about not telling her about her condition, so we’re here to talk about that and we’re also here to talk about anything else that will help us provide her with the best possible care. Before


we get to those issues, I want to be sure we are all on the same page regarding Mrs. Gold’s medical condition.” The mediator would then turn to a member of the medical team, typically a physician, and in a teaching hospital the intern or resi-dent, and ask for a statement of the medical facts. A nurse might also provide that information, but hospital culture pushes in the direction of having a physician be the first to speak to the medical facts. Whereas here, there is a disagreement between the attending and the resident, the mediator again has a potentially difficult choice. Starting with the attending honors the power realities in the hospital and the relationship that this physician has with the family. However, in a teaching hospital it is the custom to ask the resi-dent to state the case, and the staff would expect the mediator to begin there.

Jeffrey Gold: I don’t really care if you feel uncomfortable; I’m really worried about my mom here. I just want to be clear—my concern is about how she feels, and I’m worried about her being upset by this. I asked that you do your jobs and take on those responsibilities, and if you feel a little uncomfortable, I think I’m more comfortable about that than having my mom be uncomfortable and really scared.

Eleanor Katz: I feel that we were a bit late in bringing her to the hospital, and in some ways we could have hastened her death. I’m certainly not in a position where I want to kill her soul and her spirit as well. I think my brother and I both know what it’s like to lose a parent. Our father died of cancer. In our family that illness is a frightening one; it’s a scary word for us and once we talk about it, I think we define it as a death sentence and we give up hope—and we want our mother, who is a fighter, not to give up hope.

Bioethics mediator: Let me just ask Dr. Miller, who has known Mrs. Gold for a while, to tell us a little about her current medical condition and tell us what we know about her to date.

Having started with the nurse, it is now time to turn to one of the physicians and to ask for medical facts, but not before acknowledging the poignant statements of Mrs. Gold’s children, and especially acknowledging how distressed they are. Elea-nor talked about being late bringing Mrs. Gold to the hospital. It is likely that she feels guilty and fears that she and her brother have contributed to their mother’s dying. She also fears that receiving a diagnosis of cancer will “kill her soul.” The mediator might have said: “It sounds like this is a really horrible situation. Your family has been through a lot. It is really hard to be going through this again after losing your father to cancer. I also hear that you wish you had moved sooner on this illness and that you want to be sure whatever decisions are made now work for your mother.” In discussing this exchange, the mediator said that he was con-cerned that acknowledging the daughter’s feeling that she had waited too long to bring her mother to the hospital might create more guilt. Certainly a response such as, “So you feel guilty because you were slow to respond to your mother’s com-


plaints,” would be inappropriate. The last part of that statement suggests a judg-ment about the amount of time that passed. In addition, the word guilty is likely to produce a strong push back. Our experience is that it is important to do two things by way of response to a strongly felt statement: acknowledge the strong feel-ings, and help the parties sort out the mix of emotions. Here the daughter is feeling terrible about waiting to seek care for her mother and she is also reliving the pain of losing her father. Saying “I hear that you wish you had brought your mother in sooner” is not the same as agreeing that she should have done so.

Dr. Miller: As I mentioned, I’ve known Mrs. Gold for about ten or eleven years, and I know the other members of the family who have been very active in supporting her and seeing that her health and other needs are taken care of. It’s really good to have a strong family like that—I appreciate that. Over the last few weeks, she has been clearly deteriorating. She’s been in really good shape for eighty-two years, but she’s been losing weight, she’s been becoming more fatigued, she looks pale and weak, and also I found her to be anemic, so I put her in the hospital to see what was going on. She had dark stools. We were afraid, obviously, of cancer but also perhaps something more benign like an ulcer. We did the colonoscopy and unfortunately it is cancer.

I know that there are people here who feel duty bound to tell the patient all the information, but we have to realize here that people are fragile and don’t always respond to what our dictates tell us and also that we have a very, very concerned family here that I have known for some length of time. I want to give them respect, and we have to acknowledge what they are saying as well. Unfortunately, Mrs. Gold is likely, I would say certain—I’m not going to make this easier than it is—to die of this cancer. It is very aggressive, very large, has metastasized to her gut, and is likely inoperable but for some palliative surgery to advance her comfort. Her children will be around thereafter and I will be around thereafter—we all have to live with what decisions we make.

Eleanor Katz: We appreciate that, my brother and I. We have known you for a long time and we feel you have come to respect our family’s system. It is upsetting to think that the concerns of the staff—people who don’t really know us—and the fact that they feel uncomfortable is being given priority over the wishes of the people who have known our mom the longest and that we are somehow not being listened to. They should take the lead from us who know her the best.

Bioethics mediator: I would like to ask one more question of Dr. Miller. Is Mrs. Gold capable of making decisions for herself?

Dr. Miller: I believe that she is in full possession of her mental faculties—she’s suffered rapid aggressive physical debility, but I believe she is capable of making decisions, including the decision not to decide.


The mediator needs to summarize what Dr. Miller has said about Mrs. Gold’s grim prognosis. Sometimes this summary of the physician’s presentation of the medical facts is a way of improving the likelihood that the family members have understood what was said, especially when the physician has used technical terms or euphe-misms. Here the medical facts are straightforward and Mrs. Gold’s children seem well informed. Nonetheless, a summary would be useful to slow down the conver-sation and give everyone the opportunity to process what has been said.

Bioethics mediator: Maybe, Mr. Gold, you could tell me more about the conversations you’ve had with your mother. I’ve heard that your father had cancer—maybe you could tell us a little about her response to that illness?

Jeffrey Gold: You know, Mom isn’t one who talks a lot. She obviously was sad and hurt when my dad, our father, passed away, and seeing him go through that process. Maybe because I’m her son, she didn’t talk to me about that stuff much. I tend to manage things more. I’m a lawyer so I help out with legal stuff; I’m very hands-on, matter of fact. [Speaking to his sister, Eleanor] That touchy-feely stuff, maybe you guys talked about it, but really, it wasn’t what we got into. I will say this, that as a lawyer, I know what our laws and rights are and I know that we have a right to protect our mom and if you guys keep insisting that we need to tell her this diagnosis, I’m going to escalate this to other people. I’m glad you came, but there are people above you and I’m happy to go to them. And if it’s not in the hospital, and it’s the courts, I’m happy to do that too. I’m very trained and skilled—that’s what I do. So I would really like to hear at the end of this that you are going to respect our request to not tell my mother.

