Transcript Communicating Bad News

Nuts and Bolts of Advance
Directives
HERTZBERG
PALLIATIVE CARE
INSTITUTE
Hertzberg Palliative Care Institute
Brookdale Dept. of Geriatrics & Adult
Development
Mount Sinai School of Medicine
New York, NY
Adapted from The Project to Educate Physicians on End-of-life Care.
Supported by the American Medical Association and
the 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:
Nursing homes:
Home:
Other
56%
19%
21%
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
Physician Did Not Understand That a
Patient Wanted to Avoid CPR
53%
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)
Communication
& ACP
Mechanical Care
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 Lessons
When 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.