The dying adult

This paper focuses on two common problems that arise when people come close to death, fear and grief. Fear is the psychological reaction to danger; grief the reaction to the numerous losses that are likely to occur in the course of an illness that is approaching a fatal outcome. Both can be expected to arise in patients, their families, and—though we are reluctant to admit it—in their doctors and other carers. Both fear and grief need to be taken into account if we are to mitigate the psychological pains of dying.

Summary points

• We should never assume that we know what people with terminal illness fear

• Most patients will benefit if we can help them to feel secure enough to share their fears

• Fear can aggravate pain, and pain fear

• Patients with life threatening illnesses experience a series of losses as the illness progresses

• Grief is natural and needs to be acknowledged and expressed

Fear

Though it may seem obvious that people who are dying are likely to be afraid, we should not assume that we know what they fear. The box shows the fears, in approximate order of frequency, expressed to me by patients in a hospice. It is clear that fears of death itself come quite far down on the list. Difficult to quantify but of particular importance is reflected fear, the fear that people see in the eyes of those around them or hear in the questions that are not asked.¹ Many problems in communication arise out of fear, and we may need to take time to create trust and a safe place in which people can begin to talk about the things that make them feel unsafe.

Knowing about dying

Few people in our society know how people die. Their image of death comes from horror comics, dramatic representations in the media, and the scare stories that get passed around a family when someone dies a painful death. To most people a little illness is bad; as the illness progresses they expect the symptoms to get worse, and it is logical to expect that, at the moment of death, every symptom will be as dreadful as it can be. This image of death as the peak of suffering bears little resemblance to the quiet slipping away of many a patient in the late stage of cancer whose symptoms are being relieved and who is surrounded by a loving family.

Causes of fear in people with life threatening illness

• Fear of separation from loved people, homes, jobs, etc

• Fear of becoming a burden to others

• Fear of losing control

• Fear for dependents

• Fear of pain or other worsening symptoms

• Fear of being unable to complete life tasks or responsibilities

• Fear of dying

• Fear of being dead

• Fear of the fears of others (reflected fear)

Patients who have learned to trust the doctor may well be able to share these fears and be reassured. But words like “cancer” and “death” are tainted with so many horrific accretions that it may be hard for the patient to use them. We may need to show by our own matter of fact manner that we are not afraid to speak the unspeakable. This does not mean that we should force people to face facts that they are not yet ready to face, but there are many ways in which we can ease things along. By inviting questions, answering honestly the questions that are asked (but not necessarily the ones that are not asked), and giving reassurance where reassurance is possible and emotional support to grieving when it is not, we shall often help patients and their families to make something good of the time that remains to them.

Fear builds on fear

Fear often aggravates itself. Thus people with cancer may lie in bed worrying about their cancer. We do not need to know about the gate theory of pain² to know that a minor ache or pain will get worse if we worry about it. Though many of the pains of cancer patients are not directly caused by cancer, if we are to relieve them we need to take them seriously, discover their cause, and give an explanation and reassurance that will convince the patient.

The list of physical symptoms that can be caused by fear is long, ranging from the physiological effects of disturbance of the autonomic nervous system to the secondary effects of overbreathing. When they occur in people who are already physically ill the resulting tangle of physical and psychosomatic symptoms is not always easy to unravel.

Although we often know that a particular case of cancer is likely to end fatally we can seldom predict how long it will take.³ One of the hardest problems is living with uncertainty, and patients will often demand to be told how long they have to live. Doctors should not make predictions that will probably be wrong, and they need to be prepared to support their patients while they wait for the situation to clarify itself.

It is often wise to resist pressure to carry out another operation or another battery of tests that will be unlikely to leave the patient any better off. Clearly, if we are to be of help we must tread a line between alarmist overinvestigation and facile reassurance.

Something can be done

There is always something that can be done to help people through the long periods of waiting, be it a regular chat with a trusted doctor with whom patients can air their fears or a minor tranquilliser that may break the vicious circle of fear and symptoms. Diazepam still has a place in the short term treatment of anxiety, particularly in patients whose life is not likely to be long enough for habituation to become a problem. Several antidepressants, including 5-HT reuptake inhibitors (such as fluoxetine) as well as the more sedative of the tricyclics (such as amitriptyline and dothiepin), have anxiolytic properties that may benefit people who are anxious and depressed.

Cancer invades families, and it is important to reach out to all of those whose lives are touched by it. Support given to a patient’s spouse indirectly helps the patient. That said, it is common to find that, as long as the patient is alive, members of the family will minimise their needs for help and support. We should be aware that things are not always as satisfactory as they seem. One way to tap into the needs of the family is to invite them to help us to draw a family tree. This not only tells us who exists, it also shows our interest and allows family members to share their fears and other feelings about each other.

