Ethical Issues at the

End of Life
Leigh Fredholm MD
September 27, 2008
 Objectives
► Review decision making process
► Review futility process
► Examine the ethics of artificial nutrition and
hydration
► Examine the ethics of CPR in the medically
fragile patient
► Review the indications/ethical implications
for palliative sedation
 Ethical Decision Making:
Patient with Capacity
► Patients have the right to make their own
informed decisions
► Patients have the right to refuse life
sustaining (death prolonging?) treatments
► Patients have the right to make decisions
that appear unreasonable to others
► Capacity is determined by the physician
 Surrogate Decisionmakers
► In the event that a patient is unable to
voice his wishes, health care providers must
consult the legally designated surrogate for
medical decisions
► In the absence of a Texas Medical Power of
Attorney document, the legally designated
hierarchy must be followed
 Ethical Decision Making:Patient
Lacking Capacity and Surrogate
► Self determination (prior expressed wishes)
ƒ Personal directive
ƒ Wishes expressed to family or close friends
► Substituted judgement, based on patients
values and beliefs
► Patients best interests (Ethics Committee)
 Medical Power of Attorney
► Designates an individual (and an alternate)
who is empowered to make medical
decisions for the patient
► Does not activate unless/until the patient
loses decision making capacity (must be so
stated by the physician in the medical
record)
► Must use the Texas form (as opposed to
“living will” documents)
 MPOA pitfalls
► Surrogate is not available
► Surrogate is unwilling
► Surrogate has no knowledge of patients
wishes
► Surrogate’s decisions are contrary to
physician knowledge of patients wishes
► Conflict among family or friends
► Surrogate demands nonbeneficial care
 Legal Hierarchy for Family
► Spouse
► Adult Child
► Parent
► Sibling
► Distant relative
 Futility Process
► Texas law provides a process for hospitals and
physicians to cease nonbeneficial care
► Case must be reviewed by Ethics Committee
► If Ethics Committee agrees that care is
nonbeneficial, patient/family can be given ten days
to find another facility willing to provide requested
care
► If no alternate facility can be found, hospital is not
obligated to continue interventions after ten days
 Process of Natural Death
► Anecdotal evidence that natural dying does
not include ANH, and that ANH causes pain
and other symptoms
► Emerging consensus suggests it is
reasonably comfortable due to body’s
endogenous analgesic mechanisms
► Losing the ability to swallow is part of the
‘naturalness’ of dying
 ANH in cancer
► Clear and convincing data that TPN in
advanced cancer shortens life expectancy
► Additional burdens
ƒ Labwork
ƒ Equipment
 Burdens of Hydration
in the Dying Patient
► Increased respiratory secretions and
distress
► Increased skin breakdown
► Increased urine output
► Increased level of consciousness
► Lowered threshhold for pain and other
unpleasant sensations
 PEG Tubes in Progressive Dementia

► Not controversial for support through an

acute event (trauma, CVA, etc)
► Not as effective as widely believed for:
ƒ Prolongation of life
ƒ Maintenance of lean body mass
ƒ Reduction of risk of skin breakdown or infection
ƒ Prevention of aspiration pneumonia
 PEG tubes in progressive dementia
► Further concerns
ƒ Increased use of restraints
ƒ Decreased quality of life
ƒ Side effects: tube migration, cramping, vomiting,
diarrhea, aspiration
► Older adults overwhelmingly oppose it
ƒ ¾ of participants (cognitively intact, >65) in one study
indicated they did not want CPR, ANH with mild
dementia; 95% with severe dementia
► Tension between beneficence and autonomy
largely dissipated
 PEG: Informed Consent
► Capacity
► Voluntariness
► Disclosure
ƒ Misperceptions common
ƒ Study of PEG insertion decision making
► Information provided to decision makers deemed inadequate in
51% and lacking entirely in 22%
► 24% of patients and 61% of surrogates said they were not
asked their opinions about procedure
► In 1/3 of cases, PEG placement was a requirement for NF
admission
 ANH: Medical Treatment or
Basic Human Right?
► Depends on who you ask!
► US judicial precedent vs. The Pope
► In the Catholic health system, refer to
Ethical and Religious Directives for
healthcare, which endorse withholding ANH
in a patient for whom burden outweighs
benefit (based on the patients belief
system, not the caregivers)
 ANH: Medical Treatment or
Basic Human Right?
► Where does ANH come from?
► From an ethical standpoint, ANH is subject
to the same principles as other forms of
intervention
 Counseling Families
► Emotionally laden topic
► Food and water represent basic care and
love
► Need to overcome the issue of causation of
death
► Caregivers often need help in finding other
ways to demonstrate their love and care
 Withholding vs. Withdrawing
► Consensus among ethicists: no moral distinction
► Often there is greater evidence for withdrawal
after a trial period (time limited trial)
► Medical team ambivalence may color
decisionmaking
► Often difficult to distinguish between stopping
treatment and withholding future treatment
► Perception of patient and family: Do nothing?
 CPR
► Designed for a specific clinical situation, but
applied almost indiscriminately
► Rarely effective for the medically frail patient, and
if it is, at great cost to the patient
ƒ Vanishingly small survival to discharge rates
ƒ Many left with permanent neurological impairment
► Smallstudy of inhospital arrest survivors: majority
would not want CPR if they could do it over again
 Pitfalls of Discussing Resuscitation

► Not looking at the wider picture of patient

illness
► Time
► “If your heart stops, do you want us to
restart it?”
► “Do you want us to do everything?”
 CPR Discussion
► What is the patient/family understanding of
the illness (current clinical status, prognosis,
expected trajectory)?
► What makes the patients life meaningful?
► Is there a reasonable chance that
resuscitation would restore patient to a
quality of life that he/she would find
acceptable?
Discussion of Treatment Preferences

► Optimally done at an office visit

► Not for sick patients only
► Use local examples as needed
► Most patients can’t tell you what they want,
but they can tell you what they don’t want
► Consider using a values survey
 Palliative Sedation
► Performed to relieve suffering in a patient
whose symptoms cannot be managed
despite expert palliative care (rare)
► Principle of Double Intent
► Ethics Committee should be involved in the
hospital setting
► Not common in community hospitals