improving end of life care: why has it been so difficult?

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On the cover:At Night, © Deidre Scherer 2000, from the series Surrounded by Family and Friends, 36 x 48 inches, fabric and thread Photo: Jeff Baird

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ABOUT

THE HASTINGS CENTER

A HASTINGS CENTER

SPECIAL REPORT

WHY HAS IT BEEN SO DIFFICULT?

Adrienne Asch

Robert A. Burt

Daniel Callahan

Nancy Neveloff Dubler

Kathleen M. Foley

Bernard J. Hammes

Susan E. Hickman

Bruce Jennings

Sandra H. Johnson

Joanne Lynn

Alan Meisel

Alvin H. Moss

Thomas H. Murray

Susan W.Tolle

IMPROVINGEnd of Life Care

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Contributors

Edited by Bruce Jennings,Gregory E. Kaebnick, andThomas H. Murray

ILLUSTRATION CREDITS

Deidre Scherer's fabric and thread images on aging have appeared inmany exhibitions throughout the United States and the world. Sheis also the recipient of a Fine Arts Fellowship from the Open SocietyInstitute's Project on Death in America. For more information, visitwww.dscherer.com.

The Robert Pope Foundation was established in 1992 to continuethe significant work started by Robert Pope before his death fromcancer at age 35. A talented artist, he completed a large body ofwork showing the cancer experience from the patient’s perspective.Since his death, this collection of paintings has been shown in 91cities worldwide, including medical clinics such as the Mount SinaiMedical Clinic in New York and the Mayo Clinic in Rochester,Minn. The Robert Pope Foundation also promotes educational,artistic, and health-related programs. For more information, visitwww.robertpopefoundation.org.

�� Adrienne Asch is the newly-appointed Edward and Robin Milstein Professor ofBioethics of Yeshiva University-Wurzweiler School of Social Work. In addition to heryears of writing and teaching in bioethics at Wellesley College and Boston University,she brings policy experience through her work with the New Jersey Commission onLegal and Ethical Problems in the Delivery of Health Care, where she worked onissues of protecting vulnerable patients, determination of death, and health care deci-sion-making at the end of life.

�� Robert A. Burt is Alexander M. Bickel Professor of Law at Yale University. Herecently wrote Death Is That Man Taking Names: Intersections of American Medicine,Law, and Culture (University of California Press, 2002). From 1993 to 2003, he servedon the Advisory Board of the Project on Death in America, Open Society Institute, andfrom 1995 to 1997 was a member of the Institute of Medicine Committee on Careat the End of Life.

�� Daniel Callahan, Director of the International Program at The HastingsCenter, has worked with Center research projects on death since its beginning in1969. He is also the author of The Troubled Dream of Life: In Search of a PeacefulDeath (Georgetown, 2000; second edition).

�� Nancy Neveloff Dubler is the director of the Division of Bioethics,Department of Epidemiology and Population Health, Montefiore Medical Center, andprofessor of epidemiology and population health at the Albert Einstein College ofMedicine. She also directs the Bioethics Consultation Service at Montefiore MedicalCenter (founded in 1978) as a support for analysis of difficult clinical cases present-ing ethical issues in the health care setting, using mediation as its process. She iscodirector of the certificate program in bioethics and the medical humanities, conduct-ed jointly by Montefiore Medical Center/Albert Einstein College of Medicine withCardozo Law School of Yeshiva University. Her most recent book is Bioethics Mediation:A Guide to Shaping Shared Solutions, with Carol Liebman (United Hospital Fund,2004).

�� Kathleen M. Foley is an attending neurologist in the Pain and PalliativeCare Service at Memorial Sloan-Kettering Cancer Center. She teaches neurology, neuro-science, and clinical pharmacology at Weill Medical College of Cornell University andholds the Chair of the Society of Memorial Sloan-Kettering Cancer Center in PainResearch. As an expert consultant to the World Health Organization Cancer andPalliative Care Unit and as past director of a WHO Collaborating Center at MemorialSloan Kettering Cancer Center, she chaired three expert committees, resulting in thepublication of three WHO monographs: Cancer Pain Relief (1986), Cancer Pain Reliefand Palliative Care (1990) and Cancer Pain and Palliative Care in Children (1996).

�� Bernard Hammes serves as the director of medical humanities atGundersen Lutheran Medical Foundation and Medical Center. Dr. Hammes has publishednumerous articles on end of life planning, and several private foundations have fund-ed his work. He led the development of the advance care planning programRespecting Choices and is a member of the National POLST (Physician Orders for Life-Sustaining Treatment) Paradigm Task Force.

�� Susan Hickman is on faculty at the School of Nursing and School ofMedicine at Oregon Health & Science University (OHSU), where she researches ethicalissues at the end of life and in the conduct of research. She is also a senior scholarin the OHSU Center for Ethics in Health Care. She is a consultant to the OregonPOLST Task Force and a serves on the National POLST Paradigm Task Force.

�� Bruce Jennings is senior research scholar at The Hastings Center and also

teaches at the Yale University School of Public Health. He served as associate directorof a project that produced the widely cited and influential Guidelines on theTermination of Life-Sustaining Treatment and the Care of the Dying (The HastingsCenter, 1987). He is also cofounder of Decisions Near the End of Life, an educationaland institutional change program on end of life care that has been used in over twohundred hospitals in thirty states. He has served on the boards of directors of boththe National Hospice and Palliative Care Organization and the Hospice and PalliativeCare Association of New York State and has written widely on ethical issues in end oflife, hospice, and palliative care.

�� Sandra H. Johnson holds the Tenet Endowed Chair in Health Care Law andEthics at the School of Law and the Center for Health Care Ethics at Saint LouisUniversity, as well as faculty appointments as professor of law in internal medicine atthe University’s School of Medicine and professor of health care administration at theSchool of Public Health. She directs the Mayday Project on Legal and RegulatoryIssues in Pain Relief at the American Society of Law, Medicine & Ethics and coau-thored Health Law – Cases, Materials and Problems (Thomson West, 1987; now in itsfifth ed.).

�� Joanne Lynn is a geriatrician and researcher who has focused upon seriouschronic illness and the end of life. She is senior natural scientist at the RANDCorporation in Arlington, VA.

�� Alan Meisel is professor of law, Dickie, McCamey & Chilcote Professor ofBioethics, and director of the Center for Bioethics and Health Law at the Universityof Pittsburgh. He served on the President’s Commission for the Study of Ethical Issuesin Medicine and Biomedical and Behavioral Research and participated in the author-ship of its report, Deciding to Forego Life-Sustaining Treatment. He is the principalauthor of the legal treatise, “The Right to Die: The Law of End-of-LifeDecisionmaking.”

�� Alvin Moss is a professor of medicine and the director of the Center forHealth Ethics and Law at the Robert C. Byrd Health Sciences Center of West VirginiaUniversity. He also serves as executive director of the West Virginia Center for End-of-Life Care which oversees the West Virginia POST (Physician Orders for Scope ofTreatment) Program. He has published numerous articles on end of life care—partic-ularly relating to dialysis patients—and has been awarded foundation grants to sup-port research and public outreach on end of life care. Dr. Moss is a member of theNational POLST Paradigm Task Force.

�� Thomas H. Murray is in his second tour of duty at The Hastings Center,this time as President (earlier, he was a research associate at the Center). He has alongstanding interest in how families face moral challenges. His most recent book isThe Cultures of Caregiving: Conflict and Common Ground among Families, HealthProfessionals, and Policy Makers (Johns Hopkins, 2004), edited with Carol Levine. Otherbooks include The Worth of a Child; Healthcare Ethics and Human Values (Universityof California, 1996); and the Encyclopedia of Ethical, Legal, and Policy Issues inBiotechnology (Wiley, 2000), edited with Maxwell J. Mehlman.

�� Susan Tolle is a professor of general internal medicine and geriatrics atOregon Health & Science University (OHSU) as well as cofounder and director of theUniversity’s Center for Ethics in Health Care and Cornelia Hayes Stevens Chair. Dr.Tolle has participated in two National Institutes of Health studies and has been prin-ciple investigator on thirty-nine foundation grants focused on end of life care, withcontinuous funding for two decades. She serves on the Oregon POLST Task Force andthe National POLST Paradigm Task Force.

Authors

Table of Contents

2Preface • Bruce Jennings

5Death:“The Distinguished Thing” • Daniel Callahan

9The End of Autonomy • Robert A. Burt

14Living Long in Fragile Health: The New Demographics Shape End of Life Care • Joanne Lynn

19Conflict and Consensus at the End of Life • Nancy Neveloff Dubler

26Hope for the Future: Achieving the Original Intent of Advance Directives

Susan E. Hickman, Bernard J. Hammes, Alvin H. Moss, and Susan W. Tolle

31Recognizing Death while Affirming Life:

Can End of Life Reform Uphold a Disabled Person’s Interest in Continued Life? • Adrienne Asch

37Making Room for Dying: End of Life Care in Nursing Homes • Sandra H. Johnson

42The Past and Future of Palliative Care • Kathleen M. Foley

47The Role of Litigation in End of Life Care: A Reappraisal • Alan Meisel

52The Quest to Reform End of Life Care: Rethinking Assumptions and Setting New Directions

Thomas H. Murray and Bruce Jennings

58Selected References

60End of Life Care Resources

S2 November-December 2005/HASTINGS CENTER REPORT

Preface

A t the time of the Karen Ann Quinlan case in1975, the law and ethics of forgoing life-sustain-ing treatment were terra incognita. By 1990, the

Nancy Beth Cruzan case, the federal Patient Self-Deter-mination Act, and court rulings and statutes in all fiftystates had created a widely accepted framework for deci-sion-making near the end of life. Establishing this frame-work is one of the great accomplishments in bioethics.

Or so goes one common story. Expanded a little, thestory goes like this: Thirty years ago, awareness began togrow that the experience of dying (for the individual, forthe family, and often for health caregivers) was often ahorror. Sentiment began to grow behind a movement toimprove end of life care, and this reform movement wasbased on the belief that the horror of death was avoidablebecause it does not reside in dying or death per se, but ina poorly managed dying. What needed to be done, the re-formers saw, was to look death in the face and wrest con-trol over dying from doctors and hospitals, with theirpowerful but mindless drugs and machines—virtual loosecannons that could be as burdensome for some as theywere beneficial to others. If lack of control, the technolog-ical imperative, and unrelieved pain and suffering arewhat make dying fearful, then the key to improving endof life care is twofold: First, we should enlist the law toempower persons to dictate the terms of their own med-ical care at the end of life (via constitutional rights andlegally authorized advance directives). Second, we shouldenlist medicine to improve its skill at treating pain andsuffering (financing for hospice and professional educa-tion in palliative care). If we could do these two things(the reformers hoped and believed), ordinary people andtheir families—the intended beneficiaries of all thiswork—would embrace the reforms with open arms, insiston making their own medical decisions at life’s end, andcomplete advance directives. By 1990, although work re-mained to be done to bring this agenda to fruition, theagenda itself, at least, was settled.

This story is partly true, and some of the reformers’ vi-sion has been realized. Today people have much more

control of their medical care at the end of life, the tech-nological imperative has been bridled to some extent, andpalliative care is taken more seriously in the medical main-stream. Over 700,000 people who die each year receivehospice services for at least a short period of time beforedeath; and roughly three-quarters of all deaths in hospitalsnow come after some explicit decision has been made toforgo the use of some type of potentially life-prolongingintervention. Many people are fortunate enough to diewith pain kept to a minimum, surrounded by the peoplethey love, in a setting attentive to their spiritual, emotion-al, and physical needs. That is progress.

But while the story is partly true, it is altogether toofacile and simplistic. What progress has been made is nowin danger of being undone. The framework of principlesfor legitimate decision-making at the end of life built bythe courts, the legislatures, and in the professional andethical literature has not been embraced—indeed, it hasbeen rejected, at least in large part—by increasingly pow-erful and vocal minorities; and political support for thisframework, as well as its intellectual justification, seems tobe eroding. This is a critical problem. It points to flaws inboth our concepts and our institutions. Important as-sumptions—about autonomy, quality of life, trust, familydynamics, and the motivations of professionals andlaypeople—need to be rethought. Our systems of deci-sion-making and care delivery near the end of life need tobe redesigned.

The topic of end of life care came into its own duringthe 1990s. The decade began with the Cruzan case, theSupreme Court’s first landmark ruling on end of life care,in which the Court affirmed the constitutional right torefuse life-sustaining medical treatment. This was quicklyfollowed by passage of the federal Patient Self-Determina-tion Act, and of durable power of attorney for health carestatutes in many states, all stressing the importance ofconsidering each person’s preferences about end of lifecare in advance. Public education efforts to encourage theuse of advance directives sprang up nationwide.

In the mid-1990s, the Study to Understand Prognosesand Preferences for Outcomes and Risks of Treatments(SUPPORT) rigorously documented the alarming extentto which aggressive life-prolonging measures were still

Bruce Jennings, “Preface,’” Improving End of Life Care: Why Has It Been SoDifficult? Hastings Center Report Special Report 35, no. 6 (2005), S2-S4.

S3SPECIAL REPORT/ Improving End of Life Care: Why Has It Been So Difficult?

being used in situations where they were either medicallyfutile, unwanted by patients and families, or both. Evenconcerted efforts to improve communication betweenphysicians and dying patients did not stem the technolog-ical momentum of life-prolonging treatments in thecountry’s major medical centers. Moreover, a large pro-portion of families reported that the patient had spent thelast two or three days of life in severe, unrelieved pain. Aprecursor to this supplement, Dying Well in the Hospital:The Lessons of SUPPORT, which was published in theHastings Center Report exactly ten years ago, contains athorough discussion of this important research.

Growing fears of losing control of care at the end oflife, of becoming dependent on machines, of being anemotional and financial burden to one’s family, and ofsuffering due to inadequate treatment of pain and othersymptoms—all these fears and more led to a growinggrassroots movement in the late 1990s to legalize “physi-cian assisted suicide” (PAS), or what some prefer to call“physician aid in dying.” The situation was dramatized bythe public defiance of the law by Dr. Jack Kevorkian, thecontroversial Oregon referendum that legalized PAS inthat state, and the Federal Appeals Court rulings in theSecond and Ninth Circuits that temporarily struck downexisting state laws against PAS before the Supreme Courtoverturned those appellate rulings in 1997. But while itrefused to strike down existing state laws prohibiting PAS,the Court also decided not to interfere with the Oregonlaw permitting it, and it left the constitutional door opento other states to change their laws on PAS as they saw fit.Controversy over PAS in Oregon still continues, however,as federal officials in the Bush administration have soughtto undermine it through regulatory sanctions againstphysicians. Meanwhile, referenda to legalize PAS havefailed at the ballot box in some other states. Dr. Kevorkianis currently serving a prison sentence.

Even as these controversies monopolized most mediaattention, a less contentious but arguably more significantlong-term educational and institutional effort was underway, led by several groups seeking to improve end of lifecare and to address the concerns of the general public.Chief among them was hospice, which first appeared inthe United States in the 1970s but which became morewidely known and utilized in the 1990s. Efforts by hospi-tals and community groups to educate consumers con-cerning the use of advance directives also became wide-spread. Some educational programs have been aimed athealth care professionals, whose formal training had oftennot included death and dying or palliative care. Amongthese programs is “Decisions Near the End of Life,” creat-ed by the Education Development Center and The Hast-ings Center with support from the W.K. Kellogg Founda-tion and used by approximately two hundred hospitals inthirty states. Other educational programs focused on con-

sumers and communities were sponsored by groups suchas the American Association of Retired Persons and vari-ous state-based coalitions and consortia, including the so-called community health decisions groups.

The health care professions themselves have also paidgrowing attention to improving the standard of practicein pain management and palliative care. A landmark In-stitute of Medicine study, Approaching Death, proposedimprovements in the quality of palliative care. As the essayin this collection by Kathleen Foley reminds us, specialistsin this area have long argued that basic medical educationand general skill and knowledge within medicine are notsufficient to meet patient needs; pain has been systemati-cally and persistently undertreated in mainstream Ameri-can health care. New curricula for medical and nursingeducation have been developed and implemented; amajor educational program of the American Medical As-sociation, known as EPEC, trains physicians throughoutthe country in order to encourage better advance careplanning with patients and palliative care skills, and theAmerican Nurse’s Association offers a parallel programcalled ELNEC. Other more specialized educational pro-grams have followed suit, such as EPEC-O, sponsored bythe American Society of Clinical Oncology for oncolo-gists, and APPEAL, sponsored by the Institute to ImproveEnd of Life Care for African Americans. In addition, CorePrincipals of Palliative Care have been adopted by nine-teen national professional organizations to include in theirteaching programs. The Veterans’ Healthcare Administra-tion has developed palliative care teams and leaders, mak-ing palliative care integral into its health care system. Andthe Center to Advance Palliative Care, based at MountSinai Medical Center in New York City, provides consul-tation and support for health care facilities seeking to es-tablish palliative care consultation services throughout thecountry.

Finally, in the past fifteen years, many private founda-tions and grassroots groups have pressed for improve-ments in end of life care. Among the foundations notablefor their efforts on end of life care are the Open SocietyInstitute (through its Project on Death in America), theNathan Cummings Foundation, the Mayday Fund, theNational Hospice Foundation, the Hospice Foundationof America, and the Arthur Vining Davis Foundations, toname just a few. The Robert Wood Johnson Foundation,funder of the SUPPORT study, has been a leader in thiseffort. The Last Acts Partnership, a nationwide coalitionof groups working on many fronts during the 1990s, wascreated under its auspices, as was the successor to LastActs, an initiative called Caring Connections, organizedby the National Hospice and Palliative Care Organiza-tion. The Robert Wood Johnson Foundation also fundedseveral programs on innovative partnerships betweenproviders and community groups, and numerous state-


based initiatives to reform laws and regulations and to im-prove end of life care. At the grassroots level, new organi-zations have been formed, such as Americans for BetterCare of the Dying.

With all that has been accomplished, major challengesremain. The essays in this supplement explore the concep-tual and systemic flaws in end of life care reform since themid-1970s. They also offer suggestions about how tobridge the gap between, on the one hand, the legal andethical framework now widely but not universally em-braced, and, on the other, the real world of decision-mak-ing and care on the ground. Much of the conceptual reex-amination has to do with concerns about the concept ofautonomy, the dynamics of families, and the factors ofrace, class, and ethnicity (see the papers by Callahan, Burt,Dubler, Hickman and colleagues, and Meisel). Some ofthe papers consider possible systemic reforms that wouldlessen the weight placed on explicit, tragic individualtreatment decisions. One possible reform is to design sys-tems of care to satisfy the noncontroversial needs of peo-ple whose trajectories toward death follow one of the sev-eral well-known patterns (Lynn). Another is to developbetter continuity of care across a longer period of time be-fore death (Lynn, Foley). Essential to any further progressin end of life care reform is improved understanding andcommunication—between the hospice and palliative carecommunities and mainstream hospital-based medicine(Foley), between long-term care facilities and professionals

(Johnson), and between disability advocates and patient’srights advocates who now find themselves unnecessarily atodds over fundamental issues such as quality of life andthe adequacy of long-term care services (Asch). The con-cluding essay (Murray and Jennings) brings togethermany of the themes identified in the other papers and for-mulates lessons and recommendations that will help endof life care build on its successes while avoiding the repe-tition of past mistakes.

This supplement was made possible by funding fromthe Robert Wood Johnson Foundation, and we gratefullyacknowledge their support and their continuing leader-ship in improving end of life care for all Americans. Wealso appreciate the collegiality and cooperation of the au-thors who contributed to this collection and of the manypeople who worked with us to develop and produce thissupplement, including Michelle Larkin of the RobertWood Johnson Foundation, Nancy Reller and JaniceLynch Schuster of Sojourn Communications, and Hast-ings Center editorial staff Gregory Kaebnick, Nora Porter,and Joyce Griffin. Hastings Center staff members StacySanders and Ann Mellor also provided valuable assistance.In addition to the authors, several individuals attended anadvisory meeting to review the issues and to plan this sup-plement, including Christine Mitchell, Julis Landwirth,Jonathan Moser, David Tolle, Scott Long, and Todd Cote.

—Bruce Jennings


Death: “The Distinguished Thing”

b y D A N I E L C A L L A H A N

F aced with his imminent death, Henry James is re-ported to have said, “So it has come at last, thedistinguished thing.” Distinguished? That seems

an odd term to use, but James was a master at choosingthe right word, and he may have seen better than most ofus what death is all about. My dictionary defines “distin-guished” as “having an air of distinction, dignity, or emi-nence.” Yet there is dissent from that judgment. The latetheologian Paul Ramsey contended that there could beno death with dignity. Death is too profound a blow toour selfhood, to everything good about our existence.James or Ramsey?

For at least forty years now—Ramsey notwithstand-ing—a massive effort has been under way to bring aboutdeath with dignity. The leading techniques have been theuse of advance directives, hospice and palliative care, andimproved end of life education for physicians, nurses,and other health care workers. As the Hastings Center Re-port 1995 special supplement on the SUPPORT studyindicated, that effort achieved only a mixed success; adecade later, this report describes progress since then, butpoints to the long road for creating real and lasting im-provement.

There has always been some ambiguity in that effort.James and Ramsey, for instance, seem to be talking aboutthe meaning and place of death in human life, not aboutwhat kind of care is desirable at the end of life. Ramseywas no opponent of those efforts to improve end of lifecare. He objected to the sentimentalizing of death: even

the best end of life care could not sugarcoat death’s fun-damental offense. Was he right? Unless it is possible towork out some reasonably satisfactory answer to thatquestion, my guess is that the care of the dying will re-main seriously hamstrung. I sometimes get the impressionthat recent efforts to improve that care are managing,perhaps inadvertently, to evade dealing with death itself,focusing instead on palliative techniques and strategies.

I want to get at the core question here—that of theappropriate relationship between the care of the dyingand our stance toward death itself—by proposing somehistorical ways these two issues have either been blendedor separated.

My point of departure is the premodern era, mostplausibly described in the French historian PhilippeAriès’s fine 1977 book The Hour of Death. He detailed“the persistence of an attitude toward death that re-mained unchanged for thousands of years, an attitudethat expressed a naïve acceptance of destiny and nature.”He called that “the tame death” and showed how it wasaccompanied by practices at the end of life that stresseddeath’s public impact—the loss to the community of anindividual’s life, underscored by rituals of mourning thatmade the same point. How people died and the meaningof death were inextricably blended.

Though Ariès specified no particular time at whichthat long era ended, I believe it wound down in the1950s and 1960s. By then postwar medical progress,rapidly enriched with lifesaving drugs and technologies,was in full flower and eagerly embraced. Medicine couldfinally do something about death, and doctors werequick to take up the new arms in a new cause, that of ag-gressively fighting to save lives, now a plausible effort.

Daniel Callahan, “Death: ‘The Distinguished Thing,’” Improving End ofLife Care: Why Has It Been So Difficult? Hastings Center Report Special Re-port 35, no. 6 (2005), S5-S8.

No quarter was to be given. I recall in the 1960s arguingwith physicians, educated in the postwar years, who toldme that they had a moral duty to save life at all costs. Thequality of life, the actual prognosis, or the pain induced byzealous treatment were all but irrelevant. The technologicalimperative to use every possible means to save life was com-bined with the sanctity of life principle in what seemed theperfect marriage of medicine and morality.

Then came the backlash, beginning in the late 1960s.Often bitter complaints about useless but painful treat-ments, about abandonment at the end of life, and aboutdeath in a cocoon of tubes and monitors, began to turnthe tide.

These complaints led to reform efforts that focused onmeans to improve end of life care. What was left out ofthese efforts was a coming to grips with the meaning andplace of death. What Aries had called a “naïve acceptanceof destiny and nature” was put to one side—but nothing,seemingly, was put in its place.

That gap was soon filled. President Nixon in 1970 de-clared war on cancer and the National Institute of Healthwas soon on a roll. Gradually, almost imperceptibly, thereemerged what I think of as the great schism in medicine.On one side was palliative care, seeking to bring back intoclinical practice the relief of pain and suffering as one ofthe highest goals of medicine. That kind of care, as initial-ly understood, required that both doctor and patient ac-cept death as an unavoidable part of life. On the otherside was an ever-expansive medical research drive, thesworn and well-financed enemy of death and illness ofevery stripe. That research drive is the implacable foe of anold-fashioned, anachronistic fatalism which held, as fixedhuman wisdom, that many bodily miseries, but especiallydeath, just have to be endured. Death is now not to be ac-cepted, but eliminated.

There is no easy way to reconcile these two faces ofmedicine. The research push treats death as a contingent,accidental event that can be done away with, one diseaseat a time. Research advocates can hardly contain their en-thusiasm for the great possibilities that lie ahead. Thinkonly of the campaign for stem cell research, with itspromissory note of cures for heart disease, Alzheimer’s,Parkinson’s, diabetes—just about everything except ath-lete’s foot.

That kind of zeal spills over into clinical practice.Force-fed by research turned into technology and under-girded by medical education and clinical acculturation,good medicine saves lives. It does not give up. It refuses tonegotiate with death. Why should anyone accept, at leastin principle, a death that researchers believe will somedaybe cured—any more than AIDS should be toleratedwhen, someday, a vaccine will work? In the meantime, in-novative technologies can provide a few more days, weeks,

maybe months of life, than was possible even a few yearsago. Every physician has his miracle story. Go for it!

I once asked a visibly dying friend, someone who hadtaught medical ethics for thirty years, why he had agreedto one more round of chemotherapy for his recurrentpancreatic cancer, leaving his mouth so full of sores hecould speak only with great pain. “They talked me intoit,” he said. His oncologist probably talked himself into itas well. Death came quickly after that, the treatment use-less. But how else to proceed, the true believer might ask,to gain the progress that is possible? If that chemotherapytrial failed, the next one may succeed; or at least the oneafter that one.

But is there an inconsistency in helping someone diewell when death is on its way while simultaneously seek-ing a cure that will benefit future patients dying from thesame disease? There is no logical inconsistency, narrowlyunderstood, but there is a powerful psychological clash. Itpits the value of accepting death when a particular deathis unavoidable against rejecting death as a matter of prin-ciple for a research-ambitious medicine.

� � �

I t may well be that still another stage is beginning toappear. If the “naïve acceptance of destiny and na-ture” has been put to one side—for a time, with no

other clear view of death to put in its place—such a viewmay now be coming into focus. It might be called the De-nial of Death II, to invoke Ernest Becker’s 1970s bookThe Denial of Death. By that phrase I mean not a refusalto look death in the face, to hide it away, which was Beck-er’s point, but to incrementally whittle away at its sup-posed inevitability, and to return to the treatment aggres-siveness of the 1950s and 1960s.

Part of this new stage is motivated by the research im-perative, which is steadily gaining ground, and part by acombination of other influences, each of them more in-cremental than decisive in nature but, taken together,strong in their aggregate force. Let me give some examplesof those influences, each of which drives a wedge betweenthe care of the dying and the place of death in life. My ev-idence is, on the whole, anecdotal, and the items I notemay not be all that telling; but this is what I see and hear.

The advanced edges of the palliative care movement, Ihave been told, have quietly been dropping the notionthat its patients must have accepted death if it is to suc-ceed in caring for them; it seems to be embracing a cau-tious neutrality on that point. At the same time, a newcompromise with death has been proposed in some terri-tory between acceptance and rejection: the teaming up,



for instance, of an oncologist and a palliative care special-ist to treat a terminally ill patient who teeters on the bor-derline between hope for life and acceptance of death.

