(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? (4)

What does it take to challenge the system? May be one outspoken person

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

(c) Ian Anderson Continuing Education Program in End-of-Life Care

“Through the Patient’s Eyes”

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

(c) Ian Anderson Continuing Education Program in End-of-Life Care

High Quality End of Life Care

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?

Summary Questions (2)

Is challenging the system the way to go for families?

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