Bioethics mediator: Well, it’s not my decision—it will be our decision. We’re going to try and work our way through a bit of this. I was wondering if you might be able to tell us a little more about what your mother had expressed to you about her medical problems and knowledge about them?

The mediator, after a slightly defensive response (“it’s not my decision”), ignores the threats with the goal of minimizing their impact and avoiding a confrontation. Not addressing the threats runs the risk that other participants will be inhibited by them. It would have been useful to acknowledge the strength of Jeffrey’s feelings and reframe his threats as an expression of his commitment to his mother. “I can hear how passionately you feel about doing what is best for your mom and that you will use all your skills and training to fight for her. We hope that it doesn’t have to come to a fight. The reason we are all meeting is to try to agree on the best way to proceed.” This sort of reframing acknowledges the interests and powerful feel-ings underlying the threat while defusing the threat itself. It also allows the other participants to hear Jeffrey’s aggressive language as an expression of his pain rather than as an attack on the medical team. The mediator might also have said: “Mr. Gold, you are one terrific advocate for your mom and what you think that she needs. But for the moment I would like


you to adhere to a modest ground rule: I will assure you that I will not let anyone threaten you, but I ask the same from you. Everyone here feels very strongly about your mom, especially her children and her physician. But we are here to explore all of the perspectives of family and staff and try and find a solution that all are com-fortable with. I ask you to give us a chance.”

Eleanor Katz: Well, my mother is a fearful woman. As she grew older and as concerns came, we had our family doctor. I was always the spokesperson, and it was almost as if I was the filter for her—that was our family, our culture. That was what was encouraged. She loves Jeffery and me, and she put her trust in us. We’re very different. Jeffrey is very practical and smart and I’m more a crier and hugger, but between the two of us, I think that we always did what was in our parents’ best interest. We know them, we’ve listened to them, and we know what spirit means, we know what hope means, and we know what terror means in our lives. And to spare our mother terror in the last weeks of her life to us is more important than for her—because of the needs of the hospital or even the fact that usually because someone is competent you expect them to be brought into the decision—to be told everything about her condition. To be competent does not preclude being terrified, being depressed, feeling hopeless, and the terrible worry that may go along with that.

Bioethics mediator: Well, I certainly understand that. I‘d like to ask the staff to tell us a little about the interactions they have when they go into the room and how does Mrs. Gold respond to them. What is she asking? Is she curious?

Before gathering more information about the problem with this important series of questions, the mediator needs to respond to the eloquent statement by the daugh-ter. Simply saying “I understand” isn’t sufficient. The mediator needs to say what it is that he understands, that is, what he has learned from this statement by the daughter about the family’s way of coping with medical problems and about her mother’s fears. While Eleanor talks about her mother’s “being terrified, being de-pressed, feeling hopeless, and the terrible worry that may go along with that,” it seems likely that those words also describe how the daughter and her brother are feeling. These feelings also need to be acknowledged before asking the medical team for information about their interactions with Mrs. Gold. The mediator might also take this opportunity to observe: “I hear that your family has a shared personal culture that is a great factor in how medical decisions are made, and the staff is also part of a culture, structured by American bioethics and law that states that a patient who is capable of making health care decisions has a right to know about the options and to choose for herself how to make those decisions. This discussion is about how to reconcile those two cultures. So let us give all of the issues a good hearing before we try and decide anything.” Depending on the ethnicity of the family, there may be another factor in play.


The rules governing decisions about medical care have emerged from U.S. law and assumptions about liberty, dignity, and self-determination embedded therein. Many cultures have no such notions. In many Asian cultures, for instance, it is assumed that illness and death are not mentioned to the patient. In some Native American cultures, it is believed that talking about death actually hastens its arrival and is a violation of appropriate norms of behavior. Many of these familial and cultural patterns emerge in the course of a mediation.

Dr. Carol Simon: I’ve been the chief resident on the case, and I’ve been seeing her since she was admitted. She’s a very pleasant lady, but I have a feeling that she knows that she’s very sick and that’s why she’s in the hospital, and if she wasn’t sick, she wouldn’t have been in the hospital. We are doing tests on her, and I feel not telling her what the implications of those tests results might be is not fair because she has been asking questions and she’s concerned, and I believe because your father also had that diagnosis, I agree with you that it seems that she is fearful—but I wouldn’t say “fearful,” she’s concerned, and I have a feeling that she wants to know.

Bioethics mediator: Could you tell us more about that—that feeling?

This is a good example of an important clarifying question.

Dr. Carol Simon: Whenever I make rounds on her or see her, she always asks me, “What was that result? What did that result show?” She asks me those questions, about what I’m thinking. It’s very hard for me to give her partial information and not tell her the whole thing, she is somebody who is very capable of making decisions. She’s very alert. It’s not like she’s unconscious; she’s not unaware. She’s asking intelligent questions about what the test results were. Is she getting better, is she not getting better, why are we doing this test, why are we not doing that test, and what are the implications, and what does this mean and why? So not telling her, not giving her the complete picture of what we’re doing and hiding things from her—I don’t feel that’s the right thing to do as a physician, especially given the fact that she has the capacity.

Two very different pictures of Mrs. Gold have emerged—one that she is fearful and doesn’t want to know what is going on, and the other that she is full of ques-tions. The mediator needs to acknowledge those different pictures. “Listening to you, Jeffrey, Eleanor, and Doctor Miller, and then to you, Dr. Simon and Nurse Wong, it is puzzling—as if you are talking about two very different people. Jeffrey and Eleanor, you have described your mother as wanting to leave the knowledge about and decision making regarding her health care with the two of you and as wanting to avoid information. Dr. Simon and Ms. Wong, you describe someone who is full of questions about her care and her condition. I’m curious about each of your thoughts about why the difference.” An observation like this might provoke


a response from one of the participants, for example, that Mrs. Gold is trying to protect her children by avoiding talking about cancer or that she feels that they aren’t comfortable using the word cancer, or that the staff are in subtle ways letting her know that they think she should be asking questions.

