Dying, Process of
It might seem self-evident that death is the outcome of the process of dying. The reality, however, is not so simple. Consider a few examples: Two people are experiencing the same life-threatening emergency. One person receives prompt and competent treatment; the other does not. Were both dying if one recovers? Or say that laboratory tests show that a person has a progressive condition that sooner or later will result in death. At the moment, though, the person has only the early symptoms and can continue with all normal activities. Is this person dying? What about a person clinging to life in a case where doctors have devised a last-ditch intervention atop more standard treatments that have already failed? Is this person dying if there is another treatment that offers hope of remission or cure? And what of a comatose patient, dependent on tubes and respirators with no sign of improvement? Is this person in a state of suspended dying? Or is this person already dead?
Such quandaries have become increasingly commonplace because of medical and technological advances. Continuing changes in the definition of death have also affected discourse about dying. This familiar term no longer seems entirely adequate when applied to a variety of situations, some of them shifting and ambiguous.
"Dying": Historical Origin and Current Usage
Dighe, (also spelled dye ) was a word in common usage in the Friesland province of northern Holland in the fourteenth century at the time when Europe was devastated by the Black Death, a plague that annihilated perhaps as much as a third of the population. Old Friesian derived from an early Indo-European language group and became a Low German dialect that is still spoken. The Icelandic deyja and the Danish doe are cognates. Die and dying became established words in the English language during the plague years.
Poetic imagination soon turned "dying" to additional uses. "Die-away ditties," popular with Renaissance singers, were songs that ended in a subtle and suggestive manner. Elizabethan poetry often played with dying as a sexual metaphor, and lovers routinely spoke of dying when separated from their beloved.
Metaphorical uses persist, sometimes to the confusion of young children who hear that a runner at second base or a car battery has died. Members of a dwindling group are also characterized in this manner: "Phonograph record collectors are a dying breed."
Because of the "sensitive" nomenclature fostered in the early twentieth century by unctuous funeral directors, the literal usage of the term "dying" gave way to euphemisms such as "expire," "pass away," or "go to one's reward." By the middle of the twentieth century, dying and death had become taboo words in the United States and Europe, even in physicians' consultations with families or patients .
Communication started to improve with the emergence of the death-awareness movement in the 1960s, which introduced palliative care, death education, and other advances. It was a breakthrough to have books published with "death" and "dying" in their titles. This period of more direct and open communication did not long endure, however. The medical establishment, although slow to give priority to the care of dying people, became more active on this front. But the term dying was still deemed too abrasive— terminal illness is the preferred clinical euphemism, connoting an aggregation of symptoms rather than a real, suffering human being in the twenty-first century.
End-of-life (EOL) has become another key term. Unlike terminal illness, EOL calls attention to the many sources of potential concern and support. Decisions about financial affairs and funeral arrangements, for example, are among the included topics. Nevertheless, EOL has also become the professional and bureaucratic rhetorical surrogate for dying person.
Perhaps the most useful addition to current terminology has been end-phase of life, the period in which major body systems have failed and the individual has become dependent on others for total care. The term is more specific than either dying or terminally ill. Some terminally ill people can continue with their family activities and careers, and look after much of their own care. People in the end-phase have lost much of their functional capacity and are likely to be receiving specialized care in the hospital or at home.
The Dying Person in Society
The onset of ill health is often accompanied by a change in social status, however temporary and reversible upon recovery. Lowered expectations or even outright aversion—if the condition is disturbing or contagious—account for much of the patient's lowered social esteem—one that either disturbs (e.g., a burn victim whose injuries are painful for the viewer as well as the patient) or is feared as contagious. A similar reduction in social standing affects those who cannot make a full recovery—in such cases of the "chronically impaired," the patient is often shunted to the periphery of social influence and interaction.
Research and observation have clearly established that society tends to isolate dying people. Both professionals and nonprofessionals spend less time with dying people, relying on various evasive patterns of behavior. The growing awareness that dying people often experience social isolation and loneliness became a strong motivation for the development of palliative care and death education. Even today, however, the status change to "dying person" often signals a major alteration in the individual's relationship with society.
When does dying begin? This question becomes important in light of the major changes that often occur when a person is regarded as a dying person. In a strict sense, it could be said that given the mortal nature of humans, dying begins at birth. But such an abstract philosophical perspective yields little concrete guidance in confronting the suffering and fears of real humans whose demise is not a distant endpoint but an imminent prospect. Neither is there much practical utility in the equally broad notion that dying begins with the onset of aging, especially because many people enjoy good health well into old age.
In the most common formulations, dying begins when a fatal condition is recognized by a physician; the patient is informed of the fatal condition; the patient realizes and accepts the facts; everybody in the situation (e.g., family, friends) realizes and accepts the facts; and nothing more can be done to reverse the condition and preserve life.
Each of these possibilities has its own set of implications. For example, a person might incur a life-threatening condition but remain unaware of it because of "silent" or seemingly trivial symptoms (i.e., digestive problems, fatigue)—hence the victim's social image and self-image are not those of a dying person. Communication and interpretation are crucial to all the other possibilities. One person might suspect that a condition is fatal but resist that conclusion pending a physician's confirmation, while another might resist the reality of impending death no matter how bluntly the physician conveys it; sometimes this denial might come from family members rather than the patient. It is not unusual for some time to elapse until physician, patient, and family all accept the prognosis.
