Transcript End of Life Issues in Cancer Care Are We Making Progress? Carol Taylor, RN, PhD Georgetown University Center for Clinical Bioethics.

End of Life Issues in Cancer Care
Are We Making Progress?
Carol Taylor, RN, PhD
Georgetown University
Center for Clinical Bioethics
Are We Making Progress?
 Terri Schiavo, the 41-
year-old brain-damaged
woman who became
the centerpiece of a
national right-to-die
battle, died March 31,
2005, after a 12 year
court battle.
Are we making progress?
The America I know and love
is not one in which my
parents or my baby with
Down Syndrome will have to
stand in front of Obama’s
“death panel” so his
bureaucrats can decide,
based on a subjective
judgment of their “level of
productivity in society,”
whether they are worthy of
health care. Such a system is
downright evil.
Are we making progress?
In a bulletin last
month (July), the
Department of
Veterans Affairs
recommended
“Your life, your
choices” as a tool to
help veterans with
"advance care
planning."
On "Fox News
Sunday," H. James
Towey,, said the
guide seemed to
encourage people to
"hurry up and die."
(August 23, 2009)
The following clinical situations were recently
identified as creating the highest degree of moral
distress for critical care nurses
1. Continuing to participate in care for
hopelessly ill person who is being sustained
on a ventilator, when no one will make a
decision to “pull the plug”
2. Following a family’s wishes to continue life
support even though it is not in the best
interest of the patient
3. Initiating extensive life-saving actions when I
think it only prolongs death
4. Following the family’s wishes for the
patient’s care when I do not agree with them
but do so because the hospital administration
fears a lawsuit
5. Carrying out the physician’s orders for
unnecessary tests and treatments for
terminally ill patients [Elpern, E.H., Covert, B. &
Cleinpell, R. (November 2005). Moral distress of staff nurses in
a medical intensive care unit. American Journal of Critical Care,
14(6), 523-530.]
Letting Go
What should medicine do when it can’t save your life?
by Atul Gawande
The New Yorker, August 2, 2010
http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande#ixzz0vY
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THE LADY & THE REAPER
HTTP://WWW.YOUTUBE.COM/WATCH?V=ZRQ21IIX1IC
Learning objectives
Compare and contrast four paradigms for death
and dying
Relate how personal, professional, and societal
beliefs concerning human life, dying and death
influence the outcomes of health care decision
making for the seriously ill and dying
Describe the recurrent and evolving ethical
issues related to decision making for the
seriously ill and dying
Reflection Questions
1. What does it mean to be finite--to be creature? Are
there ways in which our efforts to control and
master nature work against our innate dignity as
humans?
2. What does good care at the end-of-life “look like?”
How can family and professional care givers respond
to the holistic needs of dying persons? What does it
mean to be a healing presence for the dying and
their families?
pain and symptom management,
clear decision making, preparation for death,
completion, contributing to others, and
affirmation of the whole person]
3. Do persons have the right to choose the time and
manner of their dying? If you grant this right, are
health care professionals and institutions obligated to
meet all the requests patients make, so long as they
are requests for legal interventions. Does the public
(taxpayers) have an obligation to fund the services
you desire?
4. Is reasonable to assume that once we grant the right
to die this may evolve into a duty for some to die so
that the resources they are consuming may be better
allocated? Should government or some other body
be granted the authority to determine who lives and
who dies?
5. In what concrete ways do individual beliefs, values
and faith commitments influence our response to the
above questions?
Death and Dying in the U.S. Four
Paradigms
Death as a natural part of life
The "medicalization" of dying