Eleanor Katz: Can I ask a question? What is it that she would be expected to do with the information that she has cancer? Are there decisions in her treatment that she’s going to have to make? I would also like Dr. Miller to weigh in on this. Are we saying that she’s at a point where treatment is necessary or that comfort care is necessary?

Dr. Miller: I believe that this is advanced cancer. At this point it is not treatable. I have certainly spoken with my colleagues in GI and we have a medical consensus on this issue, and certainly palliation is appropriate. We’ll be getting a palliative care consult—and none of these decisions or actions is contingent on her knowledge of cancer.

It would have been useful for the mediator to jump in here and summarize: “So, Dr. Miller, just to be sure I am clear, Mrs. Gold’s cancer is not curable and her treatment—for the disease and for any pain she may experience—won’t be affected by whether or not she is told she has cancer, is that correct?” Then the mediator might have asked Nurse Wong and Dr. Simon whether they agreed that the treat-ment did not turn on Mrs. Gold’s being told her diagnosis. That summary and follow-up question might have headed off the not especially productive exchange that follows.

Jeffrey Gold: I would like to know why he feels comfortable with not telling her, and you, who have been taking care of her for a few days, feel uncomfortable—it doesn’t make sense to me.

Nurse Wong: I really want to respect what you’ve decided and what you feel, that you want to protect her from this knowledge and that the fear of her really knowing it might trigger a worse condition. And I certainly want to respect both the terror that you see in her, that she’s often very fearful, and the fact that you really have her fears in mind and her protection in mind, but I think I have a personal bias. She’s often spoken so lovingly of the two of you, and obviously she’s very proud and feels that she can count on you. She’s put her affairs in your hands. But I guess my bias is or my hope is that when one has better information or more realistic information that there can be the hugs and the kisses—that you can talk and she can use this time, maybe there’s something that she wants to tell you. Maybe it’s time to reassure her that you do love her, that you have her best interest at heart and—

Eleanor Katz: Sorry to interrupt, but you’re talking about maybes and perhaps, but there are no maybes for us. The way we’ve lived our life, there’s nothing left unsaid and I appreciate that you have biases, we all do.


You’re not the star of the show, our mom is the star of the show, and I feel, and I think we both feel, that it almost feels disrespectful to us because we have all considered this deeply. This is not flip, this is not something we came up with today. It’s in some ways in keeping with how we’ve lived our life as a family, and I think there needs to be some trust in us that we are doing this in her best interest. And I appreciate that it might be uncomfortable for you, but we’re hoping, I guess, that you can somehow work through your own discomfort in a way that you will continue to care for our mother with the utmost professionalism.

Nurse Wong: Of course. I’m just kind of exploring that possibility.Jeffrey Gold: I just want to say that you can keep your biases for your mom,

and I’ve got my biases for my mom, and I’d like to leave it that way.Bioethics mediator: Maybe we could just stop for a second and summarize

what we know about her care. So Dr. Miller has told us that she has terminal cancer—we don’t know how long it will be until she dies, but we know that she has terminal cancer and we need to make some plans for that. Clearly, you both care for your mother and have had a longstanding way of managing illness in the home, which I think I’d like to hear a little bit more about in a minute, and we have our team members who are obviously concerned about her too, and I don’t think that we should let that go. I think everybody wants to do what’s best for Mrs. Gold. Maybe we can just go back a little bit. I’d like to know a little bit more about your mom. I’d like to know a little bit about how she handled the household and her relationship with the two of you over a period of time in discussion about serious issues.

The mediator does a nice job of summarizing the medical facts and acknowledg-ing the family’s traditions regarding managing illness. He also reminds everyone of their common interest in doing what is best for Mrs. Gold. There was another piece of work that needed to be done by the mediator. Both children jumped on the nurse’s use of the word bias and reacted to it. It would have been helpful if the mediator had noted that his impression was that Ms. Wong was trying to acknowl-edge her personal values—her biases—but was also saying she was trying to step back from those and respect the family’s views. He might also have noted that Ms. Wong was also describing how difficult it is to comply with Jeffrey’s and Eleanor’s very loving, protective approach while also responding to their mother’s questions. He could have helped Ms. Wong complete her final thought by saying what he thought she was getting at: “Jeffrey and Eleanor, I heard you react strongly to what Ms. Wong said about her biases. I could be wrong, but my impression is that Ms. Wong is trying to respect your wishes and your family traditions. And Ms. Wong, please correct me if I got it wrong, but I think you were also saying that in your experience, people often want a opportunity to say goodbye.” There is another avenue at this moment that the mediator might want to ex-plore. He might say that carefully controlled studies have demonstrated that pa-


tients who are dying know this fact and are easily isolated in their fear. The stud-ies show an increased level of comfort when the information about diagnosis and prognosis is shared and made the basis for discussion. This is surely not dispositive in the case of Mrs. Gold, but it does offer one more perspective to be considered. It may be that Mrs. Gold is protecting her children, who are busy protecting her— a circular misunderstanding not beneficial in end-of-life care.

Jeffrey Gold: I’m sorry, you wanted to know what we talked about?Bioethics mediator: Yes, I’d like to know a little bit more about what your

mom was like in dealing with you and your sister in terms of discussing her medical problems. And you did mention that your father died recently of cancer, which must have been very difficult for the family, and I’d like to hear a little bit more about that.

Jeffrey Gold: So Mom has always been a great mom, she took good care of us and I think we feel the need to return that favor as long a she’s with us. You know, she’s the kind of person who gets scared easily, is fairly anxious, so a lot of her life, Dad took care of her. And he’s not here anymore, so my job, our job, is to take care of her. She’s a very bright, exciting, lively person, but she doesn’t deal well with stressful things. So we feel like we really need to take the stress here and do what we can to keep her alive and bright and sort of let her be her, and not let her medical stuff kill her earlier than it may.

Bioethics mediator: And why would you think that her having knowledge of things so far unspoken would kill her? Why do you think that?

