Bioethics refers to the systematic study of the moral aspects of health care and the life sciences. Physicians have always made decisions with significant moral components in the context of medical practice guided by the Hippocratic obligation to help patients without causing harm. This traditional medical morality nonetheless became insufficient to address the ethical issues that arose as medical practice changed over the course of the twentieth century to include more care by medical specialists, extensive use of complex medical technologies, and a trend toward dying in the hospital rather than at home. A series of controversies involving research with human subjects and the allocation of scarce new technologies (e.g., kidney dialysis and organ transplantation) made clear that the wisdom of physicians and researchers was inadequate to ensure the appropriate treatment of patients and research subjects. In universities and hospitals, this widespread patients' rights movement galvanized the attention of a growing contingent of theologians, philosophers, and lawyers who came to identify themselves as medical ethicists or bioethicists.
A central task of bioethics has been the articulation of approaches to guide the moral aspects of medical decision making. Here, a core commitment has been to the empowerment of patients' meaningful participation in their own health care, which is typified by the now common practice of obtaining informed consent (the process in which a clinician gives a patient understandable information about a proposed procedure or intervention, including its risks, benefits, and alternatives, and then the patient makes a voluntary decision about whether to proceed with it). The ethical principle of "respect for autonomy" underpinning this approach distinguishes bioethics most sharply from earlier systems of medical ethics. Three other principles that are also influential include beneficence (doing good for the patient), nonmaleficence (not harming), and justice. These core principles lead to a set of rules such as those regarding truth-telling and confidentiality. Together, these principles and rules comprise a secular means of approaching ethical issues in medicine that is designed to be relevant in a pluralistic society. In practicality the great question in many situations is which principle takes precedence. This conflict is readily apparent in the two prominent bioethical discourses surrounding death and dying: withdrawal of support in the terminally ill and physician-assisted suicide.
Withdrawal of Support in the Terminally Ill
The rise of mechanical ventilation and intensive care technology may be likened to a double-edged sword. While rescuing countless patients from acute illness, it has also made possible the preservation of bodily functions of patients following severe brain injury. The 1981 report of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Defining Death, confirmed the appropriateness of the existing practice that allows withdrawal of life support from patients with absent brainstem functions as defined by the 1968 Harvard brain death criteria. Far more controversial have been those patients in irreversible coma who nonetheless still preserve brainstem reflexes, a condition designated as persistent vegetative state (PVS) that may continue many years with technological assistance. Perhaps the most famous such case was that of Karen Ann Quinlan, in which the New Jersey Supreme Court in 1976 recognized the right of the parents of a twenty-one-year-old woman with irreversible coma to discontinue her ventilator support over the objections of her physicians. The widely publicized decision opened the door for withdrawing such support legally, but still left open many ethical and practical questions.
Here the bioethicists stepped in. On one level, the Quinlan case confirmed their emerging role in the health care setting. Given the difficulty of ascertaining the patient's own wishes based upon the recollections of family and loved ones, the New Jersey Supreme Court recommended that hospitals develop ethics committees to guide such decisions when family and physicians are at odds. Ethicists thus gained a foothold in many hospitals. On a second level, discussions of discontinuing life support underlined the need for a more substantial framework to guide decision making. Many ethicists evoked the principle of autonomy to advocate advance directive—declarations such as living wills or the appointment of a durable power of attorney for health care—to minimize uncertainty regarding the patients' wishes should an event consign them to dependence upon invasive technology, making it impossible for them to participate in decision making about whether to continue the use of such technologies. Yet, less than 10 percent of Americans have completed such wills.
Following a series of legal cases the right to refuse life-sustaining therapies, including ventilator and feeding tube support from patients with irreversible coma, has been established. Nevertheless, in certain jurisdictions the process of refusing therapy may require clear evidence that this would indeed be in concert with the wishes of the patient.
In many ways, the movement in some parts of the United States and in the Netherlands promoting the legalization of physician-assisted suicide (PAS) carries the autonomy argument to its logical conclusion. Here, the patient with a terminal illness proceeds to take complete control of the dying process by choosing to end life before losing independence and dignity. During the 1990s, PAS gained widespread notoriety in the popular media thanks to the crusade of the Michigan pathologist Jack Kevorkian, who has openly participated in the suicides of over a hundred patients. Oregon legalized the practice in its 1997 Death with Dignity Act. Meanwhile, the Netherlands has legalized the practice of euthanasia (distinguished from PAS in that the physician directly administers the agent ending life) in 2000.
Bioethicists have generally condemned the approach to PAS represented by Kevorkian, but have been divided in opposing the practice under any circumstances. For many observers, Kevorkian's willingness to assist patients on demand devoid of any long-term doctor-patient relationship raises troubling questions about his patients' true prognoses, their other options, and the contribution of depression to their suffering. The physician Timothy Quill's decision to assist in the suicide of a forty-five-year-old woman described in an influential 1991 article has attracted much less condemnation. The woman "Diane" had been Quill's patient for eight years, and he wrote eloquently of how he had come to understand how her need for independence and control led her to refuse a cancer therapy with only a 25 percent success rate. For many ethicists the crucial question is whether PAS could be legalized yet regulated to assure the kinds of basic safeguards demonstrated by Quill's example, without placing vulnerable members of society at risk. In contrast, some ethicists have backed away from condoning any legalization of PAS as creating more potential for harm to the elderly than good—or perhaps marking a fateful step on a slippery slope leading to involuntary euthanasia.
However these issues are resolved, there is increasing recognition that a single-minded commitment to autonomy to the neglect of the other foundational principles of bioethics distorts how death and dying take place in reality. Whether they would allow PAS only rarely or not at all, most bioethicists would argue that a great challenge facing the care of the dying is the provision of palliative (or comfort) care for the terminally ill.
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JEREMY SUGARMAN JEFFREY P. BAKER