Introduction A terminal illness cannot be cured and, therefore, is recognized by the person dying as a catastrophic threat to the self, to the individual’s relationships, and to the body. In terms of the model of coping proposed by Richard Lazarus and Susan Folkman,
death
is the perceived threat or stressor causing stress and is evaluated by primary appraisal; the response or coping strategy depends on the person’s secondary appraisal of available physical, psychological, social, and spiritual resources. The relationship between the perception of threat and the coping response is dynamic in that it changes over time. For example, the threat of death varies with physical or psychological deterioration and calls for changing strategies during the period of dying.
Anxiety and fear are typical of any crisis; however, when faced with the overwhelming crisis that death poses, a dying person is flooded with death anxiety or mortal fear of dying. Two classic views of death anxiety are Freudian and existential. Sigmund Freud
believed that it was impossible to imagine one’s own death and that “death anxiety” is really fear of something else, whereas the existentialists believe that awareness of mortality is a basic condition of human existence and is the source of death anxiety. In 1996, Adrian Tomer and Grafton Eliason offered a contemporary “regrets” model, where death anxiety is a function of how much one regrets not having accomplished what one had hoped to accomplish in light of the time left. A major criticism of their work is that achievement takes precedence over social relationships and other sources of meaning. In 2000, Robert J. Kastenbaum proposed an edge theory, where the response to extreme danger is distinct from the ordinary awareness of mortality. He suggested that death anxiety is the consequence of a heightened awareness of potential disaster at the edge of what is otherwise known to be relatively safe.
Thanatology, the study of death and dying, focuses on the needs of the terminally ill and their survivors. Some thanatologists distinguish between fear of the process of dying and fear of the unknown at death. For example, the Collett-Lester Scale, established in 1994, operationalizes these ideas by offering four subscales: death of self, death of others, dying of self, and dying of others. A major problem with studies of death anxiety is that researchers typically employ self-report questionnaires that measure conscious attitudes. In general, the construct validity of questionnaires is reduced when anxiety is confounded with unconscious denial or when death is confounded with dying.
Hospice and Palliative Care From the beginning of the twentieth century until the 1970s, Americans with terminal illnesses usually died in hospitals. Medical treatment focused on pathology; control of pain with narcotics was limited, as most physicians were worried about consequent drug addiction. Efforts to save lives were machine-intensive and often painful. The psychological, social, and spiritual needs of the person were not as important as the heroic effort to preserve life at any cost. When Dame Cicely Saunders, a British nurse and physician, opened St. Christopher’s Hospice in London in 1967, she introduced holistic reforms that treated both the dying person and his or her family and included regular administrations of morphine for the amelioration of pain. It was discovered that control of pain is better when dosing at regular intervals and that the total dosage may be less than if drugs are offered only in response to severe, acute pain. Saunders was a profound inspiration to the international hospice movement, as well as to the new field of palliative medicine. (The goal of palliative care is to relieve pain and symptoms and is different from traditional, curative care.)
Initially, hospices were based in hospitals; however, toward the end of the twentieth century, home-based care became common. A full-service program provides an interdisciplinary team of a physician, social worker, registered nurse, and pastor or counselor; round-the-clock care is available. Furthermore, after death, support services are offered to grieving families. In the United States, the National Hospice Reimbursement Act of 1983 offered financial support for full-service hospice care. A local hospice is an important coping resource for someone who chooses to forgo traditional medical treatment. It offers a means for preserving some control of the environment, as well as for maintaining personal dignity. Most important, a peaceful, pain-free death is possible.
Stages of Dying About the time that the international hospice movement was gaining momentum, an important book titled On Death and Dying (1969) was published in America by the psychiatrist Elisabeth Kübler-Ross. She presented transcripts of interviews with dying patients who were struggling with common end-of-life concerns. What gripped American readers was her call for the treatment of dying people as human beings and her compelling, intellectual analysis of dying as a sequence of five stages: denial and isolation, anger, bargaining, depression, and acceptance. However, according to Robert J. Kastenbaum, there is no real empirical verification of her stage theory. Specifically, dying need not involve all stages and may not proceed in the sequence described by Kübler-Ross. Therapists point out that depression and anxiety are ever present but change in intensity—sometimes manageable, sometimes overwhelming. Although theoreticians argue about the scientific status of Kübler-Ross’s stage theory, clinicians use her ideas to tailor therapeutic regimens depending on the current needs of their patients. One way to evaluate current status is in terms of how the patient is coping with various threats and challenges posed by dying.
The “stages” of dying may be thought of as emotion-focused coping behaviors for responding to death, a stressor that cannot be changed. In contrast, problem-focused coping behaviors are appropriate when an aspect of the stressor can be changed. When a dying mother is too weak to care for a child, she copes with the problem of her weakness by arranging for child care. When a husband is worried about the financial security of his wife, he draws up a will.
Denial is usually the first response to the shocking news of terminal illness. Denial of one’s impending death is a way of coping with the threat of losing one’s self and key relationships. The loss of one’s self is characterized by the loss of what one values as personally defining. For example, death implies the ultimate loss of strength or of the capacity for meaningful work and ushers in a radical, unwanted change of self-concept. However, denial allows an acceptance of the facts at a slower, more manageable rate and is a way to cope emotionally with death anxiety.
Anger is a common venting response once denial is no longer consuming. (Other venting strategies include crying, yelling, sarcasm, and recklessness.) The private or public expression of anger is evidence that the person has moved beyond complete denial toward the recognition of death as a real threat.
Bargaining with fate or some higher power is a futile but common coping strategy, whereby the person tries desperately to restore body integrity and self-concept. The efforts are sometimes heroic, as when a person has accepted that he or she is dying but tries to maintain some version of prior meaningful activities. The scope is limited and the places may change, but relationships and activities critical to self-concept continue for as long as possible.
