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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 Reynold’s 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, Reynolds’s 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 can’t 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.

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

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

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

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

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