Transcript Clarifying End-of-Life Treatment Issues in the ALS Patient

Dying Well:
Medical Ethics at the End of Life
James L. Bernat, M.D.
Professor of Medicine (Neurology)
Dartmouth Medical School
Overview
• Dying in America
• Life-ending acts:
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– Refusal of life-sustaining therapy
– Physician-assisted suicide
– Euthanasia
– Refusal of hydration and nutrition
– Terminal sedation
Palliative care
Dying in America
• In 2000, 2.5 million Americans died (about 1%)
• Most died from chronic illnesses: heart disease,
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cancer, stroke, emphysema, and dementia
Mean life expectancy up 50% in past century, now
79 years for women, 73 years for men
Racial differences: African-American women 74
years and African-American men 65 years
Aging of Americans: by 2030, 20% over age 65
Dying in America
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54% die in hospitals
19% die in nursing homes
25% die at home, many with hospice assistance
Regional variations:
– Oregon: 31% die in hospitals
– New York: 65% die in hospitals
SUPPORT study showed that the principal factor
was the number of hospital beds in a region
Dying in American Hospitals
• 30% of Medicare total expenditure is spent on caring
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for patients in the last six months of life
40-65% of ICU deaths result directly from
withdrawal of life-sustaining therapy
In 74% of all ICU deaths, at least some lifesustaining therapy is withdrawn
SUPPORT study showed inadequacies of care to
critically-ill and dying patients, including inadequate
palliative care, poor incorporation of prognosis in
decision making, and poor use of advance directives
American Attitudes about Dying
• Technologic and interventionalist imperative
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– Greater utilization of high tech tests & treatments
– American heroic-positivist philosophy
Culture is “death denying”
– Treats death as an accident and contingent event
– Kubler-Ross summarized reasons for denial
Death and dying should be “medicalized”
– Death and dying best handled by professionals
and institutions
Life-Ending Acts in the Dying Patient
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Refusal of life-sustaining therapy
Physician-assisted suicide
Euthanasia
Refusal of hydration and nutrition
Terminal sedation in palliative care
Refusal of Life-Sustaining Therapy
• Based on ethical and legal concepts of respect for
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patient dignity, autonomy, and self-determination
Doctrine of informed consent and refusal
– Competent patients and authorized surrogates of
incompetent patients have the right to refuse all
therapies including life-sustaining therapies
– Values and preferences of patients may differ
from those of their physicians
– Patient-centered medicine: valid consent and
refusal take precedence
Refusal of Life-Sustaining Therapy
• No important ethical or legal distinction between
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withholding and withdrawing therapies
Artificial hydration and nutrition count as therapies
that patients/surrogates may refuse
Constitutional right to refuse LST in the liberty
rights clause of the 14th Amendment (Cruzan)
Dying after refusing LST is not “passive euthanasia”
or physician-assisted suicide
Physicians’ Duties in Refusal of LST
• Encourage living and not suggest the preferability of
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stopping life-sustaining therapy
Provide accurate prognosis and avoid fallacy of the
self-fulfilling prophecy
Practice principles of palliative medicine and strive
to increase the quality of patient’s remaining life
Promise patients they will not suffer if they refuse
LST; assure continuity and avoid abandonment
Maximize dying patients’ psychological and
communicative abilities
Life-Ending Acts
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Refusal of life-sustaining therapy
Physician-assisted suicide
Euthanasia
Refusal of hydration and nutrition
Terminal sedation in palliative care
Physician-Assisted Suicide
• Definition: Upon request from a competent patient,
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the physician provides the medical means for the
patient to commit suicide – usually a prescription for
a lethal dose of medications with instructions
Physician is necessary but not sufficient for death
Illegal in most jurisdictions but practiced covertly
Legalized in Oregon in 1997 by public referendum
Legal in the Netherlands
Voluntary Active Euthanasia
• Definition: Upon request by a competent patient, the
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physician “mercifully” kills the patient – usually by
an injection of a lethal dose of medication
Physician’s act is necessary and sufficient for death
Illegal in every jurisdiction in the USA but
moderated by practice of prosecutorial discretion and
grand jury decisions to refuse indictment
Covert incidence in USA unclear but some data
Basis for conviction and incarceration of Jack
Kevorkian for publicized euthanasia of ALS patient
Assisted Suicide/Euthanasia: Morality
• Pro arguments:
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– Self-determination; right to choose time of death
– Nonmaleficence; physicians have a duty to help
relieve suffering that encompasses PAS/VAE
Con arguments:
– Dangerously alters the patient-physician
relationship by making physicians killers
– Wrong for physicians to have this awesome
power; creates opportunities for abuse
Assisted Suicide/Euthanasia: Policy
• Fears of legalization:
– Creates the “duty to die” that raises question of
voluntariness
