Nuts and Bolts of Advance Directives

Hertzberg Palliative Care Institute

Brookdale Dept. of Geriatrics & Adult Development

Mount Sinai School of Medicine

New York, NY

HERTZBERG PALLIATIVE CARE

INSTITUTE

Adapted from The Project to Educate Physicians on End-of-life Care. Supported by the American Medical Association andthe Robert Wood Johnson Foundation

The Nature of Suffering and the Goals of Medicine - Eric J. Cassell

The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians’ failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.

Objectives

Understand that death is ubiquitous Undergo Fantasy Death Exercise: what do we all

want? Does reality clash with fantasy? SUPPORT data What is Advance Care Planning (ACP)? How do you begin a discussion about advance

directives (AD)? What is DNR?

– How does DNR fit into ACP discussion?

Ubiquity of death

Not all of us get married… Not all of us get diabetes… Not all of us have children… But all of us will die – and we usually have no

idea when.

Fantasy Death Exercise…

Consider for a moment the most wonderful death you can imagine for yourself. As though you were in a play: it doesn’t have to be realistic; it can be quite fantastic. You might not have thought about this before. Give it your best shot. – Where are you?– Who is with you?– What are you doing? – Any physical or emotional symptoms?– How long have you known?

…Fantasy Death Exercise

Only caveat: as in life, you must die. There is no way out.

What does your death look like?

…Fantasy Death: There are Common Themes

Feeling at home, or being at home Comfort Sense of completion (tasks accomplished) Saying goodbyes Life review Love No pain Make it quick

Site of Death

Hospitals: 56%Nursing homes: 19%Home: 21%Other 4%

( 1993 National Mortality Followback Survey)

Can End of Life Care Be Improved?

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)

SUPPORT: Background

Controlled trial to improve care of seriously ill hospitalized patients

Multicenter study funded by RWJ 9000 patients with life threatening illness

-1st phase- How people die in hospitals

-2nd phase- RCT of nurse based intervention, 2500 subjects in each group

53%

Physician Did Not Understand That a Patient Wanted to Avoid CPR

Prolonged Suffering: 10 or More Days in ICU, in Coma, or on Ventilator

38%

Experienced Moderate or Severe Pain at Least Half of the Time Within Their Last Few Days

50%

Impact of Serious Illness on Patients’ Families

Needed large amount of family caregiving 34%Lost most family savings 31%Lost major source of income 29%Major life change for family member 20%Other family illness from stress 12% At least one of the above 55%

(SUPPORT JAMA 1994;272:1839-1844)

SUPPORT: Site of Death

Site of death predicted by :– number of hospital beds– hospice spending– % patients in nursing home– expenditures on long term care– diagnostic category

Patient preferences irrelevant

Are these data consistent with your fantasy death scene?

Restoring the Balance: The Importance of Advance Care Planning (ACP)

Mechanical Care

Communication

& ACP

What is Advance Care Planning (ACP)

Planning for future medical care in the event patient is unable to make own decisions– Needs to be updated regularly

Empowers patient to explore own values, goals Determine proxy decision-maker It is a process, not an event Proper documentation avoids confusion & conflict

Clarify Goals, Treatment Priorities

Goals guide care Assess priorities to develop initial plan of

care Review with any change in

– health status– advancing illness– setting of care– treatment preferences

Advance Care Planning

Terms Used in Advance Care Planning (ACP)

Instructions for Medical Care

• Living will• Verbal statements• Personal letter or value

statement stating preferences

• The 5 Wishes

Designation of proxy• Health Care Proxy or Agent• Durable Power of Attorney

for Health Care

“Advance Directives”

How do Advance Directives differ from DNR?

ADVANCE DIRECTIVES– Should be considered by

anyone and everyone– Applies to all general

medical treatments– Document usually

requires patient signature

DNR or DO NOT RESUSCITATE– Should be considered by

people who have risk factors for not surviving resuscitation

– Applies only in case of cardiopulmonary arrest

– Document does not require patient signature

Support for Advance Care Planning

Ambulatory elderly patients– 87% favored routine discussion

Nursing home residents– 69% favored advance care planning

493 hospitalized patients– 80% favored discussion of AD

Patient Barriers to Completion of Advance Directives (AD)

Belief that physicians should initiate discussions*• Patients felt discussions should occur earlier than MDs. At earlier

age, earlier in disease history, earlier in patient-doctor relationship.

Procrastination Apathy Belief that family should decide Family would be upset by the planning process Fear of burdening family members Discomfort with the topic

(*Johnston et al. Arch Intern Med, 1995)

Physician Barriers to Advance Care Planning

Patients should initiate discussions. Physician lack of understanding of AD* MD erroneous beliefs about appropriateness* Lack of knowledge about AD’s* Discomfort with the topic. Time constraints. Negative attitude.

(* Morrison et al, Arch Intern Med, 1994)

Patient-Provider Communication

About Advance Directives

Survey of Medical Oncologists– 25% knew of existence of patients’ AD

Survey of Ambulatory Patients– 30% of patients who had completed an AD notified

their primary care MD

Survey of Nursing Home Charts– 25% of completed AD disappeared from the nursing

home chart after 2 years

What is the patient’s good?

“If medicine takes aim at death prevention, rather than at health and relief of suffering, if it regards every death as premature, as a failure of today’s medicine - but avoidable by tomorrow’s - then it is tacitly asserting that its true goal is bodily immortality... Physicians should try to keep their eyes on the main business, restoring and correcting what can be corrected and restored, always acknowledging that death will and must come, that health is a mortal good, and that as embodied beings we are fragile beings that must stop sooner or later, medicine or no medicine.”

(Kass LR. JAMA 1980;244:1947)

"To cure sometimes,

To relieve often,

To comfort always.“

- 15th C French saying

Take Home Lessons…Dying is part of living.

– Need to approach it openly despite its difficulty

Advance directives (AD) empower patients to reflect on their values, meaning of life, and illness experiences

AD help clarify patient’s wishes as to plan of care, and foster the patient-physician relationship

…Take Home LessonsWhen illness is incurable and death is

inevitable, goals may shift from cure to palliation– This shift is usually gradual as disease progresses

and curative options are exhausted

Setting clear goals helps guide direction & plan of care, & avoids confusion and conflict.