CONTRONTING DEATH Helen Reynolds , 63, had undergone operations in January and April to repair and then replace

a heart valve that was not permitting a smooth flow of blood. But by May her feet had turned the color of overripe eggplants, their mottled purple black an unmistakable sign of gangrene In June she chose to have first her right leg, and then her left, amputated in hopes of stabilizing her condition. The doctors were skeptical about the surgery, but deferred to her wishes. But then Reynolds uncharacteristically began talking about her pain. On that Sunday afternoon in june, a nurse beckoned intern Dr. Randall Evans. A graduate of the University of New Mexico Medical School who planned a career in the critical-care field, was immensely popular with the nursing staff for his cordial and sympathetic manner. But, unlike the MICU nurses, he had difficulty reading Reynolds lips (the ventilator made it impossible for her to speak aloud), and asked her to write down her request. Laboriously, she scrawled 16 words on the note pad:I have decided to end my life as I do not want to live like this. (Begley, 1991, pp.44 45) Less than a week later, after the ventilator that helped her to breathe had been removed at her request, Helen Reynolds died. Like other deaths, Reynoldss raises a myriad of difficult questions. Was her request to remove the respirator equivalent to suicide? Should the medical staff have complied with the request? Was she coping with her impending death effectively? How do people come to terms with death, and how do they react and adapt to it? Lifespan developmentalists and other specialists in death and dying have struggled to find answers to such questions Understanding the process of dying: Are There Steps toward Death? No individual has had a greater influence on our understanding of the way people confront death than Elisabeth Kubler-Ros. A psychiatrist, Kubler-Ros developed a theory of death and dying, built on extensive interviews with people who were dying and with those who cared for them (Kubler-Ros, 1969, 1982). Based on her observations, Kubler-Ros initially suggested that people pass through five basic steps as they move towards death (summarized in Figure 19 2 on page 610). DENIAL. No, I cant be dying. There must be some mistake. It is typical for people to protest in such a manner on learning that they have a terminal disease. Such objections represent the fist stage of dying., denial. In denial, people resist the idea that they are going to die. They may argue that their test results have been mixed up, that an X-ray has been read incorrectly, or that their physician does not know what he or she is talking about.

Denial comes in several forms. A patient may flatly reject the diagnosis, simply refusing to believe the news. In extreme cases, memories of weeks in the hospital are forgotten. In other forms of denial, patients fluctuate between refusing to accept the news and at other times confiding that they know they are going to die (Teutsch, 2003) Although we might view the loss of reality implied by denial as a sign of deteriorating mental health, in fact many experts view denial in positive terms. Denial is a defense mechanism that can permit people to absorb the unwelcome news on their own terms and at their own pace. Only when they are able to acknowledge the news can they move on and eventually come to grips with the reality that they are truly going to die. ANGER. After they move beyond denial, people may be likely to express anger. A dying person may be angry at everyone: people who are in good health , their spouses and other family members, those who are caring for them , their children. They may lash out at others, and wonder sometimes aloud why they are dying and not someone else. They may be furious of god, reasoning that they have led good lives and that there are far worse people in the world who should be dying. It may not be easy to be around people who are going through an anger stage. As they focus their anger on others, they may say and do things that are painful and sometimes unfathomable. Eventually, though, most patients move beyond the anger phase. This may lead to another development bargaining. BARGAINING. If youre good, youll be rewarded. Most people learn this equation in childhood, and many try to apply it to their impending death. In this case, good means promising to be a better person, and the reward is staying alive. In bargaining, dying people try to negotiate their way out of death. They may declare that they will dedicate their lives to the poor if God saves them. They may promise that if they can just live long enough to see a son married, they will willingly accept death later. However, the promises that are part of the bargaining process are rarely kept. If one request appears to be granted, people typically seek another, and yet another. Furthermore, they may be unable to fulfill their promises because their illness keep progressing and prevent them from achieving what they said they would do. In some ways, bargaining seems to be positive consequences. Although death cannot be postponed indefinitely, having a goal of attending a particular event or living until a certain time may in fact delay death until then. For instance, death rates of jewish people fall just before the holiday of Passover, and rise just after it. Similarly, The death rate among older Chinese women falls before and during important holidays, and rises after. It is as if the people involved have negotiated to stay alive until after the holidays have passed (Phillips & Smith,1990; Phillips, 1992).