– Victimizes lower socioeconomic classes when
other options not widely available
– Breaks taboo against physician killing and allows
involuntary euthanasia (eg. Netherlands)
– Lessens need to provide palliative care
Assisted Suicide/Euthanasia: Legality
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Distinction between “refusals” and “requests”
2nd and 9th Federal Circuit Court decisions of 1996
Overruled by U.S. Supreme Court decisions of 1997
State laws:
– Felony in most states
– Lawful in Oregon since 1997
Legalization of assisted suicide will inevitably lead
to legalization of voluntary euthanasia
Oregon Death With Dignity Act of 1997
• Permits lethal prescriptions to be written if: patient
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competent, written and two verbal requests, two
physicians concur terminal illness, alternatives
described, reported to Oregon Health Division
Less than 100 cases in 4 years – studied carefully
Most feared outcomes have not occurred
Small sample size and rate of < 1/1,000 deaths
categorically limits generalizability of findings
Not the solution to the problems of the dying patient
Assisted Suicide: Response to Request
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Assess for and treat depression
Assess decision making capacity
Discuss advance care planning and palliative care
Identify root causes: physical, personal, and social
Educate on physician risks and responsibilities
Involve consultants and hospital ethics committee
Review care plan, remove unwanted interventions
Explain why declining PAS and offer alternatives
Life-Ending Acts
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Refusal of life-sustaining therapy
Physician-assisted suicide
Euthanasia
Refusal of hydration and nutrition
Terminal sedation in palliative care
Refusal of Hydration and Nutrition
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Refuse oral or artificial hydration and nutrition
Requires no change in physician’s duty or law
Physiology: loss of hunger and thirst while dying
Surveys of hospice physicians and nurses show no
suffering when given proper mouth care
Coma within 10 days and death within a few more
days; requires proper palliative care
Practiced in many societies for centuries
Life-Ending Acts
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Refusal of life-sustaining therapy
Physician-assisted suicide
Euthanasia
Refusal of hydration and nutrition
Terminal sedation in palliative care
Palliative Care: WHO Definition
• The active total care of patients whose disease is not
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responsive to curative treatment. Control of pain
and other symptoms, and of psychological, social,
and spiritual problems is paramount.
The goal of palliative care is the achievement of the
best possible quality of life for patients and their
families. Many aspects of palliative care are also
applicable earlier in the course of the illness in
conjunction with [attempted curative] treatment.
Palliative Care
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Affirms life but regards death as a normal process
Neither hastens nor postpones death
Provides relief from pain and other suffering
Integrates psychological and spiritual aspects of care
Maintains patient-family unit
Offers support system to family to help patients and
families cope with terminal illness and bereavement
Incorporates principles of hospice care
Palliative Care
• Knowledge of pharmacology to provide the right
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medications in the right dosage using the right
dosage interval, and by the right route of admin.
Use of a specialized team incorporating PT, OT,
pharmacy, nursing, social service, anesthesia
Specific orders; not “comfort measures only”
Engaging outpatient hospice
Planning for the moment of death to prevent
unwanted resuscitations and hospitalizations
Barriers to Palliative Care
• Physicians’ knowledge deficits, myths
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– Ignorance of pain and other symptom control
– Fear of killing patients by adequate pain control
Societal barriers
– Laws unnecessarily restricting medications
– Poor reimbursements for palliative care
Inappropriate attitudes
– Nursing concern, not a physician’s role
Overcoming Barriers to Palliative Care
• Physicians’ knowledge deficits, myths
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– New textbooks, journals, courses, curricula
– AMA EPEC program
Societal barriers
– Reform laws unnecessarily restricting medications
– Improve reimbursements for palliative care
Inappropriate attitudes
– Improve mentoring of young physicians
– Change conceptualization of professional role
Terminal Sedation
• Better called “sedation in the imminently dying”
• Barbiturate or benzodiazepine sedation necessary to
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maintain comfort
Satisfies “rule of double effect” when it is a
necessary part of palliative care largely because
death is foreseen but unintended
Legally permitted by language in the Cruzan ruling
Has been abused by some as an excuse for
euthanasia which is not justified ethically
Principle of Double Effect
• Principle of double effect permits adequate sedation
even at the risk of accelerating death because:
– Act itself is not immoral
– Act is undertaken with intent of the good effect
– Bad effect is foreseeable but not intended
– Act does not achieve good effect via the bad one
– Act is undertaken only for a serious cause
Summary
• Dying in America
• Life-ending acts:
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– Refusal of life-sustaining therapy
– Physician-assisted suicide
– Euthanasia
– Refusal of hydration and nutrition
– Terminal sedation
Palliative care