source Book in Bioethics EDITED BY Albert R. Jonsen Robert M. Veatch LeRoy Walters 144.9 568 GEORGETOWN UNIVERSITY PRESS / WASHINGTON, D.C.PONTIFICIA UNIV ERSIDAD JAVERIANA COMPRA |_| CANIE FECHA NG Oer- 2003 s_ PROCEDENCIA: SOLICITADO POR Boer AaraloGncee Caw rents 204 | SB) agsissq _____| | povas as Georgetown University Press, Washington, D.C. (© 1998 by Georgetown University Press. All rights reserved. Printed in the United States of America 1098765432 ‘THIS VOLUME IS PRINTED ON ACID-FREE OFFSET BOOK PAPER Library of Congress Cataloging-in-Publication Data Source book in bioethics : a documentary history / edited by Albert R. Jonsen, Robert M. Veatch, LeRoy Walters. Pp. cm. Includes bibliographical references and index. 1, Medical ethics—History—Sources. 1. Jonsen, Albert R. IL Veatch, Robert M. II. Walters, LeRoy. IV. Title: Sourcebook in bioethics. R724,8599 1998 174'.2'09—DC21 97-41821 ISBN 0-87840-683-2 (cloth : alk. paper}THE ETHICS OF DEATH AND DYING: CHANGING ATTITUDES TOWARD DEATH AND MEDICINE Robert M. Veatch INE OF THE DOMINANT ISSUES in public policy debate during the last part of the twentieth century has been the controversies in bioethics over the care of the dying. By the middle of the century, the professional physi- cian's sense of an imperative to preserve life whenever possible had reached its zenith. New-found technolo- gies—antibiotics, respirators, dialysis machines, and car- diopulmonary resuscitation (CPR}—gave physicians their first real chance to do something to postpone death in a significant way. It became increasingly clear, however, that sometimes this postponement comes with a great price. Cancer patients had their lives prolonged to face a bedridden horrible existence in intractable pain. Heart at tack victims, stroke patients, and those suffering other neurological accidents were snatched from the jaws of death only to live lives of severe debilitation sometimes to the point of total, irreversible unconsciousness. In extreme cases, such patients literally had dead brains. The time had ‘come to ask whether such preservation of biological exist- ence was always a morally wise choice. Death in History ‘Many living in the twentieth century are surprised to dis- cover that the monomaniacal drive to preserve life is a relatively new phenomenon in the history of medicine. Historian Darrel Amundsen called it “{a] Duty without Classical Roots.” Death was a great concern for the Greeks, but much of their attention was devoted to what happened after death.? The Greeks were quite open to end- ing life when it seemed appropriate based on their under- standing of the meaning of life. Plato described decisions to terminate life including the purposeful killing of defective infants. The Hippocratic cult with its school of medicine was somewhat different from other medical traditions in Greek medicine, In the Hippocratic Oath the physician pledges, “Iwill neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect."* The exact meaning of this prohibition is debated. Some see it as merely a condemnation of conspiracy to help a patient's enemies poison a patient, but most see it as a significant censuring of helping patients actively end their lives.‘ It is not, however, a broad mandate to Hippocratic physicians to use their skills, such as they were, to preserve human life whenever possible, In fact, elsewhere in the Hippo- cratic writings, the physician is advised to avoid taking a terminally ill person as a patient. Doing so was bad for the physician's reputation and apparently not expected by the morality of the day. Nowhere in the Hippocratic literature is there any notion that the physician must do everything possible to preserve life, The Judeo-Christian tradition is the other major source of the ethics of Western culture. Judaism has long held to 113114 The Ethics of Death and Dying the doctrine that all human life is sacred, a precious divine creation. Many interpreters of the Talmudic tradition, es- pecially those identified with the Orthodox readings of the tradition, hold that all human life is to be preserved, at cast until the patient is goses (moribund). Christianity has also held that life is sacred, but it has not manifested an ethic requiring all life to be preserved even when the patient is dying and prolonging dying merely burdens the patient. The Roman Catholic tradi- tion, while condemning all euthanasia, has, since the days of Thomas Aquinas, recognized the legitimacy of forgoing extraordinary means of preserving life—and has defined “extraordinary” as all means that are "gravely burdensome to oneself or another.” That view has consistently been reflected in U.S. Catholic thought even during the time that secular physicians were compulsively striving for ‘mote moments of heart beat and blood flow. The Twentieth Century to 1970 Certainly, the duty to preserve life can be dated no earlier than the beginning of the modem period. Francis Bacon describes this duty as “new, and deficient; and the most noble of all." More realistically, it became the dominant duty of physicians only in the twentieth century, when medicine really could have an effect on the dying trajec- tory. ‘This sense among physicians that it was their duty to preserve life was reinforced during the Nazi era in response to the physicians of national socialism who took the lead- ership in the German euthanasia movement. Still, no ‘medical professional organization has any language in its code of ethics that would commit its members to the duty to preserve life whenever possible. And no public organiza- tion regulating the medical profession has ever expected its licensees to do whatever is possible to preserve life. Public «and professional