Jeffrey Gold: She just saw my dad die of cancer, and if she heard the word cancer she would know what’s coming and she would shut down. That’s my take on it, that this cancer diagnosis will—

Eleanor Katz: You know, at home, we never used the word cancer. We knew that cancer was always a terrifying illness. And when our father got sick, that was our worst fear, that it was indeed cancer. As it was his worst fear. He died a real painful and difficult death with very little hope or expectation that he was going to have a life after the illness. And we saw our mother, who always had a sparkle in her eye, we saw part of that close down, and the loss for her has just been heartbreaking. We feel that she of course knows that she’s sick. She’s not a schooled woman, but she’s a smart woman. We feel, given the fact that there’s nothing that we can do to save her life, that using the word infection and saying we’re going to use drugs to make you more comfortable would be easier. We know you have to do your jobs, but would it matter if it was cancer or a terrible infection? If it’s going to be less scary for her and easier for her to live out her life without nightmares, I guess we’re hoping that there can be some sort of agreement that you continue to do your jobs, that you don’t shy away from her because you feel uncomfortable not using a word that brings up the terrible death of her husband who she loved and that terrible death which she fears.


Bioethics mediator: So are you more concerned about the word than her understanding of what’s happening? Has she asked you what’s wrong?

The mediator asks a useful question but before doing so, it would have helped for him to address the issue of pain. Eleanor has described her father’s painful death and it seems likely that pain is a big source of both Mrs. Gold’s and her children’s fears. They (and she) need to be reassured that the medical profession has gotten much better at managing pain. The mediator, who does get to this issue later, might have said: “Pain management is a real issue in this case, and I am sure that Dr. Miller would tell you that the palliative care team has done terrific work over the last two years in honing interventions that keep the patient comfortable. Whatever happens in the case of Mrs. Gold, we can assure you that she will be comfortable.”

Eleanor Katz: In all our years together, especially since our dad died, we were the ones who would accompany her, and she would say, “Speak to my son, speak to my daughter.” You know, we are her pride, we went to school, she didn’t. They gave us everything, and there’s an expectation in our family that she brought up two children with respect and family values and that we’re going to honor our parents, and I think that we’re trying very hard to act in ways that are congruent with the way she lived her life.

Dr. Miller: I would like to agree again with that description of her approach to illness and doctors and medical issues. I’ve known her for eleven years and during many visits to my office since your father died, always with you, of course, this is how she wanted it. And from the most trivial to the most severe, any issues that came up, she always deferred to you, her children, and I think we have to listen to the patient’s wishes to understand or not understand things and to let other people make the tough decisions. That is what she’s done all along, and I see no reason why we have to change that now and dump this on her.

Eleanor Katz: I think we would be having a different conversation if there were things that could be done that were going to save her life. Of course we want her here with us and we’re going to miss her terribly, so I think we both just want you to understand that in no way would we interfere with the treatment that was going to save her life.

Bioethics mediator: I think that’s a very good point. I guess we have to talk about the word infection which you brought up and how difficult it is for the staff to tell someone that it’s an infection when it’s not. Do you both understand the staff’s point of view on this?

Jeffrey Gold: I would be happy if you just told her that she has an illness and we’re working on making you better.

Nurse Wong: I am concerned about her anxiety and her fear, and I want to assure you that the staff would do everything that we can every day to give her the best help that we can and keep her from being in pain, we’re not going to—


Eleanor Katz: We appreciate that.Nurse Wong: Everything we could to help her with the fear or the anxiety.

Is there something that would alleviate some of her issues at this point to deal with that?

Bioethics mediator: So from what I’m hearing, I think we are moving towards a way of trying to deal with everyone’s concerns, and it seems to me that if you are concerned or afraid of her being in pain or being very anxious, there are ways we can help with that, and I’ll ask Dr. Miller to talk a little bit about his feelings in treating his patient.

Dr. Miller: Absolutely! At this hospital, I’ve worked with the palliative care team. Over the last several years their skill and availability have increased. They do a fabulous job, and I no longer feel concerned about their ability to control physical pain and also to deal with other issues as they come up. And I want to reassure her children and everyone else that that will be done—please don’t worry about that.

Bioethics mediator: So you’re saying that there’s absolutely no reason for her to suffer?

The mediator, building on the nurse’s recognition that one major source of the con-flict was the children’s fear that their mother was doomed to the same painful death as their father, asks Dr. Miller for information to reassure them. The mediator then provides a very simple restatement of the important fact that Mrs. Gold’s pain can be managed and that she will not suffer. But he has not addressed the other mat-ter that is of great concern to the staff, which is their feeling that it is lying and in derogation of their ethical obligations and legal duties not to tell the patient of her condition. The mediator has heard that the patient always deferred to her children. Per-haps he could suggest that the children and staff have a conversation with the patient in which either her daughter or son asks: “Mom, is it OK with you if we make decisions about what will happen to make you better and keep you comfort-able? That is how we have always worked with Dr. Miller. Should we continue this?” This clear delegation of authority and autonomy would be supportive for the staff.

Dr. Miller: I couldn’t say much better myself.Dr. Simon: So I’m now hearing, knowing your mother more through you,

that she and your family had a difficult time. I’m really sorry that your family had to go through such a difficult time with your father’s illness, and now knowing her more and knowing from Dr. Miller as well that she has always deferred her decisions to you, I feel comfortable with your decision. But I am concerned that, in my limited experience, I’ve seen that as patients get sicker and sicker, as their bodies respond to disease, they kind of know that there’s something wrong. So how do you plan to tell her—like when she will get sicker and maybe she’ll have more bleeds, more blood in her stool, and be weaker—how will you address that as we


progress in the disease? Because I’m concerned about how will she react and how will we deal with her concerns.

Bioethics mediator: That is something that we’re going to need to talk about, because her condition is going to change over time and obviously we have Dr. Miller, who knows her very well and will help us, all of you, address this, but I guess an important question is, What happens if your mom asks one of the staff, “Do I have cancer?”

Jeffrey Gold: I think at that point, if it’s a physician like Dr. Miller who knows her well, that it is in his jurisdiction to say, “Let’s talk with your family about this.” My sense of my mom is when she’s ready to ask that question, she’ll ask us and we’ll figure out how to deal with it. But I don’t want someone else who doesn’t know her well telling her that.