70% of Americans die in a hospital (39%)
or nursing home (31%)
Hospice/Palliative Care
Death on Demand
The broader context:
trends in how & where we die, past & present
At century’s turn:
 at home: a family,
communal,
religious (nonmedical) event
 of accidents,
infectious disease
By the 1970s:
 of heart disease,
cancer, stroke
 an institutional,
professional, &
technological
process -- in
hospitals, i.e., the
medicalization of
dying
Assumptions Underlying
Approaches to Death & Dying
Life: No longer a "mystery" to be
contemplated but a "problem" to be
solved
Importance of control/mastery
Absolutization of autonomy
State of the Science
How People Die in the U.S.
SUPPORT STUDY-1995
 Half of conscious patients had moderate to
severe pain at least ½ of time before death
 31% of patients did not wish to have CPR …
BUT physicians of more than half were NOT
aware of DNR order preference
 Nearly half of DNR orders were written within
2 days of patient death
 40% of the patients spent at least 10 days in
ICU
SUPPORT STUDY
Poor symptom (e.g., pain) management
Inconsistent with patient preferences &
values
Problematic communication & decision
making
Life-prolonging, intensive treatments
vs. palliative/hospice care
TENO STUDY-2004
One in four people who died did not receive enough
pain medication and sometimes received none at all.
Inadequate pain management was 1.6 times more
likely to be a concern in a nursing home than with
home hospice care.
One in two patients did not receive enough emotional
support. This was 1.3 times more likely to be the
case in an institution.
One in four respondents expressed concern over
physician communication and treatment options.
Twenty-one percent complained that the
dying person was not always treated with
respect. Compared with a home setting this
was 2.6 times higher in a nursing home and 3
times higher in a hospital.
One in three respondents said family
members did not receive enough emotional
support. This was about 1.5 times more
likely to be the case in a nursing home or
hospital than at home.
Finally, national standards/guidelines
National Consensus Project for Quality
Palliative Care (2004). Clinical practice
guidelines for quality palliative care. http:
://www.nationalconsensusproject.org
Promoting Excellence: Seven End-of-Life
Care Domains (RWJ)
National Quality Forum
Systemic Barriers to Appropriate
End-of-Life Care
Lack of training for physicians, nurses, and
other health professionals in techniques of
palliative care, including pain and symptom
management (EPEC, ELNEC)
Antiquated regulations that constrain the
prescribing of narcotic pain medications
Misaligned incentives in health insurance
benefits at the end-of-life
The cultural baggage of a death-denying
culture
Critical milestones, ethical & legal
 Hippocrates on the limits of medicine & the
integrity of professional clinical judgment
 Dame Cicely Saunders founds St. Christopher’s
Hospice, 1967, while Luis Kutner proposes
creation of living wills
 Elizabeth Kubler-Ross’s On Death and Dying:
What the Dying Have to Teach Doctors, Nurses,
Clergy, and Their Own Families, 1969
 First hospice in the U.S., 1974
Critical milestones, ethical & legal
 In re Quinlan, 1976
 AMA policy: withdrawal of life support to permit death =
euthanasia = murder
 right to privacy  health care (Rx) decisions … State’s interest
in preserving life weakens & individual’s right to privacy grows
as medical interventions become more invasive & prognosis for
recovery diminishes ... person’s right to privacy can be asserted
by a guardian when the person is incompetent
 1976 Natural Death Act passed by California
 First state statute recognizing living wills
Critical milestones, ethical & legal
 Cruzan v. Director, Missouri Dept of Health, 1990
 1st Supreme Court decision to recognize right of dying
patients to refuse treatment … states can, but need not
require clear & convincing evidence of patient’s wishes
before support can be withdrawn
 Also in 1990: Jack Kevorkian assists in death of Janet
Adkins
 Patient Self Determination Act, 1991
 Federally funded health care facilities MUST inform patients
of right to execute advance directives
Critical milestones, ethical & legal
 1994: Oregon becomes the first state to pass
referendum legalizing physician assisted
suicide: Washington, the next state, doesn’t
follow until 2009.
 Compassion in Dying v. State of Washington
and Quill v. Vaco, 1997
 Supreme Court’s unanimous finding: no
constitutional right to assisted suicide; morally
significant distinction between
 refusing, withholding & withdrawing treatment AND
 assisted suicide
 left the door open to the states
Decision making in the care of
seriously or terminally ill patients
Established practices



Voluntary, informed refusal of treatment by patients
w/ capacity
Withholding and withdrawing treatment on behalf of
incapacitated patients on basis of substituted
judgment or best interests
Palliative and hospice care
Controversial issues

Voluntarily stopping eating and drinking
Palliative sedation (a.k.a. “terminal sedation”)
Assisted suicide and euthanasia

Patient/surrogate demands for futile Rx  The


troubled concept of futility
Continuum? Logical extension of respect for
autonomy/right to privacy arguments?
Voluntary,
informed
refusal
Withholding
&
Withdrawing
Palliative
& Hospice
Care
Assisted
Suicide
Continuum? Application of the clinician’s duty of
compassion? Principles of “beneficence” or “nonmaleficence”?
or
Are there limits to patient
autonomy/privacy? Is there a
point beyond which clinicians
cannot or should not go?
Euthanasia
Patient or
surrogate
demands for
futile Rx
Fears Associated
with Dying and Death
Fear of Losing Control
Fear of Not Being “Allowed to Die” or of
Being Forced to Die Before One is
Ready
Fear of Intractable Pain and Human
Suffering
Fears Associated
with Dying and Death
Fear of Becoming Increasingly
Dependent
Fear of Loss of Human Dignity
Fear of an Endless Succession of
Meaningless Days: I have nothing to
live for..”
Economic Fears