SPIRITUAL PAIN

“The spiritual aspects of an illness concern the human experiences of sickness (or “dis-ease”) and the search for meaning within it.” (Peter Speck)

«  Symptom control has to precede spiritual support. A person cannot think about the meaning of his life while he has pain or keeps being sick.

Spiritual anguish is universal as people face death. Dying can involve extreme loneliness, sadness and fear (as well as physical distress).

Spiritual support occurs in the context of an equal human relationship which allows a person to work through his feelings of anger or hopelessness, and achieve a sense of integration and a sense of responsibility. In a secure environment, free of physical suffering, where a person feels accepted and not completely alone, it is possible to come to terms with death and view it not simply as a giving up out of weakness, but as a letting go out of strength.

Recognizing spiritual problems – It is easy to miss or to ignore spiritual pain. A common example is the patient who says "I seem to be wasting away", or "I’m not eating enough." It is tempting for the doctor to respond by asking about diet or dysphagia, when it is fear of not existing that the patient is struggling to express.

There may be a sense of:

• Unfairness (Why me?)

• Unworthiness (I don’t want to be a burden.)

• Hopelessness (What’s the point?)

• Guilt (It’s a punishment.)

• Isolation (No-one can really understand.)

• Vulnerability (I’m a coward.)

• Abandonment (God doesn’t care.)

• Punishment (But I’ve led a good life.)

• Confusion (Why does God allow suffering?)

• Meaninglessness (My life’s been wasted.)

All these things are made worse by physical suffering, social isolation, practical worries or unfinished emotional business.

Spiritual anguish can be considered in terms of:

• The past (painful memories, guilt)

• The present (isolation, anger)

• The future (fear, hopelessness)

Spiritual “work” can be considered in terms of:

• Releasing the past

• Balancing hope and fear

• Relinquishing responsibilities

• Preparing for death

Reminiscence as therapy – Remembering the past can bring new sense to the present. It can be very helpful at the right moment to say “Tell me your life story.” One technique is to record and transcribe conversations about childhood and early life. Encouraging reminiscence has a number of benefits. It is usually enjoyed. It provides companionship and helps to overcome the problem of boredom. It improves self-esteem and helps a person to feel recognized as an individual. It helps in distinguishing the causes of emotional reactions (some of which are related to past events more than present ones). It can increase confidence as a person is reminded that he overcame past difficulties. It helps to integrate the patient’s present experience of illness into the context of his whole life. Finally, the healing of painful memories can occur in the context of a sensitive relationship of mutual trust. Acceptance from another can increase self-acceptance.

«  A useful way of encouraging reminiscence is by using the patient’s family photograph album.

Integration can be both internal (through dreams or sorting memories) and external (being or becoming a useful part of something bigger than oneself). Integration is never complete. The main thing is to make some progress and not approach death by disintegrating. Almost everyone facing death searches for some way of making sense of his situation. This has been called “autobiographical reconstruction”. One young man with a bone sarcoma which started in his left arm believed it had been partly caused by his mother’s desertion of the family when he was 13, leaving him to “mother” to his younger brother and sister and straining “my left side, which is the feminine side of the body”. Listening patiently to these personal searchings (and putting aside our own scientific notions) is part of spiritual support.

Companionship is an essential part of spiritual support. Spiritual support can only occur through a meaningful human relationship. This is not necessarily time-consuming. The key qualities of openness, sensitivity, and a willingness to be yourself and to listen can be conveyed within minutes.

Establishing a relationship with someone who is very ill can be difficult, but there is more to spiritual support than talking. Just sitting with someone for a while conveys a powerful message. Regular prayer and/or meditation greatly increase our capacity to listen. They also put us more in touch with the metaphysical, unknowable part of life that is an important concern for many people who are facing death. (see Listening)

«  A good companion talks of life as well as death. Above all, a good companion knows how to listen.

Professionals working with dying persons sometimes talk of the importance of “coming to terms with our own mortality”, but our own honest fear of dying can be an essential element in this relationship of spiritual support. We must never minimize the dread that some people have of death. Compassion means “suffering with”.

Spiritual support is a two-way process. Patients and families facing death very often provide spiritual support for the professional carers around them. When this occurs we should say so. It boosts morale. One of the rewards for professional carers is seeing the difference that true acceptance and companionship can make to a person approaching death.

Anger – We should expect to encounter anger, which occurs when a person is threatened, frustrated, helpless or rejected. Anger is a common reaction to advanced disease, both for patients and family members. Anger is also a common response to grief. Many people find anger less uncomfortable than sadness. The professional management of anger (in self and others) is important, because anger can be either creative or destructive. Anger is close to love. (The opposite of love is not anger, but indifference or calculated hatred.) Suppressed anger distorts relationships and can cause depression. Anger can be a positive force for change – it can be used creatively to improve communications.

Anger is commonly projected or displaced (onto situations, doctors, nurses, family members, God). The person may not be fully aware of the true source of the anger. Anger can be associated with bodily arousal (the adrenalin response of fight or flight), and this has to be allowed to subside before feelings can be discussed.