Bioethics mediator: Dr. Miller, how do you feel about that?Dr. Miller: Well, I agree. I certainly worry about the possibility that she either

might ask the staff, someone other than me, or more likely that the staff would misinterpret something she is saying as a request for the diagnosis when she’s not really asking for that information. I want to make sure that the staff does not dump the diagnosis on her when she is alone. Please, please, please, don’t do that. If you feel that you’ve gotten a direct question, what we need to do is all go there—I, as her doctor who have known her for a long time, will be the one to open that discussion and her family has to be there in the room at the same time, and we’ll all explore what she really wants to know. If she changes her mind and does want to know, then she will know. But I don’t expect that to happen.

Bioethics mediator: Let me then just ask—and maybe we should talk about this. We have a hospital that’s 24/7, and I know that we try to communicate with everyone—how do we think we’re going to be able to do this? To make sure that all the staff members know exactly what to do?

The mediator realizes that the group is nearing agreement, but there are details that need to be tied down before they end the session. It is tempting to skip this step, especially after a fairly long, tense conversation. This is another time where providing a summary and acknowledging that the participants have made signifi-cant progress before moving to test Dr. Miller’s proposal would have been helpful: “So I think we are moving toward a solution that works for everyone. Dr. Simon and Ms. Wong, it sounds like, after listening to Jeffrey and Eleanor and hearing from Dr. Miller, you can work with not volunteering Mrs. Gold’s cancer diagnosis. I want to thank you for that. And Dr. Miller, what you and Jeffrey and Eleanor are most concerned about is that should the time come—unlikely though you think that is—when Mrs. Gold asks for her diagnosis, you want to be present to support her.” Summarizing this way improves the chance that Dr. Simon and Nurse Wong understand and pass on to the rest of the team the importance of not forcing Mrs. Gold to deal with the word cancer without her support system present.


Dr. Simon: We can make a note of it and put it in the chart as well. Like you have written the “don’t tell her diagnosis” on the door.

There is some sense here that Dr. Simon means this ironically. It might demand a response from the mediator: “Well, it might not require that public an announce-ment. This is a pretty private matter and does not need to be trumpeted publicly. I sense from this comment that one more step might be needed in order to reconcile this case with the usual rule that I articulated previously—that patients who are ca-pable make decisions about their care. What if we agreed that when Mrs. Gold asks questions, we answer that Dr. Miller is putting all of the tests together and will be in to talk with her soon? Then, Dr. Miller, you can judge her level of questioning, decide whether to call her family in, and tailor the level of response that is needed.” This summary places the responsibility and the authority in the hands of the at-tending physician, who is the central figure in the doctor-patient relationship and the one with the experience to direct the patient’s care—and a big part of that care is the sharing and the interpretation of information.

Nurse Wong: I also, as the head nurse, want to be very clear that we will give her the best care possible without revealing the diagnosis, and I will discuss this with my staff.

Jeffrey Gold: That’s your job, not my job.Eleanor Katz: We appreciate that, we really do appreciate that you’ve heard us

and listened to us, and we imagine a hospital such as yours will be able to get that communication across.

Bioethics mediator: I think we should be talking a little bit more about whether or not it’s time to bring the palliative care service into this case. Is it something that you would find acceptable?

Again, good following up on details of what happens now. It would have been bet-ter to raise the palliative care consult issue as a question (“Should we be talking a bit more about whether to bring in palliative care?”) instead of as a recommenda-tion (“I think we should be talking about . . .”).

Jeffrey Gold: [To Dr. Miller] Again, I really respect your opinion and how you’ve managed her care so far, and so that’s the medical recommendation?

Dr. Miller: Yes. I guess this meeting is the first that we’re directly addressing that question. I’ve just gotten the results of the colonoscopy and scanning test, but yes, absolutely, and I certainly have the best palliative care team anywhere to help the patient not suffer and live the rest of her life as discomfort-free as possible.

Eleanor Katz: You will stay her doctor even if that team is coming in?Dr. Miller: There is no question that I will remain her doctor and will remain

the primary decision maker, but I really need their help and we would want them to be involved.


Bioethics mediator: Do you have any other questions about her treatment now or potential for discharge and planning? Are there any other questions that we could address here?

Eleanor Katz: I think for now, it’s a lot for us to synthesize, this is new. I know you’ve done this many times, but for us this is the first time that we’re doing this, so I think we need to sit and to think about this. I think I can speak for my brother, that we certainly appreciate the time you’ve given us and that you’ve heard us out.

Bioethics mediator: [To the nurse] For the staff, you’ll be the point person for them to go to?

Nurse Wong: Yes.Bioethics mediator: OK. So before we leave, I just want to thank all of you

for coming and talking about Mrs. Gold; I think that we’re at a good point. We’ve tried to reassure you that we care about her, we care about her care, Nurse Wong and Dr. Miller will do their very best to have the staff avoid the direct conversations about cancer with your mother, and we’re going to ask the palliative care team to come to talk with you and with your mother so that we can assess what her needs are now and make some plans going into the future. Is that what we’ve agreed to?

The mediator might finally have said something to indicate how unusual this case is and how faithful to general ethical principles the staff action was: “I would like to make one final comment on our discussion. I am comfortable with the decision that we reached, but all of us in medicine know that it is a most unusual conclu-sion. I agree with the sense of this discussion that in this matter at this time in the care of Mrs. Gold, this makes the most sense. However, it really is at odds with Mrs. Gold’s legal rights and it is quite an exception to the rules that we use to train staff. So I want to assure the staff that their instincts and training were excellent and that this case is a substantial departure from our usual procedures. “Finally, is it OK if Dr. Miller puts the question to Mrs. Gold and asks her if it is all right for him to organize the tests and talk to her about them? Is it all right if you children talk with him about any questions about her care?” (It would not be surprising if this mediator move triggered a bit more discussion of some slightly new issues.)

Eleanor Katz: Uh-huh.Dr. Simon: I’ll put in the consult today.

Further Discussion

In general, in a case like this where there is disagreement within the medical team, the bioethics mediator meets with the staff first (as discussed in Chapter 4) to see whether their differences can be resolved and, if not, to help them agree about how to present their disagreement to the family.


