are we making a difference? time to put the patient experience at the centre of clinical ethics sue...
TRANSCRIPT
Are We Making a Difference? Time to Put the Patient Experience at the Centre of Clinical Ethics
Sue MacRae, RNBioethicistJoint Centre for Bioethics/ University Health Network
Are We Meeting the Human Needs of Patients?
Evidence Clinical ethics is more than
“hot topics”, well publicized and controversial issues
Can we dare to dig a little deeper into the human experience?
Definition of Clinical Ethics
to improve the quality of patient care by identifying, analyzing, and attempting to resolve the ethical problems that arise in the practice of medicine.
starting point for ethical analysis is the encounter between patient and health care provider.
stresses that the process and outcome of patient care is improved by acknowledging and respecting patient’s preferences and values and by empowering patients to make decisions based on their personal health care goals.”
Siegler, Pellegrino and Singer, 1990
Video excerpts taken from “Through the Patient’s Eyes”
Created by: The Picker Institute, Boston
www.picker.org
Other data
10-15% of patients report doctors talk in front of them as if they were not there.
Over 25% of patients report doctors spend less than 5 minutes preparing them for discharge
40% of dying patients have pain most of the time.
Why?
It’s the Right Thing to Do Reflects values and preferences of
those who receive care Only source of information regarding
certain aspects of medical care Acknowledges “experience” of illness as
key
Why? (2)
It’s Good Medicine Acknowledges preferences of patient as valid
clinical data Calibrates the severity of a condition Forms the basis for defining the condition and
severity Measures treatment complications Understands how the condition affects patients’
lives• Floyd Fowler, 1995
Why? (3)
It Improves Outcomes/Saves money Treatment choices consistent with choices Compliance with treatment Management of chronic illness Quality of life Patient and staff satisfaction Reduces utilization of health care Reduces cost and complexity
How DO we provide humane, ethical care that matters to patients and their families?
Three Obstacles to Meeting the Needs of Patients We don’t ground what we do in the
needs and experiences of patients We don’t take care of those that take
care Systems are designed poorly and overly
complex
Grounding What We Do In Patient Experience……..
Basic Bioethics
Overcoming the Assumptions and Myths about Patients Clinically relevant issues are the priority We do not know what patients need! Patients have low expectations Patients can judge quality Valid and reliable measures exist Not them, but you.
What Patients Say They Need
Based on the work of The Picker Institute and Harvard University
www.picker.org
Access to careRespect for patients’ values and preferencesCoordination of careInformation and educationPhysical comfortEmotional supportInvolvement of family and friendsContinuity and transition
What Doctors and Patients Agree AboutHow important is itthat MD...
Patients’rankings
Doctors’rankings
I s skillf ul 1 6
I s thorough 2 11
I s truthful 3 4
Takes patientseriously
4 8
Builds trust 5 2
What Doctors and Patients Disagree About
How important is itthat MD...
Patients’rankings
Doctors’rankings
Explains risks andbenefi ts
6 58
Answers questions 9 40
Explains medications 12 82
Diagnosis makes sense 20 62
What Doctors and Patients Disagree About
How important is itthat...
Patients’rankings
Doctors’rankings
Chart is there 40 4
I nfo is explainedprivately
80 10
MD doesn’t embarrasspatient
60 13
Staff are polite 72 17
Overcoming Assumptions and Myths about Ourselves
Are we using the right model? Are we asking the right questions? Are we too focused on the extreme?
The Patient’s Ordeal
“Some 13 years later, I realized….I focused largely on the doctor’s practice rather than the patient’s sense of medical crisis, on the rhythms and tempo with which professionals deliver their services rather than on the ordeals the patient’s suffer”
William May, 1991
Decision to Seek Care
Information Collection
Diagnosis
Treatment
Rehabilitation
Follow-up
•2 slides adapted from work by Dave Gustafson, Ph.D.University of Madison.
The Clinical Model
Physical Environment
Family & Friends
Feelings
Symptoms
Future
Self Image
Providers
Treatment Process
The Human Model
“After all, illness is the experience of disease through an individual patient’s world view and personal circumstance, including the patient’s values and beliefs; emotional, intellectual and financial resources; hopes and dreams. We must consider these values, beliefs, and anxieties as much a part of the patient’s history as is the traditional review of organ systems.”
Boumbulian, Day, Delbanco et al, 1991
Do we have adequate consent? Is the patient competent? Have we identified a substitute decision-
maker? Does the patient have an advance
directive? Are we respecting confidentiality? Are we telling the truth?
The Right Questions? Our Perspective
The Right Questions? The Patient Perspective
Do I understand my condition, the treatment alternatives, my future to the extent that I wish?
Am I treated like a human being with dignity and respect? Who can I trust? What I am going to tell? Am I being considered as a whole person? Is my family involved to the extent that I want them to be? Am I going to have any pain? Is the healthcare system going to help me cope with my life
being turned upside down from illness? Are my religious/cultural values going to be respected? Am I going to be abandoned when I die?