Those (like myself ) who are ready to accept death asbiologically inevitable are being labeled either “mortalists”or “apologists.” Some of us have sunk pretty low, I sup-pose. In this climate, abetted by industry marketing andmedia hype of one breakthrough after another, should webe surprised that physicians complain about inflated pa-tient expectations, or that many patients or their familieswant aggressive treatment without limits when faced withdeath? Should we be surprised that some consider thedeath of Terri Schiavo, defined as simply disabled andthus not beyond the reach of medical care, as nothing lessthan murder? Religious conservatives and disability advo-cates often now team up to call into question the motivesof those seeking an acquiescence in death, attributing it tomoral insensitivity, to a denigration of those with dimin-ished capacities, or to a crude desire to cut costs by elimi-nating the expensively burdensome. They are adding anew instability to an already complicated situation.

I do not mean to suggest that end of life care is bur-dened simply by medicine’s profound ambivalence aboutdeath, intensified by a public that shares some of that am-bivalence. No doubt advance directives have never had theimpact hoped for because most people resist facing up totheir eventual death (even the preparation of ordinarywills is widely neglected). Education and publicity canmake a dent in the otherwise poor figures (less than 25percent have advance directives by most accounts), butthe fact that most deaths are not seen up close and occurfor the most part in old age does not push the reality ofdeath in one’s face the way it once did. If you don’t wantto think about it, there are lots of ways to look in other di-rections.

No less important, it seems, is what I call the multiplevariable problem. Just as health care reform in the UnitedStates is stymied by a large number of competing interestsand a plethora of subversive variables, end of life care hasits own excess of variables. Even with the best will in theworld and advance directives (or surrogates) in place,much can go wrong: disagreements between doctor andpatient, doctor and doctor, family and patient, family and

doctor, hospital and medical cultures (some favorable andsome cool to advance directives), and so on.

The Schiavo case illustrates the point. Had she or hadshe not clearly stated her desires? Who had her best inter-ests at heart, her husband or her parents? Even if recoverywas unlikely was it at least possible, and might some fur-ther treatments have made a difference? We all have ouranswers to those questions, but the point is that it was nothard to pick a fight. There are many cases that do not riseto the sad and unseemly level of the Schiavo fight. Manypeople will conclude that it is vitally important to haveclear advance directives or a dependable surrogate, whileothers, unwisely and unhappily, seem to have concludedthat there is some kind of plot afoot to do in patients in apersistent vegetative state or with other disabilities. Thereis no such plot (though surely some insensitivity here andthere), but advance directives do not guarantee you willget what you want, only that they may increase the likeli-hood you will.

� � �

T he question left hanging is: How should medicineand its practitioners think about death and locateit in the human life cycle? There is no doubt that

the nature of dying has changed and no less doubt thatmedicine has been encouraged to grab death by the throatand not to let go—even as our biology one way or anoth-er continues to conspire to bring us down. I believe PaulRamsey was profoundly wrong in holding that there canbe no death with dignity. The weakest sense of dignity inthe context of dying focuses on the loss of control, that oflife’s trajectory leading irreversibly downhill, the bodyfalling apart, marked by incontinence, pain, humiliation,dependence upon others for our very existence. One ceas-es to be the person one once was and wanted to be, witha new physical (if not necessarily psychological) identitytaking its place, not one to be admired or to be proud of.

I call that “dignity” in the weak sense, not becausephysical identity is unimportant but because, as many sur-vivors of genocide, starvation, death camps, and severedisability have shown, there is more to a human life than

Forces on the scientific side that treat death as the great enemy, not to

be tolerated, and on the ideological side, seeing snares and

delusions in end of life care, are creating new obstacles to caring for

the dying. If we are not careful, we could reverse the progress made to

improve end of life care thus far.


the state of the body. The serious sense of a loss of digni-ty I understand to be the supposed ultimate insult thatdeath brings to life, which was what Ramsey had in mind:I live, therefore I am.

I have never understood why someone should feel thatway. Surely from the viewpoint of species welfare, death isno evil. It is a condition of constant species renewal(though I grant that species vitality does not do much forme as an individual). But death does not seem to me to bean evil if it comes at the end of a long life, one marked bya completion, or near it, of those aims that mark a fulllife. It is no accident that weeping is ordinarily absent atthe funeral of an elderly person. Almost all of us know oldpeople who, while still enjoying life, profess themselvesready to die and seem to mean it. It is hard to see indig-nity in a death marked by that acceptance. Of coursethere are many others, not yet old, not yet with a full lifebehind them, who will be ambivalent, and some will notwant to give up, at least not at once. Advance directivescan have an important place for them; and when they areready to go, palliative care will usually be needed. Onecan only hope they will die in the hands of physicians andnurses who will understand their plight and their needs.

Considerable progress has been made during the pastthree decades in improving the care of the dying. Butthere remain some old obstacles, familiar from the start,and some that are not many years old. Physicians unwill-ing to give up and indifferent to patient desires are stillwith us, just as soon-to-be patients resistant to advance di-rectives are still with us. There is unfinished work here tobe done. Forces on the scientific side that treat death asthe great enemy, not to be tolerated, and on the ideologi-cal side, seeing snares and delusions in end of life care,create the new obstacles.

How our society responds to those two forces willmake a great deal of difference; if we are not careful, wecould reverse the progress made to improve end of lifecare thus far. In the end, we die, and it is not an evil thatour biology has made it so. We can and will argue aboutthe timing and the details, about acceptable and unac-ceptable deaths. That is right and proper. Difficult deci-sions will never run out. But if we hedge our bets aboutthe inevitability of death, waffling and dreaming—a freshscience-driven embrace of the denial of death—then weare likely to face worse lives and, when it comes, worsedeaths.


A ttention to end of life care in contemporarybioethics took its initial impetus from the NewJersey Supreme Court’s Karen Quinlan decision

in 1976, and from this very beginning, there has been adisconnect between theory and reality. In authorizingventilator removal from Ms. Quinlan, who was in a per-sistent vegetative state, the court relied on the principleof respect for autonomous choice. It gave no weight tothe wishes of Quinlan’s parents or her physicians; theonly person with any legally recognizable claim was Ms.Quinlan herself. But she was in no position to make anydecisions about continued use of the respirator. Beforethe incident that left her in a persistent vegetative state,she had never expressed any wishes about how she shouldbe cared for if she became ventilator-dependent, and af-terwards she was incompetent and had no prospect ofever regaining competence.

The court quickly bypassed the central problem in ap-plying the autonomy ideal to her by positing that if shehad been competent, she would have had a right tochoose withdrawal, that she should not lose this right“merely” because she was now incompetent, and that herfather could exercise this right for her, so long as he actedon the basis of what he believed to be her wishes ratherthan on his own view of her best interests. From its mod-ern origins in the Quinlan case, then, the autonomyframework for conceptualizing end of life decision-mak-ing has had a distinctly artificial cast of mind. It is onlythirty years after Quinlan, however, that we can nowclearly see what should have been evident from the be-

ginning: the autonomy framework in the context of endof life decision-making simply doesn’t fit the facts.

This is not to deny that protecting patient autonomyin end of life care, as in all medical treatment and re-search, is an important principle. Nor is it to deny thatdisregard for patient choice has been a longstanding andunjustifiable feature of medical treatment and research.But the facts are that applying the autonomy frameworkin end of life decision-making has had little practical ef-fect and much fictitious posturing. Efforts to persuadepeople to create and implement advance directives toprotect their autonomy if they should become incompe-tent have essentially failed. The fictive character of thesedirectives is revealed with special clarity in the laws ofsome thirty-nine states providing that where an incom-petent person has not specified a health care proxy in ad-vance, the state will make that choice itself on thepremise that most people would want what the statewants for them—that is, spouse first, adult children sec-ond, and so forth.

The explanation for the failure of the advance direc-tive movement emerged with considerable force in theearly 1990s, with the empirical findings of the Study toUnderstand Prognoses and Preferences for Outcomesand Risks of Treatments (SUPPORT). This study testedthe most extensive, rigorous effort that had ever beentried to assist terminally and critically ill patients andtheir families in making informed choices about end oflife care. Notwithstanding the magnitude of this efforttoward promoting choice, it produced no effective re-sults. The SUPPORT data instead revealed—in findingsthat have been subsequently confirmed in other set-tings—that most patients and their families did not wantto make decisions about their end of life care. Though

The End of Autonomy

b y R O B E RT A . B U RT

Robert A. Burt, “The End of Autonomy,” Improving End of Life Care: WhyHas It Been So Difficult? Hastings Center Report Special Report 35, no. 6(2005): S9-S13.


most patients in the study were persuaded to fill out ad-vance directives, a substantial portion of these patientsand their families ignored their prior directives as deathdrew near. They simply did not want to talk about the re-ality that they were facing death; and most medical pro-fessionals returned the favor with equal reluctance to talkabout dying.

Two Responses

There are two ways to respond to this consistently con-firmed reality. One way—the dominant way for the

past thirty years—has been to redouble efforts to promotepatient and family choice-making. The second is to turnour attention away from the autonomous choice frame-work in thinking about end of life decision-making. Ithink we would be best advised to take this second way—not to override autonomous choice, but to remove thisvalue from the center of attention and to recast our think-ing about end of life care to promote different, thoughnot necessarily inconsistent, goals.

One lesson I draw from our failed efforts to promoteindividual end of life care choice-making is that this pur-suit, besides having limited potential for practical effect inindividual lives and deaths, also carries substantial socialdangers: it is likely to yield abuses as bad as, and even di-rectly similar to, the abuses of physician authoritarianismthat the autonomy framework was intended to correct.The crucial impetus for the modern embrace of the au-tonomy framework for terminally ill patients was mistrustof physicians, based on a belief that they regularly disre-garded the wishes and interests of their dying patients bypursuing aggressive, painful therapies with no realisticpossibility of success, by withholding effective pain reliefgenerally, and by abandoning their patients when deathbecame patently unavoidable. The equivalent dangers inthe autonomy framework arise from the practical reluc-tance of most people to exercise choice.

People are reluctant to exercise choice in end of lifematters because of cognitive difficulties that inescapablyafflict everyone in contemplating the reality of death. Pro-ponents of the autonomy framework during the past thir-ty years have not ignored these difficulties; instead, theyhave inveighed against them. According to their preach-ing, we should end our “denial of death” and view itrather as a “natural part of life,” to be accepted in the sameway that we accept any inevitable biological given (assome say death once was seen in some prior golden age ormay still be seen in some other contemporary culture).

But we avoid acknowledging this biological inevitabil-ity not simply from fear of death but from a cognitivedrag on our ability to comprehend death. We may parrotthe language of rational choice in comparing our fearsabout death with our fears about continued life in the face

of illness or disability, and we may enact a convincing ap-pearance of autonomous choice in contemplating death.But it is very difficult, at the core of our thinking, to con-vince ourselves that death is rationally comprehensible.Death is more than a future condition with uncertainbenefits and detriments. It is more than the absence oflife. It is the absence, the intrinsic contradiction, of mean-ingfulness. The very concept of the choice-making self,the construct on which the autonomy principle dependsfor its coherence, is radically unsettled—even made in-comprehensible—by the actual, imminent approach ofdeath.

A more conventional view is that some people may beafflicted with this inability to comprehend death, butsome—perhaps many or even most—are not, and thetask in applying the autonomy principle is to deviseguidelines for distinguishing those who are and those whoare not “competent” to exercise rational choice. But thedifficulties in drawing this distinction are so profoundand the consequences of our inevitable failure so gravethat we should not put this differentiating enterprise atthe center of our practices about end of life care.

The most convincing explanation for the medicalabuses inflicted by the health care system on dying pa-tients is physicians’ and others’ sense of the “wrongness” ofdeath. The incomprehensibility of death readily translatesinto a conviction that death is a kind of grammaticalerror, a misfit in a world that can be rationally compre-hended. In the medical lexicon, death is understood as anerror to be corrected, opposed, negated. Displacing clini-cians and blaming their commitment to rational masteryover death does not, however, cure the problem posed bydeath’s incomprehensibility. Death’s status as a grammati-cal error leads not only to medical triumphalism and theabuse of dying patients, but also to a conviction thatdeath is “wrong” morally. Even if one can comprehend,intellectually, that some things are worse than death andthat morally condemning a biological inevitability is non-sensical, nonetheless a persistent undertow pulls continu-ously in the opposite direction. This moral ambivalencetoward death might be consciously denied. And somepeople may be more capable than others of rigidly main-taining this denial into the maw of death itself. But formost people, successful resistance to this moralized under-standing is akin to success in refusing to think about ele-phants in response to a command that you must not—whatever you do, you must not—think about elephants.

The consequences of thinking forbidden thoughtsabout the moral wrongness of death are fraught with dan-ger. If death is a moral wrong and you cannot avoiddying—indeed, if you actively embrace dying—then itfollows that somebody must be punished for wrongdoing.Physicians could, of course, punish their dying patientsfor this transgression, and when they held a central


choice-making role, they did. But though they are now re-moved from that role, the impulse to blame has not van-ished; it has simply changed structure. As the choice be-longs to the individual, the punishment will be individu-ally self-inflicted. The precise content of this punishmentvaries—perhaps patients’ insistence on aggressive andpainful, though patently futile treatments, perhaps theirrefusal to request effective pain relief, perhaps their em-brace of premature death. But in all such cases, the abusepreviously inflicted by physicians on dying patients willreappear, for the same underlying reasons, as abuse inflict-ed by dying patients on themselves. The ironic conse-quence of the autonomy principle—that decisions aboutdeath are the legitimate prerogative of no one but thedying person—is that blame, too, will attach only to thedying person, and will be attached by the dying person tohimself.

The abuse of dying patients—either self-inflicted or ia-trogenic—is not inevitable, however. It is only ambiva-lence about death—some lurking, ineradicable sense of itswrongfulness, juxtaposed against all rational argumentsfor its inevitability and even preferability—that is in-evitable. The impetus for turning this ambivalence towardabuse is denial—not “denial of death,” in the convention-al sense of that cultural construct, but denial of thewrongness of death. Death’s wrongness, like the expresslyforbidden thought of an elephant, cannot be entirely re-pressed; and if it is banished from consciousness by a sin-gle-minded insistence that death is “good” or “dignified”or “accepted,” the unconsciously buried sense of wrong-ness and guilt accompanying death will push toward ex-pression in action. This is the dynamic by which an unac-knowledged sense of wrongdoing and guilt expresses itselfby wrongful action that implicitly invites condemnation,even as the action is explicitly enshrined in protestationsof righteous conduct.

Countervailing Schemes

The challenge for social regulation of end of life care isto identify the circumstances in which this malign

dynamic is likely to take hold and to design countervail-ing schemes. Reliance on patient autonomy is not an ef-fective countervailing scheme, any more than the now-discredited reliance on physician autonomy for decidingwhether and when death should occur.

The following three proposals respond to this problem:

(1) No one should be socially authorized to engage inconduct that directly, purposefully, and unambiguouslyinflicts death, whether on another person or on oneself.

(2) Decisions that indirectly lead to death should beacted upon only after a consensus is reached amongmany people. No single individual should be sociallyauthorized to exercise exclusive control over decisionsthat might lead to death, whether that individual is thedying person, the attending physician, or a family mem-ber acting as health care proxy.

(3) As much as possible, end of life care should not de-pend on explicit decisions made at the bedside of a spe-cific dying person but rather should be implicitly dictat-ed by systems-wide decisions about available resources,personnel, and institutional settings—that is, by settingup default pathways that implicitly guide and even con-trol caretaking decisions in individual cases.

The rationale for the first proposal is that the direct,purposeful, and unambiguous infliction of death leavesno psychological space for acknowledged ambivalence.Whether the infliction is carried out on oneself or on oth-ers, it demands an unambivalent claim of rightness andrighteousness that is psychologically impossible and thusinvites self-contradictory expressive actions.

Our current regulations for end of life decision-makingdo offer psychological space for acknowledged ambiva-lence in various ways. The rules that permit withholdingor withdrawing life-sustaining care provide some comfort-ing assurance that these actions do not in themselves in-flict death because the underlying illness is the cause ofdeath. At the same time, the logical tenuousness of thisreasoning promotes conscious acknowledgment of am-bivalence—that is, of the close proximity of these actionsto wrongful conduct. (This protective dynamic is com-pellingly described by Miles Edwards and Susan Tolle inan article about removing a competent, conscious postpo-lio patient from a ventilator in response to his insistent re-quest. Although rationally convinced of the moral cor-rectness of this course, Drs. Edwards and Tolle reportednonetheless having a powerfully troubling sense of wrong-doing, of “purposeful killing.”1) The logical tenuousnessof the distinction between relieving pain and hasteningdeath in the high-dosage administration of opioids todying patients—the so-called “double effect” principle—has the same psychologically protective function, serving

Death’s wrongness cannot be entirely repressed; a buried sense of its

wrongness will push toward expression. The challenge for social

regulation of end of life care is to design countervailing schemes.


simultaneously as permission and a warning sign aboutdealing with death.

The protective function of these logically tenuous rulestends to erode over time, as their routine application dullseveryone’s sense of the close correspondence between per-mitted and forbidden conduct authorized by these rules.The clearest indication of this erosion is in the argumentsput forward by advocates for physician-assisted suicideand euthanasia. These advocates insist that withholding orwithdrawing life-sustaining treatment or applying thedouble effect principle is logically identical to purposeful,unambiguous infliction of death, and that this logicalidentity means that all these steps are morally equivalentand morally correct. These contemporary advocates fail tosee that, far from justifying this “next step” toward pur-poseful killing, the plausibility of their logical claimsabout existing practices should raise concerns that thesepractices have themselves lost their function as protectiveexpressions of ambivalence toward death.

Our guiding principle for social regulation should bethat the more comfortable clinicians and patients are withactions implicating death, the more socially dangerousthese actions become. Preserving these “illogical” lines be-tween accepting and hastening death—between physi-cian-assisted suicide and withholding or withdrawingtreatment or administering high-dosage opioids—is in theservice of promoting conscious awareness of moral dis-comfort. Eliminating this discomfort, as urged by advo-cates for physician-assisted suicide and euthanasia, is logi-cal but terribly wrong—and socially dangerous becausethe unconsciously buried conviction of wrongdoing ulti-mately will express itself in eruptions of blameworthyconduct.

Toward Shared Decision-Making

My second proposal, that social regulations should notdesignate any single individual to exercise exclusive

control over decisions that might lead to death, would re-quire a more radical departure from existing arrange-ments. Forged on the anvil of autonomous individualchoice, existing arrangements search relentlessly for a sin-gle designated decision-maker based on a clear-cut hierar-chy of authority. The desperate intensity of this search isrevealed by the state laws, noted above, that denominateproxy decision-makers even where an incompetent pa-tient has made no prior selection. In particular, this in-tense search is apparent in the provision of those laws re-garding multimember proxies, such as parents or childrenor siblings; many such laws specify that for this class ofproxies, majority vote shall prevail and, in the event of tievotes, the class is disqualified from decision-making au-thority. The implicit goal in these laws is not simply to

find some single decision-maker but to find an unam-biguous choice about life-sustaining treatment.

There is a practical imperative behind this goal becauseof the binary character of the decision to treat or not totreat. But honoring this imperative means suppressing theambivalence that is likely to accompany this decision. If itis more socially and psychologically protective to ac-knowledge and address this ambivalence in the course ofdecision-making, the better course would be to amplifythe opportunities for expression of differing views—thusforcing everyone’s ambivalence about death-dispensingdecisions toward visible acknowledgment. To accomplishthis goal, provision of life-sustaining treatment must bethe default option unless and until all of the affected par-ticipants (family members and clinicians) have come to aconsensus about withholding or withdrawing.

When the patient is competent and prepared to makea decisive choice, the autonomy principle does properlybestow hierarchically superior authority with the patient.But even in this clear-cut case, there are other, important-ly affected participants who should have some voice in thepatient’s ultimate decision—not a veto but a voice, achance to talk to the patient and address and amplify theambivalence that the decision-making patient himself islikely to feel but also likely to deny.

Beyond—or perhaps one should say, above—this psy-chological benefit of consultation, there is an ethical prin-ciple that demands this consultative process. The compe-tent patient may have the ethically highest priority in de-cision-making; but his or her decision to continue or dis-continue treatment has a powerful and lasting impact onfamily members and on health care clinicians. Yet theirstake in the decision is ignored when we fixate on the pa-tient’s autonomous choice. Their stake may ultimately de-serve less weight than the competent patient’s choice; butsome weight nonetheless is appropriate and can be re-spected by rules providing for some consultative process-es.

Perhaps these consultations should be mandatory in allcases. Perhaps some exception should be made where thepatient adamantly resists any consultation, but even herethe patient should be required to explain his refusal tosome third party. In this explanation, some degree of re-spect at least would be paid by the patient both to the pos-sibility that he is suppressing his own ambivalence abouthis decision and that others will be powerfully affected byhis decision and thus have some ethically mandated stakein it.

Where there is no competent patient or clear-cut ad-vance directive from the now-incompetent patient, theautonomy principle provides no ethical basis for givingpriority to any one among many plausibly affected parties.The practical imperative of making an unambiguouschoice among binary alternatives might justify some arbi-


trarily imposed hierarchy among potential decision-mak-ers. But this imposition should be postponed for a con-siderable time while the parties are forced, by their explic-itly shared decision-making authority, to collaborate withone another and to explore the possibilities of a genuineconsensus.

This extended consultative process cuts against thegrain of current medical practice. The process is time-con-suming and emotionally draining. Clinicians are not ade-quately compensated financially or psychologically forthese costs. They are, moreover, typically not trained toengage in these consultative processes. Extended consulta-tion with distressed family members in conflict with oneanother about treatment alternatives requires considerableemotional investment and resilience among clinicians. Itrequires, among other things, that clinicians confronttheir own discomfort and ambivalence about the death-dispensing decisions that are a regular part of their dailyroutine. The automatic, instantaneous designation of asingle decision-maker—whether it is the competent pa-tient or one family member among many to speak for theincompetent patient—permits clinicians to avoid thesearduous, complicated confrontations with conflictingfamily members and with conflicts within themselves.This is the path of least resistance—and the path of great-est individual and social danger toward routinized, unac-knowledged abuse.

My third proposal, that systems-wide default pathwaysshould self-consciously be constructed to implicitly guideand even dictate caretaking decisions in individual cases,derives from the same psychological premises as the otherproposals. Systems-wide decisions establish the contextand frequently dictate the content of individual bedsidedecisions on such matters as allocation of resources, locusof care (home versus hospital versus nursing home), andthe roles of professional and informal caretakers.

This is the lesson, for example, of the SUPPORT find-ing that the place of death (home versus institutional set-tings) did not depend on patient or family preferences.Rather, it correlated directly with the availability of insti-tutional beds—the more beds in any region, the morelikely that terminally ill patients in those regions woulddie in those beds. It is highly unlikely, however, that any-one involved in the systems-wide decision-making thatproduced more or fewer hospital beds acknowledged,even to themselves, that their decisions would have a di-rect effect on dying patients and would virtually dictatewhether these patients died at home or in hospital. Theimpact of these systems-wide choices on dying peoplewas, in an important sense, invisible to everyone—eventhough a moment’s clear thought would have made it vis-ible.

The same phenomenon is found in the familiar exam-ple of the psychological difference between systems-widedecisions to withhold resources for improving coal minesafety and particularized decisions to withhold rescue re-sources from workers trapped in coal mine accidents. Inboth contexts, lives will clearly be lost by withholdingsafety and rescue resources and, moreover, the number oflost lives is precisely calculable. But in withholding expen-ditures for coal mine safety, the lives lost are statistical pro-jections; for trapped coal miners, impending deaths aremade real with specific names, faces, and families. Theethical costs and psychological dangers of withholding re-sources from rescue are therefore much greater than forwithholding preventive expenditures. Withholding rescueresources feels like inflicting death and is inevitably guilt-provoking, while withholding resources for preventivesafety measures feels like an impersonal policy decision, inwhich we may easily begin to calculate that death may besocially desirable given the costs of preventing it.2

In making decisions about the care of dying people, weshould take advantage of the psychologically protectiveimplications of systems-wide decision-making. As muchas possible, we should make systems-wide decisions inwhich, at the moment when the decisions are made, nospecific dying person is an acknowledged target.

The three proposals have one common theme: that thefocus of attention shifts away from individual choice-making autonomy in the social arrangements regardingend of life care. Because the autonomy focus has no sub-stantive content—because it is ostentatiously silent aboutwhether death is desirable or undesirable, but insists onlythat each individual should make this value choice forhimself—it has served the same psychological purposethat I have criticized throughout this essay, namely, todeny ambivalence about death—to deny that death canbe both attractive and repulsive at the same time, and todeny that decisions either to accept or to resist death aremore fraught with possibilities of abuse when this coreambivalence is suppressed rather than acknowledged in anopen and sustained way. Acknowledging this ambivalenceis difficult. These difficulties have given impetus to the re-lentless search for a single decision-maker regarding endof life care—whether that decision-maker was the attend-ing physician, under the old ethos of physician paternal-ism, or the individual patient, under the new ethos of in-dividual autonomy. We have seen enough by now toknow that the current path is not a reliable improvementover the old.

1. M.J. Edwards and S. W. Tolle, “Disconnecting a Ventilator atthe Request of a Patient Who Knows He Will Then Die: The Doc-tor’s Anguish,” Annals of Internal Medicine 117 (1992): 254-56.

2. For an extended, illuminating discussion of this proposition,see G. Calabresi and P. Bobbitt, Tragic Choices (New York: W. W.Norton, 1978).


Not long ago, people generally “got sick anddied”—all in one sentence and all in a few days orweeks. The end of life had religious, cultural, and

contractual significance, while paid health care servicesplayed only a small part. Now, most Americans will growold and accumulate diseases for a long time before dying.Our health care system will cleverly supplement thebody’s shortcomings, making it possible to live for years“in the valley of the shadow of death,” fearing not onlydeath but also all sorts of evil from the regular dysfunc-tions of our health care and social systems. In a sense, thegreat success of modern medicine has been to transformacute causes of death into chronic illnesses. Mostly, we donot spend much time or money on cures—these arequick and cheap when they are available at all. Instead,health care now involves substituting better chronic con-ditions and helping people to live with implacable ill-nesses, a few of which are stable and many of which areprogressive but not life-threatening. However, each of useventually lives with a set of conditions that are, taken to-gether, progressively worsening and eventually fatal.

This is a very different way of coming to the end oflife from that of “the old days,” when people died inchildbirth, of occupational hazards, of periodic epi-demics, and with the first heart attack. In 1897, SirWilliam Osler’s The Principles and Practice of Medicinenoted that the usual adult hospitalized with diabeteswould die within a month. Things have changed somuch that today we don’t really have the language, thecategories, and the stories to help us make sense of our

situation. One hears people say, “He’s not dying yet,” ofa person living with fatal lung cancer. Generally, thatmeans he’s not yet taking to bed, losing weight, and suf-fering from pain, as would be expected when dying is allthat he can do. But the category is used as if one is either“temporarily immortal”—which is the usual state ofhuman beings—or “dying,” in which case the person isof a different sort, having different obligations and rela-tionships. “The Dying” are expected to do little but wraplife up and go. But this dominant myth about dying doesnot fit many people. Many elderly people are inching to-ward oblivion with small losses every few weeks ormonths.

If our language does not accommodate the new reali-ty, it is not surprising that our shared social life has notyet taken up the challenge. No characters on eveningtelevision are cracking jokes while dealing with Grand-ma’s wandering and incontinence. No movies show theaccommodations needed to live with advanced emphyse-ma. As a patient once told me, “No one in the Bible diedlike this.” People find little guidance when they look toour ancient texts for comfort and advice on how to livewhile walking a tightrope of serious illness and frailty,propped up by modern medicine.