In the end, of course, all the bargaining in the world is unable to overcome the inevitability of death. When people eventually realize that death is unavoidable, they often move into a stage of depression. DEPRESSION. Many dying people experience phases of depression.. Realizing that the issue is settled and thay cannot bargain their way out of death, people are overwhelmed with a deep sense of loss. They know that they are losing their loved ones and that their lives really are coming to an end. The depression they experience may be of two types. In reactive depression, the feelings of sadness are based on events that have already occurred: the loss of dignity that may accompany medical procedures, the end of job, or the knowledge that one will never return from the hospital to ones home. Dying people also experience preparatory depression. In preparatory depression, people feel sadness over future losses. They know that death will bring an end to their relationships with others and that they will never see future generations. The reality of death is inescapable in this stage, and it brings about profound sadness over the unalterable conclusion of ones life. ACCEPTANCE. Kubler-Ros suggested that the final step of dying is acceptance. People who have developed a state of acceptance are fully aware that death is impending. Unemotional and uncommunicative, they have virtually no feelings positive or negative about the present or future. They have made peace with themselves, and they may wish to be left alone. For them, death holds no sting. EVALUATING KUBLER-ROSSS THEORY. Kubler-Ross has had an enormous impact on the way we look at death. As one of the first people to observe systematically how people approach their own deaths. She is recognized as a pioneer. Kubler-Ross was almost single handedly responsible for bringing into public awareness the phenomenon of death, which previously had languished out of sight in western societies. Her contributions have been particularly influential among those who provide direct care to the dying. On the other hand, her work has drawn criticism. For one thing, there are some obvious limitations to her conception of dying. It is largely limited to those who are aware that they are dying and who are die in a relatively leisurely fashion. To People who suffer from diseases in which the prognosis is uncertain as to when or even if they will die, her theory is not applicable. The most important criticisms, however, concern the stage like nature of Kubler-Rosss theory. Not every person passes through every step on the way to death, and some people move through the steps in a different sequence. Some people even go through the

same steps several times Depressed patients may show bursts of anger, and an angry patient may bargain for more time (schulz & Aderman, 1976; Kastenbaum, 1992). This criticism of the theory has been especially important news for medical and other caregivers who work with dying people. Because Kubler-Rosss stages have become so well known, well meaning caregivers have sometimes tried to encourage patients to work through the steps in a prescribed order, without enough consideration for their individual needs. Furthermore, Kubler-Ross may have considered too limited a set of factors when she outlined her theory. For example, other researchers suggest that anxiety plays an important role throughout the process of dying. The anxiety may be about ones upcoming death, or it may relate to fear of the symptoms of the disease. A person with cancer, then, may fear death less than the uncontrollable pain that may be a future possibility (Taylor,1991; Hayslip et al.,1997). Finally, there are substantial differences in peoples reactions to impending death. He specific cause of dying; how long the process of dying lasts; a persons age, sex, and personality and social support available from family and friends all influence the course of dying and peoples responses to it (Stroene, Stroebe, & Hasson, 1993; Carver & Scheier,2002) In short, There are significant concerns about accuracy of Kubler-Rosss account of how people react to impending death. In response to some of these concerns, other theorists have developed some alternative ideas. Psychologist Edwin Shneidman, for example suggests that there arethemes in peoples reaction to dying that can occur and recur-in any order throughout the dying process. These include such feelings and thoughts as incredulity, a sense of unfairness, fear of pain or even general terror, and fantasies of being rescued (Leenaars & Shneidman, 1999). Another theorist, Charles Corr, suggests that, as in other periods of life, people who are dying face a set of psychological tasks. These include minimizing physical stress, maintaining the richness of life, continuing or deepening their relationships with other people, and fostering hope, often through spiritual searching (Corr & Doka, 2001; Corr, Nabe & Corr, 2000,2006) Choosing the Nature of Death: is DNR the way to go? The letters DNR written on a patients medical chart have a simple and clear meaning. Standing for Do not Resuscitate, DNR signifies that rather than administering any and every procedure that might possibly keep a patient alive, no extraordinary means are to be taken. For terminally ill patients, DNR may mean the difference between dying immediately or living additional days, months, or even years, kept alive only by the most extreme, invasive and even painful medical procedures. The decision to use or not to use extreme medical interventions entails several issues. One is the differentiation of extreme and extraordinary measures from those that are