organizations of the middle of the century differentiated active interventions to kill for mercy from the clinician's duty to do everything that will predictably extend life. In the 1950s and 1960s, new technologies made the pro- longation of life a more realistic possibility. First the iron Tung, an enormous, engulfing machine that surrounded the entire body except the head, made mechanical ventilation possible in patients without spontaneous control of their Jungs. Then more compact ventilators, CPR, dialysis ma- chines, cardiac surgery, and transplants gave clinicians a whole new range of options for preserving life. Often these devices did not succeed, but sometimes they did. Some- times when they succeeded in preserving life, they did so at an enormous price of pain, suffering, and degradation. Al- though kidney transplants began on a limited basis in 1954, the first human heart transplant in December 1967 marked a watershed that captured the public's imagina- tion. People began to question for the first time whether these interventions were justified. People questioned whether they were “playing God.” When these new high- tech heroics turned out to produce terrible side effects, the stage was set for @ movement that would challenge the authority of physicians to make decisions about life preser- vation, : ‘The challenge to medical authority was bolstered by de- velopments in the broader social culture of the 1960s, The antiwar and civil rights movements led people, particularly in the United States, to question the authority of elites. The rights movements—civil rights, women’s rights, and stu- dents’ rights—thrived on this questioning of authority. The traditional medical ethic was soon caught up in this trend, it saw its authority dismissed as paternalism in what was dubbed the patients’ rights movement. The stage was set fora radical reshaping of the public policy on the care of the dying The Death and Dying Era Soon the American denial of death’ was replaced with ‘what was to become an obsession with death. The previous denial of death was no longer noble but a “pornography."* ‘Thousands of college and health professional schools of- fered courses dealing with death. Led by psychiatrist Elisa- beth Kabler-Ross, author of the immensely popular Death and Dying, a social movement on death and dying began that changed forever our view of death and the way we care for the dying. ‘The movement differentiated two questions: the defini- tion of death and the ethics of stopping treatment on the dying, The definition debate was clearly stimulated by the development of organ transplants. The first heart transplant occurred in December 1967, and the interdis- ciplinary Harvard Ad Hoc Committee on the Definition of Death published its reforming report proposing a brain- based definition in May 1968.!° The report in effect addressed both issues: the availability of organs for trans plant and the controversy over whether it was acceptable to stop medical treatment on certain dying patients by the bold move of claiming that those with total, irre- versible loss of brain function were actually already dead. Since it is widely held that organs can only be procured from the deceased and no one believes that we are morally required to continue “life support” on someone who is dead, this redefinition solved both problems at once, at least for those who had truly lost all brain function irre- versibly. The first two states to pass a brain-based definition of death were Kansas (1970) and Maryland (1971). For a time it was believed that eventually all jurisdictions would fol- low suit, but we encountered an unexpected delay. The Philosophical problems were more complex than people had realized, and the question at stake did not lend itself to resolution by scientific data. The issue was this: underwhat conditions should society treat people as dead—as no longer members of the human community? The social pronouncement of death triggers important societal responses: it creates widowhood, triggers the pay- ‘ment of life insurance, produces murder charges in the case of assaults, and allows for the procurement of organs, among other social “death” practices. Different social, philosophical, and religious views about when these activi- ties should occur continue to exist. One group continues to hold that death should not be pronounced until the heart and lung systems stop functioning. Another group is press- ing for an even more radical redefinition in which individu- als could be called dead when “higher-brain” functions are lost irreversibly even if some other brain functions con: tinued. ‘These issues were all reviewed by the President’s Com- mission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, a national interdisci- plinary body established in 1980. Its first report, published in 1981, took on the definition of death debate. A major portion of that report is reproduced here. As early as 1970, it was realized that even if we com- pletely solved the problem of defining death, we would still have to face, the second, more significant issue of when to stop treatment on the still-living. Some terminally and critically ill patients with cancer, stroke, and neurological impairment are clearly not dead by anyone's definition. ‘Some groups, such as Orthodox Jews, hold that everything possible should be done to preserve life in these patients, but most groups, including Roman Catholic theologians and members of the American Medical Association, deny that it is morally necessary to preserve life in all cases by all means. Court cases focusing on the right to refuse life-prolong- ing medical treatments go back well before this time. They often dealt with