The Final Crisis: Death and the Fear of Dying

Transcription

1 The Final Crisis: Death and the Fear of Dying XI Due in large part to advances in medical technology over the past few decades, fewer people die now of acute illnesses; however more and more face the prospect of a death preceded and prolonged by chronic illness and a slow decline. In this final section we are concerned with the patient who knows (or suspects) he is dying, and with the family members and health professionals who are closely involved with him. Some of the coping tasks are similar to those we have seen in earlier sections, but the stark irrefutable reality of death makes this confrontation a unique challenge. When an individu~l becomes aware that he is probably dying, he realizes that certain fundamental aspects of his life will be determined by a force over which he has no control. He feels helpless as he faces the curtailment of his future (his goals unattained, his hopes and dreams abandoned), the necessary parting from cherished family and friends, and multiple threats to his self-esteem such as loss of productivity, ihcreasing independence, and physical deterioration. The nature of this personal challenge is determined by several factors, including the characteristics of the disease involved (the degree of discomfort, disfigurement, and deterioration), the time span, and the quality of emotional, social, intellectual, financial, and other resources available to the individual. 397

2 398 PART XI How do people respond to these potent threats to their security and self-esteem? Normal reactions include feelings of anger at "cruel fate," sadness for what must be given up, inadequacy, helplessness, and anxiety. Fear of all kinds of the unknown, of being abandoned or rejected by loved ones, of physical degeneration, of dependency, of pain-crowd in on terminally ill patients. Some are overwhelmed by all this and live out their last days in unreachable depression or isolation, but many do manage to come to terms with their situation. The fundamental coping tasks for the dying person include the management of anxiety, the maintenance of self-esteem, and the mourning of the people and objects he is losing. The mobilization of hope is one of the most significant coping mechanisms for the terminally ill. Even patients who have understood and accepted their prognosis can usually find some basis for hope, and doctors should be careful not to be so absolute as to eliminate this possibility. 1 A great source of anxiety is the patient's fear that because of changes in body appearance or function, the physical and economic burdens of his care, or simply his new status as a dying person, family, friends and physicians may r~ject or abandon him. 7,9 Warm and open communication with loved ones and trusting relationships with medical personnel provide invaluable emotional support. Patients who cannot acknowledge the prognosis or the related anxieties and rely heavily on denial and those from whom the truth has been deliberately withheld, find themselves isolated and unable to share their concerns (see Glaser & Strauss 3 on mutual pretense and suspicious awareness contexts). Maintenance of self-esteem and working through the loss of beloved people and things are the remaining tasks for the patient. Despite the dependent and helpless position in which they may find themselves, the terminally ill can still maintain their dignity, their value, and their individual identity by being responsible for decisions about their day-to-day lives and by setting realistic and realizable goals, which can provide a sense of achievement when the usual work and family functions have been relinquished. The mourning patient usually experiences feelings of anger and sadness for what is lost, and also guilt for the hurt his death will cause those who care about him.5 In our first article Claire Safran recounts the personal experience of Richard Kisonak and his family after they learn that he has a fatal illness. After an initial outburst of anger Dick began the difficult adjust-

3 THE FINAL CRISIS: DEATH AND THE FEAR OF DYING 399 ment to the abrupt shortening of his future and his deteriorating physical condition. He set out to learn all he could about his illness, to dispel some of its mystery and have some idea of what to expect. The Kisonaks take it one day at a time with Dick functioning as normally as his fluctuating symptom level allows. As his symptoms became more visible and distressing he withdrew from social interaction, except with his family and close friends. Although the family was close and supportive, he sometimes withdrew even from them, a need they understood and respected. Between their hopes for the future and their determined efforts to make the present as meaningful as possible, Dick and his family were able to reach an acceptable adjustment for this early stage of the terminal process. In our next selection, an excerpt from his book Facing Death, Robert Kavanaugh discusses the two phenomena which delimit the terminal process, the initial disclosure of the fatal prognosis and the final accommodation which must be reached in order to meet death with dignity. The debate about whether to tell a patient he has a fatal illness has gone on for decades, with some arguing that it is an unnecessary burden and others maintaining that people have a basic right to know as much of the truth as they wish in order to prepare themselves emotionally, as well as to take care of family responsibilities and settle practical arrangements. (For an interesting sociological study of the implications of withholding or disclosing a terminal prognosis see Glaser & Strauss 3.) Kavanaugh focuses on two crucial elements involved in a person's coming to terms with approaching death: his need for permission from significant people in his life (including his care-givers) and his voluntary relinquishment of everyone and everything of value to him. Only when other people signify their readiness to accept his death are his feelings of guilt, inadequacy, and helplessness assuaged. Then he can begin his own grief work, mourning all that he must leave behind, so that in the end he feels ready and at peace. As we have seen, family members, friends, and medical care-givers have a significant effect on the adaptation a dying patient makes, but they also need to make their own adjustments, to integrate into their own lives the impact of their involvement with the death of a human being. From their work with leukemic children Futterman and Hoffman 2 discerned a group of adaptive dilemmas for patients (which are

