Causes and Symptoms Medicine determines that death has occurred by assessing bodily functions in either of two areas. Persons with irreversible cessation of respiration and circulation are dead; persons with irreversible cessation of ascertainable brain functions are also dead. There are standard procedures used to diagnose death, including simple observation, brain-stem reflex studies, and the use of confirmatory testing such as electrocardiography (ECG or EKG), electroencephalography (EEG), and arterial blood gas analysis (ABG). The particular circumstances—anticipated or unanticipated, observed or unobserved, the patient’s age, drug or metabolic intoxication, or suspicion of hypothermia—will favor some procedures over others, but in all cases both cessation of functions and their irreversibility are required before death can be declared.
About 65 percent of all Americans died from chronic conditions in 2013, according to the US Centers for Disease Control and Prevention. The Council for Foreign Relations also reported in 2014 that chronic conditions were responsible for the premature deaths (at age fifty-nine or younger) of 8 million people living in developing countries in the preceding year. Therefore, except in sudden death (as in a fatal accident) or when there is no evidence of consciousness (as in a head injury that destroys cerebral functions while leaving brain-stem reflexive functions intact), dying is both a physical and a psychological process. In most cases, dying takes time, and the time allows patients to react to the reality of their own passing. Often, they react by becoming vigilant about bodily symptoms and any changes in them. They also anticipate changes that have yet to occur. For example, long before the terminal stages of illness become manifest, dying patients commonly fear physical pain, shortness of breath, invasive procedures, loneliness, becoming a burden to loved ones, losing decision-making authority, and facing the unknown of death itself.
As physical deterioration proceeds, all people cope by resorting to what has worked for them before: the unique means and mechanisms that have helped maintain a sense of self and personal stability. People seem to go through the process of dying much as they have gone through the process of living—with the more salient features of their personalities, whether good or bad, becoming sharper and more prominent. People seem to face death much as they have faced life.
Medicine has come to acknowledge that physicians should understand what it means to die. Indeed, while all persons should understand what their own deaths will mean, physicians must additionally understand how their dying patients find this meaning.
In 1969, psychiatrist Elisabeth Kübler-Ross published the landmark On Death and Dying, based on her work with two hundred terminally ill patients. Though the work of Kübler-Ross has been criticized for the nature of the stages described and whether or not every person experiences every stage, her model has retained enormous utility to those who work in the area of death and dying. Technologically driven Western medicine had come to define its role as primarily dealing with extending life and thwarting death by defeating specific diseases. Too few physicians saw a role for themselves once the prognosis turned grave. In the decades that followed the publication of On Death and Dying, the profession has reaccepted that death and dying are part of life and that, while treating the dying may not mean extending the length of life, it can and should mean improving its quality.
Kübler-Ross provided a framework to explain how people cope with and adapt to the profound and terrible news that their illness is terminal. Although other physicians, psychologists, and thanatologists have shortened, expanded, and adapted her five stages of the dying process, neither the actual number of stages nor what they are specifically called is as important as the information and insight that any stage theory of dying yields. As with any human process, dying is complex, multifaceted, multidimensional, and polymorphic.
Well-intentioned, but misguided, professionals and family members may try to help move dying patients through each of the stages only to encounter active resentment or passive withdrawal. Patients, even dying patients, cannot be psychologically moved to where they are not ready to be. Rather than making the terminally ill die the “right” way, it is more respectful and helpful to understand any stage as a description of normal reactions to serious loss, and that these reactions normally vary among different individuals and also within the same individual over time. The reactions appear, disappear, and reappear in any order and in any combination. What the living must do is respect the unfolding of an adaptational schema that is the dying person’s own. No one should presume to know how someone else should prepare for death.
Complications and Disorders Kübler-Ross defined five stages of grief. Denial is the first stage defined by Kübler-Ross, but it is also linked to shock and isolation. Whether the news is told outright or gradual self-realization occurs, most people react to the knowledge of their impending death with existential shock: Their whole selves recoil at the idea, and they say, in some fashion, “This cannot be happening to me.” Broadly considered, denial is a complex cognitive-emotional capacity that enables temporary postponement of active, acute, but in some way detrimental, recognition of reality. In the dying process, this putting off of the truth prevents a person from being overwhelmed while promoting psychological survival. Denial plays an important stabilizing role, holding back more than could be otherwise managed while allowing the individual to marshal psychological resources and reserves. It enables patients to consider the possibility, even the inevitability, of death and then to put the consideration away so that they can pursue life in the ways that are still available. In this way, denial is truly a mechanism of defense.
