The Final Crisis. Death and the Fear of Dying

Transcription

1 XI The Final Crisis Death and the Fear of Dying Death is life's final crisis. For some, death comes swiftly in an accident; others slip away silently in their sleep. Deaths like these are viewed as easy: They are quick and relatively painless. But many patients face the prospect of an extended period of time between the first abruptly imparted knowledge that they will die and actual death-the "living-dying interval." Though some of the coping tasks embedded in this crisis are similar to those we have seen earlier, the stark irrefutable reality of death makes the confrontation a unique challenge. Moreover, there are wide variations in the way individuals experience the dying process, in the ebb and flow of their emotions.4 The dying person must come to grips with many lossesfuture plans must be abandoned and significant relationships with family and friends must end. The psychiatrist Erich Lindemann spent his life trying to understand life crisis and the adaptation process. He has described ways of coping with impending death and of grieving for the most significant loss of all-the "losing of oneself." In facing his own painful death from a sacral chordoma, Lindemann noted the value of seeking information in response to the uncertainty of the situation, of learning from other people in a similar predicament, of structuring an acceptable future for those who are left behind, and of creating a lasting image of oneself that can survive one's own death and be remembered by family and friends. He recommends that staff promote these coping skills by forming a therapeutic alliance with 385

2 386 PART XI patients and by trying to understand their unique construction of reality.l Dying patients face the difficult challenge of balancing anticipatory grief and disengagement while still creating a meaningful life during the unknown amount of time they have remaining.6 Despite the dependent and helpless position in which they may find themselves, the terminally ill can maintain their dignity and individual identity by being responsible for decisions about their day-to-day lives and by setting realistic goals that can provide a sense of achievement when the usual work and family functions are relinquished. 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 staff should be careful not to be so absolute as to eliminate this possibility. If patients can negotiate life's final crisis successfully, the process of coping with dying may enable them to achieve deeper selfawareness and closer relationships with their families. In the first article, Sylvia Poss identifies six overlapping, problem-solving tasks that dying patients confront as they prepare for death. The first task is to become emotionally aware of approaching death; such awareness may wax and wane from day to day. Patients sometimes dwell on the chance of recovery even though they "know" they only have a short time to live. The dying person also needs to strike a balance between hope and fear. More than death itself, patients may fear pain, abandonment, or uncertainty. Reassurance that they will not suffer or be isolated and belief in an afterlife in which they will be reunited with family members may enable patients to control their fears and counter their despair. In Chapter 10, Alice Stewart Trillin spoke of the will to live as a valuable coping resource for cancer patients. But when death is near, a person must relinquish the will to live and make a conscious decision to accept death. The dying person's third task is to make an active decision to reverse the physical struggle to live. A related task is that of relinquishing responsibility and independence by letting go of life, giving up control, and allowing caregivers to make decisions. During this part of the dying process, patients may fight to survive for an important occasion, such as a last birthday or holiday. The final tasks entail disengagement

3 DEATH AND THE FEAR OF DYING 387 from personal relationships and spiritual preparation for death. Faith offers the comfort and support that sustains many patients as they cope with the crisis of dying. Caregivers who understand these six tasks can help patients attain a sense of closure and die with dignity. As concern about the process of dying has widened, health care professionals have communicated more directly with patients about their diagnosis, prognosis, and prospect of death. Even children may participate in making decisions about whether they would like further experimental treatment or supportive care.3 Open communication not only promotes coping during the living-dying interval, but it can also lead to better family adjustment following the death of a family member, as was the case for parents who talked openly with their dying children.7 Groups led by health care professionals or patients can provide a channel for addressing common issues and thus facilitate coping with dying. Such groups offer terminally ill patients a chance to share their experiences and learn how to make their remaining life meaningful and to come to terms with death. In the second article, David Spiegel and Irvin D. Yalom describe a support group for women with metastatic breast cancer. The group enabled the women to put death in perspective and adapt to "living in the context of dying." As the women learned how other members coped, dying was "detoxified" and their fears of death diminished. The women became more assertive and set new priorities based on the knowledge that time was short and should be used wisely. For some women, marital relationships and communication improved as they became more assertive about meeting their needs. The women also established better working relationships with their doctors and taught them to be more responsive to their needs and the needs of cancer patients in general. By enabling them to make such contributions, the group helped the women achieve a sense of purpose as they slowly approached their death. The members found new meaning in life and taught their families and friends about living with cancer and dying with dignity. In recent years, health care staff have become more aware of the special needs of dying persons and their families. Physicians' traditional emphasis on sustaining life and longevity has been

4 388 PART XI augmented by programs such as Comfort Care Only5 in which the aim is to alleviate pain and make patients as comfortable as possible as they approach death. The hospice movement has developed, and it is now more common for patients to be cared for and to die at home.2 In the final article, Courtney Rogers Malone writes movingly of her sister Bobby's death from cancer. Bobby's family helped her to fulfill her last wish-to die at home. When Bobby learned she had only a brief time to live, she decided she wanted to die at home without heroic life-support measures. She got together with her family in a house by the sea to spend her last Christmas. The family was aided by a physician friend who provided emotional support and helped to make Bobby comfortable by supplying oxygen equipment and pain medication. By Christmas Eve, Bobby had become very weak. But there were brief periods when she made a special effort to participate in life, as on Christmas Day when she shared some final happy moments with her family. On New Year's Eve, Bobby had difficulty breathing and needed oxygen continuously. Family members bathed and fed her and played music and sang for her-expressions of their love, and in turn, ways to cope with their grief. Finally, Bobby took off her oxygen mask and said, "Let's get on with it." We see here the conscious decision to give up the physical fight and go about the business of dying of which Sylvia Poss spoke in Chapter 27. The family was led in prayer by their clergyman and each person said goodbye to Bobby. Bobby died peacefully the next afternoon. The family gathered together for a toast "to life" and rejoiced in the fact that Bobby had succeeded in dying as she wished. The family had succeeded too-they helped Bobby to negotiate her last crisis. In the process, they learned much about life, love, and caring. References I. Lindemann, E. Reactions to one's own fatal illness. In E. Lindemann & E. Lindemann (Eds.), Beyond grief: Studies in crisis intervention. New York: Jason Aronson, Murphy, L. B. The home hospital: How afamily can cope with catastrophic illness. New York: Basic Books, Nitschke, R., Wunder, S., Sexauer, C. L., & Humphrey, G. B. The final-stage con-

5 DEATH AND THE FEAR OF DYING 389 ference: The patient's decision on research drugs in pediatric oncology, Journal of Pediatric Psychology, 1977, 2, Pattison, E. M. The living-dying process. In C. A. Garfield (Ed.), The dying patient. New York: McGraw-Hill, Schmale, A. H. The dying patient. Advances in Psychosomatic Medicine, 1980, 10, Sourkes, B. The deepening shade: Psychological aspects of life-threatening illness. Pittsburg: University of Pittsburg Press, Spin etta, J. J., Swarner, J. A., & Sheposh, J. P. Effective parental coping following the death of a child from cancer. Journal of Pediatric Psychology, 1981, 6,