Dying Well: Medical Ethics at the End of Life

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: • 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, 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 • 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 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from withdrawal of life-sustaining therapy • In 74% of all ICU deaths, at least some life-sustaining therapy is withdrawn • SUPPORT study showed inadequacies of care to critically-ill and dying patients, including inadequate palliative care, poor incorporation of prognosis in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 • 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 • 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 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 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 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 • 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, 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 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: • 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 • 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 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 • 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

Refusal of Hydration and Nutrition • 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

Palliative Care: WHO Definition • The active total care of patients whose disease is not 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 • 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 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 • 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 • 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 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: • Refusal of life-sustaining therapy • Physician-assisted suicide • Euthanasia • Refusal of hydration and nutrition • Terminal sedation • Palliative care

Dying Well: Medical Ethics at the End of Life