That lack of social understanding also shows in theconceptual apparatus we have used in trying to bring re-form to what happens in the last part of our lives. Re-markably, we have used the language of decision-makingand law more often than that of spiritual journey andpsychological meaning. In the 1970s, the issues wereframed as “the right to die” or “the right to choose.” Thework of the President’s Commission on Ethical Problemsin Medicine and Biomedical and Behavioral Researchmarks a transition to the language of “foregoing life-sus-

Living Long in Fragile Health:The New Demographics Shape End of Life Care

b y J O A N N E LY N N

Joanne Lynn, “Living Long in Fragile Health: The New DemographicsShape End of Life Care,” Improving End of Life Care: Why Has It Been SoDifficult? Hastings Center Report Special Report 35, no. 6 (2005): S14-S18.


taining treatment.” At that time, widespread reaction tothe suffering inflicted on patients by cancer treatmentsand to mainstream medicine’s inattention to physical painled to the only widely adopted change in health care de-livery in the last half of the twentieth century—hospiceprograms. Half of Americans use hospice at least brieflybefore dying. However, most of the time spent living withserious illnesses that will end in death is spent not in hos-pice care, but in the indistinct zone of “chronic illness”that has no specific care delivery system. Most of us aspireto “healthy aging,” but we should also ensure that we can“live well while very sick and dying.”

In this short essay, I will lay out the framework for apromising approach to reform. First, reformers must un-derstand some core facts about illness, aging, and disabili-ty, and the dysfunctions of the categories and languagethat we have inherited. Second, we should tailor servicedelivery arrangements to serve the three common trajecto-ries of service needs that people tend to follow in their lastphase of life. Third, we should strategize to build the po-litical base to insist upon rapid practical change, startingwith family caregivers.

Factors in the End of Life

In the recent past, a number of events have shaped thelast part of life. Oregon debated and eventually accept-

ed a process that allows physicians to assist in some delib-erate suicides. Most hospitals, including all of the VeteransHealth System facilities, are beginning to offer palliativecare programs. New drugs and devices often add a little tothe time spent living with fatal conditions but also greatlyincrease costs. Families still provide most of the supportivecare without financial compensation, but the effects onfamily caregivers are becoming more obvious as theirnumbers, ages, and emotional and financial burdens in-crease.

One element that has influenced the course of reformsin care for the last part of life has been some data-driveninsights from the SUPPORT project. The Study to Un-derstand Prognoses and Preferences for Outcomes andRisks of Treatments, or SUPPORT, enrolled more than10,000 seriously ill patients in five hospitals from 1989 to1994. The project initially aimed to understand and im-prove decision-making for these patients through betterinformation about outcomes and better support for thosemaking decisions. Since SUPPORT enrolled people whohad one of nine serious illnesses, or were old and had anonelective admission, a great many patients died duringdata collection. While the population is not representativeand the data arose fifteen years ago, the SUPPORT pro-ject illuminated a number of facts that otherwise had beenoverlooked or had never before been substantiated. Forexample:

1. Many patients suffer substantially in the time beforedying.

2. The patients, their families, and their professionalcaregivers did not see adverse symptoms or aggressivetreatment as serious shortcomings of care.

3. Statistical models could accurately predict the likeli-hood of survival for two or for six months, both for in-dividual patients and for groups of patients.

4. Knowing reliable predictions concerning survival didnot affect patients, family members, physicians, or nurs-es: they continued to follow usual treatment patterns.

5. Prognoses remain ambiguous even very close todeath. For example, the median person dying of heartfailure today had a 50-50 chance yesterday to live an-other six months. Good care for the dying requires tak-ing care of many who will live for a long time with theirserious illnesses.

6. Counseling about the possible alternatives for careand encouraging decision-making that implemented pa-tient preferences among available options had no effectupon patterns of care.

7. The course of care is much more strongly associatedwith the service supply and habit patterns of the localcare system than with the particular preferences or prog-noses of the individual patient.

Several other facts also shape the possibilities for reforms.First, despite our cultural (and perhaps our universallyhuman) distaste for the fact of finitude, American societyis gradually learning to expect disability in old age and toaccept that serious illness and death are inevitable. Thirtyyears ago, hospital staff attempted resuscitation on nearlyevery person whose heart stopped. Now, only a small mi-nority of patients, mostly those with some real chance tobenefit, undergoes resuscitation. In a similar vein, theU.S. Preventive Services Task Force has started includingsome “upper limits” on the ages at which screening testsmake sense.

Second, the costs and burdens of care are highly con-centrated in the last years of life, especially when one ac-counts for long-term disability. One recent study foundthat, for those alive at age eighty-five, one-third of life-time health costs are still ahead.

Third, knowledge about the body has been organizedby disease and organ system, and claims about quality orcosts of care have been organized by program and setting(nursing home or intensive care unit, for example). Thosewho are very sick over a substantial time before death,


who routinely have more than one illness, and who needmany care settings challenge the care system design. In-stead of noticing only virtuoso medical interventions, so-ciety is beginning to value continuity and comprehensive-ness, or even just reliability. Nevertheless, initial contem-plation leaves one overwhelmed by the infinitely varyingarrays of physiological dysfunctions, personal preferences,family situations, and other aspects of a person’s circum-stances as they become ill “through to death.” Some havecontended that the proper course requires the care system(and the family and community) to discern and create thestrategies needed to support each patient’s individual situ-ation. At the least, this view contends that patients shouldget to choose from among available options and crafttheir own end of life. While this approach has substantialappeal, it entails remarkable inefficiency and quicklyreaches its limits when the services that would best serve aparticular patient could be available only if they served asubstantial number of patients in an area.

Trajectories of Decline

This conundrum leads to the very creative interface ofseeking opportunities for “mass customization,”

which is how most successful product or service suppliersmatch their goods to the needs of important subsets oftheir potential markets. The reform agenda has focusedon crafting patient-centered care around each individualpatient or, in contrast, on altering major elements of theentire care system, such as payment policy or standardsfor care settings. Mass customization instead aims to de-fine manageable populations with similar needs and thenengineers services that match the size of that populationand its predictable needs. This endeavor has found its an-chor in the observation that most people follow some fair-ly stereotyped courses in those last months and years. Themost common three trajectories of care needs over timeare these:

1. Long maintenance of good function despite knownfatal illness, with a few weeks or months of rapid declineas the illness becomes overwhelming and leads to death.While many diagnoses can lead to this course, the major

cancers are the typical cause. Probably about 20 percentof Americans follow this course.

2. Slow decline in physical capacities punctuated by se-rious exacerbations, with death often coming rathersuddenly. If patients survive an episode, they may wellreturn home without much worsening of their everydaylimitations; but at some point, rescue attempts fail. Al-though many diagnoses can lead to this course, chronicheart failure and emphysema are the most common;about 25 percent of Americans follow this course.

3. Long-term dwindling of function, needing years ofpersonal care. Although half of this population has seri-ous cognitive failure as part of the disease course, halfmaintain cognitive function, at least when not stressedby illness. Dying often follows a physiological challengethat would have been a minor annoyance earlier inlife—influenza, urinary infection, pneumonia, or a bro-ken bone. Approximately 40 percent of Americans fol-low this course.

These three trajectories are roughly sequential in theages afflicted, with fatal cancers peaking around age sixty-five, fatal chronic organ system failures roughly a decadelater, and frailty and dementia afflicting mostly those wholive past their mid-eighties. As science and public healthmore reliably prevent or delay onset of cancer, emphyse-ma, and heart disease, the proportion of the populationfacing the third course will increase.

One can see how a society could build care arrange-ments around these three patterns, following the masscustomization approach. Those facing the first trajectoryneed excellent medical care during the long period ofgood function, meshed with supportive hospice care forfamily and patient during the period of rapid decline.Those living with the second trajectory benefit from dis-ease management to reduce the likelihood of exacerba-tions and to sustain all possible function, along with rapidintervention at the first sign of exacerbation (often in thehome rather than the hospital) and good advance careplanning directing the eventually overwhelming exacerba-tion. Those living with the third trajectory need support-ive care over many years, including assistance with the ac-

Society could build care arrangements around the major patterns of

decline and dying. For any population, one could estimate the care

needs and arrange to have them available at the right time. This

approach conceives of the challenge of end of life care as a problem of

system design.


tivities of daily living, housing, and comfort. The coreneed is to support family caregivers, although they alsoneed reliably paid aides and institutional care. For anypopulation, one could estimate the care needs and arrangeto have them available at the right time. Patients, families,and providers would still make small adjustments to fittheir capabilities and preferences, but the core arrange-ments for care would already be in place, rather thanbeing patched together for the first time around each pa-tient.

This conception of the challenge of care for the end oflife as a problem of system design reflects a very differentconcept from “refusing life-sustaining treatment.” Indeed,it is really quite different from imagining that the coreproblem is decision-making by patient and physician.Those remain important, but this approach does not as-sume that good care could arise from prudent choices byindividual doctors and patients. Rather, it starts from theclaim that the care system should be designed to serve thevast majority of patients “on autopilot.” That is, if no onemakes any particularly strong choices, still just about theright things will happen for patients because they are“built into the system” and are part of the expected pat-tern.

This is what happens now in obstetrics. Just a fewdecades ago, women had to advocate personally for theservices each wanted; now nearly everyone is well-servedby a care system that supports prepared labor, bondingwith the baby, breastfeeding, and other desirable goals.One way to think about the reforms needed in end of lifecare is to aim for a care system in which almost every pa-tient would get very close to what serves him or her andthe family well, without having to advocate for himself orherself.

The Shape of a Reform Agenda

One implication of the SUPPORT findings concern-ing prognostication and the model involving trajec-

tories is that we cannot build workable care systems thatserve only those who will die quickly. Rather than theMedicare hospice program’s approach of conditioning tai-lored care to the near certainty of death within six months(and thus the median survival of just a few weeks), effec-tive restructuring of care will need to serve populationsthat include people who end up dying after some years, aswell as those who die soon. No strategy is available, for ex-ample, that would serve most who die of heart failurewithout including many who live with those services foryears. With most conditions, including heart failure, thetiming of death is just too unpredictable to enable goodservices to be conditioned upon reliable short-term pre-dictions of death.

Palliative care teams trying to achieve quality improve-ment often find the relevant population by asking whatwe have come to call the “surprise question.” Instead ofasking whether the person has a prognosis of some shortlimit (such as having a prognosis of six months, whichMedicare regulations require if a patient is to qualify forreimbursement of hospice benefits), the clinical team asks,“Is this person sick enough that it would be no surprisefor the person to die within the next six months, or ayear?” Whether one looks a few months ahead or a yearturns out not to matter much; at stake is whether the per-son is in a fragile enough condition that relatively minorworsening or intercurrent illnesses could spell the end oflife. Some of the patients identified by “the surprise ques-tion” will end up living for years in a fragile state, andsome will die soon, but all typically need the services thatare priorities in the last part of life: advance care planning,comfort measures, assistance for daily activities, familysupport, and so forth. Whether a particular person needsthis help for a few weeks or a few years, the social plan-ning requires arranging services that can stay with the per-son throughout.

Figure I.Three General Trajectories of Function and Well-Being

over Time in Eventually Fatal Chronic Illnesses


One might think that the concentration of sufferingand costs would have led to substantial investments inlearning how to serve people as they pass through that lastpart of life. However, investments of this sort have beenvery slow in coming. While the Soros Foundation’s Pro-ject on Death in America, the Robert Wood JohnsonFoundation, and others did invest during the last decadein building palliative care consultation in hospitals andgrassroots citizen action, very few substantial demonstra-tion projects have tested reformed care delivery, very littlebasic science research has targeted symptoms and disabili-ties, and few initiatives have started to alter the dysfunc-tional financial incentives that favor medical, surgical, andpharmacological interventions over reliability, continuity,and comprehensiveness.

I recently participated in a review of the state of the sci-ence underlying palliative care. The review was worded asoptimistically as possible, but the science was indefensiblyinadequate on virtually every issue, from measuring betterand worse outcomes of care to assessing the merits of stan-dard therapies. I came away feeling that this must havebeen the state of science regarding heart disease fifty yearsago—when most of the “science” was expert opinion andmuch of it was inadequate, even erroneous. In twentyyears, when the aging of the Baby Boomers doubles thenumber of people living with serious illness in the lastyears of life, society will have to focus on generating reli-able science and insights about effective care. Otherwise,we are sure to make major errors and incur major ineffi-ciencies in serving the burgeoning population.

What might make the last part of life as comfortableand meaningful as possible, at a cost that the communitycan sustain? Some elements of the shape of a worthy re-form agenda include the following:

1. Articulate thresholds of severity of illness that are alsoadministratively convenient for indicating the onset ofserious illness expected to last to the end of life.

2. From that time on, focus on care arrangements thatstay with the patient and family across time and settingsand that are comprehensive across all care needs.

3. Insist on high standards of symptom prevention andrelief, family support, and planning ahead.

4. Pay sustainable salaries and decent benefits for such asystem’s employees, and discount the costly services thathave much smaller expected benefits (often, the high-tech devices or costly drugs).

5. Develop supports for family caregivers, such as healthand disability insurance, respite care, and evidence thatthe community honors and respects their work.

6. Develop adequate supply of all of the critical compo-nents of good care—hands-on services for personal careas well as hospital care and good nursing homes as wellas on-call nurses to handle crises in home care.

7. Monitor the effectiveness and efficiency of innovativeapproaches and deliberately replicate proven models,aiming to evolve a highly reliable, sustainable care sys-tem within a decade.

In a way, this reform would dramatically expand hospiceprinciples of continuity, patient and family focus in prior-ities, and encouraging care at home. It would also buildon the social supports and endurance of home and insti-tutional long-term care. It would evade the sense that pa-tients must give up on treatment to get good care, butwould still make them unlikely to use burdensome treat-ments of limited value. The costs are probably not greatlydifferent from those of our current approach, but the pri-orities are.

What gets in the way of doing this?First, of course, many powerful interests have substan-

tial investments in perpetuating the current dysfunctions.Those who lobbied for a broad prescription medicationbenefit under Medicare are not likely to have the same in-terest in lobbying for good working conditions for nurs-ing home aides or for strategies that reduce the use of hos-pitals. Who could advocate for a more reasonable and bal-anced approach? The answer, tellingly, is that no strongindustry interests are aligned with good care for the end oflife. Even the professional trade associations have to lookfirst to the best interests of their particular part of the puz-zle, be it hospice programs or nursing careers.

The only group that comes to the fore as a potentialpowerful force for thoughtful reform is family caregivers.Almost all people have been, will be, or now are familycaregivers. They—really, we—could take on an identity asa political force and demand that leadership focus uponthese issues. That is a daunting claim—to take a diversegroup that now has no particular self-identification, con-vince them that they have shared interests, and see themforge a political agenda and carry it through. Hope lies inthe fact that the alternative is so distasteful—wasteful, un-reliable services that also bankrupt the country and de-moralize family members—and that all of us face this fatetogether, across the entire range of wealth and familystructures.


I t is hard to die in America. A process that shouldshield patients as they disengage from life insteadleads with increasing frequency to conflict and

media attention and provides an opportunity for thirdparties with political or self-serving agendas to feathertheir particular ideological and personal nests. For a fewyears after Quinlan (and before Wendland, Baby K, andSchiavo), it seemed as if a tentative consensus had beenreached that death is not always the worst outcome. Fam-ilies received support in their attempts to avoid a pro-tracted dying for loved ones. Ethically and legally cogniz-able elements in end of life decisions included: the agree-ment of physicians about the prognosis of unlikely recov-ery; prior wishes of the patient related to medical treat-ment and quality of life; and matters of suffering. Clear-ly some patients and family wanted “everything done tomaintain life,” but if pain control were assured, manychose less invasive, more comforting interventions. Butconsensus is hard to achieve, and even harder to main-tain, in a dichotomized society. Recent developments il-lustrate the truth of this proposition.

The medical-ethical climate is clearly changing and,in prominent cases, families are now demanding contin-ued support for patients long after the patient has lost re-lational ability and conscious appreciation of surround-ings. Moreover, these sorts of decisions appear to be partof a new political and moral agenda that sees the “right tolife” as applying both to the beginning and to the end ofexistence. Rather than reaching a more finely honed con-sensus about the values and practices that undergird end

of life care, conflict has come to dominate the discussion.The consequences are serious for patients, health careproviders, family members, and society. Moreover, theeconomic costs of these ethical challenges will have a se-rious effect on allocation of resources in a populationwith an ever-increasing number of persons who are notmedically insured.

Whatever consensus once existed in end of life carewas based on the assumption that death is not always theworst medical option for a terminally ill, suffering, or in-sensate patient. But defining the worst and the best isnever simple. Everyone is ambivalent about death: boththe family members who confront this most singular andterrifying event, and the physicians, nurses, and otherswho regularly witness it. In end of life narratives, majorconfrontations about death often build on a history ofsmall prior skirmishes. Increasingly, private conflict isplaying out not in patient rooms and hospital corridors,but rather in the nation’s courts and legislatures. Conflictabout death and dying is one of the new arenas for ex-hibiting the political, social, and moral cleavages inAmerican society.

Conflict is endemic in American society. We thrive onit and encourage it. We litigate civil disagreements thatwould have no place in the courts of other nations. Thefounding fathers disagreed about the underlying princi-ples of the statehood. A largely two-party system has reg-ularly magnified political, economic, and religious differ-ences in pursuit of politically viable territory. Democracyis messy and unkempt; it provides a platform for voicesthat challenge expert opinion and insist on the integrityand wisdom of their dissenting positions. And our onceemerging but apparently now declining consensus aboutthe end of life—forged in courts and state legislatures,

Conflict and Consensus at the End of Life

b y N A N C Y N E V E L O F F D U B L E R

Nancy Neveloff Dubler, “Conflict and Consensus at the End of Life,” Im-proving End of Life Care: Why Has It Been So Difficult? Hastings Center Re-port Special Report 35, no. 6 (2005): S19-S25.


supported by model legislation, and regulated by depart-ments of health—is in danger of being entirely undercutby politics and the needs of the infotainment industry.

The brief period of consensus on death and dying fa-cilitated the wide dissemination of “brain death” as an ac-ceptable alternative to the prior understanding of death asthe “irreversible cessation of cardiac and respiratory func-tion.” This change supported the development of organdonation by deceased persons. Consensus has also permit-ted the honing of standards for withdrawing and with-holding life-sustaining care and has fostered the authorityof health care agents to act on their judgment that the bestinterest of the patient lies in death. The growth of pallia-tive care services and hospice programs that offer alter-nate, evidence-based medical care for patients at the endof life made the nascent consensus operable.

The Schiavo case reflects the fact that death is the newarena for self-serving professional and partisan preeningand for potential political gain. Death stories feed the in-satiable media machine, which in turn feeds the beast ofdispute on the juicy red meat of dying or moribund pa-tients. This casting of end of life care as an opportunity forconflict is a tragic development. Unfortunately, as theSchiavo case demonstrated, death may be good politics.As the case of Teron Francis illustrates, death can providepriceless media exposure. Both goals provide fodder forthe American conflict mill.

Published news reports of the Francis case set out thebasic narrative without divulging fresh details and violat-ing the patient’s confidentiality:

LATE-NIGHT hosp. drama keeps tragic[Bronx] boy on life support

According to [Robert] Genis [the family’s attorney], thefamily traces Taran’s [sic] illness back to April 6, whenhe had a terrible toothache.

He was taken to Bronx-Lebanon Hospital’s pediatricdental clinic, and scheduled for root-canal surgery onApril 15, the family said.

But when he showed up, in the care of two olderteenage relatives, he was told the surgery couldn’t beperformed. His relatives weren’t old enough to give per-mission for the procedure.

Two days later, on Sunday, Taran’s toothache had devel-oped into a blinding headache, and Marcerlyn [the boy’smother] also was feeling achy and disoriented.

By Monday, Taran was vomiting and seeing double. Hismother called 911 and both were taken to Bronx-Lebanon Hospital.

In the emergency room, doctors examined Taran andtold Marcerlyn the infection that had started as atoothache had traveled to her son’s brain.

That’s when he was wheeled away crying, “Mommy.”

A Family Illness,by Robert Pope

By permission of the Robert PopeFoundation.


Both were admitted to the hospital and assigned to dif-ferent rooms.

Soon after, Taran’s doctors did a spinal tap to see if hewas suffering from meningitis, said Marcerlyn’s sister-in-law, Anne Marie Douglas.

“And ever since then he’s been unconscious,” she report-ed.

“They started doing CT scans, they came up negative,”she said. “Then they did an MRI and found his brainwas swelling.”

On Tuesday, he was transferred to Montefiore.1

Let Teron go in peace—then demand answers

Officials at elite Montefiore, where Teron was trans-ferred last Tuesday said yesterday that the moment theboy arrived at their facility doctors suspected he was al-ready brain dead.

By Thursday, their suspicions were found to be correct.

“Brain death is death,” Montefiore’s Dr. KathrynMcVicar explained. “It is devastating to families becausethey have no idea what that means.”2

TRAGIC KIN WINOnly they can pull plug on boy: judge

Teron’s family had gone to court earlier Friday [April22] after a doctor reportedly told them they had 24hours to grieve before the seventh-grader would betaken off life support.

Hospital officials have repeatedly denied that theyplanned to pull the plug on the boy—and they did soagain yesterday.

“That is not our practice and not our policy,” insistedDr. Gary Kalkut, Montefiore’s medical director. “Ourpolicy is to support and accommodate the family untilthey come to grips with this diagnosis.”3

Additional articles published in New York newspapersduring these events further illustrate the potential for con-flict fueled by media misunderstanding of medical factsthat experts on end of life cases take as a given. They alsoillustrate the sensationalism that is at the core of muchmedia coverage. On April 23, the New York Daily Newsreported:

A BRAIN-DEAD BRONX teen struggled to survivewith the help of a respirator yesterday as his loved oneswhispered into his ear—pleading with him to beat theodds. “Jesus raised Lazarus from the dead and he willraise you,” his grandmother, Lorna Douglas, 68, saidlovingly to the boy. . . .

“What the family really wanted was for God to be call-ing him,” said family lawyer, Robert Genis. “If his heartstops, it stops. They just didn’t want someone to pullthe plug.” . . .

“I believe in miracles,” Marcerlyn Francis said earlierthrough tears while caressing her son’s hand. “His heartis still beating and he’s warm, and I am not going to giveup on him right now.”

Robert Genis, the lawyer for the family, held press confer-ences daily. At one point, he stated that the hospital wasnot providing the appropriate “standard of care” becausethe child was not receiving antibiotics. The NationalChief of Advocates for Disabled Americans, Veterans, Po-lice, Firemen, and Families joined to lobby on behalf ofcare for the child.

Finally, on April 29, the New York Times, which had as-sumed a respectful silence during the conflict, ran a storyunder the headline: “Boy, 13, Dies After Dispute OverLife Support Is Settled.” The Times reported:

Teron Francis, the 13-year-old Bronx boy who slippedinto a mysterious coma about nine days ago, died yes-terday after his parents asked doctors at a Bronx hospi-tal to turn off his respirator. His death ended a bitterfeud between the family’s lawyers and the officials of theMontefiore Medical Center over his care there.

Were this narrative merely an aberration, it might bedisregarded as one more story from the New York Cityborough that brought you the 1970s movie Fort Apache,the Bronx. But this is not an event that will be without se-quelae. Some were immediate. In the middle of the Teron

Rather than reaching a more finely honed consensus about the values

and practices that undergird end of life care, conflict has come to

dominate the discussion.


Francis case the sister of an eighty-two-year old patientwho was brain dead stated that she would “go to court”rather than consider the implications of the determina-tion.

The conflict surrounding the death of Teron Francis re-flects public misunderstandings about medicine and theweaknesses in today’s health care system. It involved achild who died from an easily remedied problem thatclearly would have been addressed in a family betterserved by the health care system. It centered on an AfricanAmerican family who apparently had no relationship witha stable and trusted family physician; was framed by alawyer who saw an opportunity for publicity; and was su-pervised by a judge who saw himself as Teron’s protec-tor—as the “guardian” of this patient, his ward. An insa-tiable media monster that saw good copy and goodfootage seized the story and reported on it daily.

Sources of Conflict

Quinlan, Saikewitz, even Eichner and Storer, occurredin a very different time in American social history.

These early cases, which explored decisions to withdrawmedical treatment and permit death, focused on the fol-lowing questions: Who gets to decide, based on what sortsof rules, with what relationship to the known wishes ofthe patient, and with what possibility of review? And re-view by whom—family or courts, or both? Courts andstate legislatures struggled honorably with these questions.They produced thoughtful opinions and legislation thatgrappled with developing legal and ethical concepts. Theydid so, however, before the advent of twenty-four-hourtalk radio and twenty-four-hour cable television news, andbefore tabloid sensationalism. The evolution in news pre-sentation has produced an insatiable need for new quotesand pictures and has given voice to grossly partisan andself-interested discussants whose comments, by their pre-sentation in the media, gain credence as opinions withmerit. For many listeners and viewers, hearing it on theradio or seeing it on television provides apparent legitima-cy for dubious assertions.

Public misunderstanding is not likely to be the worstoutcome for inaccurate reporting and melodramatic nar-rative. On May 8, 2005, the New York Post and the NewYork Daily News both ran stories that indicated that aBronx Assemblywoman and the judge in the Teron Fran-cis case were planning to introduce legislation to make iteasier for families to contest determinations of death bymedical centers. The Daily News reported that the presid-ing judge, who had attended the boy’s funeral, stated, “Ifound myself forming a special bond with his family be-cause we shared that terrible decision together.” The arti-cle reports, “Assemblywoman Naomi Rivera (R-Bronx)said she will introduce legislation this month to make it

easier for families to contest determinations of death byhospitals until the family have had time to confirm a di-agnosis.” Under her draft bill, whenever a patient is de-clared brain dead, a family member may object to with-drawal of organ support systems and may appeal to thecourt for review of the underlying decision. A New YorkState Supreme Court Judge (in New York the SupremeCourt is the lowest court of general jurisdiction) wouldthen be required to go to the bedside, meet with all par-ties, and rule on whether the patient is really dead. Pend-ing that ruling, “treatment” would have to continue. Onecan only hope that this draft legislation will be deflectedalong its path to law.

The last decade has been one of exponentially increas-ing conflict in medicine. The dynamics of the doctor-pa-tient and provider-patient relationships have been de-formed by the increasing focus, in fact and in the media,on the cost-containment thrust of both managed care andacute care medicine. In the ambulatory setting, physician-patient relationships have been disrupted by employershifts in contracts demanding patient shifts in loyalty. Pa-tients are increasingly aware of these economic inroadsinto medicine, whether they are actually shifted to a newprovider or whether they merely experience a change inthe benefit package, an increase in the copay, or a new bar-rier to vault on the way to second opinions or tertiary careexpertise. The doctor-patient relationship has becomerather crowded with discharge planners, fiscal officers, re-imbursement specialists, and length-of-stay managers.There are simply more parties to any decision and thusgreater potential for misunderstanding, misinformation,disagreement, and dispute.

These areas of potential dispute are often convertedinto actual conflicts by issues of race, color, and class.Class and race matter. They especially matter at the end oflife. The last years have seen the spread of the use of ad-vance directives. Informal surveys of audiences to whom Ispeak have indicated that people who have trusts and es-tates specialist attorneys—people with assets—alwayshave medical advance directives executed as a part of theiradvance care financial planning. But in practice, in theBronx, from the AIDS epidemic until now, care providersfind that patients are almost uniformly uninterested in ad-vance directives designed to limit care at the end of life.Patients in the Bronx, many of them persons of color, areinterested in access to care, not in limiting care.