4 400 PART XI applicable in part to other relatives and close friends of someone who is dying). A balance must be found within each pair of conflicting tasks: Accept the inevitable loss while maintaining some hope; attend to the immediate needs but begin to plan for the future; cherish the patient while allowing him to begin to separate; carryon daily activities (without letting upsetting feelings interfere) but find some safe outlet for expressing these disturbing feelings; offer the patient active personal care but recognize the need to sometimes delegate care to health professionals; place faith in medical personnel while recognizing their technical and human limitations; and maintain the level of attention and affection for the patient while beginning the gradual detachment which is part of anticipatory mourning. Family members, like the patient, feel angry (at fate and at the patient), helpless, guilty (for their hostility, their sense of not doing enough, and even for their own good health), anxious, and sad. They may cope by denying, displacing, projecting, or isolating their distressing emotions or consciously controlling their mood, as in Beverly Kisonak's decision to be cheerful no matter what (chapter 27). Seeking information about the disease and its likely course and participating in the patient's care serve to bolster their sense of mastery and usefulness. Other strategies include keeping busy (whether productively or just for distraction), mobilizing hope, finding some meaning or purpose (for example, in religion) in the approaching death, and relying on available emotional support from medical personnel, clergy, social workers, and other family and friends. 4 8 The effectiveness of the medical staff in dealing with terminal illness depends on their understanding of the needs and reactions of the patient and his family and their ability to recognize and cope with their own distress. Interpreting patient behavior accurately and responding in a way which facilitates appropriate coping is an important aspect of total patient care. A dying patient represents a personal threat to staff members-a reminder of their own mortality and an instance in which they have failed to fulfill their goal of healing (see also part X). A common way of managing this guilt and anxiety, especially for doctors, is to avoid the patient as much as possible and to deal only with concrete physical problems when with the patient. Redefining the meaning of the person's death ("He is in pain" or "She would be so disfigured") and regulating the tendency to identify with the patient or his family helps reduce the personal threat. Changing one's goal from curing the patient

5 THE FINAL CRISIS: DEATH AND THE FEAR OF DYING 401 to making him comfortable, and, when little more can be done for the patient, to helping the family, is one of the most effective ways of managing the difficult professional and personal experience. 3 When the patient dies, his struggle is over, but the survivors must go on. In the third article Stanley Goldberg discusses the adjustments the family must make when one of its members dies. Adaptive tasks for the family unit include allowing mourning to occur by encouraging the open expression of feelings, relinquishing the memory of the deceased as a force in family decisions, the realignment of intrafamilial roles (both practical and emotional), and the adjustment of extrafamilial roles to take into account status changes (for example, wife to widow). If there is general consensus on the direction of family reintegration, there is increased solidarity and greater support for individual members. (Individual coping with bereavement is another complex and interesting area; see Moos,6 parts III and VIII, for a thorough discussion.) Terminal illness is a frightening thing because it forces one to face death (one's own or that of someone well loved) and come to terms with it. The challenge, like other developmental and situational crises, can be demoralizing or even overwhelming, but it also offers an opportunity for personal growth and development. References 1. Alsop, S. Stay of execution: A sort of memoir. Philadelphia:.J. B. Lippincott, Futterman, E. H., & Hoffman, I. Crisis and adaptation in the families of fatally ill children. In E..J. Anthony & C. Koupernik (Eds.), The child in his family: The impact of disease and death. New York: Wiley, Glaser, B. G., & Strauss, A. L. Awareness of dying. Chicago: Aldine, Goldfogel, L. Working with the parents of a dying child. American Journal of Nursing, 1970,70, Kubler-Ross, E. On death and dying. New York: Macmillan, Moos, R. H. (Ed.). Human adaptation: Coping with life crises. Lexington, Massachusetts: D.C. Heath, Pattison, E. M. The experience of dying. American Journal of Psychotherapy, 1967,21, Pilsecker, C. Help for the dying. Social Work, 1975,20, Reynolds, D. K., & Kalish, R. A. The social ecology of dying: Observations of wards for the terminally ill. Hospital and Community Psychiatry, 1974,25,