Futility: Confronting the Questions That Won’t Die
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Transcript Futility: Confronting the Questions That Won’t Die
Withholding and
Withdrawing Treatment
Walter S. Davis, MD
UVA Center for Biomedical Ethics and
Humanities
Associate Professor, Physical Medicine and
Rehabilitation
Withholding Vs. Withdrawing
Active
Vs passive distinction
Conventional wisdom in medicine said
withdrawing is “harder” than
withholding
This has been challenged by modern
medical ethicists - withholding a
treatment that has not been tried is
“morally” harder than withdrawing
one that has not proven beneficial
“Benefits/Burdens Standard”
Benefits
health benefits - treatment of disease or
symptoms
quality-of-life benefits - improved mental
status or physical comfort
Burdens
increased pain, suffering, debilitation
reduced quality of life
What do we know about patients’
intensive care experiences?
There is evidence of significant suffering in ICU
patients with regards to pain, dyspnea, anxiety, sleep
disturbance, depression
A substantial majority of physicians managing ICU
care did not specifically discuss prognosis with
families
54% of family representatives did not understand the
diagnosis and prognosis immediately following a
conference with the treating MD
MD’s do 75% of the talking in family conferences
Challenges Unique to the
ICU Setting
Often
no prior relationship with patient
or family
Traditional separation of intensive
care/palliative care
Patient often not a participant in
discussions
Families unable to participate in hightech care
Advance Directives
The “great hope” of the 80’s and 90’s
Do not significantly affect the aggressiveness or cost
of ICU care
Do not change decision-making in the ICU
Can be difficult to interpret for a given patient
What is “terminal”
What is “extraordinary means”
What is “quality of life”
Still an important piece of the puzzle
Brain Death
Patient
is considered legally dead
Criteria for diagnosis include
combination of neurologic physical
exam and testing (apnea test/EEG)
Cardiopulmonary support sometimes
continued until family or others arrive
Conceptually simple, but can be
difficult in practice
Coma
Relatively
short-term (weeks)
Eyes closed, no evidence of wakefulness
No evidence of communication or
purposeful movement
Often progresses to PVS
Vegetative State (formally
Persistant VS)
First
described in 1972
No evidence of awareness of self or others unable to interact
Intermittent sleep-wake cycles
Some preserved cranial and spinal reflexes
No purposeful behavioral responses
Timing and diagnostic parameters are under
debate
“Locked-In” Syndrome
Patients
are awake, alert, with normal
cognition (to the extent that it can be
tested)
Often caused by pontine infarction or
hemorrhage
Profound quadriplegia, some preserved
eye movements
Can be confused with coma or PVS
Landmark Cases in Futility Ethics
1975
- Karen Ann Quinlan
1983
- Nancy Cruzan
1995
- Hugh Finn
2005
– Terri Schiavo
Quinlan, 1975
21 yo NJ woman with severe anoxic brain injury after
alcohol/drug overdose
Dx: PVS
Required ventilator and artificial feeding/hydration
Father petitioned to stop vent several months later
Opposed by physicians, backed by local court and
State Attorney General
NJ Supreme Court granted request
KQ died 10 years later
New Jersey Supreme Court in
Quinlan, 1975
“the State’s interest (in the preservation
of life) weakens and the individual’s
right of privacy grows as the degree of
bodily invasion increases and the
prognosis dims. Ultimately, there
comes a point at which the individual’s
rights overcome the State’s interest.”
