On Dying Well

Whatever else may be said, dying is a highly personal process in the sense that dying affects one's personal being as a whole and immediately precedes the end of life. To recognize dying as personal entails that care of terminally ill persons should be based on respect for the inherent worth and dignity of persons. Unfortunately and all too frequently, persons with long-term terminal illnesses are referred to as hopeless cases that have to be managed under the conditions of life decline. The ''life-decline'' model often guides, even if tacitly, the outlook on care practices. More frequently it is taken as the major premise in developing an ethics of care of dying persons. That is why it is sometimes thought that terminal care can be based on efforts of making decisions to forgo treatment and allow persons to die or on medical management models of administering terminal care. Robert Morison, a physician, described the life-decline model in the following way: ''The life of the dying patient becomes steadily less complicated and rich, and, as a result, less worth living or preserving. The pain and suffering involved in maintaining what is left are inexorably mounting, while the benefits enjoyed by the patient himself, or that he can in any way confer on those around him, are just as inexorably declining'' (1971, p. 695).

While Morison is correct to claim that these are ''the unhappy facts of the matter,'' in most situations, it is surely not an ethical claim that this is how matters ought to be (prescriptively), or that these are unalterable facts of the matter. The ''unhappy facts'' can be altered, at least to a significant degree, in many if not most cases, and the ''decline'' model does not have to preside over an ethic of care for the dying any more than aging should be confused with dying or an irreversible illness with insufficient well-being. An alternative approach can be taken without excessive commitment to programs aimed entirely at elimination of degenerative illnesses.

People should be enabled to ''die well.'' Again, as noted earlier and contrary to some myths, people do not fear death so much as the loss of well-being and a painful decline (Gallup & Newport, 1991; Saunders & Baines, 1989). But decline is not simply equatable with physiological or biological deterioration. Decline in quality of life can occur quite without physiological or biological deterioration. Even the argument that a minimal condition of ''health'' is a necessary condition of ''happiness'' does not, and cannot, claim that ''health'' is a sufficient condition of happiness. Moreover, and perhaps more important, decline of ''health'' does not necessarily or for all persons entail diminishment of self and sense of self as an integral individual human being. Of course, there are a variety of contingent matters and conditions that can contribute to a loss of self-esteem and self-worthiness. These can, and often do, include environmental conditions, dependency, care conditions, relationships, and a cluster of inculcated values—right or wrong—that shape one's sense of self-image. The latter include such values as productivity, mobility, success, good looks, and so on. But the problems presented by these values and the measurement of a quality of life by these standards may be as much a problem of a culture as one relating to an individual dying patient. In fact, a reassessment of the prominence given to these values may be called for. Yet it still remains true that loss of physical activity, independence, productivity, and the like does not necessarily mean, even in a culture that values them highly, that life loses its meaning. Professionals (nurses and physicians) who work with the elderly and the dying regularly remind us of that experientially founded conclusion. The following case illustrates the reminder: Mrs. Z, an elderly, retired librarian, was being cared for by a hospice team for terminal cancer of the cervix. She was asked if there was anything she would like to do while confined to her bed. She replied that she had always wanted to study the German language and had never had the time or opportunity. A tutor was secured who met with her three times per week. Later Mrs. Z commented, ''I am having a ball. These are some of the most meaningful days of my life.''

In recent years, various attempts to defend and justify a medical ethic of ''allowing a patient to die'' have become moral, not medical, premises of caring (only caring) for the dying, whether tacitly or explicitly expressed as a subscription to ''omissions'' and withholdings or withdrawals of treatments. Sometimes such an ethic is defended as a corollary of ''natural death,'' sometimes as an effort to draw a limit to aggressive and intrusive medicine, and sometimes as the morally and legally correct way to end pain, suffering, and meaningless life prolongation. These attempts, as an ethic of passive euthanasia, are sometimes offered as an alternative to active euthanasia. Indeed, the President's Commission (1983) argued for a moral distinction between actions and omissions that lead to death, concluding that many omissions in the medical context were acceptable (see also Beauchamp & Perlin, 1978; Ladd, 1979). While an ''allowing to die'' ethic was designed to resist aggressive and excessive use of life-sustaining treatments, it suffered a significant shortcoming if exercised alone. It could lead to the abandonment of the patient to his or her own autonomy, or to a position that ''there is nothing more that can be done.''

The prolongation of life should not be the exclusive aim of medical practice, nor should the withholding or withdrawing of life-sustaining treatment be the primary aim of ethics of care for the terminally ill. Appropriate care to the very end of life encompasses more and can result in an appreciation that the care of terminally ill persons is more than disease management. This neither argues for nor infers any subscription to the dictum ''preserve life at all costs.'' An approach to care for the dying that takes its grounding in acceptance of death, imposing some moral categories of allowing to die and drawing general limits to the preservation of life by classification, suffers from imbalance. So long as it is possible to meet the needs of an individual patient, especially the dying and the terminally ill, it is neither morally responsible to kill the patient nor morally responsible to allow the patient to die. Moreover, so long as we also recognize that human beings are inherently mortal, it is neither the case that prolongation of life is the singular and chief need of a patient nor that properly relevant and pertinent treatment begins and ends on the principle of preservation of life. The question is not ''to treat or not to treat'' or ''to treat or allow to die,'' but how to treat—even to the end of an individual person's life. Treatment of pain and symptoms and other palliative care must be recognized as forms of treatment.

Too often it is ignored or forgotten that personal well-being, which may well extend far beyond the dimensions of illness and health or even mortal ills, is a fundamental human value. That value was once expressed to me clearly and succinctly by a patient dying of cancer when she simply stated, ''I want to live 'till I die.'' To value living well and individual well-being is not simply to value life as duration, that is, length of life, nor is it simply to value physiological function. Everyone will recognize that one does not need the body of a child or the physical abilities of an athlete to have a high quality of life, and, of course, it is evident that mere absence of disease by no means guarantees well-being. Even if we admit that total absence of health is death, is it possible that a person can be diseased to an extent, or even seriously so, and still have a high quality of life? Can a dying person who has a prognosis for a short length of remaining life still have a high quality of life for the remainder of his or her days? Both questions can be answered in the affirmative without accepting the ''life-decline model'' as a starting point or causing attribution of the ''hopeless-case'' role. Unless hope in fact does not have a dimension different from a quantifiable one, then one should be clear and unequivocal in claims, from the start, that all individual human beings are hopeless. All too often hope is mistakenly equated with cure or some wish to get out of life alive.

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