And it is not merely perceptions of unfairness and dis-crimination that affect the positions of patients and fami-lies. The data are crystal clear: patients of color do not re-ceive care equal to that received by patients who are notminority. Thus it is neither paranoid nor ungrounded forpatients and families of color to question whether the carethey are receiving is the best that medicine can offer.


In its study Unequal Treatment: Confronting Racial andEthnic Disparities in Health Care, the Institute of Medi-cine found that “a consistent body of research demon-strates significant variation in the rates of medical proce-dures by race, even when insurance status, income, age,and severity of conditions are comparable. This researchindicates that U.S. racial and ethnic minorities are lesslikely to receive even routine medical procedures and ex-perience a lower quality of health services.” For example,minorities are less likely to be given appropriate cardiacmedications or to undergo bypass surgery and are lesslikely to receive kidney dialysis or transplants. They arealso less likely to receive opioid analgesics. In contrast,they are more likely to receive certain less-desirable proce-dures, such as lower limb amputations for diabetes.

Resolving Conflict

How can medicine in general and bioethics in partic-ular adjust its practice in this new era of politicized

and polarized death? The Schiavo and Francis cases illus-trate a number of propositions. First, family decision-making does not always comport with the wisdom ofmedicine, law, and bioethics. Second, appeals to prior pa-tient wishes, the gold standard of surrogate choice, maynot resolve difficult decisions about death. Third, privatedecisions may be surfaced by appeals to the media and tocourts, not to mention legislatures and congress. Andfourth, bioethical and legal labels may provide a platformfor and encourage intellectual and emotional chaos. Inthese cases and in many others referred for bioethics con-sultation, the bioethics hook is really the entrée into a full-blown conflict that must be resolved if care is to go for-ward.

These cases illustrate out-of-control, irresolvable con-flict. It is my premise, however, that while conflict is en-demic in medicine and is exacerbated by the emotionalrawness that surrounds the process of dying, it can oftenbe recognized and managed for the benefit of families,providers, and patients. Schiavo and Francis reflect con-flicts that became unmanageable as the result of personalemotional issues. But most cases of disagreement and con-flict are and should be managed as a part of good medicalcare. Leonard Marcus captured the notion of conflict inbiomedical ethics a decade ago:

By its very nature the arena of medical ethics is repletewith conflict. Here principle meets practical: the burdenof allotting limited resources challenges what may be amorally correct course of action; personal encounterspolicy; a hospital-wide procedure may not fit the uniquecircumstances of a particular patient; and a mixed mul-titude, sometimes a whole committee, ponders a ques-tion ultimately in the domain of the individual. In ahealth care setting, doctrines of justice and patients’rights translate into concrete decisions based on imme-diate reality. Although an action may directly affect oneparticular patient, many people affect and are affectedby it, and thus may claim a secondary stake in whathappens. Herein lie the ingredients for conflict.4

That quotation was embedded in the first attempt tostructure a mediation process to guide bioethics consulta-tion. That attempt has since been expanded and sharp-ened in a second edition.5 Both of these didactic guidesassume, based on the experience of a very active clinicalethics service at Montefiore Medical Center, that mostcalls for bioethics consultation are calls to resolve con-flicts. There is generally a bioethical hook on which tohang this first request for consultation, but that hook typ-ically constitutes 5 percent of the problem; the remainderof the issues are facets of conflict. Both works argue thatdispute resolution, specifically mediation, is a proper rolefor bioethics consultation, for two reasons. First, media-tion is one of the most efficient routes to resolving con-flict. Second, and more important, mediation is the routethat best respects differences in the cultures of patients,families, and health care providers.

Having highlighted a case in which conflict exploded,let me describe a case in which conflict abated. The coreissue in this case was that the family of a capable patientwas interfering with his ability to provide ethically ade-quate directives to the team and blocking him from re-ceiving information he had a right to know.6

The case came to my attention when the team in theMedical Intensive Care Unit (MICU) called for abioethics mediation because the staff felt that the familywas preventing them from having a much-needed discus-sion with the patient about his future care. In particular,they felt that this patient, who was alert and aware andhad recently been removed from a ventilator, needed to beinvolved in the decision about whether he would ever beplaced back on a ventilator. They stated that his two sons,

In most disagreements about care, many of which are characterized as

bioethical dilemmas, effective interventions informed by techniques of

dispute resolution and mediation can be found.


who were loving and devoted and stayed with the patientmost of the time, were very opposed to having any dis-cussion that might upset their father.

A meeting with the care team in the MICU—physi-cians, nurses, and social workers—made clear that the pa-tient was very sick, with a history of recovered melanoma,carcinoma of the colon for which surgery had been per-formed, and a series of cardiac problems that the patient'scardiologist thought had “likely been addressed to themaximum medically.” After meeting with the team, I metwith the sons and explained that the team felt obligated tohave some discussion with their patient about what sort ofcare he would want in the future. The sons exploded, say-ing this was unacceptable. I said we would do nothinguntil we had all agreed on what should happen. Aftermuch discussion about the patient and what a terrific per-son and dad he had been, I asked how it would be if Iopened a discussion with him with three questions: Doyou want to discuss your future care with me? Would youwant me to talk to your sons about future care? and Doyou want to have this discussion without your sons beingpresent? The team felt we needed to ask the patient, as hehad just been extubated, whether he would want to be in-tubated again if he should require it medically. Finally, asthere was no health care proxy, I would ask whether hewould like to appoint one of his sons as his health careagent.

Both of the sons were very concerned that the discus-sion not indicate that the care was hopeless and that hewas dying. They indicated that they realized how sicktheir father was, but that they wanted him to retain hope.They described him as an independent and proud personwho needed hope to go on. I described studies that indi-cated that when family members try to shield the patientfrom bad news, the patient usually knows the worst, andthe silence is often translated into feelings of abandon-ment. We negotiated how I would begin the discussionwith the patient and arrived at a format that seemed com-fortable for everybody.

I then reintroduced myself to the patient. The patientwas clearly very weak and tired. I began by asking himwho he would want to make decisions for him if he werenot able to make them himself. Would he want his sons todo so? He answered, “Sure.” I asked him if Sam, the older,should be first, and Harry next in the decision order. Hesaid that was great. The sons said that their dad had neverwanted to sign anything, and I assured them that we hadheard his statements and would place this discussion inthe chart. I asked the patient whether, since he had re-cently been extubated, he would agree to be intubatedagain if the doctors thought he needed to be. He said, “Iwould think about it.” The sons said they, too, wouldthink about it. That appeared to use up the patient’s focus

and energy. Full-blown conflict regarding whether to “tellDad” receded.

Mediation in this case worked with the sons to craft anapproach to their father that they could tolerate, if notembrace. The mediation prevented the bifurcation offamily and staff. It was labor intensive, requiring twohours, but it provided clarity going forward. A short an-swer, enshrining the capable patient’s consent and con-demning the sons, would have created full-blown con-frontation. At the end of life, short answers are inappro-priate; only essays will do.

Generic notions of culture direct our attention to uni-versal attributes of human behavior and to clear legal rulesand ethical principles. Local culture takes into accountfamily idiosyncrasy and the care provider’s history andrefers to those complex systems of meanings that are cre-ated, shared, and transmitted by individuals in particularsocial groups. Local culture directs our attention to diver-sity, difference, and particularity. Patients and familymembers share cultures that are based in ethnic groupidentification, religious affiliations, and shared emotionaland family history. When these diverse patient culturesencounter the abstract notions of medicine, the specificcreated practice of the institution, and the individual edu-cational and social backgrounds of the medical profes-sionals, conflict and disagreement are likely to occur. Veryoften what a bioethical analysis does is to privilege ideasthat are the basis for academic exploration and analysis.This approach favors the dominant medical culture. Me-diation, by contrast, parses those closed systems of analy-sis and intelligence and requires respect for the unarticu-lated values and preferences of the particular patient andfamily. The messy structure of a democratic society de-mands that the principle of “respect for persons” be actu-alized by a process that ferrets out and helps to amplify thesilent value commitments of patients and family mem-bers.

The Schiavo and Francis cases are instances in whichconflict was fueled by medical reality, fanned by self-serv-ing professionals, and in Schiavo, sustained by Americanpolitical divisions. In most disagreements about care,however, many of which are characterized as bioethicaldilemmas, effective interventions informed by techniquesof dispute resolution and mediation can be found. Inmost instances of patient care, there are medical optionsfrom which to choose. The choice is directed not exclu-sively by medical determinants, but far more by issues ofreligion and personal values. These techniques of disputeresolution can be mastered and put at the ready for con-flicts as they emerge, rather than waiting for them to be-come intractable.

Bioethics mediation is a process in which the mediatorfacilitates a discussion between and among the parties tothe conflict. This person comes fresh to the facts of the


case, impartial to the situation of the case, uninvolved inthe prior treatment decisions in the case, and unalliedwith any party in the particular disagreement. The medi-ator helps the parties to identify their goals and prioritiesand to generate, explore, and exchange information andoptions. The mediator identifies styles and patterns ofcommunication and is alert to the differentials of powerand authority that inevitably infuse medicine, especiallyprovision of acute care. Bioethics mediation combines theclinical substance and perspectives of bioethics consulta-tion with the tools and techniques of the mediationprocess in order to:

• identify the parties to the conflict;

• understand the stated and latent interests of the par-ticipants;

• level the playing field to minimize disparities of power,knowledge, skill, and experience (to the degree possible)that separate medical professionals from the patient andfamily;

• search for a common ground, especially one that istime sensitive;

• ensure that the consensus reached is a “principled res-olution,” in light of legal rights and ethical scholarship;and

• follow up to be sure that the agreement reached hassufficient structural supports to become the reality ofcare.

This process, which is itself a part of the product, differsdramatically from articulated proscriptions for bioethicsconsultation. Many clinical ethics professionals state thatthis process describes, in large measure, what they do inthe hurly-burly of their consultations. Nonetheless, thevalue added from articulating these guidelines and adher-ing to their notions of evenhandedness is that it providesgreater rigor in bioethics consultation and a commitmentto the essay answer, not the selection among multiplebrief, seemingly principled choices.

Mediation is especially suited to conflicts at the end oflife because time is of the essence; deciding not to reach adecision is not an option. Medical decisions, especiallythose about life and death interventions, have their ownrhythm. The juggernaut of care is likely to roll forward

but for the sort of explicit, time-sensitive decisions thatmediation can facilitate. In addition, mediators are opti-mists, and they often enter scenes where staff are discour-aged and dispirited. Optimists are useful guides, especial-ly when they can teach about the process and the norms,act as a reference point for new literature, and function asa mentor in the mores and culture of the institution. Mostimportant, mediators translate doctor-speak into languagethat is accessible to patients and family members, andthey help to amplify nonmedical voices.

Not all cases can be mediated. Some, like that of TeronFrancis, explode before the care team realizes there is aconflict. Others, like Schiavo, are fueled by such deep lev-els of distrust and fanned by such strong advocates for ab-solutes that intervention will likely fail. But for many endof life conflicts, mediation can provide a process to assistin the formation of a care plan that meets the needs of thepatient and family and respects professional commit-ments. Moreover, as principled bioethics confronts multi-cultural contexts, feminist ethics, and narrative ethics,mediation may help to close the gap between individualrights and interests and notions of the public good. As anopen, collaborative, problem-solving intervention, it isparticularly suited to addressing care at the end of life,which is increasingly caught in a national political web ofconflicting interests.

Conflict in life is inevitable. Conflict in health care,given the stakes and the context, is endemic. Conflict inend of life decisions is sad and potentially destructive forsurviving family members. Skilled providers who are com-mitted to managing, not banishing, disputes can help totame some conflicts. Medical providers must acquire theskills of dispute resolution to counteract the effects of pol-itics and media on the stories of life’s endings.

1. D. Montero, D. Buffa, and A. Kranes, “Late-Night HospitalDrama Keeps Tragic Bronx Boy on Life Support,” New York Post,April 23, 2005, 4.

2. A. Peyser, “Let Teron Go in Peace—Then Demand Answers,”New York Post, April 26, 2005, 7.

3. D. Buffa and M. White, “Tragic Kin Win: Only They CanPull Plug on Boy: Judge,” New York Post, April 26, 2005, 7.

4. N.N. Dubler and L.J. Marcus, Mediating Bioethics Disputes(New York: United Hospital Fund, 1994).

5. N.N. Dubler and C.B. Liebman, Bioethics Mediation: A Guideto Shaping Shared Solutions (New York: United Hospital Fund,2004).

6. All identifying material in this case has been changed to pro-tect the privacy of the patient and his family.


T he development of new, life-prolonging medicaltechnologies in the 1970s aroused concernamong Americans about the indiscriminant use

of aggressive, life-prolonging treatments. Highly publiccases such as those of Karen Ann Quinlan and NancyCruzan drew attention to the importance of end of lifecare planning for healthy adults. Advance directives weredeveloped as a way for people to retain control over theirmedical care by specifying their treatment values andchoices and by naming someone to make medical deci-sions once they were no longer able to do so. Over thepast several decades, it has become clear that statutoryadvance directives alone have not been as successful asoriginally hoped in giving patients control over their endof life care. However, the initial goal of advance directiveswas laudable and is worth preserving. Promising newmodels have evolved from practice and research thatmove us closer to achieving the original intent of advancedirectives.

Most traditional advance directives, such as statutoryliving wills and surrogate appointments, were created bylegislative processes that set specific requirements aboutcontent and established rules regarding their use to de-fine the rights of adults to forgo medical treatment, toprotect providers who honor these decisions, and to ap-point an authorized surrogate decision-maker. Statutoryliving wills are a tool for patients to express preferencesabout medical treatments that can be used if a person isno longer able to make his or her own decisions. These

documents typically focus on potentially life-prolongingtreatments in a very limited set of circumstances, such aswhen a person is faced with “imminent death regardlessof treatment” or is in a “persistent vegetative state.” Inmost states, a person can also designate a surrogate tomake decisions in the event the patient loses decisionalcapacity. Depending on state law, a surrogate may becalled a health care proxy or agent, medical power of at-torney, or durable power of attorney for health care.

Limitations of Traditional Advance Directives

Despite the hope that traditional advance directiveswould ensure that patient preferences are honored,

numerous studies have found that only a minority (20 to30 percent) of American adults have an advance directiveand that these documents have limited effects on treat-ment decisions near the end of life, though more recentresearch suggests use may be higher at the end of life. Inaddition to a low completion rate, there are many reasonswhy traditional advance directives are less successful thanoriginally hoped. These reasons include the following:

(1) The focus is often on a patient’s legal right to refuseunwanted medical treatments, reflecting the legislativeorigins of traditional advance directives. Those whocomplete such documents generally do not receive as-sistance in understanding or discussing their underly-ing goals and values.

(2) The instructions given in these documents and thescenarios provided for discussion are generally eithertoo vague to be clear (for example, “If I am close todeath”) or too medically specific to be helpful in com-

Hope for the Future:Achieving the Original Intent of

Advance Directives

b y S U S A N E . H I C K M A N , B E R N A R D J . H A M M E S , A LV I N H . M O S S , A N DS U S A N W. TO L L E

Susan E. Hickman, Bernard J. Hammes, Alvin H. Moss, and Susan W.Tolle, “Hope for the Future: Achieving the Original Intent of Advance Di-rectives,” Improving End of Life Care: Why Has It Been So Difficult? Hast-ings Center Report Special Report 35, no. 6 (2005): S26-S30.


mon clinical situations (for example, “If I am in a per-sistent vegetative state”).

(3) Vague instructions result in conversations that pro-duce equally vague expressions of wishes such as “Donot keep me alive with machines” or “Let me die if I ama vegetable.”

(4) Once advance directives are completed, planning istypically considered finished. A systematic effort to re-open the conversation as a person’s health declines israrely made. The only repeated question that a patientmight hear is, “Do you have an advance directive?” asrequired by the Patient Self-Determination Act.

(5) Traditional advance directives are seen as a right ofthe patient, with little attention given to routinely inte-grate planning into the clinical care of patients.

(6) Traditional advance directives are based on the as-sumption that autonomy is the primary mode of deci-sion-making for most people. However, many people inthe United States, particularly those from non-Westerncultures, conceptualize the broader social network as thebasis of treatment decisions, not the wishes and needs ofthe individual. Patients may also choose to delegatetheir autonomy to a family member, religious leader, orothers, and defer discussions about prognosis and treat-ments for cultural or other reasons.

(7) In selecting a surrogate, a patient authorizes some-one to speak on his or her behalf; however, advance di-rectives typically do not include directions for the surro-gate or health care professionals about treatment prefer-ences unless special instructions are also provided. Addi-tional information about values and goals is importantto assist surrogates in decision-making during stressfultimes.

(8) Some patients may wish for their surrogates’ or fam-ilies’ interests to be taken into account in decision-mak-ing rather than expecting the surrogate to base decisionssolely on the wishes of the patient using a substitutedjudgment standard. Research suggests that many pa-tients do not expect surrogates to rigidly follow theirtraditional advance directives, but rather intend for sur-rogates to exercise judgment to determine the course ofcare when there is insufficient information available orfor extenuating circumstances.

In response to the difficulties with traditional legalisticadvance directives, clinicians and researchers have devel-oped new models that preserve the original goal of ad-vance directives while addressing their shortcomings. One

well-known example is “Five Wishes,” a document thatincorporates a surrogate appointment with a range ofwishes about medical, personal, spiritual, and emotionalneeds (www.agingwithdignity.org). Five Wishes offers ad-vantages over traditional advance directives because it cov-ers a range of issues typically not found in statutory livingwills or health care power of attorney documents, such ashow comfortable a person wants to be or how he or shewishes to be treated if unable to speak for him or herself.Five Wishes meets the legal requirements for advance di-rectives in thirty-seven states and the District of Colum-bia. Unfortunately, there are no published research studiesto support the efficacy of Five Wishes in guiding surro-gates and health care professionals or in ensuring thatwishes are honored.

“Let Me Decide” is a recently developed Canadianprogram with empirical data to support its effectiveness(www.newgrangepress.com) The program was studied ina randomized, controlled trial of 1,292 residents at agroup of regional nursing homes and hospitals in On-tario. Residents and their family members had an oppor-tunity to document a range of health care choices regard-ing levels of care, nutritional support, and cardiopul-monary resuscitation. The program was implemented sys-tematically and nursing home staff received training inhow to integrate the advance directive into clinical care.Results indicate that the intervention group had a higherprevalence of planning. Additionally, plans were morespecific, residents were less likely to die in the hospital,fewer resources were used, and families were more satis-fied with the process than were family members in thecontrol facilities using more traditional advance care plan-ning.1

In La Crosse, Wisconsin, “Respecting Choices” beganin 1991 as part of a community-wide care planning sys-tem (www.gundersenlutheran.com/eolprograms). Localhealth care systems developed institutional policies to en-sure that written advance directives were always availablein their medical records when needed. Components ofthe program include staff education about the programand advance care planning; clearly defined roles and ex-pectations of physicians; training for advanced care plan-ning facilitators; routine public and patient engagementin advanced care planning; clinically relevant advance di-rectives incorporated into clinical care; and written proto-cols so that emergency personnel can follow physician or-ders that reflect patient preferences. Quality improvementprojects were undertaken to measure outcomes and to im-prove parts of the system when they did not perform inthe way intended.2

A study of the Respecting Choices program evaluatedLa Crosse County deaths over an eleven-month period(524 in all). Eighty-five percent of all decedents had sometype of a written advance directive at the time of death; 96


percent of written plans were found in the medical recordwhere the person died; and treatment decisions made inthe last weeks of life were consistent with written instruc-tions in 98 percent of the deaths where an advance direc-tive existed. Decedents with written advance directiveswere also significantly less likely to die in the hospital (31percent versus 68 percent, p=0.001). Respecting Choicesis now being implemented by more than fifty-five com-munities and organizations in the United States andCanada and is being piloted nationwide in Australia.

One of the most studied systems of advance care plan-ning and documentation is the “Physician Orders forLife-Sustaining Treatment” paradigm, originally devel-oped in Oregon (www.polst.org) and complementary toRespecting Choices (in fact, the Respecting Choices pro-gram strongly advocates use of the POLST paradigm todocument physician orders in the out-of-hospital setting).The POLST form is designed for patients with serious ill-ness and advanced frailty. The centerpiece of the programis the POLST document, a brightly colored medical orderform that converts patient treatment preferences intowritten medical orders based on a conversation amonghealth care professionals, the patient, and/or surrogatesabout treatment goals (see figure 1). The form transferswith patients across care settings to ensure that wishes arehonored throughout the health care system. The POLSTform is an example of an actionable advance directive thatis specific and effective immediately. In a prospectivestudy at eight nursing homes, residents whose POLSTforms included a do not resuscitate (DNR) order and anorder for comfort measures only were followed for oneyear. None received unwanted intensive care, ventilatorsupport, or cardiopulmonary resuscitation.3

In contrast to the varied out-of-hospital DNR ordersused around the country, the POLST paradigm providespatients the opportunity to document treatment goalsand preferences for interventions across a range of treat-ment options, permitting greater individualization.4 Re-search suggests that the POLST form accurately repre-sents patient treatment preferences the majority of thetime5 and that treatments at the end of life tend to matchorders.6 A majority of nursing homes and hospices inOregon use the voluntary POLST Program, and POLSTis widely recognized by emergency medical services.7 Atleast thirteen states have adapted versions of the POLSTprogram, including Oregon, Washington, West Virginia,Utah, and parts of Wisconsin, New York, Pennsylvania,North Carolina, New Hampshire, Tennessee, and Michi-gan, reflecting a high degree of acceptance by health careprofessionals. Each state has made minor alterations tothe document to accommodate local regulations andstatutes. A National POLST Paradigm Task Force formedin 2004 to support national growth of the program.

Elements of Successful Advance DirectivePrograms

The newer, more successful, clinically based advancedirective programs share key elements: a facilitated

process, documentation, proactive but appropriatelystaged timing, and the development of systems andprocesses that ensure planning occurs.

First, successful advance directive programs are notlimited to the content or rules relating to legal docu-ments. Instead, an individualized plan is developedthrough a process of interaction with the patient that isspecific not only to the patient’s values and goals, but alsoto his or her relationships, culture, and medical condition.Advance care planning should focus on defining “good”care for each patient, rather than on simply listing theright to refuse treatment or promoting individual autono-my. A skilled facilitator can enhance advance care plan-ning by engaging those who are close to the patient sothat they understand, support, and follow the plans thatare made. The process permits shared or delegated deci-sion-making depending on the beliefs and preferences ofthe patient. Facilitators should encourage patients andsurrogates to discuss how much leeway a surrogate has indecision-making.

Second, for advance directive programs to be imple-mented successfully as a patient moves between differenttreatment settings, documentation of wishes, goals, andplans is essential. This documentation should include theidentity of a designated surrogate. Ideally, this documen-tation would be in the form of actionable advance direc-tives that direct treatment with specific medical orders re-flecting a patient’s current treatment preferences—in con-trast to traditional advance directives that address prefer-ences in hypothetical future scenarios. To be truly effec-tive, the actionable advance directive form must be stan-dardized and recognized throughout the broader healthcare system, and it must provide clear, specific languagethat is actionable in all settings to which a patient mightbe transferred. The power of actionable advance directivesis most completely realized in a system in which all insti-tutional entities that interact with the patient (health carepersonnel in emergency medical services, emergency de-partments, hospitals, nursing homes, hospices, homehealth care, and others) recognize the actionable advancedirective form and are authorized to follow its written or-ders.

Third, successful advance directive programs also re-quire proactive but appropriately staged timing: some dis-cussion should anticipate health care decisions, but muchof it must be revisited as the patient’s prognosis becomesknown. For an otherwise healthy patient, the presump-tion is that the treatment goal is to return to his or herprior state of health. Individuals who fit this descriptiondo not need an advance directive to guide initial treat-


ment. However, healthy adults can benefit from theprocess of advance care planning to prepare for sudden,severe illness or injury. Healthy adults should appoint atrusted family member or friend to serve as a health caresurrogate who can act as a strong advocate in the event

that they are unable to speak for themselves. Healthyadults should also discuss with their surrogates whetherand when a permanent loss of neurological functionwould be so bad that the goals of medical care wouldchange from prolonging life to providing comfort, and

Figure 1. Sample POLST Form from Washington State


they should address the degree of leeway that they grantto the surrogate.

In people with advanced chronic disease and frailty,planning should expand to include discussion of changingtreatment goals. Success rates for interventions decline asdisease and frailty progress, and patients’ evaluations ofthe desirability of interventions often change in the face ofthis new reality. Patients and families look to health careprofessionals to initiate conversations about end of lifecare planning, and it seems most relevant to broach thetopic in the context of a limited prognosis. Once theprognosis has been discussed, health care professionals(but not necessarily physicians) trained to facilitate ad-vance care planning discussions can help guide patients sothat plans are specific not only to the patient’s experi-ences, values, and goals, but also to the patient’s healthcondition, culture, and personal relationships. This plan-ning should focus on treatment goals in scenarios likely tooccur in the course of that person’s chronic disease. Com-pletion of an actionable advance directive may be particu-larly helpful at this time.

Finally, perhaps the most crucial elements of more suc-cessful advance directive programs are policies, proce-dures, and teamwork within each part of the health caresystem that ensures advance care planning and implemen-tation occurs. Plans need to be clear and should reflect theindividual’s values and goals. Plans should be updatedover time and available when needed; whenever possible,plans should be honored. A successful model requires theestablishment of systems at many levels to achieve thesegoals. Health care organizations can create policies andprocedures to assure that any written plan is availablewhen needed. The roles and responsibilities of differenthealth professionals must be clearly defined so that eachperson knows his or her part and can perform it. Further-more, optimal performance of each player’s role benefitsfrom periodic assessment, which requires that health or-ganizations conduct quality improvement initiatives toensure that the implemented system achieves the desiredoutcomes. Organizations should be prepared to gather thenecessary information to improve the system when andwhere it falls short.

For advance directives to be effective, they need to beintegrated into each part of the system of care, includingemergency medical service protocols and regulations.State statutes vary regarding traditional advance directives,surrogate appointment, and other relevant factors, such asemergency medical technicians’ scope of practice. There-fore, state end of life coalitions consisting of key stake-holders (emergency medicine, long-term care, hospice,nurses, physicians, and health lawyers, among others) mayneed to identify and overcome state-specific regulatory,legal, and cultural barriers to the implementation of opti-mal advance care planning.

The original intent of advance directives to enable pa-tients to retain control over their terminal care once theylose decision-making capacity was not fully achievedthrough the use of the traditional advance directives. New,more successful models address the limitations of the tra-ditional models yet remain true to the concept’s originalintent. The key elements of these new models are advancecare planning in a system with specially trained personnel;highly visible, standardized order forms that are immedi-ately actionable; proactive, appropriately staged timing;ongoing evaluation and quality improvement.

For these new models to be used more broadly, systemsto implement them will need to be established in eachstate and within every health organization. These systemsneed to ensure that traditional and actionable advance di-rectives are written at the appropriate time, that they arerecognized, and that they are honored. Given the initialsuccess of these models, it is reasonable to believe that theoriginal goal of advance directives—to ensure respect forpatients’ treatment wishes at the end of life—can and willbe more completely realized in the future.

1. D.W. Molloy et al., “Systematic Implementation of an Ad-vance Directive Program in Nursing Homes: A Randomized Con-trolled Trial,” Journal of the American Medical Association 283, no.11 (2000): 1437-44.

2. B.J. Hammes and B.L. Rooney, “Death and End-of-Life Plan-ning in One Midwestern Community,” Archives of Internal Medi-cine 158 (1998): 383-90.

3. S.W. Tolle et al., “A Prospective Study of the Efficacy of thePhysician Orders for Life Sustaining Treatment,” Journal of theAmerican Geriatrics Society 46, no. 9 (1998): 1097-1102.

