(c) Ian Anderson Continuing Education Program in End-of-Life Care
The New Paradigm of Patient-Physician-Hospital-Relationships: Clinical and Ethical
ConsiderationsJune 8, 2001
Michael Gordon, MD, Baycrest Centre for Geriatric Care
Sue MacRae, RN, University Health Network
Case #1 (1) 77 y.o. Catholic male patient Heart failure after third MI CCU, Cardiac Arrest Currently on a ventilator Not conscious/variable Widower 3 children
Case #1 (2) Staff feel life support has no benefit Family all agree they want to continue Conflict early on with attending physician Non-communication, hostile threats by
family
Case #2 (1) 89 y.o. female, non-orthodox Holocaust
survivor Son and daughter, son dominant, daughter
goes along 2nd husband can’t make decisions, “too
much for him” Unclear about relationship between children
and step father
Case #2 (2) Son, very intrusive (wants to be consulted on
every care issue) but indecisive about basic decisions
Patient- long-standing diabetes -gangrenous foot, previous MI and stroke: pain management of foot a problem
Son refuses regular analgesia, does not want mother “zonked out” - does not acknowledge degree of pain
Case #2 (3) Staff concerned about suffering of patient Gangrene progresses, probably needs
amputation Son wants to use alternative treatments, herbal
remedies, supplements. Refuses to consider amputation until Diabetes controlled
Staff explains can’t control Diabetes with infected Gangrenous leg.
Case #2 (4)1. Hostile son, emotional daughter- appears
immobilized- defers to brother
2. Son and daughter- appear to be trying to “save and protect”
3. Nurses withdrawing, don’t want to be involved, feel abused, always questioning their care
4. Physician cannot respond to time demands
Case review What’s going on? Is there a resolution? What must be the goal of care and
direction of staff?
Defining the Problem Health care system under many pressures Main focus recently has been on resources:
financial and human Controversy of structure and philosophy of
system: publicly funded, privately funded- mixed systems
Major advances in health care treatments
Reasons for New Challenges Issues in communication - who talks to
whom and when? Availability of health care “information” Difference between knowledge and
information. Misinformed families/patients Does information replace trust? Has trust been eroded and if so why?
Perspective of Health Care Providers Perceived loss of “respect” Government attitudes towards providers Media depiction of providers- “catastrophe
a day” Has there been a loss of “authority”? If so how do we cope and accommodate? Staff suffering: It’s a tough job!
What’s going on? (1)
Approaches and principles to consider. Assume that family is acting on patient’s best
interests- must always keep in mind Have we addressed patient and families basic
needs? Family may refer to discussions or experiences
that reflect shared values - that is all they may have to go on in making difficult decisions
What’s going on? (2)
1. Family dynamics
2. Try and define whose who in the family and their roles
3. Primary caregivers vs. those who live far away
4. Historical relationships, conflicts and alliances
5. Re-constructed families- who makes what decisions and what are the relationships and who is empowered to “speak”?
What’s going on? (3)
Competing agendas or unique perspectives? (life, suffering, lingering, false hope)
Family’s view may be on conflict with staff’s view of the situation (prognosis, previous experiences)
Different family members may have conflicting views: i.e. Pain management, long-term survival, ability to eat
What’s going on? (5)
What to do if “system” not-responsive: i.e.
*Alternative therapies
*Level of care
*Approach to treatment
*Threats and complaints
*Who mediates disagreements
Perspective of Patients Interfacing with a complex and often
disorganized system Not clear who to trust? Higher expectations from service industry Still vulnerable
What Patients Say They Need
Based on the work of The Picker Institute and Harvard University
Access to careRespect for patients’ values and preferencesCoordination of careInformation and educationPhysical comfortEmotional supportInvolvement of family and friendsContinuity and transition
Difficult role of family member seeing loved one seriously ill understanding nature of illness, treatment
options making the “best” decision anxiety and guilt
Family as decision maker: a difficult job
Why don’t patients and families trust health care? Most do! Media Lack of coordination between promised, expected
and what happens Diffusion of responsibility and specialization Lack of accountability Staff complaining to patients about system
Decision to Seek Care
Information Collection
Diagnosis
Treatment
Rehabilitation
Follow-up
•2 slides adapted from work by Dave Gustafson, Ph.D.University of Wisconsin, Madison.
The Clinical Model
Physical Environment
Family & Friends
Feelings
Symptoms
Future
Self Image
Providers
Treatment Process
The Patient-centred Model
Doctors and patients disagree about underlying assumptions of quality of life ...
“Glad to be alive” Emergency medical providers 18% Person with chronic quadriplegia 92%
“QOL average to above average Emergency medical providers 17% Persons with chronic quadriplegia 86%
Gerhart, KA, et al. Annals of Emergency Medicine 23:4 April 1994
Healthcare Providers and Decision-Making
Duty to help with decision-making Patients want to know how treatments will
improve their quality of life and achieve goals Explore what they want, fear, value, and hope for Place risks and benefits into context and
likelihood of treatment achieving desired outcomes
Quality EOL CareHEALTH CARE PROF. overall quality of life physical well-being and
function psychosocial well-being
and function spiritual well-being patient perception of care family well-being and
perception of care
PATIENTS receiving adequate pain
and symptom mx avoiding inappropriate
prolongation of dying achieving sense of control relieving burden strengthening relationships
with loved ones
Singer et al JAMA, 1999
Quality EOL Care: New Model Adequate pain &
symptom management Avoid inappropriate
prolongation of dying Achieving a sense of
control Relieving burden Strengthening
relationship with loved ones
Recommended process in these cases Unilateral limitation of treatment strongly
discouraged Promote Mediation and Negotiation Patients/families have right to fair process Have we missed anything (basic needs)? No Slow Codes!! Trial of therapy - clear framework Transfer - to other unit/facility-by agreement only Legal advise
EOL Decision Making with SDM’s 7. Acknowledge the difficulties of the substitute’s
situation
8. Normalize the experience
9. Empathize
10. Place the decision-making in a teamwork context
11. What are the physician’s recommendations in view of the patient’s previously expressed values, goals and beliefs?
Futility PATIENT Human experience
patient (rotting body) family (facing death) doctor (conflict)
Decision making: communication of uncertainty
Contextual factors: palliative care, resources allocation
S Workman, MSc thesis, U of T
HEALTH CARE PROF. Quantitative: “when
physicians conclude… that in the last 100 cases a medical treatment has been useless.”
Qualitative: “merely preserves permanent unconsciousness or fails to end total dependence on intensive medical care.”
Futility: New Model Human experience of
dying (patient, family and staff)
Communicating uncertainty
Palliative care Priority setting
Summary Questions (1)
Do we learn anything by looking “through the patient’s eyes”?
Have we addressed staff suffering? Is there a change required from the way
staff look at their roles and the way they perceive their patients and the families of their patients?
Covenant for Health Care Providers
Health care is, at its centre, a moral enterprise grounded in a covenant of trust. By its traditions and its very nature, it is a special kind of human activity--one that cannot be pursued effectively without the virtues of humility, honesty, intellectual integrity, compassion and effacement of excessive self interest. Our first obligation must be to serve the good of those persons who seek our help and trust us to provide it.
Based on Physician-Patient Convenant written by Crawshaw, R et al JAMA 1995 273:1553