The dying patient’s griefs

Although the course of cancers and other fatal diseases can seldom be predicted, these diseases do tend to progress in a stepwise way. Initially the prognosis may not be bad—an operation and a course of radiotherapy or chemotherapy may offer the hope of cure, and most patients and doctors prefer to adopt an optimistic attitude. This does not mean that nothing has been lost. Quite apart from the physical mutilation and loss of function that can result from drastic treatments for drastic diseases, patients who have suffered a life threatening illness will never again be as secure as once they were. We need to be at hand and to encourage them to share their perception of the implications of the illness for their life.⁴

Losses of patients with life threatening illness

• Loss of security

• Loss of physical functions

• Loss of body image

• Loss of power or strength

• Loss of independence

• Loss of self esteem

• Loss of the respect of others

• Loss of future

If people have been helped to express their grief at the losses that have occurred at an early stage of an illness, they will be more likely to be able to cope effectively when they are faced with another set of losses

Expressing grief

If people have been helped to express their grief at the real losses that have occurred at an early stage of an illness they will be more likely to be able to cope effectively when they are faced with the next set of losses. After a period of relative quiescence a new symptom may arise; it is investigated and is found to indicate that the cancer has spread. This time it is more difficult to deny the fact that things are not going the way they should. Perhaps another course of chemotherapy is given, but the benefits are less and the patient’s general condition is likely to be deteriorating. It becomes obvious that this person will never be able to return to work, and this may be a real cause for grief.

One of the most disturbing losses is the loss of the respect of others that is reflected in their expressions of pity, for pity, unlike sympathy, demeans the person pitied. To some extent this is counteracted if we and the patient’s family continue to treat the patient with respect. The loss of respect will be aggravated if we patronise, infantilise, or denigrate the patient.

The stages of dying described by Elizabeth Kubler Ross—denial, anger, bargaining, depression, and acceptance⁵—have rightly been criticised: they do not correspond to the unpredictable way in which most cancers progress.⁶ Even so there is a tendency for people to move, in fits and starts, from a state of relative denial of the true situation to some kind of acceptance. Some never accept the situation and continue to expect to get better; others seem to embrace the prospect of death. In between there is a majority who oscillate back and forth between courageous attempts to face facts and episodes of optimism that are quite unrealistic. These fluctuations make it difficult to get reliable measures of “insight,” and most research in this field is of dubious value. Anger and depression, which are frequent accompaniments of grief, and “bargaining,” by which Ross means the attempts that cancer patients often make to accept one sacrifice in the expectation of a reward (“I don’t mind losing my hair as long as I can be kept alive until my daughter’s wedding”), are often found.

Coping and letting go

In the later stages the loss of all of the appetites, including the appetite for life, makes acceptance easier. Many patients find it easier to “let go” of life because of this.

In all cases the patient’s previous personality and their accustomed ways of viewing the world and coping with problems will colour the way they cope with illness and death. Those whose experience of life has left them confident in their own worth and trusting in the love of others usually seem to feel secure in the face of death; others, who may be less secure in both their confidence in themselves and their trust in others (and ultimately in God), may find it hard to step into the unknown. Spiritual values that arise from having found meaning in life make it easier to find meaning in death, but this should not be confused with religiosity, which is often an attempt to propitiate God and seek God’s protection. This kind of faith often breaks down when God fails to keep his side of the supposed bargain.

Whatever our own faith, it is important to respect the faiths of others and to resist the temptation to proselytise. Each person has their own religious language, and we must learn that language if we are to communicate successfully on spiritual issues. Many patients will enjoy the opportunity to share with us their attempts to make sense of their lives, and it is our privilege to be a part of this search.

The doctor’s grief

To help those who are dying we must be prepared to share their griefs and stay with them in their fear. Sometimes we have the satisfaction of knowing that the pain we have shared has been followed by a peaceful and even a triumphant end and this makes it easier to bear, but there are no guarantees. Sometimes death is a messy and a bitter business which leaves us harrowed and ashamed. Maybe the person who died has triggered off our own most dreaded fears; maybe we feel responsible for their suffering or their death.

At such times we too will need the support of someone we can trust—and we should not feel ashamed to ask for it. We too will need to grieve; if it is all right for our patients to cry, it should be all right for us too. We are not supermen and superwomen who can always be counted on to give help but never need it for ourselves, and we must be prepared to let others take over, for a while, the daily routines in order to give us space to grieve. It is a sign of maturity to know when to ask for help, and the wise doctor will have worked out systems of support to meet a range of needs.⁷