4. S.E. Hickman et al., “Use of the POLST (Physician Orders forLife-Sustaining Treatment) Program in Oregon: Beyond Resuscita-tion Status,” Journal of the American Geriatrics Society 52 (2004):1424-29.

5. J.L. Meyers et al., “Use of the Physician Orders for Life-Sus-taining Treatment (POLST) Form to Honor the Wishes of NursingHome Residents for End of Life Care: Preliminary Results of aWashington State Pilot Project,” Journal of Gerontological Nursing30, no. 9 (2004): 37-46.

6. M.A. Lee et al., “Physician Orders for Life-Sustaining Treat-ment (POLST): Outcomes in a PACE Program,” Journal of theAmerican Geriatrics Society 48 (2002): 1219-25.

7. T.A. Schmidt et al., “The Physician Orders for Life-SustainingTreatment (POLST) Program: Oregon Emergency Medical Techni-cians’ Practical Experiences and Attitudes,” Journal of the AmericanGeriatrics Society 52 (2004): 1430-34.


E arly in 2005, a real-life drama and two acclaimedfilms engaged the nation in discussions of issuesthat had been a staple of the end of life field for

over twenty-five years. Terri Schiavo’s medical conditionresembled that of Nancy Cruzan, whose family had suc-ceeded in convincing the United States Supreme Courtto remove her feeding tube. Hollywood’s Million DollarBaby and Spain’s The Sea Inside reminded many of theBroadway play and movie, Whose Life Is It Anyway, inwhich a sculptor, like the boxer and the diver of the con-temporary films, chose death over life with disability. Thepowerful reactions to these motion pictures, the contro-versy over the Schiavo case, and, in Boston, a public dis-pute between a leading hospital and a patient’s familyover the withdrawal of life support, underscore our ur-gent need to reform how Americans deal with life-pro-longing or life-ending decisions.

Sometimes the media, the public, and professionals inend of life treatment and policy frame the debate interms of “quality of life” versus “sanctity of life,” but thiscasting oversimplifies the story and neglects critiquesfrom people who share many values espoused by the endof life movement but nonetheless oppose some views thatpervade the field. A sensitive decision-making processand sound conclusions demand weighing several factors:what gives life meaning and value for a particular indi-vidual; what circumstances or setting would permit theill, disabled, or dying patient to derive comfort and ful-fillment in existing relationships, experiences, or activi-

ties; whether a presumed decision-maker should ever bereplaced by another person in the patient’s life; andwhether any factors other than patient and family prefer-ences should influence life-ending decisions.

Evolving Views of End of Life and Disability

In the years since the 1976 case of Karen Ann Quinlan,much greater weight has been given, both in law and

the culture at large, to informed consent; to the experi-ences, views, and needs of patients and families in themedical encounter; to respect for patient autonomy andfamily decision-making; and to the quality, not merelythe preservation, of an individual’s life. These beliefs havemeshed well with the efforts of feminists and other mar-ginalized groups to equalize the power relations betweendoctor and patient, and they have also supported twenty-first century cultural norms of self-fulfillment, self-deter-mination, and control over one’s destiny. These idealsshould have promoted an alliance between end of life re-form, the emerging scholarship of disability studies, andthe movement for disability rights and equality. Unfortu-nately, many scholars and practicing health care profes-sionals have failed to grasp crucial insights of disabilityscholars or activists. Despite the common cause of dis-ability scholars and activists with those in the end of lifemovement around maximizing self-determination andgiving more respect and authority to patients in their en-counters with medicine, the end of life movement hassharply differed with disability theorists and activists inunderstanding how illness and impairment affect qualityof life.

Thanks to the sustained efforts of scholars, clinicians,and grassroots citizen groups like Compassion in Dying,

Recognizing Death while Affirming Life:

Can End of Life Reform Uphold a Disabled Person’s Interest in Continued Life?

b y A D R I E N N E A S C H

Adrienne Asch, “Recognizing Death while Affirming Life: Can End of LifeReform Uphold a Disabled Person’s Interest in Continued Life?” ImprovingEnd of Life Care: Why Has It Been So Difficult? Hastings Center Report Spe-cial Report 35, no. 6 (2005): S31-S36.


both clinical practice and case law recognize that ill ordying patients and their intimates often are concernedabout their experiences and relationships during whatevertime they have left to live, not merely with how long theymight be maintained by medications, feeding tubes, andbreathing machines. Disability activist and lobbyinggroups such as Not Dead Yet or Americans Disabled forAttendant Programs Today (ADAPT) also espouse thegoals of creating and maintaining opportunities for ill,disabled, or dying people to enjoy fulfilling, meaningfulrelationships, activities, and experiences for howevermuch time they will live. Compassion in Dying and NotDead Yet differ in their policy and practice goals for tworeasons: they focus on different kinds of paradigm cases,and they have profoundly different understandings ofhow illness and disability affect life’s meaning and re-wards. The typical case for the misnamed “right to die”movement is an elderly man or woman in the final stagesof an inevitably terminal illness, who will soon die regard-less of how much medical treatment is invested in his orher last days or weeks. The case that fuels the disabilityrights movement is that of a relatively young person witha disability, who could live for several years with the con-dition, but who instead asks to die—as in Million DollarBaby, and as in many real-life cases.

Although mainstream reformers have criticized theway professionals often dealt with patients and their fam-ilies, the mainstream has too often accepted medicine’sview that illness and disability inevitably diminish life’squality. In contrast, disability theorists and activists pointto research demonstrating that people with physical, sen-sory, and cognitive impairments can and do obtain manysatisfactions and rewards in their lives. When people withillness and disability report dissatisfaction and unhappi-ness, they link their distress not to physical pain or to re-liance on medications, dialysis, or ventilators, but to thosefactors that also trouble nondisabled people—problemat-ic relationships, fears about financial security, or difficul-ties in playing a valued work or other social role.

Disability theorists and activists endorse the growth ofhospice, palliative care, pain relief, and greater attentionto the psychological and social needs of patients and theirloved ones; however, they argue that endorsing treatmentwithdrawal from people simply because their health or

their capacities are impaired undermines the goals ofhuman dignity, patient self-respect, and quality of life.Such goals are best achieved by helping people discoverthat changed health status and even impaired cognitionneed not rob life of its value. Respect for self-determina-tion and human dignity entails a commitment to foster-ing the activities, experiences, and relationships that en-rich an individual’s life by finding techniques and re-sources to use those capacities that remain. In the case ofElizabeth Bouvia, a woman disabled by cerebral palsy andpainful arthritis who sought aid in dying, the CaliforniaCourt of Appeals supported her request to end her life byfocusing on her limitations, pointing to her physical im-mobility and her need for assistance with tasks like eatingand toileting. Although the court described her as “alert”and “feisty,” it also characterized her as “subject to the ig-nominy, embarrassment, humiliation and dehumanizingaspects created by her helplessness.” The 1996 court deci-sion that supported physician-assisted suicide in Washing-ton v. Glucksberg was filled with similar portrayals of lifewith impairment: it referred to people who are in a “child-like state” of helplessness, as exemplified by physical im-mobility or by their use of diapers to deal with inconti-nence.

The disability critics of the California court decisionrevealed an entirely different side to the Elizabeth Bouviastory. They focused on her remaining capacities and onthe social and economic problems that contributed to herisolation and depression. Educational discrimination hadprevented her from using her mind; she had been deniedthe full amount of personal assistance services that wouldhave enabled her to stay in the community; and her de-pression, which stemmed from serious family problems,would have been immediately treated in a nondisabledperson who had attempted suicide.

Many of the disability theorists and activists whoprotested the court decisions in the Bouvia case—and inthe similar Michigan case of David Rivlin, who becamequadriplegic and sought death rather than remaining in anursing home—have very similar physical conditions butentirely different life circumstances. By recruiting paid orvolunteer personal assistants, they live in their own homesby themselves or with family and friends. They are in thecommunity, not in institutions. They hold jobs, engage in

When data reveal that the fear of burdening others is of greater

concern to patients who seek suicide than concerns about finances or

physical pain, how can we know the decision to end life is not a

response to the patient’s fear that she is disliked, distasteful to, and

resented by the very people from whom she seeks support?


volunteer activities, visit friends, go out to din-ner or the movies, and generally participate inordinary family, civic, and social life. Wheel-chairs do not confine; they liberate. Voice syn-thesizers aid communication for people whocan no longer speak. Diapers or catheters areakin to eyeglasses. Using the services and skillsof a personal assistant who helps them get intoand out of bed, eat their meals, or travel totheir next appointment is no more shameful orembarrassing than it is for a nondisabled per-son to work closely with an administrative as-sistant or to value the expertise of a mechanic,plumber, or the magician who restores dataafter a computer crash.

Fortunately, some respected mainstreamscholars have acknowledged that societal toler-ance of death for people who could live formonths or years with disabilities stems frommisunderstanding, fear, and prejudice. Ex-cerpts from one clinician-philosopher’s recentreflections demonstrate a new receptivity to thedisability critique of typical end of life practice and policy.

I am now embarrassed to realize how limited was thebasis on which I made my decisions about DavidRivlin. . . . [T]here was no medical need for Rivlin to beeffectively incarcerated in a nursing home. If Rivlin hadbeen given access to a reasonable amount of communi-ty resources, of the sort that other persons with disabili-ties were making use of at the time, he could have beenmoved out of the nursing home and probably couldhave had his own apartment. He could have been muchmore able to see friends, get outside a bit, and generallyhave a much more interesting and stimulating life. . . .If we look at a case one way, it seems that the problemis the person’s physical disability. If we shift our view, werealize that the problem is not the disability, but ratherthe refusal of society to make reasonable and not terri-bly expensive accommodations to it.1

In his 1979 book Taking Care of Strangers, Robert Burt ex-posed the common discomfort of health care profession-als in the presence of patients with very significant im-pairments: “Rules governing doctor-patient relationsmust rest on the premise that anyone’s wish to help a des-perately pained, apparently helpless person is intertwinedwith a wish to hurt that person, to obliterate him fromsight.” Speaking of a burned and very disfigured patient,Burt contended: “He is a painful, insistent reminder toothers of their frailty, an acknowledgement that, in the

routine of everyday life, is ordinarily suppressed. Otherscannot avoid wishing that he, and his unwanted lesson,would go away. He cannot avoid knowing this of othersand wishing it for himself.”

Toward Further Change

These insights should prompt clinicians and policy-makers to question how truly autonomous is any-

one’s wish to die when living with changed, feared, anduncertain physical impairments that lead to anguish andto interpersonal struggles with the very professionals, fam-ily members, and friends who are assumed to be supportsin a time of trouble. The spirit of such observations illus-trates the danger of relying on a simple notion of patientautonomy when deciding to withdraw life-sustainingtreatment.

Consider this case from the end of life literature, re-ported by M. Edwards and Susan Tolle: Their patient—conscious, alert, with mobility impairments that had last-ed for forty years—had recently developed breathingproblems that necessitated use of a ventilator, which ren-dered him unable to speak. Finding this increased disabil-ity intolerable, he sought death, and family, professionals,and the hospital ethics committee concurred with his au-tonomous wish. Edwards and Tolle proposed a seven-stepprocedure to assure themselves that such an aided death isacceptable. Absent from their analysis is any exposure to

Curtain, by Robert PopeBy permission of the Robert Pope Foundation.


or contact with people who have more than two weeks ofexperience living as ventilator users. The case descriptionprovides no information on how effectively this patientwas communicating (whether by writing, pointing to let-ters and words, or using a communication technology). Itcontains no information about whether this man’s deci-sion was affected by concerns over how his relationshipswith family and friends might be changed by his differentmeans of communication. Presumably these cliniciansknew that nonvocal but conscious and responsive individ-uals have been able to interact in family and work settings.One wonders why these clinicians did not urge suchmeans upon this patient before acceding to his pleas fordeath rather than life without speech. He may have beenpsychologically abandoned by his family and clinicianswhen he most needed their energy, resourcefulness, andimagination to help him devise a new way to express him-self.

The most recent report on the workings of Oregon’slaw on physician-assisted suicide offers yet another illus-tration of social rather than medical issues at work in re-quests for assisted dying. The most frequently cited rea-sons for seeking to die stemmed from loss of enjoyable ac-tivities, loss of autonomy, and loss of dignity. Yet thesewere mentally alert individuals who should have beenaided by professionals and their own social networks todiscern that autonomy and dignity can reside in self-ex-pression, in determining what activities to pursue, and inobtaining the assistance to undertake them. This refram-ing of autonomy and dignity is urgently necessary as away to restore self-respect and pride to people who feelshame at needing physical or emotional help from thosearound them. Have they lost their own ability to providelove, support, friendship, and guidance to their familiesand friends, and if so, what professional psychologicalhelp might let them regain those capacities? Or have theylost their connections to the social world, and so been de-nied a way to give and to receive help and support?

For people living with disabilities, the data on Oregon’sassisted suicides provokes concern. One can respect indi-vidual choice but worry that the Oregon data, like thecase involving ventilator withdrawal, graphically supportBurt’s reflections on the ambivalence of health care pro-fessionals and families toward people with significant dis-ability. When these data reveal that fear of burdening oth-ers is of much greater concern to patients who seek suicidethan concerns about finances or physical pain, then howcan professionals and families know that the supposedlyautonomous wish to end life is not a response to a pa-tient’s deep fear that she has become disliked, distastefulto, and resented by the very people from whom she seeksexpertise, physical help, and emotional support? Andwhen we learn that divorced and never-married individu-als are twice as likely as married or widowed people to use

physician-assisted suicide, we must ponder whether a sin-gle dying person feels especially alone and abandoned. Itis probably the rare friend who has the time, energy, orwillingness to make a sustained, reliable, and deep com-mitment to live through another’s illness and death. Oncethe severely disabled, ill, or dying person is seen as“other”—as different, not quite in the human and moralcommunity, even past friendship and familial bonds—so-cial bonds can diminish. To anyone with the capacity toperceive the difference between warmth, toleration, andcoldness in how he or she is treated by others, the thoughtof days, months, or years of life subject to resentful, duty-filled physical ministrations may be a fate worse thandeath, akin to imprisonment and solitary confinement.What needs to change is not the patient’s physical or cog-nitive situation, but the emotional and interpersonal envi-ronment; that environment can change only when profes-sionals lead the way to supporting the capacities and andthereby affirming the humanity of severely ill and immi-nently dying people.

Once we have understood the disability community’sconcerns about cases involving alert people with physical,but not cognitive and affective disabilities, we can betterunderstand the reaction to the unfortunate case of TerriSchiavo. By the time her husband sought to withdraw herfeeding tube, all the medical experts were certain that shehad not even minimal cognitive capacity or conscious-ness. Schiavo’s supporters in the disability communitywere almost certainly mistaken about her potential for in-teraction or responsiveness, and they may have done dam-age to their efforts to join with others seeking to reformtreatment of disabled or dying people. Yet the apprehen-sion in the disability community, apprehension about so-cietal indifference and neglect, is more understandableafter reviewing a few of the many instances in which law,medicine, bioethics, and government programs failed tohelp traumatically disabled patients discover the financial,technological, social, and psychological resources thatcould sustain them and provide the opportunity for re-warding life. When people with relatively intact cognitiveand emotional capacities are neglected, neglect is evenmore likely for those with greatly diminished cognitiveand emotional function.

Although the intense court reviews of Schiavo’s situa-tion consistently confirmed her PVS diagnosis, profes-sional literature contains scattered information on pa-tients who were misdiagnosed as being in that state andwere consequently denied rehabilitation and treatmentfrom which they might have benefited. Some misdiag-nosed patients have limited ability to respond meaning-fully to others; this diagnostic error cost such patients be-tween one and four years of interaction with people andthe world around them. It is rare for courts or scholars tochampion continued treatment for cognitively impaired


people who might still enjoy some level of life satisfactionand human interaction.2

The disability equality perspective on end of life andtreatment withdrawal cases described here should demon-strate that the alliance of disability studies and disabilityrights with the evangelical religious groups is more appar-ent than real. Disability critics of much health care prac-tice share more with end of life reformers who seek to pro-mote an emphasis on respect for the dignity and capacitiesof people facing illness, disability, and death. Like these re-formers, they seek the means for maintaining dignity andcapacity; the aptly named Not Dead Yet strives to con-vince people with disabilities, their families, and theirhealth care providers that people can still find satisfactionand quality in their lives. The president of Not Dead Yetclearly articulated the ways in which disability oppositionto life-ending decisions is truly a quest for quality, ratherthan sanctity, of life:

The far right wants to kill us slowly and painfully bycutting the things we need to live, health care, publichousing and transportation, etc. The far left wants tokill us quickly and call it compassion, while also savingmoney for others perhaps deemed more worthy.

[W]e also have an attitude about disability that divergesfrom the mainstream. . . . Frankly, I think that’s why wewere deliberately excluded from the last decade of poli-cy making conducted off the public radar screen, whythe right-wing-left-wing script was so important . . . nomatter how untrue and exclusionary.3

These comments lead to a case with disturbing implica-tions for mainstream discussions of patient autonomy,family decision-making, and professional obligation. Bar-bara Howe, a seventy-nine-year-old woman with amy-otrophic lateral sclerosis, using a ventilator, was beingtreated at Boston’s Massachusetts General Hospital.Howe’s daughters and grandchildren visited her consis-tently. Howe had indicated that she wished to stay alive aslong as she could appreciate family visits and had namedone of her daughters to serve as health care proxy. InMarch of 2005 she was thought to be conscious and alertbut was unable to speak or to show responses through anyfacial or bodily movements. Yet the hospital sought to re-move Howe’s daughter as her health care proxy and to dis-continue ventilator support. After legal wrangling, a re-

portedly reluctant daughter agreed that ventilatory sup-port could be withdrawn on June 30 (Ms. Howe diedwhile still on ventilatory support before that date).

Although the details of Howe’s case are not yet andmay never become public record, the published reportsgive considerable basis for concern. If case law and main-stream end of life practice are to continue their adherenceto patient autonomy, health care proxy decision-making,and rights to receive as well as rights to forego life-sustain-ing treatment, they should question the basis on whichthe hospital staff sought to end treatment in the face ofexpressed wishes of patient and family to continue thattreatment. On what basis did staff feel that the treatmentwas inhumane since the patient had requested that she bekept alive regardless of pain if she was appreciating herfamily’s visits? Did the hospital staff have reason to believethat it knew the patient better than did her family becausethe staff was with her for many more hours every day?Was the staff experiencing the kind of pain and ambiva-lence Burt describes in the presence of a conscious yet un-expressive woman with complete physical paralysis? Didthe hospital, like the hospital in the 1991 case of HelgaWanglie, believe that continuing to provide expensivetreatment no longer served either the patient or the pub-lic good? Was stewardship of resources an unstated but se-rious concern, and should it become a legitimate publicconcern? If end of life practice and law answer yes, as theywell may need to do, the field will have to rethink its al-most unquestioned championing of patient autonomyand family decision-making if those autonomous or proxydecisions are to maintain, rather than to forego, expensivelife-sustaining treatment.

The stories of Helga Wanglie and Barbara Howe clear-ly reveal the need for end of life reform to re-examine thepossibility of setting limits to its own commitments to pa-tient autonomy or family decision-making in the face ofpublic resource constraints. This issue could lead to evenmore division between the mainstream end of life fieldand the disability theorists and activists who seek both ashift in an understanding of “quality of life” and a distrib-ution of resources to individuals who need physical, med-ical, and social support to maintain a life with dignity andmeaning.

Advance directives should help people imagine not only what physical

changes may occur, but also what social, technological, and financial

resources they might require to maintain themselves after the onset of

serious illness and disability.


Next Steps

This largely absent disability perspective could prof-itably enliven the world of end of life reform. The

post-Schiavo reaction, with its renewed calls for advancedirectives for all Medicare patients, should encouragebioethicists to redesign the current forms, which ask peo-ple only about which interventions they do and do notwant. Instead, the forms should describe the various med-ical scenarios that might occur in certain situations andencourage people to consider what they would or wouldnot want done in each instance. Which physical and cog-nitive capacities can they imagine losing and still find liferewarding? What activities do they envision as essentialfor life satisfaction? These educational documents shouldhelp people imagine not only what physical changes mayoccur, but also what social, technological, and financial re-sources they might require to maintain themselves afterthe onset of serious illness and disability. Recognizing howdifficult it is for anyone to project herself into a radicallydifferent situation, the end of life field has moved awayfrom advance directives and instead endorsed family deci-sion-making and health care proxies. Indeed, many fami-lies will accurately gauge their loved one’s desires, whetherfor continuing or ending life-sustaining treatment;nonetheless, widespread discomfort in the face of physicaland cognitive changes in a spouse, parent, sibling, orfriend suggest that even intimates may fail to appreciatethe rewards and satisfactions remaining in their lovedone’s life. I would therefore suggest that revamped ad-vance directives and drastically revised educational materi-als continue to be indispensable in helping us out of theend of life care morass.

End of life reform and society generally have never suc-cessfully confronted the rationing question; neither hasthe disability rights movement or the field of disabilitystudies. Groups like Not Dead Yet bring an invaluableperspective on disability to end of life conversation, and

they need to be sought out as we search for progress in re-forming end of life practice. Activists from Not Dead Yetand ADAPT, as well as disability scholars from philoso-phy, psychology, health economics, and other disciplines,need to participate regularly in the mainstream conversa-tion; they need to help determine criteria for allocatingnational resources among all the many health, disabilityrights, environmental, and social justice problems we face.They also need to be recruited for hospital and hospiceethics committees, and they need to train physicians,nurses, and social workers in new ways of understandinglife with disability. The events of this year demonstratehow desperately the disability perspective needs to be-come part of the conversation rather than being excludedfrom it.

At the end of life, facing decline and death, these “dis-ability issues” are issues for everyone—learning how to af-firm and celebrate what gives life meaning and simultane-ously acknowledge loss of capacity and eventually loss oflife itself.

Acknowledgement

I would like to acknowedge the assistance of Jenny DickBryan and Ari Schick in the preparation of this essay.

1. H. Brody, “Bioethicist’s Apology,” Health, October 6, 2004: 6.2. Exceptions are R.S. Dresser and J.A. Robertson, "Quality of

Life and Non-Treatment Decisions for Incompetent Patients," Law,Medicine and Health Care 17 (1989): 234-44, and In re Storar, 52N.Y.2d 363,420 N.E.2d 64, 438 N.Y.S.2d 266 (1981).

3. D. Coleman, testimony before the Subcommittee on CriminalJustice, Drug Policy and Human Resources of the Committee onGovernment Reform of the U.S. House of Representatives, Over-sight Hearing on Federal Health Programs and Those Who CannotCare for Themselves: What Are Their Rights, and Our Responsibilities?April 19, 2005.


P eople are dying in nursing homes. This maysound like a clarion call for a new wave of nurs-ing home policing; instead it is a statement of a

simple fact that we must embrace. Over 20 percent ofolder Americans meet their deaths in a nursing home,and 30 percent of all persons dying in hospitals havebeen transferred there from nursing homes just a fewdays earlier.

Understanding that people die in nursing homes—and should die in nursing homes, just as they should beable to die at home—ought to drive us to improve theircare. The literature is already rich with case studies anddemonstration projects undertaken by nursing homes toimprove care of the dying. Broader change requires ashift in culture and a reframing of the issues. Contempo-rary standards for nursing home quality and the acceptedframework for end of life decision-making have inadver-tently placed obstacles in the path of good care for thesignificant proportion of older people who will spendtheir final days in a nursing home.

Enriching the Ideal for Nursing Home Care

The cornerstone of contemporary nursing home qual-ity standards has been the unequivocal repudiation

of the related beliefs that nursing homes are way stationsfor the dying elderly and that decline is inevitable fornursing home residents. Instead of being resigned to in-evitable decline, regulators and professionals are commit-

ted to maintaining, if not improving, the physical, men-tal, and social health of nursing home residents. Thishard-won expectation of active support for maintenanceand growth rather than mere caretaking has directednursing homes toward a more engaged and less fatalisticcare model. This change is good, in part because thenursing home industry, regulators, and caregivers havebecome alert to substandard care that had once hiddenbehind routine acceptance of physical and mental de-cline.

These rehabilitative, health-promoting expectations,however, may have unintentionally produced a death-denying culture within the nursing home. Regulationsimpose standards that assume that physical, mental, andemotional decline are signals of deficiencies in care unlessdemonstrated to be otherwise. Physical changes com-monly associated with dying, such as weight loss, havethus become signs of failure, rather than a normal part ofdying, and so trigger requirements that the facility justifyits care. Because nursing home administrators are highlysensitive to regulatory risk and avoid situations that mayattract the attention of regulators, the regulatory empha-sis on positive indicators of health can discourage themfrom providing good care to a dying resident. This dy-namic is revealed, for example, by the fact that immi-nently dying residents are often transferred to hospitals sotheir deaths will not occur in the nursing home and re-quire that care be defended. Failure to accept the indica-tors of decline that naturally occur in dying may also bereflected in the emphasis on tube feeding for nursinghome residents. Thus, the rehabilitative expectations,captured and reinforced in regulation, skew nursinghome care models away from care of the dying.

Making Room for Dying:End of Life Care in Nursing Homes

b y S A N D R A H . J O H N S O N

Sandra H. Johnson, “Making Room for Dying: End of Life Care in Nurs-ing Homes,” Improving End of Life Care: Why Has It Been So Difficult?Hastings Center Report Special Report 35, no. 6 (2005): S37-S41.


Before nursing homes can improve end of life care,dying will have to find its place in the nursing home cul-ture. For nursing homes, a shift in culture necessarily in-volves paying attention to regulation and to the providers’reactions to regulation as well as to other behaviors thatcreate and maintain a culture. Culture and regulation gohand in hand in the nursing home environment becauseof the pervasive scope of nursing home regulation, the en-forcement orientation of regulators, and the intense riskaversion of nursing home administrators. Efforts to makeroom for the dying patient require a review of standardsand adoption of changes to facilitate the appropriate leveland type of care for them. Some have argued, for example,that changes in the mandatory Resident Assessment Indexcould more readily encourage nursing homes to providebetter palliative care. Such efforts should not require nurs-ing homes to abandon their mission of health promotion,however. Palliative care models view support of the dyingas active, positive, and promoting of health and humanvalues, even as agressive medical interventions aimed atcure are relinquished. In addition, both hospices andnursing homes engage in the most intimate forms of care,and this shared experience can form a meeting ground be-tween what are now often viewed as separate approachesto care.

The challenge is to encourage the regulatory system toaccept the process of dying, with its accompanying physi-cal and mental deterioration; to exercise restraint in theuse of interventions, including inquiries, that would oth-erwise be pursued; and to do so without creating a shieldfor neglect. Nursing homes are plagued by a reputationfor neglect and abuse, but gearing the entire system to ac-count for the bad apples can inadvertently have the effectthat all homes provide less than optimal care for thedying. Unintentional adverse effects are a problem for anyhealth care regulatory system, of course. They can occurwhenever health care professionals make decisions in pa-tient care that are motivated not by the best interests ofthe patient, but by the provider’s fear of litigation orscrutiny by a regulator. Nursing home administratorsoften try intensely hard to avoid doing things that wouldtrigger regulatory scrutiny because part of their profes-sional obligation is to manage legal risks. This has a verydeep effect on patient care because the administrator has aprofound influence on patient care in the nursing home(as compared to other health care settings). Such decisionstherefore raise ethical issues concerning the duties ofhealth care providers, including administrators, to pa-tients, not only to the facility. While administrators havea professional obligation to protect the facility, ethical du-ties to residents’ well-being supersede their managementresponsibility. Because of their influence on care, adminis-trators cannot defer that ethical obligation to professionalcaregivers.

