How does a person respond to the process of dying?

Relatively little is known about psychological responses to dying. Kübler-Ross, in On Death and Dying (1969), described the reactions in terms of denial and isolation, anger, bargaining, depression and acceptance. This framework provided helpful new insights into the emotions of those facing death, and emphasized that emotional distress is normal.

Dying (like other life crises) causes varied emotions. Each can produce a range of responses (psychological defenses) and these can change with time. The extremes of these responses can be classified as “open” or “closed”. A dynamic (changing) model of coping responses is therefore more helpful.

Emotion  or Need Closed Response Open Response

1. Fear

Denial Facing fears
2. Anger  Guilt, blame Fighting the illness
3. Sadness Misery Grieving, adjusting
4. Dependency Helplessness Participation
5. Search for meaning Hopelessness  Seeking sense of purpose

This dynamic (non-sequential) model emphasizes that a person often has several simultaneous emotions to cope with, and that the methods of coping are not necessarily fixed, but can vary (sometimes from day to day) in degree of openness.

The dynamic model is task-orientated and can help to pin-point a particular area of difficulty. It can then facilitate coping by encouraging a shift towards openness. (While closed responses are effective for some people at some times, they are more likely to become maladaptive, and to result in anxiety or depression.) (see Anxiety, Depression)

Mrs. M.F., a woman of 42 with four teen-age children, had advanced cancer of the colon. She was referred to the hospice out-patient clinic for pain control. She looked frightened and anxious. Her distress about her pain seemed to exceed the abdominal pain she described, which was already quite well controlled with moderate analgesics. The doctor asked if she was afraid. Mrs. M.F. talked of being frightened for  her children’s futures. She talked about the children, who were in their late teens and almost independent. The doctor suggested that her emotions about leaving the children were really sadness (and that she and her family were grieving for their lost future), and did not account for her apparent fear. With great difficulty, Mrs. M.F. then began to talk of her childhood, when an elder brother died in severe pain from bone cancer. They discussed this, and her own current fears of a painful death. Following the discussion she became visibly more relaxed and in control.

A person’s coping strategy (the overall pattern of coping responses) will depend on attitudes, family experiences, previous crises, level of support, degree of illness, and current emotions and problems.

Each coping response is like a door – open, closed, or partly open. Very rarely can a person keep all doors open all the time, nor is this necessarily healthy. Closed coping responses are not necessarily harmful. (Any coping response that allows a person to function without harming others, and to adjust to illness, should be encouraged.) Most people keep some doors open, and others partly closed, to maintain equilibrium. An open response in one area can facilitate openness in others.

“Good copers” tend towards open responses. They tend to be optimistic, resourceful, willing to express feelings, knowledgeable about their illness, socially well supported, and to have both a sense of purpose and realistic short-term goals.

«  Strong emotions are normal, and varied coping strategies are normal.

«  Coping strategy may need to change as the situation changes.

A patient may cope very well at first by adopting the sick role and becoming excessively dependent, but the closed response of helplessness may become maladaptive in time (if, for example, family members become exhausted and resentful). The caring team might then encourage a change in strategy by suggesting a family meeting, by discussing with the patient things he can do to help himself, and by supporting the patient as he accepts more responsibility for his own health.

A patient may cope throughout his illness by complete denial, enabling him to function (although depriving himself of the confidence that can come from facing and over coming fears). But the closed response of denial can become maladaptive, if it causes increasing anxiety or when fears are masked by distracting activities (such as heavy drinking or irresponsible spending) that damage the family. The patient then needs help in facing his fears (by means of encouragement, support and communication). Denial of fears may resolve as the illness progresses and as imagined fears (concerning the future) diminish. (see Denial)

«  Major modification of coping responses is usually only possible if a crisis (a temporary inability to cope) has occurred. (see Crisis Theory)

«  It is possible to improve a patient’s ability to cope. “Most patients cope better when they experience friendly professional interest that is sincere and sustained.” (Thurstan Brewin)

The following can facilitate coping:

  • Control symptoms and rehabilitate

  • Explain and discuss

  • Listen (and gently encourage openness)

  • Encourage family communication

  • Allow patient and family participation in care

  • Offer occupational therapy

  • Offer support in crises (see Support)

  • Teach relaxation, visualization

  • Encourage realistic short-term goals

  • Encourage positive thinking

  • Address spiritual issues (see Spiritual Pain)

It is always possible for carers to be both realistic and optimistic. Encouragement (“to fill with courage”) can be extremely helpful. Focus on the strengths of the patient.

