Ethical Issues

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 ƒ

Labwork 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 ƒ ƒ ƒ

Prolongation of life Maintenance of lean body mass Reduction of risk of skin breakdown or infection 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 ► Small

study 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