simply routine. There are no hard and fast rules; people making the decision must consider the needs of the specific patient, his or her prior medical history, and factors such as age and even religion. For instance, different standards might apply to a 12 year old patient and an 85 year old patient with the same medical condition. Other questions concern quality of life. How can we determine an individuals current quality of life and whether it will be improved or diminished by a particular medical intervention? Who makes such decisions the patient, a family member or medical personnel? One thing is clear: Medical personnel are reluctant to carry out the wishes of the terminally ill and their families to suspend aggressive treatment. Even when it is certain that a patient is going to die, and patients determine that they do not wish to receive further treatment, physicians often claim to be unaware of their patients wishes. For instance, although one third of the patients ask not to be resuscitated, less than half of these peoples physicians state that they know of their patients preference (see table 191). In addition, only 49% of patients have their wishes entered on their medical charts. Physicians and other health care providers may be reluctant to act on DNR requests in part because they are trained to save patients, not permit them to die, and in part to avoid legal liability issues (Knaus et al., 1995; Goold, William, & Arnold, 2000; McArdle, 2002) CARING FOR THE TERMINALLY ILL: THE PLACE OF DEATH. Recall the description of Helen Reynoldss last months of life, spent in the intensive care unit of a Boston hospital. Although family members visited her frequently, Helen also faced many lonely hours watching television as her condition deteriorated. Like Reynolds, about half the people in the United States who die do so in hospitals. It need not be that way. There are several reasons why hospitals are among the least desirable locales in which to face death. Hospitals are typically impersonal, with staff rotating throughout the day. Because visiting hours are limited, people frequently die alone, without the comfort of loved ones at their bedside. Furthermore, hospitals are designed to make people better, not to deal with the dying, and it is extraordinarily expensive to provide custodial care for dying people. Consequently, hospitals typically dont have the resources needed to deal adequately with the emotional requirements of terminally ill patients and their families. Because of the limitations of traditional hospitals in dealing with the dying, there are now several alternatives to hospitalization. In home care, dying people stay in their homes and receive treatment from their families and visiting medical staff. Many dying patients prefer home care because they can spend their final days in a familiar environment, with people they love and a lifetime accumulation of treasures around them. Although the dying may prefer home care, it can be quite difficult for family members. Furnishing final care can offer family members a good deal of emotional solace because they are giving something precious to people they love. But it is extraordinarily

draining, both physically and emotionally, to be on call 24 hours a day. Furthermore, because most relatives are not trained in nursing, they may provide less than optimal medical care. Many people decide they just arent equipped to care for a dying family member at home. (Perreault, Fothergill-Bourbonnais, & Fiset, 2004). For these families, another alternative to hospitalization that is becoming increasingly prevalent is hospice care. Hospice care is care for the dying provided in institutions devoted to those who are terminally ill. In the Middle Ages, Hospices were facilities that provided comfort and hospitality to travelers. Drawing on that concept, todays hospice are designed to provide a warm, supportive environment for the dying. They do not focus on extending peoples lives, but rather on making their final days pleasant and meaningful. Typically, people who go to hospice are removed from treatments that are painful, and no extraordinary or invasive means are employed to make their lives longer. The emphasis is on making patients lives as full as possible, not on squeezing out every possible moment of life at any cost (Johnson, Kassner, & Kutner, 2004; Corr,2007). Although the research is far from conclusive, hospice patients appear to be more satisfied with the care they receive than those who receive treatment in more traditional settings. Hospice care, then, provides a clear alternative to traditional hospitalization for the terminally ill (Tang, Aaronson, & Forbes, 2004; Seymour et al., 2007; Rhodes et al., 2008).