Acknowledge anger. It can help to say “All this would make me feel very angry.” Once anger is acknowledged and expressed it will subside. Analyze the problems and frustrations, not the anger itself (ask “What?” and “When?” not “Why?”). The source of anger may be linked to earlier life experiences (childhood rejection by parents, for example).

Fear almost always relates to the imagined future rather than the reality of the present. It can be helpful to reality test fear by asking "What is the worst thing that could happen?" Even if the person says "I might die" it is still possible to reduce fears by discussion. Is it fear of the process of dying or what happens afterwards? Is it fear of being alone or being buried alive? Professionals often believe that discussing fears will make them worse, whereas sharing thoughts and feelings always reduces anxiety. Fear may be disguised as denial, insomnia, nightmares or attention-seeking behavior.

When patients mention dreams or nightmares it is important to ask for details, not to analyze, but as a way of encouraging patients to discuss the feelings they had when dreaming. It sometimes becomes possible to talk of fear in terms of the dream, even if the patient cannot express his fears about the disease. Reviewing and verbalizing a dream can be an extremely helpful step in the process of adjusting to change.

Mr. E.J., age 50, with advanced bowel cancer, was living alone at home, at 152 Sudborough Road. On one visit to the hospice out-patient clinic (as he became much weaker) he said, “I have some important questions to ask you this time.” He wanted to discuss in detail what would happen if he could no longer manage at home. This was a noticeable change to his previous attitude of beating the cancer and getting on with a vigorous life-style. During the discussion he said, “Something strange happened the other day.”

Encouraged to continue, he described failing asleep one afternoon, and waking in the early evening. He said, “For the next two hours I knew only two things for certain. I was not E.J. and I did not live at 152 Sudborough Road. It was frightening. Gradually it began to comeback.” He went on to say, “I’ve told all sorts of people about my dream, and no-one can explain it.” After a pause he added with a sigh, “I’m just not myself at the moment.”

The important realization that he was no longer his old self helped him to begin to make important and realistic plans for his future.

The changing nature of hope – In advanced disease hope of cure becomes inappropriate. This does not mean that patients should not go on hoping for a cure. It means it should not be their main hope. Becoming obsessed with hope for cure in the face of advancing disease is inappropriate and becomes disheartening.

Realistic and appropriate hopes may be:

• To walk again

• To get home for a time

• To feel better tomorrow

• To be remembered

• For the family to cope

• For stronger trust in God

• For a future beyond physical existence

It is often helplessness that makes people feel hopeless. If people are given back some control of their situation, they can often cope again and feel more hopeful. The sick person needs realistic short-term goals and projects (a weekend trip, a family anniversary, knitting for an expected grandchild). Leaving behind skills is a very therapeutic way of remaining hopeful. It helps with the difficult business of role adjustment. Even someone who is weak and ill can give instructions and enjoy seeing someone else’s achievements.

Patients have the greatest confidence in professionals who allow for hope and who join in the hoping. This does not mean we should tell lies. When we realistically face up to the issues of the moment, provide what support we can, and restore control to the patient as far as possible, then there is nothing wrong with adding our hope to theirs – indeed it is always helpful and encouraging.

A sense of completion is very important. It is easier to leave a life that is tidied up. This includes making a will, handing over responsibilities and tackling any unfinished emotional business. It is a time to take stock and look back on what has been achieved and left behind. It is often a great relief to the patient when someone finally has the courage to ask if he has made a will. Making a will usually brings relief and reduces anxiety. It is a practical way of remaining in control of the situation. A will can be made whether one is well or ill, and many patients welcome a discussion of their future.

The concept of responsibility – Victor Frankl, a psychiatrist who survived the extreme suffering of a Nazi concentration camp, wrote a book called Man’s Search for Meaning. He quoted Friedrich Nietzsche: “He who has a why to live for can bear almost any how.” Frankl wrote “We had to teach the despairing men that it did not really matter what we expected from life, but rather what life expected from us . . .”

A dying patient is not responsible for his illness, but he is responsible for his reaction to his illness. Suffering itself has no meaning or value, but opportunities for good can arise out of any situation, even a situation of suffering. This concept is easier to accept when you are well than when you are ill, but it is still helpful. It emphasizes that a person copes best who remains realistic and yet hopeful in every situation. Respect for this responsibility can restore a person’s self-esteem and sense of control.

Religious support – One purpose of religion is to make sense of life – to put meaning into a person’s situation.

We may not understand or accept the religious beliefs of our patients, but we can respect them. It is not necessary to know the details and customs of every religion. It is necessary to take an interest, and to learn about their special observances. It is one more facet of good care to know about religious needs, which may be much more important to a person than medical or nursing needs.

Ask about prayer, rituals, festivals, diet, fasting, and the need for quiet. Learn about any special religious requirements the patient or family will have around the time of death.

It can be helpful to distinguish between spiritual and religious support. When a person has the comfort of a religious faith, we must help to ensure he has all possible support from that religion, whatever it is. Formal religious support is intended to provide complete spiritual support, and for many it does. But religious practice can sometimes fail to meet a person’s deepest spiritual needs. Religious rituals and sacraments are very important, but devoid of genuine pastoral concern they can become another barrier for an anxious minister, priest or rabbi to hide behind.

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.