Depression is marked by sorrow, grief for current and future losses, and diminished pleasure. It is different from the anxiety that arises when a person fears that what is necessary for an intact self is jeopardized; in contrast, depression occurs when the dying person is certain that he or she has lost what is necessary. Depression is the most common psychological problem in palliative-care settings. However, when ordinary depression becomes major, the treatable condition is often unrecognized and patients suffer needless emotional pain. Minor depression, an expected coping behavior, may be adaptive, whereas major depression is maladaptive and requires medical intervention.
Acceptance of a terminal condition is viewed by many clinicians as a desired end-state because the possibility of a peaceful death comes with acceptance. The person has not given up emotionally but has reached a point of choosing not to struggle for survival. Therapists of various kinds interpret acceptance in the light of a particular worldview or theoretical paradigm. For example, the transpersonal counselor sees acceptance as evidence of an intrapsychic transformation of the self to a higher level of consciousness.
Other Coping Strategies Dying presents many threats and challenges, including psychological and spiritual distress, pain, exhaustion, loss of independence, loss of dignity, and abandonment. In addition to depression and anxiety, guilt is a response to believing that one must have been a bad person to deserve such a fate or that one risked one’s health in a way that brought on the illness. Sometimes people feel guilty because of anger and sarcasm vented on hapless family members, friends, helpers, or a higher power. Thoughts of suicide may occur when depression is severe enough or if the pain is intolerable. Not all people suffer all these assaults, but each requires a strategy for coping.
It is not uncommon for friends and relatives to pull away from the dying person because of their own anxiety and discomfort. Witnessing the physical and emotional distress of a valued person poses a threat to successful, day-to-day management of mortal fears; one way to cope is by ignoring the dying. Unfortunately, physical or emotional distancing causes dreadful isolation and a sense of abandonment just when social support is most critically needed. The terminally ill in such a predicament may cope by turning to a pastoral counselor, therapist, self-help group, or local hospice.
Each type of therapist has a different focus. A psychoanalyst might encourage frank discussions of fears and anxieties. A cognitive behavioral therapist might focus on changing maladaptive behavior by modifying negative thought patterns. A humanistic-existentialist might encourage a life review to help consolidate the patient’s perceptions of the meaning of life and as a way to say “good-bye.” A transpersonal counselor might focus on facilitating a meaningful transformation of self in preparation for death. A primary goal of therapy of any kind with dying patients is to promote physical and psychological comfort. Often, the therapist is an advocate acting as a liaison between the patient and the hospice, hospital, family, or friends. The therapist may provide helpful psychoeducational interventions, such as alleviating distress about an upcoming medical procedure by informing the patient about the rationale for the procedure, the steps involved, the predictable side effects, and the prognosis or forecast for the outcome. When the therapist also educates the family, the quality of their support is enhanced, thereby improving the well-being of the patient.
Self-Help Groups Self-help groups provide significant mutual support to the terminally ill and to those in mourning. They are available in professional and nonprofessional settings. They are usually composed of peers who are in a similar plight and who, therefore, are familiar with the depression, anxiety, and guilt associated with dying. Access to a new, primary group counteracts common feelings of alienation and victimization by offering the opportunity for meaningful social support and information. Mutual disclosure reduces feelings of isolation and abandonment by building a community of peers. Sharing successful strategies for coping with secondary losses triggered by terminal illness restores hope. (For example, group members may know how to cope with the disfigurement of mastectomy or with confinement to a wheelchair.) Group participants also encourage one another to be active partners in their own medical care. Unreliable patterns of communication and reluctance to talk about dying are common outside the group; however, group members talk to one another openly, thereby reducing the dismay associated with patronizing exchanges with doctors and nurses or the silence of family and friends.
Religious and Spiritual Coping Psychologists emphasize the ways in which adversity may be conquered or controlled, but not every stressor is controllable. Certainly, dying brings into sharp relief the fact that humans are ultimately powerless in the face of death. At the end of life, people often turn to religion or spirituality for answers as to the purpose of their lives, the reasons for suffering, the destination of their souls, the nature of the afterlife—whether a life everlasting exists. Coping theorists may reduce the function of religion to “terror management,” but others believe that the experience of the sacred cannot be understood empirically and that religion is more than an elaborate coping mechanism.
The psychologist of religion Kenneth I. Pargament studied the relationship between religion and coping. He defined religion functionally in terms of a search for significance in the light of the sacred. He described a typical Christian belief system involving the event (in this case, death), the person, and the sacred. Core beliefs are that God is benevolent, the world is just or fair, and the person is good. Dying jeopardizes the balance of this belief system; to cope, people turn to religious reframing as a way of conserving the significance or value of their core beliefs. For example, people facing a seemingly pointless death reframe its significance—death becomes an opportunity for spiritual growth or enlightenment; this preserves the beliefs that the person is good and that God is benevolent. Others reframe the nature of the person as being sinful; otherwise, why does suffering exist? The result is that belief in a just world is preserved. Some reframe their beliefs regarding the sacred and consider God as punishing. However, several researchers have found that only a small proportion of people attribute their suffering to a vengeful, punishing God. Another way to reframe the nature of God is to reconsider his omnipotence. People may conclude that a loving God is constrained by forces in nature. This reframed belief preserves the idea that God is good.
Dying is not always the occasion for spiritual crisis; people of deep Christian faith find solace in their relationship with God or with their understanding of the transcendent. The psychiatrist Harold G. Koenig reports in The Healing Power of Faith (1999) that faith, prayer, meditation, and congregational support mitigate fear, hopelessness, and the experience of pain. For people committed to a Christian religious or spiritual belief system, God or spirit is a source of peace and hope while dying.
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