This case highlights the tension between the bioethics principle of autonomy and the decision-making norms of some families regarding serious health matters. Many people find it hard to imagine how not knowing about one’s condition could lessen suffering, in an age where sophisticated medical information is available at the stroke of a computer key. While honoring the principle of autonomy, it is also important to recognize that in many cultures families share or take over from their loved ones the burden of both knowledge and decision making about serious medical problems. As long as the patient retains the ability to change her mind and request information, the decision to delegate her autonomy is ethically valid. The problem in this case is that Mrs. Gold never explicitly delegated this re-sponsibility—that is what the mediator and members of the team are struggling with. A principled resolution requires that mediation consensus lie within accepted legal and regulatory limits. It is perfectly acceptable for a patient to delegate au-thority to decide, thus opting for supported or lessened autonomy, but this del-egation must be known to take place if a safe harbor for decision making is to be established outside the usual rules. Here there was not quite an explicit delegation.

291

Afterword

A well-structured mediation program can resolve a current dispute and also prevent future problems. During often emotional and contentious discussions, the bio-ethics mediator acts as both coach and model while responding to highly charged statements and strongly held views. The way he or she asks questions, summarizes to show all participants that they have been heard, and rephrases statements to make it easier for participants to listen demonstrates for members of the treatment team how they might have communicated more clearly (or listened more atten-tively). In addition, mediators may provide explicit coaching for the team members as they discuss the history of the case, help them plan how to communicate issues and information to the patient or family, and consider how to avoid similar prob-lems in the future. Another benefit of mediation is that the mediator and the team members may become aware of policies or practices that inadvertently led to, or at least con-tributed to, the conflict and can bring those insights to the organization’s leaders. Finally, by analyzing statistics about bioethics disputes, the hospital management may identify patterns that indicate the need for more staff training or identify a unit that is not functioning well. Clinical ethics consultants who have mastered mediation skills will find those skills useful in undertaking less-formal interventions and in addressing problems at an early stage—especially problems with communication—before a full-scale conflict develops. And as hospital staff, by participating in mediations, gain trust in the mediators and respect for their skills, they will develop the habit of consulting the mediators when they see conflicts begin to arise. The cultural and ethnic makeup of our society is becoming more diverse at the same time that advances in medicine are increasing both the complexity of treat-ment and uncertainty about treatment. Therefore, establishing a process in medi-cal decision making for airing and understanding different points of view and for resolving differences over bioethical disputes—and those issues where all sorts of conflicts are hung on a bioethics peg—becomes more and more important. Media-tion offers the necessary structural supports for such a process. Mediators provide a setting in which cultural values can be voiced and honored, in which differing patterns in language and communication can be identified and bridged, and in which the voices of patients and families from traditionally disem-powered groups can be amplified. Differences in age, gender, professional training, language, religion, level of education, and preference for either a contextual frame-work or a linear argument can all complicate communications among patients, families, and medical personnel and contribute to miscommunication and conflict.


In bioethics mediation, these differences can be identified and worked through until comfortable agreement is reached about a plan of care. One of the values of mediation in resolving bioethics disputes lies in its depar-ture from the conflict, confrontation, and malpractice suits that are such disastrous elements of today’s health care system. Mediation can produce better-quality and more enduring decisions. Furthermore, clarifying facts and options for care is a critical step in delivering high-quality patient care. Fear of possible future legal con-sequences, lack of clarity about legal and ethical analyses, and uncertainty about the decision-making process preclude the clear thinking and consideration that excellent patient care requires. We will have to await the outcome of studies on the effectiveness of mediation as compared with the success of imposed solutions to demonstrate that these mediated conflicts produce patient care plans that are com-fortable for all. For now, anecdotal reports must suffice, and those indicate that the process of mediating bioethics disputes leaves patients, families, and staff satisfied that, given the medical constraints, what they are doing is best for the patient. It is our hope that the model we present in Bioethics Mediation will lead to in-creased collaboration between the medical and mediation worlds while continuing to help patients, families, and their health care providers craft shared solutions to medically and emotionally complex health care decisions.

311

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315

Suggested Reading on Mediation

For a full bibliography on clinical ethics consultation, see ASBH, in press. Since there is no comparable compilation for mediation literature as it relates to bio-ethics, we here focus on those sources.

Books

Ariely, D. 2008. Predictably Irrational: The Hidden Forces That Shape Our Decisions. New York: HarperCollins.

Arrow, K., R. H. Mnookin, L. Ross, A. Tversky, and R. Wilson, eds. 1995. Barriers to Conflict Resolution. New York: W. W. Norton.

Babcock, L., and S. Laschever. 2003. Women Don’t Ask. Princeton, NJ: Princeton University Press.Bowling, D., and D. A. Hoffman. 2003. Bringing Peace into the Room. San Francisco: Jossey-Bass.Bush, R. A. B., and J. P. Folger. 1994. The Promise of Mediation: Responding to Conflict through

Empowerment and Recognition. San Francisco: Jossey-Bass. Chew, P. K. 2001. The Conflict and Culture Reader. New York: New York University Press.Cialdini, R. 1993. Influence: The Psychology of Persuasion. New York: William Morrow. Costantino, C., and C. Merchant. 1996. Designing Conflict Management Systems. San Francisco:

Jossey-Bass.Deutsch, M. 1973. The Resolution of Conflict. New Haven, CT: Yale University Press. Deutsch, M., and P. T. Coleman, eds. 2006. The Handbook of Conflict Resolution: Theory and

Practice. 2nd ed. San Francisco: Jossey-Bass. Dubler, N. N., and L. J. Marcus. 1994. Mediating Bioethical Disputes. New York: United Hospital

Fund.Fadiman, A. 1998. The Spirit Catches You and You Fall Down: A Hmong Child, Her American

Doctors, and the Collision of Two Cultures. New York: Farrar, Straus and Giroux. Fisher, R., and W. Ury. 1981. Getting to Yes: Negotiating Agreement without Giving In. New York:

Penguin. Frenkel, D., and J. Stark. 2007. The Practice of Mediation: A Video-Integrated Text. New York: Aspen

Law and Business. Golann, D. 2009. Mediating Legal Disputes: Effective Strategies for Neutrals and Advocates. Chicago:

American Bar Association. Lax, D. A., and J. K. Sebenius. 1986. The Manager as Negotiator: Bargaining for Cooperation and

Competitive Gain. New York: Free Press. Marcus, L. 1995. Renegotiating Health Care: Resolving Conflict to Build Collaboration. San Francisco:

Jossey-Bass.Mnookin, R. 2010. Bargaining with the Devil. New York: Simon and Schuster.Moore, C. W. 2003. The Mediation Process: Practical Strategies for Resolving Conflict. 3rd ed. San

Francisco: Jossey-Bass. Shell, G. R. 1999. Bargaining for Advantage: Negotiating Strategies for Reasonable People. New York:

Viking. Stone, D., S. Heen, and R. Fisher. Difficult Conversations. 2000. New York: Penguin Books.