Of course, the nursing home culture consists of morethan the regulatory environment. If the nursing homeculture is to make room for dying, the incremental pat-terns that maintain that culture will have to be addressed.Publicly marking the death of a resident by more than re-distributing clothing or reassigning the “bed,” expressionsof sympathy to other residents and to family, and bereave-ment support for staff can be significant in creating a cul-ture that responds to the reality of death. Paying attentionto culture also broadens the focus to include the commu-nity of caregivers in the nursing home. Often, direct care-givers and residents in a nursing home differ in terms ofrace and ethnicity, socioeconomic class, and culture. Ifculture is taken seriously, the clashes in expectations andvalues that occur between residents and caregivers—andoften between the professional and nonprofessionalstaff—can be addressed as larger questions rather than asindividual conflicts with uncooperative caregivers.

Adjusting the Framework for End of Life Care

Improving the quality of care for the dying in nursinghomes is not solely a matter of nursing home culture

and regulation, however. It also requires adjusting thegeneral framework for end of life decision-making to bet-ter account for the nursing home context.

One important characteristic of the dominant legaland ethical framework for end of life care is the drive tothe crucible—a concentration on the cases that place fun-damental values in stark contrast and thus highlight in-tractable moral conflict. The paradigm case in the end oflife debate—whether nutrition and hydration should beprovided for a person in a persistent vegetative state—haspersisted as the test case for the moral and legal questionsfor decades. But testing principles and decisions againstthis paradigm can thwart progress in improving care forthe dying. By focusing squarely on issues that are morecommonplace, both in terms of incidence and in thesense of shared values, nursing homes can improve thelives of those who will die in their facilities. Rosalie Kaneargued that long-term care should emphasize what shetermed “everyday ethics”; similarly, the well-being of indi-viduals living and dying in the care of nursing homes isbetter served if we focus on the routine rather than the ex-treme.

If nursing homes have a distinctive case in which keyethical issues are embedded, it is the decision whether totransfer the dying resident to a hospital. Unnecessary hos-pitalization of nursing home residents when death appearsimminent is both a symptom of, and scaffolding for, theculture that denies death and thus impedes the most ap-propriate end of life care.

Studies indicate that hospitalization when death is im-minent does not provide the resident with better treat-


ment. Rather, such transfers can impair good care becausethe hand-off to a new care team can result in absent or un-clear transfer orders for pain and symptom management,disruption of care plans developed with the resident or thefamily, and the disturbance of moving to an unfamiliar lo-cation. Reducing the incidence of unnecessary hospitaliza-tions can improve care of the dying significantly in thenursing home without facing a stalemate over the moralvalues of human life and human caring.

A second “common” issue is improvement in pain andsymptom management. Unrelenting pain can interfere socompletely with thought, self-awareness, emotional en-gagement, and social relationships that it can rob the in-dividual of the experience of being human. But pain isbadly undertreated in nursing homes; studies report that30 to 80 percent of residents receive inadequate painmanagement. Pain management may be undercut by reg-ulations intended to avoid excessive use of pharmaceuti-cals, especially those that affect awareness. Efforts to im-prove pain management confront a tendency on the partof health care providers and family members to underesti-mate pain in the elderly, as well as the tendency of the el-derly to underreport pain for fear of being a burden. As-sessing pain in people with cognitive impairment requiresintense effort. Improving pain management will not grabthe headlines or fuel the debates that withdrawal of nutri-tion and hydration does, but it is the foundation for com-passionate care for the dying.

Food and water—including medically provided nutri-tion and hydration—carry symbolic weight, but especial-ly in the nursing home setting. Nutrition and hydration,and the nutritional status of the resident, are a core mea-sure of adequate or deficient care. Deficiencies in diet andhydration are commonly viewed as the root cause of sub-stantial physical and mental impairments and of injuriesranging from bedsores to mental confusion. Poor foodservice and inattention to encouraging fluid intake are, infact, key indicators of poor nursing home care.

Nutrition and hydration in the nursing home are alsoicons of the ethic of care. The better nursing homes, forexample, understand the social and emotional power ofeating. Despite the focus on health promotion, sometimesthe primary goals of nursing home care, especially for the

families, are to keep this person safe, to keep her warm,and to keep her fed.

Tube feeding is not the same as eating, however. Its solejustification is that it maintains the physical health of thepatient. When tube feeding does maintain physicalhealth, there can be a battle over whether continuing orstopping is moral or immoral. Increasingly, however, evi-dence indicates that a common intervention for tube feed-ing in nursing homes—percutaneous endoscopic gastros-tomy (PEG)—does not reduce the risk of pneumonia orinfection and may not reduce the risk of bedsores. Thisnew knowledge presents a challenge, or opportunity, anal-ogous to earlier efforts to reduce the use of physical re-straints in nursing homes. The two developments are sim-ilar in that the common practice was supported by a“common knowledge”—restraints keep residents safe andPEGs keep them healthy—that has proven mistaken. Aswith restraints, new knowledge about the negative effectsof medically provided nutrition and hydration should re-duce recourse to tube feeding, even when the nutritionalintake of patients appears inadequate, while strengtheningrather than rejecting the values that support feeding.

The battleground of medically provided nutrition andhydration for the PVS patient is fought ferociously be-cause there is disagreement over the meaning of life andthe meaning of care. In contrast, the most significant nu-trition and hydration issue in the nursing home for end oflife care may now present a question of fact rather thancontested value. Unless this common practice is uncou-pled from its association with the crucible of the provisionof nutrition and hydration to the patient in PVS, theshared values that support its reduction in use will not berecognized.

Questioning the Assumptions

Different states have varying normative and legalframeworks for decisions concerning medical care at

the end of life. Furthermore, actual practice often differssignificantly from the principles established in the law andin the ethics literature. In practice, for example, healthcare professionals, families, and patients may bring morenuance to the situation than either the law or the ethicsliterature can encompass.

The challenge is to encourage the regulatory system to accept the

process of dying, with its accompanying physical and mental

deterioration; to exercise restraint in the use of interventions,

including inquiries, that would otherwise be pursued; and to do so

without creating a shield for neglect.


Three fundamental assumptions in thecurrent structure for end of life decision-making are particularly ill-suited to thenursing home environment. These are theconcepts that “end of life care” is synony-mous with “care for the dying,” that the pa-tient is the only person whose autonomy orwell-being has moral significance, and thatthere should be a presumption in favor oflife-sustaining treatment.

Legal, ethical, and clinical decision-mak-ing at the end of life still bear the mark oftheir original emphasis on the significanceof terminal illness. The moral and legal dis-tinction between terminally ill individualsand others certainly has been modifiedsomewhat; however, the status of “dying”still has significant connotations. More im-portant, it assumes a recognizable processwith a beginning that is as clearly defined as its end.

For nursing home residents, the dying process is oftensubtle and incremental. Is this pneumonia or this infectionthe one that signals imminent dying, or will treatment re-store the patient to her previous health status? The prob-lem of recognizing the onset of dying may be an evenmore serious problem among patients with dementia,who constitute a significant population in nursing homes.According to one study, only 1.1 percent of residents withadvanced dementia were identified by clinicians as havinga life expectancy of less than six months, while 71 percentof those same patients actually died within that time-frame.

The problem of identifying the beginning of the dyingprocess or categorizing a patient as “dying” is not only oneof medical uncertainty. It is, rather, evidence of a lack oflanguage and even a lack of concepts for this stage ofhuman life, even though it is a stage typical of so manynursing home residents. The problem of defining whensomeone can be labeled as “dying” is also a manifestationof the denial of death and the fear that accepting a broad-er “end time” will cause individuals to be neglected anddevalued. Unfortunately, when aggressive interventionsare pursued or when palliative care is withheld until one islabeled as “dying,” individuals and their families do notreceive optimal care and support.

The dominant structure for decisions at the end of life,however we define that period, single-mindedly focuseson the well-being and autonomy of the patient, but thistoo is a mistake; family members are not merely adjunctsto the patient. Family members bear significant burdens

in the long-term care of an individual, even when that in-dividual is housed in an institution. These family mem-bers can experience significant physical, emotional, and fi-nancial stress at levels that adversely affect their ownhealth, especially when they are older or are physicallyvulnerable themselves. Their concerns and well-beingshould be recognized as morally significant. Requiringthat families be singular and unflinching in their devotionto the patient’s best interest not only demands the hu-manly impossible but provides an insufficient moral ac-counting of the situation.

The moral status of paid caregivers in a nursing home,professional and nonprofessional alike, should not be de-nied. Their voice also belongs at the table for what theycan contribute to understanding appropriate care for aparticular resident. Researchers have found that nursinghome staff use family terms to describe their relationshipwith residents and view themselves as protective and car-ing and intimate with the residents—sometimes more sothan actual family. Compensated paraprofessional care-givers engage in the most intimate care of the residentover weeks, months, or years. Even though they are oftenpaid less than people working at other, less demandingpositions, their commitment to caring is evident on adaily basis.

The autonomy and well-being of family members whobear the burden in the care of a dying person are morallysignificant, despite cases in which family members are cal-lous, distant, and opportunistic. Similarly, compensatedcaregivers should be recognized as moral agents and theirvoices should be considered in decision-making about in-

Listening, by Robert PopeBy permission of the Robert Pope Foundation.


dividual patients even though there may be conflicts invalues and culture, and even though there are cases wherecompensated caregivers are neglectful or abusive. Such islife; although the “exceptions define the rule,” generalpractice should not be determined by the worst cases.Bringing the conflicts and differences to the table may en-rich our understanding of the best way to care.

Finally, the legal structure currently defers to individualchoice regarding life-sustaining treatment. Legal standardsdefer to individual choice out of respect for the pluralismand freedom that lead us to disagree on the “one rightthing” to do and out of fear that any diminution in thecommitment to prolong life would result in a devaluationof human life, or that any community effort to identifyappropriate care would destroy personal liberty. Deferenceto individual choice places confidence in the inherentvalue of individuation even though identifying the choic-es of incompetent individuals presents serious and familiardifficulties. It is also a deference that weights the scale sig-nificantly in favor of medical intervention. Thus the med-ical intervention holds a favored position, not the individ-ual’s life history and values or the more complex goals ofcare.

With advances in palliative care as a discipline and withincreasing expertise in relieving suffering, it is time to con-sider whether the presumption in favor of life-sustainingtreatment should be changed to a presumption in favor ofcare that provides comfort, relieves suffering, or promotesactivities of daily living. Stating the presumption in thatfashion would bring the goals of palliative care to the fore-front and put life-sustaining medical interventions inproper perspective. People do vary in their preferences andconvictions. Allowing individuals to choose treatmentsthat do not relieve pain or promote function but puttingthe burden on them to do so would support respect for

pluralism, freedom, and individuality without imposingexcessive burdens on individuals or their families when thechoice is merely unclear.

This essay necessarily speaks about nursing homes andnursing home residents in general terms. Not all nursinghome residents are alike, however; and not all nursinghomes are the same. Some nursing home residents arealert and engaged; others are in various stages of dementia;some are insensate. Obviously, the goals of care for dyingnursing home residents and the expectations for nursinghomes will have to account for these variations. The term“nursing home” itself is a catch-all phrase sometimes usedindiscriminately for many different levels of long-termcare. Even among skilled nursing facilities there is signifi-cant disparity in how ill and disabled residents are, andthis, too, will influence appropriate care models.

The quality of nursing homes also varies considerably.This essay leaves the problem of policing the bad appleslargely on the shelf. Although it is a significant problem,the design and implementation of a regulatory system hasto follow the identification of appropriate goals and stan-dards for quality of care rather than the goals and stan-dards developed for purposes of enforcement. At the veryleast, these two perspectives need to be in dialogue andperhaps in tension; one arm of the effort should not ex-clude the other.

Advocates for nursing home residents and those nurs-ing homes in the leadership of best practices have workedhard to dismantle the stereotype of the nursing home as awarehouse for those who are declining into death. Thiswork needs to be protected. However, once dying is rec-ognized as an undeniable part of living—including livingin a nursing home—it is clear that the ideal of health pro-motion will have to embrace care for the dying.

Allowing individuals to choose life-sustaining treatments over those

that relieve pain or promote function, but putting the burden on them

to do so, would show respect for pluralism, freedom, and individuality

without imposing excessive burdens on individuals or their families.


A national dialogue is now in full flower on how toadvance palliative care and expand hospice ser-vices in the United States. Driving this discussion

are concerns about an aging population, the changingtrajectory of illness, advancements in high-tech life sup-port systems, limitations in health care resources, and is-sues surrounding patient autonomy and the right to adignified death. The public concern has been magnifiedby media attention to the legal, ethical, and moral issuessurrounding end of life care—withholding and with-drawing care, Kevorkian’s advocacy for assisted death,Oregon’s legalization of physician-assisted suicide, andhealth care professionals’ support for futility decision-making. In the last fifteen years, the convergence of thehospice and palliative care movements reflects a growingresponse by a wide range of stakeholders to improve thequality of living for patients and families with seriouschronic illness.

Hospice care in the United States began as a grassrootsmovement to improve the quality of dying for patients athome. It has evolved into a fully funded entitlement pro-gram providing care to more than 50 percent of Ameri-cans who die of cancer and to approximately 20 to 30percent of those who die from other chronic diseases.Health care professionals have fostered the more recentpalliative care movement, which aims to improve the careof the seriously ill and dying in the hospitals and nursinghomes where more than 55 percent of Americans die.The two initiatives share a common philosophy and

goal—to improve the quality of life for patients with se-rious, chronic illness, and for their families as well.

A tipping point in the history of these movements andin public and professional discussions about end of lifecare came with the publication of the SUPPORT study,which validated widespread concerns among the publicand health care professionals about the barriers and chal-lenges to providing humane, compassionate care. Thispivotal two-phase study of almost 10,000 patients in fivemajor American hospitals revealed serious limitations inthe care of patients with life-threatening illness. Patientand family communication with health care professionalsabout care at the end of life was poor, the cost of care de-pleted some family’s life savings, and half of patients ex-perienced moderate to severe pain in the last three days oflife. Interventions to address communication and painmanagement were not successful. This study, coupledwith surveys of public attitudes and beliefs and focusgroup discussions, led to a growing consensus that signif-icant barriers—organizational, institutional, educational,and economic—had to be overcome before end of lifecare could be improved. Three reports from the Instituteof Medicine frame the problem and provide solutions byoffering evidence-based recommendations to address thefield’s most challenging issues: the lack of professional ed-ucation and knowledge on end of life care, and the needto develop and expand hospice and palliative care servicesto hospitals and nursing homes, where the majority ofAmericans die. These reports represented the first timethe IOM had specifically addressed care of the dying.

The Past and Future of Palliative Care

b y K AT H L E E N M . F O L E Y

Kathleen M. Foley, “The Past and Future of Palliative Care,” ImprovingEnd of Life Care: Why Has It Been So Difficult? Hastings Center Report Spe-cial Report 35, no. 6 (2005): S42-S46.


The Hospice Movement

The United States has had a rich tradition in providinghospice care for the terminally ill at home. Initially an

advocacy movement, hospice responded to the public’sconcern about the overmedicalization and institutional-ization of care of the dying. In 1975, the first free-stand-ing hospice opened in Connecticut, modeled after the in-novative program of Dame Cicely Saunders at St.Christopher’s Hospice in London, the 1967 birthplace ofthe modern-day hospice movement. The movement res-onated with a growing number of charismatic nurses,physicians, and volunteers who started community hos-pice programs to care for the dying at home. Initially, thisgrassroots effort, with its community-based, home-cen-tered care programs, operated outside the traditional hos-pital-based health care system, as a parallel initiative forthose with terminal illness. By 1982, it had sufficient po-litical and social force to successfully lobby Congress forthe passage of the Medicare Hospice Benefit, whose reim-bursement formula focused on home-based care and hasdefined hospice care in the United States.

The Medicare Hospice Benefit is an entitlement pro-gram for patients over the age of sixty-five who have aprognosis of less than six months. Under the Medicarebenefit, at least 80 percent of care must be provided in thepatient’s home. A multidisciplinary team of nurses, socialworkers, and counselors, supervised by a physician, pro-vides care and support to the patient and loved ones.Respite care (to relieve family caregivers) and inpatient ad-missions (for symptom management) are available forlimited periods. This home-based model allows patientsto die at home while receiving expert pain and symptommanagement, psychosocial support, and spiritual care; follow-up bereavement support for family members isprovided following a patient’s death. To be eligible for theMedicare benefit, patients must agree to forgo active ther-apies such as chemotherapy.

As of 2004, more than 3,200 hospice programs in theUnited States were caring for more than 900,000 Ameri-cans. Approximately 40 percent of adult Americans whosedeath includes a preceding period of dependency receivehospice care; up to half of U.S. hospice patients have anoncancer diagnosis. Depending upon the community,50 to 90 percent of cancer patients receive hospice carebefore their death. Pediatric hospice services may be inte-

grated into adult programs or function as independentservices. Both private insurance plans and Medicaid sup-port hospice programs to a varying degree.

While the American hospice movement developed, theCancer Unit of the World Health Organization (WHO)spearheaded efforts to focus attention on the needs of can-cer patients worldwide for appropriate symptom manage-ment, particularly pain relief. Beginning in 1982, theCancer Unit of the World Health Organization created anexpert panel to develop guidelines for the relief of cancerpain and the integration of the philosophy and conceptsof hospice care into all national cancer control programs.The World Health Organization chose the term “pallia-tive care” rather than “hospice care” as the umbrella termto describe such care when a multinational expert panelconcluded that the term “hospice care” might be misin-terpreted in some translations.

Balfour Mount first used the term palliative care inCanada in 1975. He sought to integrate end of life careinto the existing Canadian health care system, rather thanto create a parallel health care program of freestandinghospices. His leadership and stature clearly influenced theWHO’s decision to adapt this term, which was not con-fined to representing either a reimbursement scheme or acare setting. Inpatient palliative care units developedthroughout Canada, with home-based hospice care inte-grated much later into its home care program.

WHO published its first definition of “palliative care”in 1986 and a revised version in 2002 (see Figure 1). Thecurrent definition reflects an evolution in thinking aboutthe role of palliative care in modern society. The defini-tion emphasizes that palliative care should be providedthroughout the continuum of a patient’s illness and that itshould focus not only on treating suffering but on pre-venting suffering, in keeping with the role of palliativecare as a public health approach to managing chronic dis-eases. WHO has advocated palliative care’s integration ininternational strategies for cancer patients, for care of theelderly, for children, and for patients with HIV/AIDS.WHO recently published two monographs, The SolidFacts of Palliative Care and Better Care of the Elderly, tobetter inform policy-makers who are interested in inte-grating palliative care in national health strategies.

WHO’s definition has been controversial because it de-scribes an “approach,” a word that some palliative care ad-

If we build a field of palliative care, will they come? Americans really do

see dying as a second choice. The challenges going forward are to

define the domains of palliative care and model a program that

provides continuity of care throughout the trajectory of illness.


vocates have argued demeans the field. The debate contin-ues over the scope of care and the vision of palliative careprograms. David Clark’s history of the development ofhospice and palliative care points out that more thaneighty countries have well-developed programs that reflectvery different origins, settings, organization, and reim-bursement.

In the United States, the major impetus for the expan-sion of palliative care has come from a wide range of stake-holders but has been led predominantly by health careprofessionals, organizations, and foundations that pushfor the need to transform the culture of dying. The RobertWood Johnson Foundation and the Project on Death inAmerica provided over $300 million over the last ten tofifteen years to advance the integration of palliative careinto the American health care system. Many other non-governmental and governmental organizations have con-tributed to this effort.

Integrating Hospice Care and Palliative Care

I t is the confluence of these events, an enormous anddefined need, philanthropic leadership, professional

leadership, and public awareness that catalyzed the multi-ple stakeholders interested in advancing the varied aspectsof end of life care to build the field of palliative care. Yetthe expansion of palliative care was initially viewed as athreat to the hospice movement’s dominant role in end oflife care. A subtle but perhaps more serious concern wasthat the developing field of specialist palliative care andpalliative medicine might further medicalize care of thedying and be antagonistic to the very values and traditionsfor which hospice had evolved to counteract the medical-ization of death. Fueling this tension was the reality thatpalliative care, which is based in hospitals and led byphysicians and nurses, appears to be “academic” and “evi-dence based,” with the potential to create a two-tier sys-tem for end of life care.

These tensions are currently openly debated and dis-cussed. Britain—with its system of academic palliativecare units, freestanding hospices, and home-based hospicecare; its academic- and hospital-based development of pal-liative care; and its recognition of palliative medicine as anofficial medical specialty—has experienced an expansionof hospice services rather than a contraction in their roleor importance and offers a model of care. Palliative careunits in Britain are fully integrated and financed in theNational Health Service, whereas freestanding residentialhospice programs receive only 30 to 50 percent of theirsupport from the government, requiring them to raise upto half of their funds from charitable organizations. Thefact that palliative care units were NHS funded has clear-ly influenced the growth and development of palliativemedicine as a specialty.

In the United States, newly developed palliative careunits are now being financed through hospital operatingbudgets and physician payment for the diagnostic and themedical services provided. Palliative care unit programs atthe Cleveland Clinic and M.D. Anderson Cancer Centerhave pioneered this inpatient model. An attempt to devel-op a palliative care DRG—a “diagnosis related group,” aclassification of treatment options that facilitates officialrecognition and insurance coverage—has so far failed togain momentum, but it remains a policy option as pallia-tive care programs and hospitals expand and palliativemedicine in the United States achieves specialty status. Inpart, the push for the DRG may have been introduced tooearly, before there was sufficient capacity in the field and asufficient number of palliative care units to test its validityand usefulness.

The future of palliative care is perhaps best described inthe recently published Clinician Practice Guidelines forQuality Palliative Care by the National Consensus Project.This document represents a major collaborative effort be-tween palliative care and hospice professionals to definethe field of palliative care in a way that is responsive to theneeds of its various stakeholders. Clinician Practice Guide-lines describes palliative care as a continuum of care basedon patient and family needs, care setting, and illness tra-jectory; as patients transition in the course of their illness,their care goals may change, and their requirements forpain and symptom management may vary. Hospice care isone component of palliative care. The hospice concept isintroduced early in a patient’s illness to facilitate patient

Figure I.

1982 WHO Definition of Palliative Care“The active total care of patients whose disease is notresponsive to curative treatment. Control of pain, ofother symptoms, and of psychological, social, andspiritual problems is paramount. The goal of palliative care is the achievement of the best qualityof life for patients and families.”

2002 WHO Definition of Palliative Care“Palliative care is an approach which improvesquality of life of patients and their families facinglife-threatening illness, through the prevention andrelief of suffering by means of early identificationand impeccable assessment and treatment of painand other problems, physical, psychosocial, and spiritual.”


and family understanding of hospice’s role and to empha-size that it is an integral and appropriate choice.

The chief challenge to the full utilization of hospiceand palliative care lies in patients’ willingness to hear theinformation about options for care when they have seri-ous symptoms or are dying, and in health care profession-als’ willingness and ability to provide the information em-pathetically and effectively. Growing evidence shows thatpatients and families want this information and thathealth care professionals, specifically physicians, are beingtrained to deliver it.

Recognizing the need to expand and redefine services,numerous hospice organizations and major professionalorganizations have changed their names, adding either“hospice” or “palliative care,” in order to bring both with-in their ambit. Such organizations include the NationalHospice and Palliative Care Association, the AmericanAcademy of Hospice and Palliative Medicine, and theHospice and Palliative Nursing Association. In movingforward, the collaboration of the leading organizations tofoster, share, nurture, and retain the traditional values ofhospice remains a challenge. Political, economic, andcompetitive forces can easily derail ongoing attempts tobridge the gaps between hospice’s leading role in home-based care for the dying and the need for institution-basedcare (hospitals and nursing homes) to provide symptommanagement and continuity of care for those with life-threatening chronic illnesses.

Other challenges concern the ability of hospices toreach patients. Over the last ten years, the median lengthof hospice stay has dropped to twenty-two days, and one-third of patients die within seven days of admission. Thismeans that hospices often provide “brink of death” carerather than having the opportunity over several months toprepare patients and families for death. The NIH State ofthe Science Consensus Panel recently argued that theMedicare Hospice Benefit severely limited the quality andquantity of care to patients who could benefit from suchcare but are excluded by the current eligibility criteria,which are based on prognosis rather than on functionalstatus and burden of illness.

The wide range of expensive supportive therapies thatare available to patients who are dying, ranging fromblood supply products to nutritional support to high techdrug delivery devices, challenges the financial viability ofhospices, which are dependent on a per diem rate. Hos-pices vary in providing such therapies because of differ-ences in their patient census and philanthropic support.

Financial support for inpatient palliative care units ap-pears to be growing, with evidence that these units mayboth improve the quality of care and reduce the cost ofcare for seriously ill patients by controlling the costs ofdrugs and services provided to dying patients. Such costshifting and cost reduction are clearly incentives for hos-

pitals to develop such units or palliative care consultationteams.

Lastly, efforts to expand hospice and palliative care ser-vices to minority populations remain complicated by con-cerns about lack of available services, diverse culturalnorms, and an overwhelming concern that such care lim-its access to high tech care. Yet some success has beenachieved in developing innovative hospice programs inprisons to address the special needs of dying inmates.

Institutional Progress

Competition to enter the hospice market is growing,with the emergence of for-profit hospices who pro-

vide a range of services from simple home care to pallia-tive care consultations to hospice care. This focus on thebusiness end of end of life care may affect the quality ofcare and the traditional values so integral to the hospicemission.

The creation of national standards, the increasing pro-fessionalization of the field, and the development of a spe-cialty in palliative medicine are essential components ofthe process for fully integrating palliative care into theU.S. health care system. These initiatives all focus ondefining the scope of palliative care practice and the spe-cific training, curricula, and qualifications of health careprofessionals who provide palliative and hospice care ser-vices.

There is increasing attention in medical schools, nurs-ing schools, schools of social work, and pastoral care edu-cational programs to incorporate palliative care as an edu-cational topic. At the graduate level, a series of consensusdocuments have outlined the “Core Principles of Pallia-tive Care” now adopted by nineteen national professionalorganizations for inclusion in their professional teachingprograms as a specific subspecialty. Curricula for variousmedical and surgical subspecialties as well as for certaindiseases such as cancer, HIV/AIDS, geriatrics, pediatrics,and surgery are available. The Veterans’ Health Care Ad-ministration (VA), where one in seven Americans receivescare, has developed an expansive initiative to support andsustain the development of palliative care teams and lead-ers, making palliative care integral to their health care sys-tem.

Many national organizations have developed programsto train health care professionals. Examples include theAmerican Medical Association’s program for practicingphysicians, EPEC, as well as two targeted programs,EPEC-O, sponsored by the American Society of ClinicalOncology for oncologists, and APPEAL, for minorityprofessionals, sponsored by the Institute to Improve Endof Life Care for African Americans. Multiple pediatricpalliative care curricula have been written, along withELNEC, a sophisticated nursing curriculum, and a re-


cently published compendium on the role of the socialworker in end of life care.

There is reason to be optimistic that the professional-ization of the field is progressing. To date more than twothousand physicians have been certified by the AmericanBoard of Hospice and Palliative Care, and more than tenthousand nurses and nursing assistants are certified by theHospice and Palliative Care Nursing Association. Morethan forty-two physician fellowship training programs inpalliative care are now offered nationwide, and twenty arecertified as having qualified to train fellows in clinicalcompetency in palliative care. Similar fellowship programsare developing in nursing and social work.

The American Board of Hospice and Palliative Care isin the process of applying for specialty status and has de-fined its scope of practice, curricula, and certificationprocess. A growing number of endowed chairs in pallia-tive medicine have been established, and the first endowedchair in palliative care nursing was recently announced atthe University of Oklahoma.