Your words can be powerfully therapeutic:

  • “You are doing very well at the moment.”

  • “I admire the way you are handling this.”

  • “Look at what you have already coped with.”

«  Emotions occur in no particular sequence, may coexist simultaneously, and may recur at any time.

Commonly encountered emotions in terminally ill persons are:

  1. Fear

  2. Anger

  3. Sadness

  4. Dependency

  5. Searching for meaning

1 . Fear (with episodes of anxiety) is almost universal in patients with advanced illness. The “door” to fear can be opened and closed. A patient may realistically discuss one aspect of his illness one day, but deny it the next. Facing and overcoming fears, usually step by step over a period of time, brings relief and an increase in confidence and self-esteem. A certain amount of denial usually facilitates gradual acceptance without the patient being overwhelmed by fear, but the closed response of complete denial demands constant psychic energy (leaving less energy for other things). Complete denial can occasionally result in extreme personality changes. For example, one patient became manic and talked continuously of how happy she felt, in order to block other thoughts. Another patient refused to speak for the last three weeks of her life. (see Denial)

2. Anger is common, but not universal. (For example, a patient tormented by chronic hypochondria can initially feel relief at a firm diagnosis of serious illness.) Anger is a normal response. Its expression can be positive and helpful, or negative and destructive. Anger often abates when it is expressed. Anger can also be internalized (“I feel so useless!” - causing guilt or depression) or transferred (blaming the carers). The energy created by anger can sometimes be usefully channeled (into fighting the illness, investigating treatment options, or focusing on complementary approaches to maintaining health). These all restore a feeling of control (“using your energy to fight the illness”). Taken too far these responses can become maladaptive (for example, visiting many medical centers at great expense to confirm the diagnosis, or searching unrealistically for a new cure). (see Spiritual Pain)

3. Sadness is appropriate. If it is not acknowledged it causes misery and sometimes clinical depression (including low self-esteem). Adjusting to losses takes time and involves a process of grief. Normal adjustment may involve withdrawal for a time and this reaction can resemble depression (but self-esteem remains normal). The dying person needs to be able to share his feelings of sadness and begin to adjust to his losses. (see Adjustment Reactions, Grief) 

4. Dependency is the hardest aspect of illness for many people. Some patients cope by adopting a passive sick role, but for many the helplessness of dependency brings frustration and depression. Focusing on rehabilitation (after symptoms are controlled) can boost morale. As strength and function fade, a patient can remain active and in control by deciding how to relinquish responsibility, by handing over his roles and duties, and by seeing dependency as a role in itself. Even a totally dependent person can still have an important role in a family or community and can still help others. We are all interdependent. (see Occupational Therapy, Rehabilitation)

5. The search for meaning, to find some sense of purpose in living and dying, is an important quest. (Failure to find some meaning in suffering often leads to hopelessness and depression.) The purpose may be to help or contribute in some way, to leave something behind, or to prepare family members for their changed futures. It is often helpful for a patient to have realistic short-term goals. As death approaches goals will change. The dying patient tends to focus on the present, to recall and then relinquish the past, and to begin to let go of the strong instinct to survive. He often prepares himself for death, through gradual withdrawal from life. Some people derive their sense of purpose from their religious beliefs, and religious support may be especially important as death approaches. (see Spiritual Pain)

The author and publisher have taken precautions to ensure that the information in this book is error-free. However, readers must be guided by their own personal and professional standards of good practice in evaluating and applying recommendations made herein. The contents of this book represent the views and experience of the author, and not necessarily those of the publisher.

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