The dying person is vulnerable to the additional stress of familial discord, which often takes the form of mixed messages, with some family members urging a pitched battle against the disease and others counseling resignation and acceptance in the face of the inevitable. Physicians are often caught in the middle of such family dissension, especially if the relatives' attitudes shift with each new turn in the patient's condition. In some cases a doctor's zeal in pursing every conceivable treatment strategy, no matter how difficult or futile, can override the patient's own wishes to abandon an all but fruitless struggle and face the end placidly.
Caregivers often emphasize the importance of open communication and trust. Several studies have revealed that interactions with the dying person are often hedged by fears of excessive bluntness toward the patient and the relatives' anxiety about their own mortality. Such circumspection leads to patients and relatives to deny to each other the knowledge that each possesses privately about the terminal nature of the illness. In the mutual-pretense situation, for example, both the dying person and the caregiver or family member know the truth, but both also act as if they are not aware in order to spare each other's feelings. Experts suggest that it is more useful to attune to the dying person's immediate needs instead of applying a predetermined resolve to skirt or confront sensitive topics. Sometimes dying people want to discuss heartfelt feelings about impending death, while others relish diversionary gossip. Experienced caregivers often encourage relatives to view the dying person as a human being rather than as a "case."
The Medical Side of Dying
"We die the death of our disease," observed the poet Rainer Maria Rilke. This statement echoes clinical realities. The patient's overall life history and personal disposition can have as great an impact on the dying process as the nature of the illness. The physician Sherwin B. Nuland offers illuminating examples of the influence of biomedical factors: "When a would-be suicide hooks up one end of a hose to an automobile's exhaust pipe and inhales at the other, he is taking advantage of the affinity that hemoglobin has for carbon monoxide, which it prefers by a factor of 200 to 300 over its life-giving competitor, oxygen. The patient dies because his brain and heart are deprived of an adequate oxygen supply" (Nuland 1994, p. 159).
What is significant about this pathway to death is the rapid loss of consciousness and therefore the inability to communicate or change one's mind. By contrast, some people recover from cancer or go into long periods of remission where they are at risk of terminal illness but not really dying. Should the cancer start on a terminal course, there is not usually a rapid loss of consciousness. Unlike the carbon monoxide suicide, the person with terminal cancer has time to be with friends and relatives, look after business matters, and reflect on life's values and meanings.
The end phase of life also differs markedly from that of the suicidal person attached to an exhaust tube hose. A prolonged struggle with cancer is likely to leave the patient emaciated and weak, subject to infection because of a compromised immune system—hence pneumonia, abscesses, and infection often become the immediate causes of death. Blood pressure drops, and various organ systems fail. During this "lingering trajectory," family members can provide emotional support to one another as well as to the dying person.
Kidney failure also tends to have a lingering terminal course as excess potassium and other substances build up in the body, compromising brain functioning and often leading to a coma and then fatal cardiac instability. As Nuland observes, "Only rarely are there any last words or deathbed reconciliations" (1994, p. 54). There is a need to be with the dying kidney patient while there is still time for consoling and memorable interactions. In these and many other instances, the nature of the disease—and the type and quality of care—are usually decisive factors in the course of the dying process.
Conditions That Resemble Dying
The supposed uniqueness of the dying process engenders a good deal of the anxiety and confusion that typically attend it. Actually, many aspects of the process are akin to a wide array of feelings and experiences familiar to all from everyday life. The lessons gleaned from such similarities can aid in an understanding of the stress experienced by dying people. Here are some typical experiences of this kind:
- • Restricted activity— "I can do less and less";
- • Limited energy— "I must conserve what is left of my strength";
- • Body image— "I don't look and feel like the person I used to be";
- • Contagion— "You act like you might catch something bad from me";
- • Disempowerment— "I have lost the ability to influence you";
- • Attributional incompetence— "You think I can't do anything right any more";
- • Ineffectuality— "I cannot make things happen the way I want them to";
- • Stress response— "My defenses have become so intense that they are causing problems of their own";
- • Time anxiety— "I fear it is too late to do all I must do";
- • Loss and separation— "I am losing contact with everything that is most important to me";
- • Disengagement— "I feel ready to withdraw from interactions and responsibilities";
- • Journey— "I am going some place I have never been before";
- • Closing the book— "I am doing everything for the last time; it will soon all be over";
- • Performance anxiety— "How am I doing? How do you think I am doing?"
- • Endangered relationship— "I fear I am losing your love and respect";
- • Struggling brain— "My mind is not working as it should. The world is slipping away from me";
- • Storytelling— "I must come up with the best possible story of all that has happened, is happening, and will happen."
These experiences of living can help individuals prepare for the experience of dying, which is more than restricted activity, limited energy, and doom-laden depression. Like many other key formative experiences, it is also the adventure of passage from the known to the unknown.
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