Yet a recent work force development study reveals thatthere remains a significant demand for palliative care ex-pertise. One strategy to encourage support for expandingthe capacity of the work force for palliative care is the Pal-liative Academic Career Award, a proposed federally fund-ed initiative to develop leadership in the field modeled onthe Geriatric Academic Cancer Award.

Based on data accumulated by the Center to AdvancePalliative Care (CAPC), Diane Meier has demonstratedthat interest is growing in the development of palliativecare services in hospitals throughout the United States.CAPC plays a major role in providing technological andsubstantive expert advice to hospital administrators as wellas to palliative care physicians and nurses on the organiza-tion, economics, and marketing aspects of developing pal-liative care services and consultation programs within hos-pitals.

CAPC has demonstrated that palliative care programsprovide economic benefits to hospitals while also improv-ing the quality of care for patients and families—essentialcomponents for encouraging hospitals to consider initiat-ing and institutionalizing such programs.

At the same time, a series of initiatives has beenlaunched to foster hospital- and hospice-based initiativesthat will bridge the gap in services, enhance care, and sup-port hospice teams that provide palliative care consulta-tions to hospitalized patients. Data from the NationalConsensus Project point out that one-half of hospice pro-grams are now closely allied to academic hospital pro-grams. Bridging the gap between acute care hospitals andhospices is an important component in developing amodel of continuity of care for patients with serious life-threatening illness.

If we build a field of palliative care, will they come?Americans really do see dying as a second choice. Thechallenges going forward are to define the domains of pal-liative care and model a program that provides continuityof care throughout the trajectory of illness. Demonstra-tion projects now underway in cancer centers that providesimultaneous hospice care and cancer therapy will giveneeded evidence of the benefit, costs, and quality of suchan integrated system and provide the financial and policyimplications for changing the benefit. Additional demon-stration projects have been proposed for patients withchronic cardiac disease and neurodegenerative diseases;their outcome will influence future policy reform.

The future of palliative care will be determined in partby its integration into mainstream health care. Fortunate-ly, this integration is already occurring in bridging pro-grams between hospices and hospitals. To date, 20 percentof American hospitals (1,100) have developed palliativecare units and/or consultation teams. Increasingly, pallia-tive care is identified as part of quality medical care. Forexample, the American Cancer Society has recently pub-lished a palliative care book, Focus on Care, that outlinesthe role of palliative care as an aspect of quality cancercare. A greater openness to talking about end of life issuesand care options—exemplified by this book—seems to befacilitating a consumer advocacy movement.

One last example of progress in hospice and palliativecare is the National Institutes of Health’s two State of theScience meetings that have outlined research with a richpotential to advance the field and have recommended thatthe research be a high priority for further funding. Only 1percent of all NIH funding currently supports research onthe major symptoms—pain, nausea, and dyspnea—thatdramatically impact quality of life and chronic illness.

All of these efforts to advance hospice and palliativecare have been slow and incremental and have engaged abroad range of stakeholders, from health care profession-als to policy-makers, patient advocacy groups, and gov-ernmental agencies, foundations, and insurers. Institu-tionalizing educational and policy reform and demon-strating the economic consequences and quality aspects ofpalliative care are the hurdles to overcome.

Americans are increasingly aware of the importanceand opportunities for care that emphasizes their quality ofliving and reduces needless suffering. Such information istransforming their perspectives on choices and options forcare and will lead to the full integration of hospice andpalliative care into the health care system. The confluenceof a grassroots consumer activism for choice, care, andquality with health care professionals who are focused onreclaiming their professionalism offers an optimistic fu-ture to improve care for this vulnerable population.


W e live in a society permeated by litigation. Thatthis is so hardly needs mention; there are re-minders all around us. It sometimes seems,

however, that we have lost sight of the limits of litigationas an instrument of change—both social change and in-dividual change. Lessons abound of litigation that hasnot brought about the anticipated benefits—school de-segregation and police misconduct in interrogations, tomention only two long-standing historical examples. Yetwhen a new problem arises clamoring for resolution, wefrequently ignore the past lessons. Perhaps litigation isaddictive. We know that it will not solve all of our prob-lems, but despite our intellectual understanding, our willis overborne.

The problems posed by end of life decision-makingare but one more example. Since 1975, people wishing toforgo life-sustaining medical treatment or their familieshave relied on the judicial system to solve a problem thatundoubtedly has a legal component, but that might havebeen resolvable outside the courts. In 1975, it was theQuinlan case; today it is the Schiavo case, a contempo-rary Bleak House, spawning a mini-industry of litiga-tion—endless rounds of essentially the same argumentsmade in different courts (and sometimes the samecourts) through different (and sometimes the same)lawyers.

The lesson of Schiavo, if not of its five score or morepredecessors, is this: our assumptions about litigation—that it provides a resolution to individual and social prob-

lems, that this resolution is final and uncontestable, andthat there are no other last-resort mechanisms for resolu-tion—are largely unsustainable. But then again, that is arational conclusion, and addiction is not a rationalprocess.

Limits of Litigation

Perhaps it is inevitable that end of life cases end up incourt. Just consider the situation of the first promi-

nent case to do so—the case of Karen Ann Quinlan.Here was a young woman in what her doctors said was astate of unconsciousness from which she would neveremerge. Although not dead, her parents believed—as didmost people—that her life was over. From time im-memorial, when this has occurred, we have buried orburned our dead. But Ms. Quinlan’s doctors—for a vari-ety of more or less understandable reasons given the erain which these events occurred—would not, in effect,permit this to happen. Her parents were denied the op-portunity to mourn their loss in a culturally and whattheir Catholic religious advisors considered to be a reli-giously appropriate way.

They had two choices: accept this affront to their val-ues, their beliefs, and their dignity, or fight it. Theyfought it as long as they could through conventionalmeans, but when those ultimately failed, they could con-tinue to fight only by resorting to litigation. Litigation,however, has several limitations that ultimately make it avery unsatisfactory weapon in the armamentarium of so-lutions to end of life disputes.

Jurisprudential limits of litigation. In the litigation ofend of life cases, like many other kinds of cases, the bat-

The Role of Litigation in End of Life Care:

A Reappraisal

b y A L A N M E I S E L

Alan Meisel, “The Role of Litigation in End of Life Care: A Reappraisal,”Improving End of Life Care: Why Has It Been So Difficult? Hastings CenterReport Special Report 35, no. 6 (2005): S47-S51.


tle does not end the war. In all cases, the judicial decision,strictly speaking, applies only to that case. Everyone otherthan the parties to the case is entitled to ignore the deci-sion—indeed, to defy it—with legal impunity. What hap-pens in fact is far more complex than either uniform ac-quiescence or uniform defiance. Every litigated case inwhich an opinion is written by the court—and sometimesseveral opinions are written (there were four in Cruzan)—raises far more questions than it answers. This results fromtwo factors.

First, litigation attacks problems piecemeal. Courtsonly answer questions they are asked, and litigants onlyask questions that must be answered for the resolution oftheir particular dispute.

Second, this is not quite true. Courts write opinionsthat are sometimes quite discursive, and this has certainlybeen characteristic of end of life cases, where opinionssometimes exceed one hundred pages. However, everyopinion is made up of two parts: holding and dicta. Theholding of the case is the only part of the case that, strict-ly speaking, is law. The holding constitutes the answer (oranswers) to the question (or questions) presented by theparties to the court. All the rest is, as the lawyers say, obiterdictum—“A judicial comment made while delivering a ju-dicial opinion, but one that is unnecessary to the decisionin the case and therefore not precedential (although itmay be considered persuasive).”1 Thus, although certainlimited parts of a court’s opinion are law, the remainder ofthe opinion gives guidance about how the law might de-velop in the future. Reliance on this guidance is at one’sown risk.

Thus, while the case before the court is resolved onceand for all, there is a lack of finality in a broader sense.New cases that arise, no matter how similar, may haveslight factual differences that dictate a different legal out-come. No one can foresee all the issues that might arise inthe future and all of the convoluted twists and turns theymight take. This is why judicial opinions, apart from theholdings, are not binding. Judges do not want to decideissues they are not compelled to in part because real factsbring issues into sharper focus.

Practical limits of litigation. Litigation adds trial totribulation, both literally and figuratively. There are allsorts of costs, and in advance they are incalculable. Litiga-tion is expensive and emotionally draining (sometimesunimaginably so), primarily because it is also time-con-

suming—so time-consuming that in many end of lifecases the patient expires before the litigation does.

And in the end, litigation is a blunt instrument for theresolution of disputes. It can fine-tune a resolution only toa limited extent. In end of life cases, the parties are leftwith a pronouncement—treatment may be terminated,must be terminated, or must not be terminated—andthey are left to pick up the pieces of shattered human re-lationships—among family members, among health careprofessionals, and between family members and healthcare professionals. Acrimony is beyond the scope of litiga-tion to repair.

Practical limits of implementing case law. High-pro-file end of life cases are well publicized. People who needto know about them—primarily health care profession-als—learn about them from a variety of sources, and theholdings in these cases become part of the lore of clinicalpractice. However, the judicial opinions are often com-plex, and as the information gets passed along, it gets sim-plified, and sometimes oversimplified, and sometimes dis-torted, as in a children’s game of “telephone.”

Even experts can succumb to reductionist tendenciesand lose sight of the subtleties. Lawyers may be inclinedto obscure the subtleties in order to enhance the case’scomprehensibility.

Even if clinicians really understand the law, they needto be able to apply it to actual clinical situations. An in-tellectual understanding of the law—even a recognitionthat one is faced with a clinical situation to which the lawapplies—does not come close to assuring compliance withit. Resistance to applying the law can arise from nonra-tional sources. If the law in question is in conflict with aprofessional’s strongly held values, resistance to applying itcan be a serious impediment to behavioral change. Norwill courts’ pronouncements that the legal principles theyare enunciating square with the ethos of the health careprofession’s guarantee that clinicians will adopt and abideby those professional views.

Costs and dangers of an agenda defined and drivenby litigation. It is hard to imagine a world in which med-ical technology could have developed to the point that ithas without creating the ethical dilemmas that it has. Andgiven the pervasive nature of law in our society, it is equal-ly hard to imagine that law would not have played a rolein addressing these dilemmas. Assuming that legislatureswill act reluctantly, if at all, to remove or mitigate them,

The lesson of Schiavo is this: our assumptions about litigation—that it

provides a resolution to individual and social problems, that this

resolution is final and uncontestable, and that there are no other last

resort mechanisms for resolution—are largely unsustainable.


sometimes there is no choice but to resort to litigation.Other mechanisms for dispute resolution usually meettheir match when the trump card is the possibility of legalsanction.

Litigation undeniably resolves individual cases, al-though the costs of doing so can be high. Judicial opinionshave also brought a measure of clarity to the end of life de-cision-making process and thus the end of life for untoldnumbers of patients and their families, sparing them boththe trauma of a prolonged and burdensome dying processand the added trauma of litigation.

The legally driven agenda has not been cost free, how-ever. In addition to the costs to the individuals involved inlitigated cases, there are costs to society at large—and toparticular subgroups.

External imposition. One significant cost of litigationhas been felt by health care professionals—and, most like-ly, predominantly by physicians. First, litigation can makethe parties feel imposed upon from outside. Second,physicians may feel that they have been imposed upon bywhat they regard as a rival profession, with the subtletybeing lost that it is judges, not lawyers, who make law, andwith the further lost subtlety that judges are merely carry-ing out their socially sanctioned role. Third, and perhapsmost important, this outside imposition has often con-flicted with the ethics, ethos, customs, and deeply heldvalues of the health care professions, or at least of individ-ual clinicians.

The result has been a certain demoralization of healthcare professionals, who resent being told what to do andhow to do it, particularly since professionals traditionallyhave some measure of control over their own work. To topit off, the courts have usually insisted that what they areasking of health care professionals is not inconsistent withthe ethics of the medical profession, when in fact it prob-ably is—or at least was, in the earlier years. And in anyevent, it is sometimes inconsistent with the personal val-ues of individual health care professionals.

Nonmajoritarian law-making. Litigation has anotherdrawback: the courts are a somewhat unusual law-makingentity in a democratic society because they are often non-majoritarian. In resolving ordinary disputes, this is rarely amatter of much contention, but when courts settle issuesthat are part of a much larger and contentious social de-bate, they are sometimes subjected to criticism on thegrounds that the issue would better be resolved by legisla-tures—in part because legislatures are majoritarian institu-tions, and in part because legislatures can engage in thekind of fact-finding that is thought to provide a morecomprehensive, rational, and socially acceptable outcome.Indeed, courts themselves have frequently pointed out inend of life cases that although they must decide the issuebefore them, it would be better if a comprehensive resolu-tion were prescribed legislatively.

Law-making by elites. One of the consequences of ju-dicial law-making is that the resulting law is imposed byelites. Further, in the end of life context, the content of thelaw has been significantly shaped by elites—medical, pol-icy, even religious elites. Courts have relied on the opin-ions of academic physicians, for example, in recognizingthe existence, meaning, and implications of the perma-nent vegetative state. The dominant judicial view that ar-tificial nutrition and hydration is no different from forgo-ing any other kind of medical treatment has been influ-enced in significant part by the views of both religious andmedical elites. And the larger consensus about forgoinglife-sustaining treatment has been significantly shaped bythe report of a presidential commission whose staff wasdrawn largely from academia.

It is not, however, the elites upon whom the impact ofthe law usually falls on a day-to-day basis. It is physiciansand other health care professionals who play little or norole in developing the law and who may not even be awareof, let alone subscribe to, the views of their professionalorganizations or their professional leaders. It is the pastoralclergy of all denominations who counsel patients and theirfamilies, often at the bedside, at or near the end of life,who also play little or no role in shaping the views towhich they supposedly subscribe, and again who may noteven be aware of them or of their nuances. It should notbe surprising, given these facts, that the law is so foreignto—and thus resisted by—the troops in the field

Assumptions about quality of life versus vitalism. Fi-nally, the judicial consensus that has developed aroundend of life decision-making has been based on a reason-able, but nonetheless questionable, assumption. The as-sumption is that, at or near the end of life, people preferdying a peaceful, nonmedicalized death to eking out a fewadditional days or weeks or months sustained by high-tech medical interventions. Put another way, the assump-tion is that the quality of a person’s existence is always rel-evant in determining what medical treatment should orshould not be administered.

Patients in the litigated cases certainly have expressed apreference—either contemporaneously or through an oralor written advance directive—for quality of life to be a de-terminative factor in how they die. And perhaps this pref-erence is shared by most people. But it is not what every-one wants. A vocal proportion of the population, growingever more vocal, believes that life per se is a pearl beyondprice and must be preserved at all costs regardless of theburdens that might be imposed by life-sustaining medicaltreatment. (This set of beliefs, known as “vitalism,” hasgiven rise to what are popularly called “futility cases.”) An-other vocal segment of the population believes that thequality of life ought to be irrelevant to the decisionwhether to administer or forgo life-sustaining medicaltreatment, and that to withhold or withdraw such treat-


ment constitutes discrimination on the basis of disabilityand devalues the lives of the disabled.

Law that deals with high-profile, emotionally chargedissues is certain to meet some resistance from those whofeel its impact the most. But when that law is developedin the way end of life law has—sometimes inconsistentwith the norms of health care professionals, predominant-ly nonmajoritarian, under the influence of elites, andbased on assumptions that may be less widely shared thanis often assumed—it is virtually certain to meet resistance.Perhaps it would have met resistance even if it had devel-oped primarily through legislation, but in a legislativeforum, opposing points of view might have more readilybeen expressed and had more impact on its development.

A Contemporary Litigation Agenda

Despite these reservations, litigation will almost cer-tainly not be abandoned in the end of life context as aninstrument either of dispute resolution among interestedparties or of efforts to effect social and legal change. Withrespect to dispute resolution, the conditions that initiallygave rise to the use of litigation to resolve end of life dis-putes remain unchanged. Thus, when one’s back is to thewall, as it was in Quinlan, the only socially acceptable al-ternative in our society, other than walking away, is to lit-igate. And this is a good thing, because when this alterna-tive is unavailable (or is available but unknown), peoplesometimes resort to force or violence.2

In terms of larger social change, other options exist.First, alternative means of effectuating change are some-times available—with efforts to enact legislation or toconvince administrative agencies to promulgate regula-tions and enforce existing ones prime among them. In thewake of Schiavo, state legislatures may be more willing toenact broad legislation for end of life decision-making.However, as the sages say, be careful what you wish for. Iflegislative change is forthcoming, in the immediate after-math of Schiavo it may roll back the consensus that hasbeen carefully and deliberatively crafted over the past thir-ty years.

Failing legislative or administrative solutions—or be-cause such solutions may attempt to roll back the consen-sus—litigation may continue to be the change agent ofchoice. What should its goals be? Assuming the effort is to

effect change in the law—not merely to answer a narrowquestion—these are the current priorities:

Signing more states onto the consensus. Given thatthe legal consensus about end of life decision-making isunder attack from vitalists, disability rights groups, andopponents of forgoing artificial nutrition and hydration,efforts need to be made to strengthen the consensus. Insome states this means merely getting the supreme courtto articulate what everyone assumes to be the law: theright of competent patients to forgo medical treatmentand the right of incompetent patients to have close fami-ly members make these decisions for them. In half of thestates, these fundamental principles have not yet been ar-ticulated in case law, and to the extent that they are rec-ognized in advance directive legislation, they are frequent-ly hedged with significant exceptions. For example, someadvance directive statutes limit the effectiveness of an ad-vance directive if the patient is pregnant or if the treat-ment in question is a feeding tube.

Clarifying ambiguity. Another important—and relat-ed—goal is to urge courts to clarify some ambiguous areasof seemingly settled law. One pressing example is themeaning of the “clear and convincing evidence” standard.Everyone called on to apply this standard—includinglawyers—needs to understand that “clear and convincingevidence” refers to a standard of proof (an evidentiarystandard), not to a substantive standard by which surro-gates are to be guided. What is crucial is that “we view theclear and convincing evidence standard not as a decision-making standard, but as an evidentiary standard of proofthat applies to all decisions regarding termination of treat-ment, regardless of the decision-making standard em-ployed.”3

Grounding the law in state constitutions. The deci-sions of state courts are subject to nullification by statelegislatures unless the judicial decisions are grounded inthe state (or federal) constitution. Thus a primary goal ofany litigation agenda must be to anchor the consensusfirmly in state constitutional law. This has happened onlyoccasionally in the past, most notably (and most ironical-ly, in light of Schiavo) in Florida. Not all states have con-stitutional provisions that lend themselves to such an ef-fort, but many do.

Beyond autonomy. The concept of autonomy hasplayed a central role in the legal development and analysis

We must try other means of social change. However, in the current

climate, if the goal is to preserve the consensus about end of life

decision-making, it may turn out that what we need is not an

alternative to litigation, but a smarter litigation strategy.


of end of life decision-making. It has been so dominantthat it has sometimes been stretched beyond the breakingpoint. Although some have questioned this dominance,for the most part these have been lost voices in the wilder-ness. Perhaps it is time to forge a litigation agenda thaturges courts to rethink the role that autonomy shouldplay, especially in comparison with two competing val-ues—economic justice and the interests of other con-cerned persons.

Justice. One of the more contentious issues—and anissue that legislatures are unlikely to take on—is the ques-tion of how to address the economic realities that affect allmedical decision-making, but especially decision-makingat the end of life. End of life litigation has had only briefand episodic contact with this issue in the guise of the so-called futility cases. Even though we are engaged in aforthright public debate about escalating health care costs(which have now priced more than forty million Ameri-cans out of the health insurance market), about the un-sustainable costs of Medicare, and most recently about theexplosive growth in Medicaid costs (which threaten tooverwhelm state budgets and severely curtail the resourcesavailable for other essential social needs), we still ignorethis reality when we address end of life medical care. Toaddress it better will require an increased awareness of therole that justice might play in end of life decision-making.

Interests of health care professionals. Just as justicemay need to be introduced into the debate as a counter-balance to autonomy, there has been a paucity of atten-tion paid to the interests of health care professionals andfamilies in end of life decision-making—except to the ex-tent that courts have almost uniformly rejected these con-siderations as not worthy of consideration because theyare antithetical to patient autonomy. Considerations ofprofessional interests have arisen when health care profes-sionals object to judicial orders permitting the termina-tion of medical treatment because they feel morally com-promised by participating in the termination. The usualresolution of such cases (there is only a smattering) is forthe patient to be transferred to the care of others whoshare the patients’ views. But this does not fully addressthe issue. Consideration needs to be given not only to themoral sensibilities of health care professionals, but also to

the many people who care for terminally ill patients butwho are not usually thought of as professionals, such asaides and orderlies. This is especially true in long termcare facilities, where strong emotional bonds are perhapsmore likely to develop between caregiver and patient.

Family interests. Similar attention—a fortiori—needsto be paid to interests of the patient’s family, which, likecaregivers, should be defined more in terms of social real-ities than formal relationships. There are relations byblood and by marriage whose interests, given their pastand current relationship with the patient, are not particu-larly strong, and there may be others—friends and do-mestic partners—who have no legal relationship to thepatient but who have a strong social relationship. Craftinglaw that gives consideration to the interests of these indi-viduals is a daunting task, but to ignore them completelyis unjust and can give rise to the kinds of conditions thatcreated and perpetuated the conflict in Schiavo.

Avoiding Litigation, and Doing It Better

The moral of the tale is consistent with what is knownof litigation in other spheres: litigation has significant

limits as an instrument of systematic social change. Whileit would be naïve to advocate that litigation not continue,we must try to use other means of social change. Perhapswe need to pay more heed to judges’ pleas that legislaturesaddress end of life issues. Our first priorities might be bet-ter statutes on advance directives—such as the adoptionof the Uniform Health Care Decisions Act—and on theuse of adequate treatment of pain. However, in the cur-rent climate, if the goal is to preserve the consensus aboutend of life decision-making, it may turn out that what weneed is not an alternative to litigation, but a smarter liti-gation strategy.

1. Black’s Law Dictionary, 8th ed. (2004).2. See S. Miles, “Taking Hostages: The Linares Case,” Hastings

Center Report 19, no. 4 (1989): 4; McKay v. Bergstedt, 801 P.2d 617(Nev. 1990).

3. In re Martin, 538 N.W.2d 399, 406 n.12 (1995). See alsoCruzan v. Director, Missouri Dep’t of Health, 497 U.S. 261, 350(1990) (Stevens, J., dissenting).


T he United States Supreme Court decision in thecase of Nancy Beth Cruzan, Cruzan v. Director,Missouri Department of Health, was a landmark

in law concerning decision-making near the end of life,but it was not the end of social controversy. The Courtestablished the constitutional right to refuse medicaltreatment—even life-prolonging medical treatment—but it did not settle the moral question of how and whenthis legal right should be exercised, nor did it lessen thegap between the theory of how end of life decisionsshould be made and the practice of how such decisionsactually are made at the bedside.

Twenty-five years after Cruzan, end of life care is anexus of cultural and political conflict. The mass media’saggressive pursuit of discord, coupled with various inter-est groups’ use of the Internet to amplify divergent pointsof view, fuel the polarization of the issue. Sifting out ac-curate, responsible medical information and opinionfrom unfounded or exaggerated claims has become ex-ceedingly difficult. Although conflict and rhetoric ranhigh in the 1980s as the Cruzan case moved through thecourts, that episode seems almost calm compared to thespectacle unleashed in 2005 by the sad case of Terri Schi-avo.

In this essay we aim to synthesize and discuss many ofthe insights and arguments contained in the precedingpapers. We also draw a series of lessons—“recommenda-tions” seems too precise and definitive a word for the cur-

rent state of play in this field—about where the move-ment to reform end of life care should head.

Before turning to specifics, one general observation isin order about the type of discourse that should be thenorm in the end of life care reform movement. Advocacymust ground its ethical arguments in the best and mostobjective understanding of medical facts available. It isalso essential that this movement remain dynamic, flexi-ble, and open to new ideas and to conversation with newvoices. Reasoned discourse, pragmatic improvement, andrespect for civil rights and human dignity must be thehallmarks of end of life care reform in the years ahead.

How Far Have We Come?

Between the Quinlan decision in 1976 and theCruzan decision in 1990, something like a consen-

sus emerged, at least in the law. But end of life decision-making remains far from ideal. Many people die todaywhile still in pursuit of unrealistic, futile hopes for cure;many deaths leave surviving family members and lovedones feeling regret as well as grief and loss. Dying be-comes the object of conflict, within families or betweenfamily and health professionals. People die, not in the fa-miliar surroundings of home or a good nursing facility,but in an ambulance, emergency room, or intensive careunit. Equally troubling is the fact that many people stilldie in severe pain—not because pain cannot be treated ormanaged (that is very rare), but due to lack of physiciantraining, unnecessary regulatory red tape, and financialbarriers to access to hospice and palliative care services.

What has gone wrong and continues to go wrong?Three themes in answer to this question resonate in theessays collected here.

The Quest to Reform End of Life Care:

Rethinking Assumptions and Setting New Directions

b y T H O M A S H . M U R R AY A N D B R U C E J E N N I N G S

Thomas H. Murray and Bruce Jennings, “The Quest to Reform End ofLife Care: Rethinking Assumptions and Setting New Directions,” Improv-ing End of Life Care: Why Has It Been So Difficult? Hastings Center ReportSpecial Report 35, no. 6 (2005): S52-S57.


For one thing, most people would prefer not to staredeath in the face—at least not their own. Consider peoplewith a life-limiting illness who retain decision-making ca-pacity. Some of them resist enrolling in a hospice programuntil very late, for it requires that they forgo nonpalliative(curative) treatments, and it feels like giving up hope. (Fortheir part, doctors don’t really know when to recommendhospice enrollment, and they don’t want to feel as thoughthey are abandoning their patients.) Some don’t executean advance directive, or, if they do, they have not talkedto their health care proxy (or the rest of their family)about their wishes and values in enough detail to provideuseful guidance. Then there are those critically and termi-nally ill people who have lost decision-making capacity;even more uncertainty and trouble arise in their cases. Amajority of these do not prepare any type of advance di-rective. Even when they do, however, there is no guaran-tee that either the named proxy or the attending physi-cians will adhere to it.

Moreover, what was widely believed to be the consen-sus on how to make decisions at the end of life is nottoday—and perhaps never was—universally shared. Peo-ple living with disabilities are sensitive to the discrimina-tion that works against them in our society. When itcomes to end of life care, advance directives, and decisionsto forgo life-sustaining treatment, they worry that an able-bodied perspective on the quality of a life marked by se-vere impairment and dependency is likely to be biasedagainst continued treatment and life. A similar bias maycolor the advance directives of still healthy individualsfearful of future disability. Those who believe in the sanc-tity of life object in principle to decisions that may hastendeath (and especially to the discontinuation of artificialnutrition and hydration). Also, in our diverse and plural-istic society, many racial and ethnic minority communi-ties have long found the consensus on end of life treat-ment foreign to their way of thinking about death anddying, medical care, and family relationships. For thosewho have struggled much of their lives to obtain access tohealth care, discussions about refusing life-sustainingtreatment are hard to fathom. Such discussions makethem mistrust the motives of doctors and hospitals whobroach the subject.

Finally, and perhaps most troublesome, is the realiza-tion that this consensus is based on several profound mis-conceptions and oversimplifications:

• Our approach to end of life decision-making has beenexcessively rationalistic. The system of end of life careworks best for those who plan ahead for their terminal ill-ness, and it does not always work well even for them.Most Americans find planning for their own deaths ex-ceedingly hard to do. The number of people who prepareadvance directives (or even property wills) remains small.The consensus, on the other hand, assumes that peopleare able and willing to acknowledge their own mortalityalong with the limits of what medicine can promise.