the convictions of Jehovah's Witnesses or other religious objections to medical life-support. But by about 1970 laypeople’s questioning of efforts to preserve life had become a social phenomenon. Court actions in- creased leading to a 1975 case that captured the public attention. Karen Ann Quinlan, a twenty-one-year-old New Jersey ‘woman spending an evening with friends ata local bar, ost consciousness from reasons that were never definitively established. Rushed to a hospital, she was resuscitated— her heartbeat was restored and she was placed on a me- chanical respirator, but she did not regain consciousness Months later she became the focus of a court action. Her parents sought to have her father named her guardian so that he could withdraw consent for the ventilator that was believed necessary to maintain her breathing. Dr. Robert Morse, her physician, believing that he was obligated to maintain her life, was unwilling to stop the ventilator without a court order. A lower court first sided with the physician, but the Supreme Court in New Jersey, in an opinion reproduced in this chapter, reversed the Changing Attitudes Toward Death and Medicine _ 115 lower court. The case is a watershed: it established public recognition of the right of persons to refuse Life-prolonging treatment. Although the role of families and other surro- gate decisionmakers remains controversial to this day, cases focused on routine refusals of treatment based on desires that the patient expressed while competent have ceased to be an issue. While the New Jersey courts were struggling over the Quinlan case, California legislators were debating a statu- tory approach to a similar problem. California assembly- man Barry Keene introduced a bill, called the California ‘Natural Death Act, that gives certain people the authority to write an advance directive (sometimes referred to as a ‘"iving will”| whereby they could refuse medical treat- ‘ment rather than be maintained in a terminal condition. Several states had been considering similar laws since the early 1970s, but the California law (reprinted in this sec- tion) was the first to get through the entire legislative process. It passed in 1976, The result has been a social consensus, at least within the United States, that competent patients have the right to refuse medical treatment provided that the treatment is offered for the patient's own good.'! The only remaining issues were those involving decisions for incompetent pa. tients whose wishes were not known, and those involving special treatments, such as nutrition and hydration, that were considered so “basic” that they could not be refused. Limits to the Consensus One of the ambiguities in the Quinlan opinion is exactly why Mr. Quinlan was given the authority to decide on his daughter's behalf whether to withdraw the ventilator. The court claimed that it could not know Karen’s wishes, but it never made clear whether it thought Mr. Quinlan could know them. It may be that the court believed that Mr. Quinlan was in 2 position to know his daughter so well that he could deduce what she would have chosen based on her own values. That interpretation would have involved a standard now referred to as substituted judgment. On the other hand, some patient's wishes can never be known even by close family members. Infants and the severely retarded presumably have never formulated their own wishes and still someone must decide. It could be that ‘Mr. Quinlan was appointed to make a choice based on his estimate of what would be best for Karen. Ifo, his decision would have involved a best interest standard. It can also be argued that someone has to make the choice. Consider the case, reprinted here, of Joseph Saikewicz, a severely retarded sixty-seven-year-old man suffering from leukemia for which chemotherapy and blood transfusions were considered. The issue in his case ‘was whether the trauma of the treatment, which Mr. Saikewicz could not understand because of his mental con- dition, would make the treatment too burdensome. The116 The Ethics of Death and Dying highest court in Massachusetts confirmed that the treat- ment should not be provided. The Saikewicz case involved a patient who had no fam- ily available to act as surrogate. Two cases involving dis- pute over forgoing nutrition and hydration are presented in this section that involve formerly competent adult pa- tients and family who offer to help interpret the patient’s ‘wishes. The issue raised is whether some treatments are special, or so basic, that they must be provided to all pa- tients regardless of their wishes and regardless of whether the treatments offer benefits that exceed the benefits of refusal. The case of Claire Conroy involved a woman who had a history of resistance to physicians. She suffered from organic brain syndrome that left her incompetent to decide whether to continue feeding via a nasogastric tube. The New Jersey Supreme Court, in accepting the decision of her nephew (her next of kin} to refuse the treatment on her behalf, articulated three standards for cases in which refus- als may be accepted. These standards are described in the record of the case, which is included in this section. ‘The second case confronting these issues concerned Nancy Cruzan, a Missouri woman who was left persist- ently vegetative as a result of an automobile accident, She was being fed through a gastrostomy, which her parents insisted she would have refused. After several preliminary state rulings, the case was heard by the United States Su- preme Court, the first case of its kind to reach this level, In its ruling, the Supreme Court acknowledged that a state may establish standards, including the requirement of clear