Thinking about death from an observer’s perspective is one thing. Thinking about one’s own death, like Ricardo is doing, is quite another. The reactions people have to their own impending death, long thought to be the purview of religion and philosophy, were not researched until well into the 20th century.
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Many authors have tried to describe the dying process, often using the metaphor of a trajectory that captures both the duration of time between the onset of dying (e. g., from the diagnosis of a fatal disease) and death and the course of the dying process (Wilkinson & Lynn, 2001). These dying trajectories vary a great deal across diseases, as illustrated in Figure 13.2. Some diseases, such as lung cancer, have a clear and rapid period of decline; this “terminal phase” is often used to determine eligibility for certain services (e. g., hospice, discussed later). Other diseases, such as congestive heart failure, have no clear terminal phase; any significant health event could cause death. The two approaches of describing the dying process that we will consider try to account for both types of trajectories.
Kubler-Ross’s Theory. Elisabeth Kubler-Ross became interested in the experience of dying when she was an instructor in psychiatry at the University of Chicago in the early 1960s. When she began her investigations into the dying process, such research was controversial; her physician colleagues initially were outraged, and some even denied that their patients were terminally ill. Still, she persisted. More than 200 interviews with terminally ill people convinced her that most people experienced several emotional reactions. Using her experiences, she
described five reactions that represented the ways in which people dealt with death: denial, anger, bargaining, depression, and acceptance (Kubler — Ross, 1969). Although they were first presented as a sequence, it was subsequently realized that the emotions can overlap and can be experienced in different order.
When people are told that they have a terminal illness, their first reaction is likely to be shock and disbelief. Denial is a normal part of getting ready to die. Some want to shop around for a more favorable diagnosis, and most feel that a mistake has been made. Others try to find reassurance in religion. Eventually, though, reality sets in for most people.
At some point, people express anger as hostility, resentment, and envy toward health care workers, family, and friends. People ask, “Why me?” and express a great deal of frustration. The fact that they are going to die when so many others will live seems so unfair. With time and work, most people confront their anger and resolve it.
In the bargaining phase, people look for a way out. Maybe a deal can be struck with someone, perhaps God, that would allow survival. For example,
a woman might promise to be a better mother if only she can live. Or a person sets a timetable: “Just let me live until my daughter graduates from college.” Eventually, the person becomes aware that these deals will not work.
When one can no longer deny the illness, perhaps because of surgery or pain, feelings of depression are very common. People report feeling deep loss, sorrow, guilt, and shame over their illness and its consequences. Kubler-Ross believes that allowing people to discuss their feelings with others helps move them to an acceptance of death.
In the acceptance stage, the person accepts the inevitability of death and often seems detached from the world and at peace. “It is as if the pain is gone, the struggle is over, and there comes a time for the ‘final rest before the journey’ as one patient phrased it” (Kubler-Ross, 1969, p. 100).
Although she believes that these five stages represent the typical range of emotional development in the dying, Kubler-Ross (1974) cautions that not everyone experiences all of them or progresses through them at the same rate or in the same order. Research supports the view that her “stages”
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should not be viewed as a sequence (Neimeyer,
1997) . In fact, we could actually harm dying people by considering these stages as fixed and universal. Individual differences are great, as Kubler-Ross points out. Emotional responses may vary in intensity throughout the dying process. Thus the goal in applying Kubler-Ross’s theory to real-world settings would be to help people achieve an appropriate death. An appropriate death is one that meets the needs of the dying person, allowing him or her to work out each problem as it comes.
A Contextual Theory of Dying. One of the difficulties with most theories of dying is a general lack of research evaluating them in a wide variety of contexts (Kastenbaum & Thuell, 1995). By their very nature, stages or sequences imply a particular directionality. Stage theories, in particular, emphasize qualitative differences between the various stages. However, the duration of a particular stage, or a specific phase, varies widely from person to person. Such theories assume some sort of underlying process for moving through the stages or phases but do not clearly state what causes a person to move from one to another.
One reason for these problems is the realization that there is no one right way to die, although there may be better or worse ways of coping (Corr, 1991-1992; Corr, Corr, & Nabe, 2008). A perspective that recognizes this would approach the issue from the mind-set of the dying person and the issues or tasks he or she must face. Corr identified four dimensions of such tasks: bodily needs, psychological security, interpersonal attachments, and spiritual energy and hope. This holistic approach acknowledges individual differences and rejects broad generalizations. Corr’s task work approach also recognizes the importance of the coping efforts of family members, friends, and caregivers as well as those of the dying person.
Kastenbaum and Thuell (1995) argue that what is needed is an even broader, contextual approach that provides a more inclusive view of the dying process. They point out that theories must be able to handle people who have a wide variety of terminal illnesses and be sensitive to dying people’s own perspectives and values related to death.
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The socio-environmental context within which dying occurs, which often changes over time, must be recognized. For example, a person may begin the dying process living independently but end up in a long-term care facility. Such moves may have profound implications for how the person copes with dying. A contextual approach would provide guidance for health care professionals and families for discussing how to protect the quality of life, provide better care, and prepare caregivers for dealing with the end of life. Such an approach would also provide research questions. For example, how does one’s acceptance of dying change across various stages?
We do not yet have such a comprehensive theory of dying. But as Kastenbaum and Thuell point out, we can move in that direction by rejecting a reduc — tionistic approach that focuses on set stages for a truly holistic one. One way to accomplish this is to examine people’s experiences as a narrative that can be written from many points of view (e. g., the patient, family members, caregivers). What would emerge would be a rich description of a dynamically changing process.