Furthermore, such attitudes toward future planningand control do not travel well across cultures and tradi-tions within our increasingly pluralistic society. The wordsin durable powers of attorney for health care can be trans-lated into other languages, but the concepts in them mayremain incomprehensible. Is there only one universal par-adigm of responsibility or virtue in the face of death? Areplanning and decision-making to spare oneself from cer-tain types of treatment necessarily the most appropriateresponse? Or might one’s attention be directed elsewhere,toward one’s faith or toward concern to protect familyfrom being burdened?

• Our approach to end of life decision-making has beenexcessively individualistic. For the past thirty years, pa-tient autonomy has been the cornerstone of our approachto decisions near the end of life. Framing end of life careas first and foremost an issue of privacy (as the Quinlancourt in New Jersey did in the wake of the landmarkSupreme Court privacy cases, Griswold v. Connecticut andRoe v. Wade) casts dying as primarily a matter of civil lib-erties. But this approach underestimates the social powerof medical science and technology on the one hand, andthe cultural meaning of death and dying (such as thenorms and responsibilities of family members as care-givers) on the other.

The end of life is not the best time to wage battles onbehalf of autonomy. Caring, family solidarity, mutual re-spect, love, and attentiveness to the dying person are thequalities most needed then. If anything, the consensusabout patient autonomy has been rather distrusting offamilies and tends to make them morally invisible in theofficial dying process. They become empty conduits ofthe patient’s wishes. Mothers and fathers, brothers and sis-ters, lose their long relationships with the dying personand become “surrogates” or “proxies”—cold terms con-noting an impersonal role.

We sometimes seem to act as though dying were solely the concern of

the dying person. The fact is, we die, as we live, in a web of vital and

complex relationships.


In order to improve end of life care, liberation of thepatient from heavy-handed medical paternalism is a nec-essary but far from sufficient accomplishment. Law,ethics, and policy must also come to grips with the funda-mentally communal and public—not private—issues ofmortality and meaning. We sometimes seem to act asthough dying were solely the concern of the dying person.The fact is, we die, as we live, in a web of vital and com-plex relationships. What happened in life, and what hap-pens in dying, is shaped by and shapes those relationships.

• Our approach to end of life decision-making has beenbased on what may be a misdiagnosis: we have assumedthat inappropriately aggressive and unwanted treatmentat the end of life is fundamentally a problem of prognosticuncertainty and poor communication. In fact, as theSUPPORT study demonstrated, physician behavior is notaltered significantly by addressing uncertainty and poorcommunication alone. These are elements of the personalinteraction between physician and patient. The funda-mental problem with end of life care, however, may bestructural and institutional in nature. In the modern acutecare hospital, virtually everything is oriented toward usinglife-sustaining equipment and techniques, not toward for-going them. The informal culture of specialty medicine,the reward system, the institutional pressures faced byfamily members, the range of choices people in extremisare being asked to make—each of these factors and moremake up a system that is remarkably resistant to change.

Lessons Learned: Muting Challenges andCharting A New Course

How then might we go about changing the system?Doing so will require a forceful response to three

challenges.The first challenge is to health policy broadly defined.

We must educate and motivate health professionals, adaptinstitutions, and realign financial incentives so that, inJoanne Lynn’s words, “just about the right services will bein place and just about the right things will happen for pa-tients, because they are ‘built into the system.’” As Lynnnotes, distinct trajectories of dying can be identified forlarge populations of patients. Each of these trajectoriesposes its own challenges for patients and families, healthcare institutions, and policy-makers. And each of thesetrajectories requires a well-adapted caregiving system withdifferent types of medical and psychosocial services of-fered at different times.

The second challenge is to reach across color, class, dis-ability, and moral convictions to create a new consensuson care at the end of life that takes into account feelings ofmistrust and lived experiences of unequal treatment. Thiswill not be an easy task, but one imperative is clear: thecircle of people engaged in forging the consensus must be

enlarged. People with disabilities, people with strong reli-gious beliefs about the sacredness of life, and people whofeel left out by mainstream medicine must become part ofthe conversation. There is also reason for hope. Ideologi-cal differences are likely to dwindle in significance whenpeople confront the lived realities of suffering patients,grieving families, and compassionate caregivers.

The third challenge may be the most difficult. Wemust rebuild, reinforce, and reinterpret our laws, institu-tions, and practices around the acknowledgment thatdying is an interpersonal affair, that it is not undergonestrictly by individuals. Hospice does this; it creates spacefor families and intimate friends to be close to the dyingperson, and it recognizes the emotional needs of thosepeople. The durable power of attorney for health care canlikewise be understood in this light; health care proxy de-cision-makers can and should take into account the dyingperson’s concerns for those whose lives will be affected bythe patient’s death. In the inventory of final concerns formany dying persons, taking care of loved ones—whomust cope with their own grief and conflict, and move onwith their lives—counts for as much, and perhaps more,than finding interventions that may extend life.

If we focus on these challenges, what specific practicalsteps can be taken to put end of life care on a new andbetter course? There are again three areas of thinking andpractice that we believe should be singled out for specialattention: (1) our approach to end of life care delivery sys-tems; (2) our approach to advance directives and surro-gate decision-making; and (3) our approach to managingconflict and disagreement.

1. We should approach end of life care from more of a pol-icy- and population-based perspective, not simply from aclinical one.

Thus far, the ethical/legal consensus on the appropriateframework for end of life care has focused so much onempowering patients that it has not noticed the extent towhich it also burdens them and their families with an ex-cessive menu of detailed and often bewildering clinicalchoices. Instead of focusing on how to accommodate theidiosyncratic decisions of individual patients one at atime, as it were, we should ask what needs dying personsgenerally have, and how we can design a health care deliv-ery system that will meet most of those needs for mostpeople, most of the time.

An epidemiologically well-grounded approach to thedesign of end of life care systems would avoid two inap-propriate extremes that are now all too common—on theone hand, a virtually automatic do-everything-possible,“full court press” approach, and on the other, an approachthat requires family members to micromanage a recurringseries of life-threatening complications within an underly-ing progressively degenerative and incurable chronic dis-


ease. In recent years, hospice programs haveprovided exactly this kind of system, and pal-liative care is extending this approach so that itcan be used for longer periods in the patient’scare and can allow palliative treatments to sup-plement reasonable attempts at disease-modi-fying and life-extending medical treatment.

2. We should reevaluate advance directives andsurrogate decision-making.

This reevaluation will have a number offacets, and advance directives will be under-stood differently when a less individualistic,more family-oriented and systemic approach istaken in end of life care.

2(a). Advance directives should be more ade-quately and routinely factored into informationand decision-making systems that physicians arecomfortable with.

Hickman and colleagues discuss ways ofdoing this. Their recommendations includethe development of new kinds of treatment or-ders and documentation, electronic recordkeeping, and the like. Quality improvementssuch as these are taking place throughout med-ical care, and there is no reason in principle that they can-not be helpful in end of life care as well.

2(b). The appropriate role of family members in such casesshould be more easily accommodated.

Without abandoning the important legal strides thatreinforce a competent person’s right to refuse unwantedinterventions, our end of life care system should learnfrom the voices assailing it. The weakest link in the con-sensus has always been the problem of how to translatethe right of a competent person to refuse life-extendingtreatment into a right exercised by someone else on behalfof a person who no longer has decision-making capacity.

Consider first treatment directives, or what traditional-ly have been called “living wills.” Even when someone hasthe wisdom and prescience to execute a treatment direc-tive, doubt and conflict can arise. The problems are le-gion. We rarely foresee in accurate detail the circum-stances of our dying. A typical living will may direct thatif the patient is in condition a, b, or c, then treatments x,y, or z should not be imposed. But what if the patient’s ac-tual clinical condition does not quite fit any of the cate-gories envisioned? How are clinicians or surrogates to di-vine what the patient meant when writing, “I don’t want

to be a vegetable?” What if the treatment modalities re-jected (or embraced) when the living will was composedseveral years ago are now outmoded and new treatmentoptions, with different risks and benefits, have taken theirplace?

Durable powers of attorney for health care or “proxy”appointments are more supple, but have their own prob-lems. Appointing another person to speak for you seems asounder strategy, but even that can be open to dispute.Sure, Sam and Mary had been married for thirty-sevenyears when Sam appointed Mary his health care proxy,but that was six years ago, before they began fighting in-cessantly.

More than thirty states have taken a different approachto coping with the limitations of advance directives in theform of a law listing family members and friends whowould be authorized to make decisions for a person with-out capacity. These individuals are typically listed in pri-ority order, and health care providers are supposed to turnto them in that order. Such statutes are helpful as far asthey go, and they are preferable to the legal limbo intowhich persons without advance directives now fall inmany states. But they do not go far enough. They do lit-tle or nothing to avoid conflicts within families, of course.

A Friend’s Story, by Robert PopeBy permission of the Robert Pope Foundation.


Nor do they ensure that the most knowledgeable, reason-able, and truly caring person is selected to be the surro-gate.

Finally, this approach and these so-called “family deci-sions” statutes dodge the genuinely difficult question thatprocedural solutions have so far evaded: what substantivestandard should govern end of life care decision-making?Put differently, it is necessary to decide which treatmentsare objectively beneficial and in the best interests of thepatient, and which are not. We have avoided serious en-gagement with this thorny question for as long as we can.We should avoid it no longer.

As the contributions by Asch and Burt in particular re-mind us, many are now challenging not only the practi-cality of advance directives, but also their validity. Shoulda healthy or able-bodied person be permitted to make adecision that will be binding later in life, when he or shemay be impaired or disabled? Is there sufficient continuityof values and preferences over time to be confident in fol-lowing the perspective of the earlier self? What do the no-tions of self-determination (autonomy) and best interestsreally mean, particularly if the life-prolonging treatmentin question is not clearly futile? Many advance directivestatutes and many of the legal standards articulated by thecourts appeal to these concepts without sufficiently exam-ining how problematic they can be in actual end of life sit-uations.

These are fundamental ethical and philosophical issuesthat do not lend themselves well to new court decisionsand legislation. We do not favor laws that would requirethe provision of artificial nutrition and hydration for allpatients in a persistent vegetative state, for instance. Nordo we favor laws, such as one in Texas, that permit healthcare providers to determine that further life-extendingtreatment for a patient is futile and unilaterally to decide,even if family members disagree, that the treatmentshould be discontinued. New laws that would either re-quire or forbid certain types of life-sustaining treatments,no matter what, are not what is needed now. At best theywould be premature and imprudent; at worst, tyrannicaland unjust.

Before we get more law, we need more deliberation,debate, and moral wisdom from the mechanisms of com-munication and education in our society. Learning how toanalyze in a substantive way what the best interests of thedying patient actually are in a given case is one way to

more fully accommodate the role of all family members inthe decision-making process.

2(c). Surrogates named in advance directives and other fam-ily members should be given adequate information, counsel-ing, and support.In recent years, national efforts to encourage and imple-ment the use of advance directives in end of life medicalcare have concentrated on making individual patientsaware of their rights under the law and on ensuring thatboth health care agents and other surrogate decision-mak-ers (such as family members) have information about thepatient’s medical condition and about the patient’s priorwishes and values. Not only have these two objectivesproved more difficult to fulfill than was anticipated; inand of themselves, they have proven to be insufficient toproduce ethically responsible and responsive surrogate de-cision-making. In building a system of surrogate decision-making for end of life care, we need to go beyond thesetraditional objectives in significant ways.

We need to place more emphasis on education, coun-seling, and support for health care agents and other fami-ly members to improve their capacity to play this role andto improve the quality of the decisions they make. Agentsare thought to be preferable to written treatment instruc-tions (living wills) because an individual on the scene hasthe flexibility to exercise judgment and to interpret the pa-tient’s wishes and values in light of specific and sometimesrapidly changing information about the patient’s condi-tion, treatment options, and prognosis. Written instruc-tions cannot have these qualities of flexibility and judg-ment. But while we seem to expect these skills in agentsand surrogates, we have done little or nothing to study theenvironmental conditions in the health care setting thatare most conducive to them, nor have we developed pro-tocols of education, counseling, and support aimed at en-abling surrogates to engage in good decision-making. Inshort, we have thus far focused almost exclusively on howto empower agents to make decisions; we must now alsobegin to address how to enable them to make good deci-sions.

Moreover, hospitals and other health care facilities havean institutional and systemic responsibility and role toplay in enhancing proxy decision-making. This is not tosay that individuals and families do not have a responsi-bility to prepare for these decisions on their own initiative.They do. But up to now, the institutional side of the equa-

Culture needs time to catch up with end of life law. The next decades

should be a time of education and soul-searching discussion in

communities and at kitchen tables, as well as in health care settings.


tion has been relatively neglected. More research and as-sessment tools are needed to study current institutionalpractices and to improve them in the future. Health careprofessionals must become more knowledgeable about,and sensitive to, the special needs of surrogates and thespecial burdens of the surrogacy role. To improve thequality of support that agents and surrogates receive, wemust learn to draw on many disciplines, including medi-cine and nursing, but also ethics, pastoral counseling, so-cial work, and other sources of expertise about the fullrange of cognitive and emotional work surrogate deci-sion-making entails.

Surrogacy is both a cognitive and an affective task. Itinvolves potentially complex factual information, values,and deep-seated emotions. While it is—and should be—focused primarily on the wishes, values, and best interestsof the patient, the decisions a surrogate makes redound toaffect the surrogate himself or herself (and the entire fam-ily) as well. Families and surrogates need to have a frame-work within which that information has meaning andwhich validates their own past relationship with the pa-tient and their own sense of themselves as loving, caring,responsible people faced with life-and-death decisions inthe midst of shock, loss, possibly guilt, and grief. To seesurrogacy as simply an information processing task is tomiss most of its human angst and drama. And yet that isthe approach that many health care facilities have taken,implicitly or explicitly, by the paucity of resources theyprovide to agents and surrogates, by the nature and styleof communication offered to them, and by the low prior-ity most institutions give to multidisciplinary counselingand support.

3. When conflicts and disagreements arise within families,independent mediation and conflict resolution services,including pastoral counseling, should be readily availablein health care institutions.

No strategy meant to allow people to control whathappens to them after they can no longer speak for them-selves is immune from dispute. Instructions must be in-terpreted; relationships evolve. From the point of view ofthe law, when a competent person says yes or no, we pre-sume she means what she says. Besides, when the conse-quences of a decision to refuse medical treatment fallmost directly on the one making the decision, that strikesus as respecting both liberty and justice.

Granted, even this seemingly clear case can quickly be-come murky. People’s motives can be obscure, even tothemselves. A refusal of treatment may be a thinly dis-guised question to one’s family: Am I too great a burdenon you? If not, please urge me to hold on. We know that

many people fear that their pain will not be treated, thatloneliness and indignity will mark their end.

And families can disagree. Sometimes, as in the Schia-vo case, their differences are sharp and enduring enoughto lead them to the courts. But litigation is a very bluntinstrument that inflicts painful wounds. As Alan Meiseleloquently notes, “Acrimony is beyond the scope of litiga-tion to repair”—especially acrimony built up over years ordecades of complex family dynamics. Nancy Dubler’s pi-oneering program in mediation and similar efforts de-scribed in her paper are heartening examples of a lesspainful alternative.

From Legal to Cultural Change

There can be no doubt that we are learning how to im-prove care near the end of life. Equally without doubt

is the fact that we still have a long way to go. Importantprogress has been made since 1976, when Karen AnnQuinlan and a new generation of effective mechanical res-pirators forced us to pay attention to hard choices.Progress has been made even since 1990, when theSupreme Court’s decision in the case involving NancyBeth Cruzan affirmed the constitutional right to refuselife-prolonging medical treatment. Despite this progress,too many Americans still receive poor end of life care anddie unnecessarily bad deaths. They and their familiesmust contend with a lack of information, misunderstand-ings, restrictive policies, and financial stress. They diewith inadequate palliative support, inadequate compas-sion, and inadequate human presence and loyalty, in fear,anxiety, loneliness, and isolation. They die in ways that ef-face dignity and leave bitter memories.

Further progress in improving end of life care does notdepend primarily on enacting new laws or regulations.Existing laws in most states will work, if we let them, and,if anything, end of life care reform in the past has been ex-cessively driven by the law. Culture needs time to catchup. The next decades should be, we believe, a time of ed-ucation and soul-searching discussions in communitiesand at kitchen tables, as well as in health care settings.And as we shift from legal to cultural means of change, sotoo should we move from a focus on procedure andprocess to a focus on the substantive arguments and val-ues that tell us what to decide, not just how to go aboutdeciding. We must talk about what we dare not name,and look at what we dare not see. We shall never get endof life care “right,” because death is not a puzzle to besolved. Death is an inevitable aspect of the human condi-tion. But let us never forget: while death is inevitable,dying badly is not.


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End of Life CareResources

Aging with Dignitywww.agingwithdignity.org

American Academy of Hospice and Palliative Medicinewww.aahpm.org

American Bar Association Commission on Law andAgingwww.abanet.org/aging

American Hospice Foundationwww.americanhospice.org

Americans for Better Care of the Dyingwww.abcd-caring.org

Caring Connectionswww.caringinfo.org

Center to Advance Palliative Carewww.capc.org

Center for Practical Bioethicswww.practicalbioethics.org

Completing a Lifehttp://commtechlab.msu.edu/sites/completingalife/index.html

Dying Wellwww.dyingwell.com

Growth House, Inc.www.growthhouse.org

The Hastings Centerwww.thehastingscenter.org

The Hospice Foundation of Americawww.hospicefoundation.org

National Center for Ethics in Health Carewww1.va.gov/vhaethics

National Hospice and Palliative Care Organizationwww.nhpco.org

On Our Own Terms: Moyers on Dyingwww.pbs.org/wnet/onourownterms

The Palliative Care Policy Centerwww.medicaring.org

Physician Orders for Life-Sustaining Treatmentwww.polst.org

Promoting Excellence in End-of-Life Carewww.promotingexcellence.org

Supportive Care of the Dying: A Coalition for Compassionate Carewww.careofdying.org

The organizations and websites listed below provide information that may be useful to those wishing to explore endof life care issues more fully. As with any such listing, the content and reliability of this information may vary. This list-ing is for informational purposes only and does not imply endorsement of these organizations or their materials.

ILLUSTRATION CREDITS

Deidre Scherer's fabric and thread images on aging have appeared inmany exhibitions throughout the United States and the world. Sheis also the recipient of a Fine Arts Fellowship from the Open SocietyInstitute's Project on Death in America. For more information, visitwww.dscherer.com.

The Robert Pope Foundation was established in 1992 to continuethe significant work started by Robert Pope before his death fromcancer at age 35. A talented artist, he completed a large body ofwork showing the cancer experience from the patient’s perspective.Since his death, this collection of paintings has been shown in 91cities worldwide, including medical clinics such as the Mount SinaiMedical Clinic in New York and the Mayo Clinic in Rochester,Minn. The Robert Pope Foundation also promotes educational,artistic, and health-related programs. For more information, visitwww.robertpopefoundation.org.

�� Adrienne Asch is the newly-appointed Edward and Robin Milstein Professor ofBioethics of Yeshiva University-Wurzweiler School of Social Work. In addition to heryears of writing and teaching in bioethics at Wellesley College and Boston University,she brings policy experience through her work with the New Jersey Commission onLegal and Ethical Problems in the Delivery of Health Care, where she worked onissues of protecting vulnerable patients, determination of death, and health care deci-sion-making at the end of life.

�� Robert A. Burt is Alexander M. Bickel Professor of Law at Yale University. Herecently wrote Death Is That Man Taking Names: Intersections of American Medicine,Law, and Culture (University of California Press, 2002). From 1993 to 2003, he servedon the Advisory Board of the Project on Death in America, Open Society Institute, andfrom 1995 to 1997 was a member of the Institute of Medicine Committee on Careat the End of Life.

�� Daniel Callahan, Director of the International Program at The HastingsCenter, has worked with Center research projects on death since its beginning in1969. He is also the author of The Troubled Dream of Life: In Search of a PeacefulDeath (Georgetown, 2000; second edition).

�� Nancy Neveloff Dubler is the director of the Division of Bioethics,Department of Epidemiology and Population Health, Montefiore Medical Center, andprofessor of epidemiology and population health at the Albert Einstein College ofMedicine. She also directs the Bioethics Consultation Service at Montefiore MedicalCenter (founded in 1978) as a support for analysis of difficult clinical cases present-ing ethical issues in the health care setting, using mediation as its process. She iscodirector of the certificate program in bioethics and the medical humanities, conduct-ed jointly by Montefiore Medical Center/Albert Einstein College of Medicine withCardozo Law School of Yeshiva University. Her most recent book is Bioethics Mediation:A Guide to Shaping Shared Solutions, with Carol Liebman (United Hospital Fund,2004).

�� Kathleen M. Foley is an attending neurologist in the Pain and PalliativeCare Service at Memorial Sloan-Kettering Cancer Center. She teaches neurology, neuro-science, and clinical pharmacology at Weill Medical College of Cornell University andholds the Chair of the Society of Memorial Sloan-Kettering Cancer Center in PainResearch. As an expert consultant to the World Health Organization Cancer andPalliative Care Unit and as past director of a WHO Collaborating Center at MemorialSloan Kettering Cancer Center, she chaired three expert committees, resulting in thepublication of three WHO monographs: Cancer Pain Relief (1986), Cancer Pain Reliefand Palliative Care (1990) and Cancer Pain and Palliative Care in Children (1996).

�� Bernard Hammes serves as the director of medical humanities atGundersen Lutheran Medical Foundation and Medical Center. Dr. Hammes has publishednumerous articles on end of life planning, and several private foundations have fund-ed his work. He led the development of the advance care planning programRespecting Choices and is a member of the National POLST (Physician Orders for Life-Sustaining Treatment) Paradigm Task Force.

�� Susan Hickman is on faculty at the School of Nursing and School ofMedicine at Oregon Health & Science University (OHSU), where she researches ethicalissues at the end of life and in the conduct of research. She is also a senior scholarin the OHSU Center for Ethics in Health Care. She is a consultant to the OregonPOLST Task Force and a serves on the National POLST Paradigm Task Force.

�� Bruce Jennings is senior research scholar at The Hastings Center and also

teaches at the Yale University School of Public Health. He served as associate directorof a project that produced the widely cited and influential Guidelines on theTermination of Life-Sustaining Treatment and the Care of the Dying (The HastingsCenter, 1987). He is also cofounder of Decisions Near the End of Life, an educationaland institutional change program on end of life care that has been used in over twohundred hospitals in thirty states. He has served on the boards of directors of boththe National Hospice and Palliative Care Organization and the Hospice and PalliativeCare Association of New York State and has written widely on ethical issues in end oflife, hospice, and palliative care.

�� Sandra H. Johnson holds the Tenet Endowed Chair in Health Care Law andEthics at the School of Law and the Center for Health Care Ethics at Saint LouisUniversity, as well as faculty appointments as professor of law in internal medicine atthe University’s School of Medicine and professor of health care administration at theSchool of Public Health. She directs the Mayday Project on Legal and RegulatoryIssues in Pain Relief at the American Society of Law, Medicine & Ethics and coau-thored Health Law – Cases, Materials and Problems (Thomson West, 1987; now in itsfifth ed.).

�� Joanne Lynn is a geriatrician and researcher who has focused upon seriouschronic illness and the end of life. She is senior natural scientist at the RANDCorporation in Arlington, VA.

�� Alan Meisel is professor of law, Dickie, McCamey & Chilcote Professor ofBioethics, and director of the Center for Bioethics and Health Law at the Universityof Pittsburgh. He served on the President’s Commission for the Study of Ethical Issuesin Medicine and Biomedical and Behavioral Research and participated in the author-ship of its report, Deciding to Forego Life-Sustaining Treatment. He is the principalauthor of the legal treatise, “The Right to Die: The Law of End-of-LifeDecisionmaking.”

�� Alvin Moss is a professor of medicine and the director of the Center forHealth Ethics and Law at the Robert C. Byrd Health Sciences Center of West VirginiaUniversity. He also serves as executive director of the West Virginia Center for End-of-Life Care which oversees the West Virginia POST (Physician Orders for Scope ofTreatment) Program. He has published numerous articles on end of life care—partic-ularly relating to dialysis patients—and has been awarded foundation grants to sup-port research and public outreach on end of life care. Dr. Moss is a member of theNational POLST Paradigm Task Force.

�� Thomas H. Murray is in his second tour of duty at The Hastings Center,this time as President (earlier, he was a research associate at the Center). He has alongstanding interest in how families face moral challenges. His most recent book isThe Cultures of Caregiving: Conflict and Common Ground among Families, HealthProfessionals, and Policy Makers (Johns Hopkins, 2004), edited with Carol Levine. Otherbooks include The Worth of a Child; Healthcare Ethics and Human Values (Universityof California, 1996); and the Encyclopedia of Ethical, Legal, and Policy Issues inBiotechnology (Wiley, 2000), edited with Maxwell J. Mehlman.

�� Susan Tolle is a professor of general internal medicine and geriatrics atOregon Health & Science University (OHSU) as well as cofounder and director of theUniversity’s Center for Ethics in Health Care and Cornelia Hayes Stevens Chair. Dr.Tolle has participated in two National Institutes of Health studies and has been prin-ciple investigator on thirty-nine foundation grants focused on end of life care, withcontinuous funding for two decades. She serves on the Oregon POLST Task Force andthe National POLST Paradigm Task Force.

Authors

Also from The Hastings Center

• Access to Hospice Care: Expanding Boundaries, Overcoming BarriersBy Bruce Jennings, True Tyndes, Carol D’Onofrio, andMary Ann Baily

A SPECIAL REPORT PUBLISHED WITH THE MARCH-APRIL

2003 HASTINGS CENTER REPORT

This document looks at issues of social justice, access,and public policy in hospice and palliative care. As itexamines the issues from the perspectives of social jus-tice and fairness, it also recommends ways in which thedefinition of hospice can be expanded to include moreAmericans for a longer period of time than simply thedays or months shortly before death.

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On the cover:At Night, © Deidre Scherer 2000, from the series Surrounded by Family and Friends, 36 x 48 inches, fabric and thread Photo: Jeff Baird

The Hastings Center addresses fundamental ethical issuesin the areas of health, medicine, and the environment as

they affect individuals, communities, and societies. With asmall staff of senior researchers at the Center and drawingupon an internationally renowned group of over 100 electedFellows for their expertise, The Hastings Center pursuesinterdisciplinary research and education that includes boththeory and practice. Founded in 1969 by philosopher DanielCallahan and psychoanalyst Willard Gaylin, The HastingsCenter is the oldest independent, nonpartisan, interdiscipli-nary research institute of its kind in the world. From its ear-liest days The Hastings Center has understood that themoral problems arising from rapid advances in medicine andbiology are set within a broad intellectual and social context.The Center’s collaborations with policymakers, in the privateas well as the public sphere, assist them in analyzing the ethi-cal dimensions of their work.

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ABOUT

THE HASTINGS CENTER

A HASTINGS CENTER

SPECIAL REPORT

WHY HAS IT BEEN SO DIFFICULT?

Adrienne Asch

Robert A. Burt

Daniel Callahan

Nancy Neveloff Dubler

Kathleen M. Foley

Bernard J. Hammes

Susan E. Hickman

Bruce Jennings

Sandra H. Johnson

Joanne Lynn

Alan Meisel

Alvin H. Moss

Thomas H. Murray

Susan W.Tolle

IMPROVINGEnd of Life Care

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Contributors

Edited by Bruce Jennings,Gregory E. Kaebnick, andThomas H. Murray

improving end of life care: why has it been so difficult?

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