Example: Informed Consent Is the process of informed consent really
going to ensure patients understand their condition, treatment alternatives and future to the extent they wish?
Example: Informed Consent Is the process of informed consent really going to
ensure patients understand their condition, treatment alternatives and future to the extent they wish?– What about the research on:
• values?• comprehension?• learning styles?• documenting impact of stress on information retention?• on the understanding of complex medical vocabulary?• With people who don’t speak English?
“For every problem, there is one solution that is simple, neat and wrong”
Satirist, H.L Mencken
Examples of Initiatives
NEMC Kaiser Permanente Colorado Stanford U. School of Medicine University of Wisconsin Northwestern Memorial Hospital University of Worcester
Comments
We Don’t Take Care of the People that Take Care
“Asylum” Clinicians deny their own illness. To a thoughtful clinician, good clinical
practice has always meant both good technical care and good ethical care.
What to do with all that suffering?
“If we were gerbils, we would eat each other.”
Staff nurse, UHN Emergency
“At no time in my job does anyone reward me for being a good doctor…….In fact most of what is expected of me, pulls me far away from patients and then I am left in the middle of the night with my own conscience to decide what to do with that. In the end everyone loses.”
UHN Senior Physician
“The patient is not just a patient to me, but part of me. I don’t just leave here at the end of the day, like you would if you worked in a regular job, instead day after day I struggle with all the different kinds of cancer that I see in them and in me, and all the different kinds of suffering that we feel together. When they die, I die. Maybe its not a good thing, for either of us, but this is a life of a caregiver.”
Nurse, Calgary General Hospital
Systems are Designed Poorly and are Overly Complex There is no “system” in health care Supply-side focus Multiple perspectives Hierarchies Waste Funding forces fragmentation Perception of higher priorities
“There seemed to be an insistence at Sloan-Kettering, I told them, on the validity of a series of equations that held that, if an individual’s needs exceed what the institution can comfortably provide, then that individual’s needs must therefore be excessive; that whatever level of care the institution is capable of must be adequate, and, therefore, if that care is not good enough, then the patient is unsalvageable.”
Evan Handler, Time on Fire
A Contemporary Fable
By Donald Ardell
Who Cares About What
Physicians care about:– technical quality of care– good clinical outcomes– appropriate process of care that meets
professional standards– cost-effective care?– humane personalized aspects of care?
Adapted from slides by Jennifer Daley MD Beth Israel Medical Center, Boston
Who Cares About What (2)
Nurse, therapists about:– excellent process of care that meets
current professional standards– humane, personalized care for patients,
families and their staff– good clinical outcomes– culture of safety– cost effective care?
Who Cares About What (3)
Health care managers and administrators care about:– cost-effective care– access– service quality– meeting professionally established
community standards of clinical practice– staying in business
Who Cares About What (4)
Patients and families care about:– humane, personalized care responsive to
their individual needs– retaining, improving, and/or enhancing
function and quality of life– access to care– technical competence of physicians and
nurses
“Just think about how big the world is - 6 billion people each holding a universe in their own
head!” Dirk Koechner, Philosopher
What Should be Done, Can be Done!
Basic Bioethics
Conduct research to explore how patients define good or ethical health care. Collaborate with others.
Encourage staff to identify for themselves what ethical practice (“doing good”) means.
Encourage articulation of a common goal of ethical practice that meets the needs of clinicians and patients.
Basic Bioethics (2) Provide concrete and practical examples of
ways to make patient-centered ethical change. Evaluate change, including clinicians’ and
patients’ experience as a reliable and valid outcome of ethical practice.
Support the moral agency of all clinicians by supporting their good intentions and hard work.
Provide education and support for decision-making around difficult ethical decision-making.
Basic Bioethics (3) Investigate the barriers that face clinicians and
organizations in meeting the REAL needs of patients. Conduct research to explore how ethics consultation
services can be understood by patients and their families and directly benefit them.
Investigate the views and beliefs of patients on common ethical issues that impact them directly, such as competency, and end of life care and resource allocation.
Conduct research to discover whether ethics policies and guidelines include the patient’s voice, and actually represent the values and needs of patients.
The Future? “The Ethic of Illness”
Representation Reciprocation Reconciliation Contingency
Ethic of Illness
“The job of the clinician…..cannot be formulated in terms of broad principles, bioethical or otherwise, but only as a series of practical tasks. These tasks include settling upon the most appropriate way to approach the patient, talk to him, to allay his fears, and to establish the common ground on which mutual decisions can be taken.”
Paul Komesaroff, Microethics.
“The theory of rational agency does not hold in practice--we have been able to justify and rationalize anything that we have been able to do.”
Eye on Patients Participant, AHA 1999
“The ultimate task of ethics is not to mediate day-to-day conflicts sufficiently to keep the operation running; the ethical task is leading people--whether they provide care or receive it--to recognize what they are doing to their lives over a much longer term.”
Arthur Frank