Susskind, L. E., S. McKearnan, and J. Thomas-Larmer, eds. 1999. The Consensus Building Handbook: A Comprehensive Guide to Reaching Agreement. Thousand Oaks, CA: Sage.

Ury, W. L., and J. M. Brett. 1991. Getting Past No. New York: Bantam Books.

Journals

Alternatives. Published monthly by CPR Institute for Dispute Resolution, www.cpradr.org. Many of the best articles are available online from Wiley Online Library, Lexis, and Westlaw.

Harvard Negotiation Law ReviewJournal of Dispute Resolution. University of Missouri–Columbia School of Law.Mediation Quarterly. Sponsored by the Association for Conflict Resolution.Negotiation Journal. Published in cooperation with the Harvard Program on Negotiation, an Inter-

University Consortium, Kluwer Academic/Plenum Publishers. Ohio State Journal on Dispute Resolution

Websites

www.ACResolution.orgwww.crinfo.org www.Mediate.com

317

active listening role-plays, 242 working hypotheses and, 66adolescent and teenage patients case studies, 17–20 decision-making capacity, 117 role-plays, 189–96advance directives, 27, 34, 60–61, 111–12, 270,

301. See also health care proxies; living willsadvised consent, 53. See also informed consentagreements to mediate, 28–29Albert Einstein College of Medicine, xviiAmerican Society for Bioethics and Humanities

(ASBH), xiii, xix, 8Annis, George, 124artificial hydration and nutrition, 118–19assent, 113assisted suicide case studies, 45–47 doctrine of double effect and, 121 Kevorkian and, 46attribution theory, 90

BATNA (best alternative to a negotiated agreement), 36

beneficence case studies, 147 defined, 8, 35 vs. patient autonomy, 127–28 See also best interest standardbest interest standard conflict and, 158 defined, 107, 113–14 role-plays, 179–88, 227–52 See also beneficencebioethics conflict and, 7 defined, 8–9 See also beneficence; distributive justice;

nonmaleficence; patient autonomybioethics mediation vs. classical mediation, 21–30, 55, 56, 58, 60,

69, 76 defined, 98 goals, 12–14, 16, 56, 91 limitations of, 15, 23

Montefiore Bioethics Consultation Service and, xiv–xv, xvi

successful outcome, 70 See also specific stages and techniquesbioethics mediators vs. consultants, 15–16 in-house vs. independent, 13, 22–23, 37–38,

39–40, 159 required knowledge, 33–37Blustein, Jeffrey, 111brain death, 114, 126–27Bush, Robert A. Baruch, 87

Cardozo Law School, xviicaucuses case studies, 144 defined, 88 functions, 28, 54 hospital setting and, 158–59 with medical team, 48–49, 56, 58, 226, 249,

288, 298 with patients and families, 49–50, 53, 144 proposals and, 90 purposes of, 88 reality testing and, 89Certificate Program in Bioethics and Medical

Humanities, xviiCharon, Rita, 97chart notes case studies, 138, 152–54, 155–56 contents, 29–30, 299–300 examples, 105–11, 301 importance, 38–39, 95–97 legal implications, 97–98 templates, 98–104, 300children assent and, 113 decision making and, 119, 126 See also adolescent and teenage patientsclarifying questions defined, 80 role-plays, 217, 218, 220, 233, 235, 245, 257,

280clinical ethics consultation (CEC) characteristics, 294 defined, 9–10, 98, 296, 297

IndexPage numbers in bold refer to figures.


clinical ethics consultation, continued mediation and, xiii, xv–xvi, 1, 14, 95–96 standards, 298–306 statistics, xvii–xviii training and accreditation, xv, xviii–xix, 293–

94, 303–5Clinical Ethics Credentialing Project (CECP),

294–96 aims, xix–xx definition and characteristics of CEC, 294,

296, 297 funding, xix, 309 initial CEC chart review, 307–8 members, 295 standards for CEC, 298–306closed questions, defined, 80co-mediation, 40, 162competence, 51, 110, 117. See also decision-

making capacityconfidentiality bioethics mediation and, 12, 25–26, 28–29,

88, 114–15 chart notes and, 299 mediation and, xvi, 11–12, 28, 56 opening statements and, 55, 56 role-plays, 222, 225–26conscientious objection, 115–16consumer movement, 7Core Competencies for Health Care Ethics

Consultation (ASBH), xiiicultural values case studies, 147–56 decision making and, 116–17 mediators and, 60, 291 role-plays, 189–96 truth telling and, 130, 279–80, 289

decision-making capacity case studies, 83–85 defined, 51, 84, 107, 110, 117–18 See also advance directives; best interest

standarddelegated autonomy, 111demanding families, 119–20discharge planning role-plays, 68, 165–71 social workers and, 7distributive justice, 8, 35–36DNR (do not resuscitate) orders case studies, 6–7 decision making and, 120–21 defined, 120 role-plays, 179–88, 189–96, 197–202, 227–

52, 253–72double effect doctrine, 121Dubler, Nancy, xvii, xx, 71

empowerment, 87ethical principles, 64–65, 102–3ethics committees, 8–9, 40, 302–3

false choices, 122. See also medical futilityfamilies caucuses with, 49–50, 53, 144 decision making and, 51–52 feelings and emotions, 25, 64, 298–99 introducing patients, 57–58, 242, 256, 259,

275, 298–99 support for, 52, 71–72 See also advance directives; language; power

and power imbalancesfeelings and emotions of families, 25, 64, 298–99 of medical team, 64, 72 summarizing and, 77–78Fisher, Roger, 36Fleisher, Marc, 38Folger, Joseph P., 87follow-up, 29, 71–72Fox, Ellen, xvii–xviii, xix

Getting to Yes (Fisher and Ury), 36

Hastings Center Report (Dubler et al.), xx, 10health care proxies, 27, 52, 61, 71, 112, 145, 301Health Insurance Portability and Accountability