Many other researchers, along with Kübler-Ross, report anger as the second stage of dying. The stage is also linked to rage, fury, envy, resentment, and loathing. When “This cannot be happening to me” becomes, “This is happening to me. There was no mistake,” patients are beginning to replace denial with attempts to understand what is happening to and inside them. When they do, they often ask, “Why me?” Though it is an unanswerable question, the logic of the question is clear. People, to remain human, must try to make intelligible their experiences and reality. The asking of this question is an important feature of the way in which all dying persons adapt to and cope with the reality of death.
People react with anger when they lose something of value; they react with greater anger when something of value is taken away from them by someone or something. Rage and fury, in fact, are often more accurate descriptions of people’s reactions to the loss of their own life than is anger. Anger is a difficult stage for professionals and loved ones, more so when the anger and rage are displaced and projected randomly into any corner of the patient’s world. An unfortunate result is that caregivers often experience the anger as personal, and the caregivers’ own feelings of grief and guilt, shame, and rejection can contribute to lessening contact with the dying person, which increases his or her sense of isolation.
Bargaining is Kübler-Ross’s third stage, but it is also the one about which she wrote the least and the one that other thanatologists are most likely to leave unrepresented in their own models and stages of how people cope with dying. Nevertheless, it is a common phenomenon wherein dying people fall back on their faith, belief systems, or sense of the transcendent and the spiritual and try to make a deal—with god, life, fate, a higher power, or the universe. They ask for more time to help family members reconcile or to achieve something of importance. They may ask if they can simply attend their child’s wedding or graduation or if they can see their first grandchild born. Then they will be ready to die; they will go willingly. Often, they mean that they will die without fighting death, if death can only be delayed or will delay itself.
At some point, when terminally ill individuals are faced with decisions about more procedures, tests, surgeries, or medications or when their thinness, weakness, or deterioration becomes impossible to ignore, the anger, rage, numbness, stoicism, and even humor will likely give way to depression, Kübler-Ross’s fourth stage and the one reaction that all thanatologists include in their models of how people cope with dying.
The depression can take many forms, for indeed there are always many losses, and each loss individually or several losses collectively might need to be experienced and worked through. For example, dying parents might ask themselves who will take care of the children, get them through school, walk them down the aisle, or guide them through life. Children, even adult children who are parents themselves, may ask whether they can cope without their own parents. They wonder who will support and anchor them in times of distress, who will (or could) love, nurture, and nourish them the way that their parents did. Depression accompanies the realization that each role, each function, will never be performed again. Both the dying and those who love them mourn.
Much of the depression takes the form of anticipatory grieving, which often occurs both in the dying and in those who will be affected by their death. It is a part of the dying process experienced by the living, both terminal and nonterminal. Patients, family, and friends can psychologically anticipate what it will be like when the death does occur and what life will, and will not, be like afterward. The grieving begins while there is still life left to live.
Bereavement specialists generally agree that anticipatory grieving, when it occurs, seems to help people cope with what is a terrible and frightening loss. It is an adaptive psychological mechanism wherein emotional, mental, and existential stability are painfully maintained. When depression develops, not only in reaction to death but also in preparation for it, it seems to be a necessary part of how those who are left behind cope to survive the loss themselves. Those who advocate or advise cheering up or looking on the bright side are either unrealistic or unable to tolerate the sadness in themselves or others. The dying are in the process of losing everything and everyone they love. Cheering up does not help them; the advice to “be strong” only helps the “helpers” deny the truth of the dying experience.
Both preparatory and reactive depression are frequently accompanied by unrealistic self-recrimination, shame, and guilt in the dying person. Those who are dying may judge themselves harshly and criticize themselves for the wrongs that they committed and for the good that they did not accomplish. They may judge themselves to be unattractive, unappealing, and repulsive because of how the illness and its treatment have affected them. These feelings and states of minds, which have nothing to do with the reality of the situation, are often amenable to the interventions of understanding and caring people. Financial and other obligations can be restructured and reassigned. Being forgiven and forgiving can help finish what was left undone.