and convincing evidence of a patient's wishes. At the same time, the opinion stated a presumption of the pa- tient’s constitutional right to refuse any life-prolonging treatment, regardless of its nature. ‘This ruling appears to provide the basis for exercising a right of refusal for competent and formerly competent pa- tients of any treatment including nutrition and hydration, it leaves open the question of whether parents and other surrogates for never-competent patients have the authority to refuse life-prolonging treatment as a matter of constitu tional law. Many states have since acknowledged that right, but not all have. In particular, Missouri and New York still require that refusal decisions be based on the patient's own wishes. Certainly, more debate is needed to establish whether family members have such authority. One set of federal regulations is important both in un- derstanding the role of family members as surrogates and in deciding the limits on forgoing nutrition and hydration. In response to reports of cases involving parents’ attempt- ‘ng to refuse life-supporting interventions for their infant children, the federal government has intervened to estab- lish protections. After an initial effort grounded in the federal prohibition against discrimination against the handicapped,”? a law was passed mandating protections grounded in the notion of child neglect and abuse. ‘The regulations growing out of this law ban payments {for child welfare protection to states that do not set up ‘mechanisms to protect infants from decisions of surrogates to forgo certain life-prolonging treatments.'® The regula- tions, often referred to as the “Baby Doe” regulations, es- tablish three conditions under which surrogates may refuse treatment of infants: when the infant is terminally ill, when i is irreversibly comatose, or whef the treatment ‘would be virtually futile for preserving life and would be inhumane. Even in these cases, however, “appropriate nu- trition and hydration” must be provided to the infants. ‘Thus, the federal regulations for infants appear to differ from those governing treatment refusal for adults. The 1985 Federal Regulations (or Baby Doe regulations) are the next to the last document presented in this section. ‘The role of the family as surrogate decisionmaker has been addressed in federal courts in cases in which the issue ‘was the right of the parent to choose in favor of life-pro- longing treatment for a child who was believed by the physicians involved not to be benefiting from the treat- ment. These cases, often misleadingly called futile care ceases, involve ventilator support for patients whose lives predictably could be extended with a ventilator, but in ‘ways the clinician considers pointless. In the case of Baby K, a baby born with anencephaly, it ‘was agreed that the baby could never be made consciqus, but the mother nevertheless felt there was value in the baby's life. The federal court, supported by a court of ap- peals, agreed that the baby must be treated at the request of the mother, at least in this case in which an insurer was willing to pay the bills. This shift in the public debate —from the right to refuse treatment to the right of access to treatment signals the beginning of a new era in the medical ethical debate over the care of the dying, NOTES 1. Darrel W. Amundsen, “The Physician's Obligation to Pro- long Life: A Medical Duty without Classical Roots,” Hastings Center Report 8 [August 1978): 23-30. 2. Jacques Choron, Death and Western Thought (New York: Collier Books, 1963), Arnold Toynbee, ed., Man's Concern With Death (St. Louis: McGraw-Hill, 1968} 3, Ludwig Edelstein, “The Hippocratic Oath: Text, Transla- tion and Interpretation,” in Owsei Temkin and C. Lilian ‘Temkin, editors, Ancient Medicine: Selected Papers of Ludwig Edelstein (Baltimore, Maryland: The Johns Hop- kins Press, 1967), pp. 3-64 (page 6) 4, Ibid, p.9-14. 5, Pope Pius XIl, “The Prolongation of Life: An Address of Pope Pius XII to an International Congress of Anesthesi- ologists," The Pope Speaks 4 (Spring, 1958}: 393-398. 6. The Philosophical Works of Francis Bacon, ed. J. M. Robertson (Ellis and Spedding translation} 1905. Re- printed, Freeport, N.Y.: Books for Libraries Press, 1970,Changing Attitudes Toward Death and Medicine pp. 485, 489. Cited in Amundsen, “The Physician's Ob- ligation,” p. 27. 7. Emest Becker, The Denial of Death (New Yor Press, 1973} 8. Geoffrey Gorer, Death, Grief, and Mourning (New York: Doubleday, 1965) 9. Elizabeth K. Kabler-Ross, On Death and Dying (New York: Macmillan, 1969). 10. Harvard Medical School. “A Definition of Irreversible Coma. Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.” Journal of the American Medical Association 205 (1968): 337-340. 11. Robert M, Veatch, Death, Dying, and the Biological Revo- Tution, Revised Edition (New Haven, Connecticut: Yale University Press, 1989; Alan Meisel, “The Legal Consen- ‘The Free 12, 13, Me 117 sus about Forgoing Life-Sustaining Treatment: Its Status and Its Prospects,” Kennedy Institute of Ethics Journal 2 (1992): 309-45. ““Nondiscrimination on the Basis of Handicap, Procedures and Guidelines Relating to Health Care for Handicapped Infants, Final Rule.” 49 Federal Register No. 8, 1622, Janu- ary 12, 1984 (Part 84, USS. Department of Health and Human Services, "Child ‘Abuse and Neglect Prevention and Treatment Program: Final Rule: 45 CFR 1340." Federal Register: Rules and Regulations 50(No. 72, April 15, 1985):14878-14892, ‘In re Jane Doe, a minor, Civil Action File No. D-93064, Superior Court of Fulton County, State of Georgia, Octo- ber 1991; In the Matter of Baby "K”, United States Court of ‘Appeals for the Fourth Circuit, February 10, 1994.