Cruzan, 1983
25 yo with PVS after MVA
Required artificial feeding and hydration but not
ventilator
After 4 years, parents asked that hospital stop tube
feedings - hospital refused
Final decision by U.S. Supreme Court affirmed
competent person’s right to refuse any life-sustaining
treatment, and for incapacitated persons, left to the
States the issue of whether legal standard of
substituted judgment would be satisfied by only
verbal statements
NC died 1990, 13 days after feeding tube removed
Finn, 1995
44 yo television newscaster with PVS after MVA
Wife, sister, and physician wanted feeding tube
removed
Finn’s parents and brothers disagreed
VA Governor James Gilmore intervened to block
removal of tube, citing the State’s interest in
“protecting its most vulnerable citizens”
Decision overruled by local and State Supreme Court
Hugh Finn dies 1998 after removal of tube
Court refuses to force State to pay wife’s legal fees
Schiavo, 2005
1990 - 27yo woman suffers cardiac arrest
secondary to potassium imbalance, with
subsequent anoxic brain injury and PVS
Husband Michael Schiavo is guardian
Terri’s parents, the Schindlers, oppose
removing Terri’s feeding tube
Florida Gov. Jeb Bush intervenes in 2003
Florida House passes “Terri’s Law” that
allows one-time stay in certain cases
Terri Schiavo’s CT scan
Left
image shows
brain CT of a normal
25 year old
Right image shows
Terri Schiavo’s brain
CT at the time of the
debate about her
withdrawal decision
Who opposes withholding and
withdrawing care, and why?
Advocacy
groups
for persons with
disabilities (NDY)
“Right to Life”
groups
Some religious
groups and
organizations
Withdrawing and Withholding
Treatment II – The Role of
Advance Care Planning
Walter S. Davis, MD
Center for Biomedical Ethics
Department of Physical Medicine and Rehabilitation
University of Virginia
Advance Directives
“Living wills”
“Power of Attorney for Healthcare”
“Healthcare proxy”
Appointing a surrogate decision maker is
usually considered the most useful AD
Details and circumstances of clinical
situations are dynamic and often difficult to
predict (sometimes)
Legal requirements vary by state, and are
summarized at caringinfo.org
Advance Care Planning
Getting information on tx options
Deciding on treatment preferences
Getting info on how disease or serious illness
might progress
Discussion w MD about treatment goals,
risks, benefits
Sharing personal values with loved ones
Using AD to put into writing preferences about
life-sustaining treatment specific to the patient
Problems with
AdvanceDirectives
In
a survey of almost 5,000 charts:
66% were durable power of attorney
31% were standard living wills or other
written instructions
Only 3% provided additional instructions
for medical care, and even fewer contained
specific instructions about the use of lifesustaining medical treatment
More problems…
Legal
requirements and restrictions may be
counterproductive
Obtaining witness signatures and notarizing may
be difficult to make happen in a Dr.’s office
State hierarchy laws can be inflexible and may not
apply in certain situations
The emphasis should be on the discussion about
end of life care, and not on signing the legal
document
Issues to be considered in
end-of-life discussions
Overall
attitude towards life
Attitudes about independence and control,
and the loss of them
Religious or spiritual beliefs and moral
convictions
Views on health, illness, death and dying
Feelings toward doctors, other caregivers,
and the “culture) of modern medical care
Opportunities for discussion
about end-of-life issues
life events – marriage, birth, death of
a loved one, retirement, birthdays, etc.
While drawing up a will or other estate/financial
planning
Before and after annual physicals, particularly
when the patient has one or more chronic
conditions
Significant
The role of the physician
Explaining
and informing on the
illness/disease process – to pt and
proxy
Discussion of pain management options
Learning the patient’s views on quality
of life, role of spirituality/religion
Working out the details of how the plans
will be carried out
Education and discussion on hospice
and palliative care
Ethics consult case – MR C
53
yo with ESRD, schizophrenia,
admitted with shortness of breath
Dx’d renal failure, fluid overload,
recommend dialysis
Pt refuses dialysis, but wants to be a
“full code”
Pt’s family wants him to receive dialysis
Ethics consult case – Mr C
Pt
found to have decisional capacity by
psychiatry consult team, schizophrenia
not an issue in this decision
Renal Clinic note found indicating
patient did not want dialysis in any
situation, but did want to be full code
otherwise
Further discussions with patient
revealed he did not want to die “choking
for air,” but would be DNR if sxs treated
Ethics Consult case - CG
69
yo with ALS (amyotrophic lateral sclerosis)
AD appoints daughter as POA for healthcare
and specifies durable DNR
CG plans to die at home with hospice care,
but is in a rehab center for a one week stay to
get mobility equipment and training for family
Falls from his wheelchair, admitted to ED
short of breath, dx’d with pneumothorax