Kübler-Ross’s fifth stage, acceptance, is an intellectual and emotional coming to terms with death’s reality, permanence, and inevitability. Ironically, it is manifested by diminished emotionality and interests and increased fatigue and inner (many would say spiritual) self-focus. It is a time without depression or anger. Envy of the healthy, the fear of losing all, and bargaining for another day or week are also absent. This final stage is often misunderstood. Some see it either as resignation and giving up or as achieving a happy serenity. Some think that acceptance is the goal of dying well and that all people are supposed to go through this stage. None of these viewpoints is accurate. Acceptance, when it does occur, comes from within the dying person. It is marked more by an emotional void and psychological detachment from people and things once held important and necessary and by an interest in some transcendental value (for the atheist) or god (for the theist). It has little to do with what others believe is important or “should” be done. It is when dying people become more intimate with themselves and appreciate their separateness from others more than at any other time.
Perspective and Prospects Every person will eventually die, and the fact of death in each life is one that varies by culture in terms of its meaning. For some cultures, dying is seen as the ultimate difficulty for dying people and their loved ones. For other cultures, it is seen as not difficult at all, but more so like passing on to another realm of existence. In Western cultures, however, dying has very much become a medical process, and it is often a process filled with challenging questions. Patients ask questions that cannot be answered; families in despair and anger seek to find cause and sometimes to lay blame. It takes courage to be with individuals as they face their deaths, struggling to find meaning in the time that they have left. Given this, in Western medicine, a profession that prides itself on how well it intervenes to avoid outcomes like death, it takes courage to witness the process and struggle involved in death. Working with death also reminds professionals of their own inevitable death. Facing that fact inwardly, spiritually, and existentially also requires courage.
Cure and treatment become care and management in the dying. They should live relatively pain-free, be supported in accomplishing their goals, be respected, be involved in decision making as appropriate, be encouraged to function as fully as their illness allows, and be provided with others to whom control can comfortably and confidently be passed. The lack of a cure and the certainty of the end can intimidate health care providers, family members, and close friends. They may dread genuine encounters with those whose days are knowingly numbered. Yet the dying have the same rights to be helped as any of the living, and how a society assists them bears directly on the meaning that its members are willing to attach to their own lives.
In the twenty-first century, largely in response to what dying patients have told researchers, medicine recognizes its role to assist these patients in working toward an appropriate death. Caretakers must determine the optimum treatments, interventions, and conditions that will enable such a death to occur. With the view of respecting individuals' dying wishes and of easing the burden of decision making for caretakers, much public attention has turned toward advance care planning for end of life, in which individuals communicate ahead of time which treatments and interventions they wish and do not wish to receive when experiencing a life-threatening event or illness. For each person, these plans should be unique and specific. Caretakers should respond to the patient’s needs and priorities, at the patient’s own pace and as much as possible following the patient’s lead. For some dying patients, the goal is to remain as pain-free as is feasible and to feel as well as possible. For others, finishing whatever unfinished business remains becomes the priority. Making amends, forgiving and being forgiven, resolving old conflicts, and reconciling with one's self and others may be the most therapeutic and healing of interventions. Those who are to be bereaved fear the death of those they love. The dying fear separation from all they know and love, but they fear as well the loss of autonomy, letting family and friends down, the pain and invasion of further treatment, disfigurement, dementia, loneliness, the unknown, becoming a burden, and loss of dignity. Many of those fears of have lent support for "death with dignity" laws, which allow terminally ill persons of sound mind to end their lives voluntarily with a prescription medication before their illnesses incapacitate them.
The English writer C. S. Lewis said that bereavement is the universal and integral part of the experience of loss. It requires effort, authenticity, mental and emotional work, a willingness to be afraid, and an openness to what is happening and what is going to happen. It requires an attitude that accepts, tolerates suffering, takes respite from the reality, reinvests in whatever life remains, and moves on. The only way to cope with dying or witnessing the dying of loved ones is by grieving through the pain, fear, loneliness, and loss of meaning. This process, which researcher Stephen Levine has likened to opening the heart in hell, is a viscous morass for most, and all people need to learn their own way through it and to have that learning respected. Healing begins with the first halting, unsteady, and frightening steps of genuine grief, which sometimes occur years before the “time of death” can be recorded.
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