2-13 THE TERMINALLY ILL PATIENT

LEARNING OBJECTIVE: Evaluate the needs of the terminally ill patient.

The terminally ill patient has many needs that are basically the same as those of other patients: spiritual, psychological, cultural, economic, and physical. What differs in these patients may be best expressed as the urgency to resolve the majority of these needs within a limited time frame. Death comes to everyone in different ways and at different times. For some patients, death is sudden following an acute illness. For others, death follows a lengthy illness. Death not only affects the individual patient; it also affects family and friends, staff, and even other patients. Because of this, it is essential that all healthcare providers understand the process of dying and its possible effects on people.

Individual’s Perspective on Death

People view death from their individual and cultural value perspectives. Many people find the courage and strength to face death through their religious beliefs. These patients and their families often seek support from representatives of their religious faith. In many cases, patients who previously could not identify with a religious belief or the concept of a Supreme Being may indicate (verbally or nonverbally) a desire to speak with a spiritual representative. There will also be patients who, through the whole dying experience, will neither desire nor need spiritual support and assistance. In all these cases, it is the responsibility of the healthcare provider to be attentive and perceptive to the patient’s needs and to provide whatever support personnel the patient may require.

Cultural Influences

An individual’s cultural system influences behavior patterns. When we speak of cultural systems, we refer to certain norms, values, and action patterns of specific groups of people to various aspects of life.

Dying is an aspect of life, and it is often referred to as the final crisis of living. In all of our actions, culturally approved roles frequently encourage specific behavior responses. For example, in the Caucasian, Anglo-European culture, a dying patient is expected to show peaceful acceptance of the prognosis; the bereaved is expected to communicate grief. When people behave differently, the healthcare provider frequently has difficulty responding appropriately.

Five Stages of Death

A theory of death and dying has developed that provides highly meaningful knowledge and skills to all persons involved with the experience. In this theory of death and dying (as formulated by Dr. Elizabeth Kubler-Ross in her book On Death and Dying), it is suggested that most people (both patients and significant others) go through five stages: denial, anger, bargaining, depression, and acceptance.

The first stage, denial, is one of nonacceptance. “No, it can’t be me! There must be a mistake!” It is not only important for the healthcare provider to recognize the denial stage with its behavior responses, but also to realize that some people maintain denial up to the point of impending death. The next stage is anger. This is a period of hostility and questioning: “Why me?” The third stage is bargaining. At this point, people revert to a culturally reinforced concept that good behavior is rewarded. Patients are often heard stating, “I’d do anything if I could just turn this thing around.” Once patients realize that bargaining is futile, they quickly enter into the stage of depression. In addition to grieving because of their personal loss, it is at this point that patients become concerned about their family and “putting affairs in order.” The final stage comes when the patient finally accepts death and is prepared for it. It is usually at this time that the patient’s family requires more support than the patient. It is important to remember that one or more stages may be skipped, and that the last stage may never be reached.

Support for the Dying

Despite the fact that we all realize our mortality, there is no easy way to discuss death. To the strong and healthy, death is a frightening thought. The fact that sooner or later everyone dies does not make death easier. There are no procedure books that tell healthcare providers “how to do” death. The “how to” will only come from the individual healthcare provider who understands that patients are people, and that, more than any other time in life, the dying patient needs to be treated as an individual person.

An element of uncertainty and helplessness is almost always present when death occurs. Assessment and respect for the patient’s individual and cultural value system are of key importance in planning the care of the dying. As healthcare personnel, we often approach a dying patient with some feelings of uncertainty, helplessness, and anxiety. We feel helpless in being unable to perform tasks that will keep the patient alive, uncertain that we are doing all that we can do to either make the patient as comfortable as possible or to postpone or prevent death altogether. We feel anxious about how to communicate effectively with patients, their family, or even among ourselves. This is a normal response since any discussion about death carries a high emotional risk for the patient as well as the healthcare provider. Nevertheless, communicating can provide both strength and comfort to all if done with sensitivity and dignity, and it is sensitivity and dignity that is the essence of all healthcare services.