Act (1996), 115

information, 61–66, 73–74. See also medical facts; power and power imbalances

informed consent vs. assent, 113 defined, 52–53, 122–23 role-plays, 203–11, 273–89interests, 62–63, 66introductions, 54–55intubation, 72issues, 62–64, 66, 86, 145–46

Joint Commission on Accreditation of Healthcare Organizations, 8

joint sessions, defined, 54. See also caucuses

Kevorkian, Jack, 46

labels, 81language in chart notes, 102, 104, 299 families and, 60, 255 labels, 81 role-plays, 216, 224–25, 238, 240, 243, 248,

255, 266, 270–71

Index 319

use of the words death/dying, 4–7, 264, 271 use of we, 260legal principles, 64–65, 302. See also principled

resolutionsLiebman, Carol, xviiliving wills case studies, 144 defined, 27, 111–12, 301 interpretation of, 60–61, 144, 271 role-plays, 197–202, 253–72 statistics, 270location case studies, 148 hospital setting and, 29, 53–54, 98loss aversion, 90

Marcus, Leonard, xvMatz, David, xvmed-arb (mediation-arbitration), 15–16mediation clinical ethics consultation (CEC) and, xiii,

xv–xvi, 1, 14, 95–96 confidentiality and, xvi, 11–12, 28, 56 defined, 11–12 goals, 87 See also bioethics mediationmedical facts bioethics mediation and, 26–27 chart notes and, 102 gathering information about, 47–48 presenting and refining, 58–61medical futility defined, 123–25 role-plays, 179–88, 252Montefiore Medical Center Bioethics Consultation Service, xiv–xv, xvi Certificate Program in Bioethics and Medical

Humanities, xvii See also Clinical Ethics Credentialing Project

(CECP)Myers, Sarah, xvii–xviii, xix

narrow questions defined, 80 role-plays, 219, 235nonmaleficence, 8, 35

open-ended questions defined, 80 role-plays, 217, 232, 235opening statements contents, 55–57, 88 role-plays, 216, 228–29, 254, 274 subsequent sessions and, 69

pain control case studies, 45–47, 138 dying and, 46, 121 role-plays, 189–96, 246–47, 284–85palliative care case studies, 17–20 role-plays, 189–96 shift to, 121–22, 126participants attending physicians, 41 case studies, 137 chart notes and, 98, 101–2 choice of, 52 introductions of, 54–55 sequence of speakers, 58, 230–31, 254–55,

275–76 statements by, 61patient autonomy, 8, 34–35, 127–28. See also

advance directivespatients CE consultants and, 298 chart notes and, 101–2 as customers, 7 dying and, 282–83 informed consent and, 52–53, 113, 122–23 introductions of, 57–58, 242, 256, 259, 275,

298–99 See also decision-making capacitypatient safety movement, xx, 293patients’ rights movement, 7Pearlman, Robert A., xvii–xviii, xixPellegrino, Edmund, 124policy issues, 72Powell, Tia, xvii, 145power and power imbalances case studies, 83–85 emotional status and, 13–14, 24–25 health care professionals as repeat players and,

23 information and, 24–25 mediator’s role and, 44, 81–83, 158 role-plays, 238–39 sequence of speakers and, 255 STADA and, 75principled resolutions case studies, 138–39 chart notes and, 30 defined, 14–15, 302 legal principles and, 24, 70, 271 as recommendation to attending physicians, 96problem solving, 66–68proposals by participants, 86–87 responses to, 90 role-plays, 222


questions and questioning techniques functions and types of, 79–81, 85–86 multiple questions, 218, 241 role-plays, 241 See also specific types of questions

reactive devaluation, 88, 90reality testing caucuses and, 88, 89 defined, 89 role-plays, 223–24, 237, 248, 259, 265reasonable accommodation, 114, 127recognition, 87reframing defined, 78–79 role-plays, 216, 223, 235–36, 278refusal of treatment case studies, 137–38 defined, 116 religious values and, 126 role-plays, 179–88, 227–52religious values case studies, 6, 147–56, 153 role-plays, 189–96 treatment and, 114, 126–27 See also conscientious objectionrequests for bioethics mediation case studies, 5, 147 chart notes and, 152 requesters, xvi, 40–41, 47, 74, 231, 274 responding to, 298resolution, 68–70Riskin, Leonard, 24risk managers mediation and, 16, 39, 237, 240 role-plays, 237–38, 239–40role-plays feedback, 162–63 training and, 161–62 See also under specific topicsrole reversal, 89

scarce resources allocation of, 18–19, 63–64, 112–13, 114,

147 case studies, 18–19, 46, 147, 157Schneiderman, Lawrence, 125Shaw, Margaret, 61silence, 87–88STADA (sit, tell, admire, discuss, ask) case studies, 4

caucuses with care team and, 58 defined, 74–75 See also strokingstages of bioethics mediation, 43–44 assessment and preparation, 47–54 beginning the mediation, 54–57 case studies, 44–47 follow-up, 29, 71–72 gathering information, 61–66, 73–74 introducing the patient, 57–58, 242, 256,

259, 275, 298–99 presenting and refining the medical facts,

58–61 problem solving, 66–68 resolution, 68–70Stern Hyman, Chris, 38stroking defined, 75, 87 role-plays, 163, 234, 254, 262 See also feelings and emotionssubstituted judgment, 112, 128, 301summarizing functions, 255, 278 interests and issues in, 61–64 power and power imbalances and, 25 purposes of, 75–78 role-plays, 221, 224, 233–34, 240–41, 251,

255, 257–58, 278, 281–82, 286 subsequent sessions and, 69

teenage patients. See adolescent and teenage patients

therapeutic exception, 123, 128–29time constraints, 26, 50truth telling cultural values and, 130, 279–80, 289 informed consent and, 129–30 patients and, 282–83 role-plays, 173–78, 203–11, 215–26, 273–89

Uniform Determination of Death Act (1980), 114uninvited consultant, 41United Hospital Fund, xvUry, William L., 36

withdrawing and withholding treatment, 121–22, 130, 240. See also artificial hydration and nutrition

working hypotheses development of, 64, 65–66, 145–46 role-plays, 196, 237–38, 251–52

bioethics mediation: a guide to shaping shared solutions, revised and expanded edition

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