Helping the dying

Coming to terms with the death of a loved one is one of the most painful experiences a human being has to face; dealing with the knowledge of one’s own imminent demise must come a close second. The concept of terminal illness as a problem to be dealt with positively and treated in a hopeful way has only recently come about. At one time the medical profession saw death as its ultimate failure, but the work of certain more enlightened doctors has helped foster new attitudes. Fortunately a doctor is no longer seen as a mighty god who can, miraculously if necessary, come up every time with exactly the correct treatments to bannish illness and death from our lives, but is now regarded in a more realistic way. A doctor is regarded as someone who has learned about the functioning of our body, and is trained at recognizing malfunctions. Many disorders, particularly if diagnosed early enough, can successfully be treated and the patient restored to full health. But some disorders are diagnosed too late, some damage resulting from injury or degenerative changes caused by aging are too extensive to be cured, and some – a diminishing number – of conditions still wait a cure. Every life has to come to an end, and of course there are circumstances for which nobody can provide real improvement or cure. In these cases a doctor may be able only to give support in a psychological way or by relieving pain.

One of the pioneers of this approach was the Swiss-American psychiatrist Elisabeth Kubler-Ross (1926), who edited the classic work ‘Questions and Answers on Death and Dying’ (1974). Conducting interviews with patients suffering from terminal disease she determined five stages of coming to terms with one’s own imminent death. Nowadays doctors use the concept of terminal care (sometimes called continuing care), and of the hospice or other place where some of these patients are cared for. In many ways the attitude to one’s own death can be likened to that of mourning for someone else. The dying patient is about to lose everything and everyone from his (or her) material world. There are variables at each stage of the illness depending on the patient’s own insight into his condition, his religious and spiritual beliefs, the time he has left to live, and how the terminal illness progresses and is managed.

Informing the terminally ill

Informing someone that he has a terminal illness carries enormous responsibility. Some doctors are cautious of imparting this knowledge for fear of how the patient will cope with the situation. Sometimes doctors fail to tell because they themselves have difficulty coping. In addition the facts may be difficult for relatives to accept; they may want a firm answer on how long the person is still likely to live. Some doctors advocate telling relatives that the situation is very serious and that there is a chance the patient will not survive. In any event, it is difficult to keep the reality of the situation from an alert and intelligent terminally-ill patient.

Virtually all patients deny the information to begin with, and some go on doing so right up to the end. Some withdraw from the situation and talk of their illness but see their fate as another, separate question. After the ‘denial’ phase comes a phase of anger. This is understandable, especially when the person is relatively young and successful in other areas of life. The anger may be directed at the patient’s family or friends, or at those treating or caring for him. As illness progresses, enforcing more restrictions on the patient’s actions, the irritation and frustration may become harder to bear. The patient can make life very difficult for those around him at this stage. As the reality of the situation is assimilated, a bargaining phase follows. People with some special talent may be asked, or wish, to use it one last time; others request a final visit to a favourite place. Children who are dying often ask for their favourite toys to be given to certain individuals. During this time many patients are trying to resolve inner conflicts and fears; indeed, some may be bargaining with their God in an attempt to avoid the inevitable.

Depression and acceptance

Depression is likely to follow bargaining as the fourth phase, especially if serious and radical surgery is advised as a means of prolonging life. The unpleasant side-effects of some palliative treatments can also result in depression.

A dying patient, moreover, may become desperately anxious about how his children will be cared for and how his partner will fare, and he may retreat into worry about his family’s financial future. In some countries where health care depends on personal wealth, people may have spent their life’s savings on treatment by this stage – only to discover that it was apparently all to no avail.

The depression of a dying patient, therefore, has valid causes and requires tremendous tact and sympathy. It is wrong to try and distract or ‘jolly’ individuals out of this phase; better to let them express their grief. At this stage, too, the dying person may express regrets for what he sees as past failures. As he gets weaker, so the patient’s readiness to die grows, yet still he wants to live. The resolution of this conflict is the final, acceptance, phase of coping with imminent demise.

Easing the anguish of dying

Where death occurs is not always a matter of personal choice. Too many people die in the general wards of hospitals, where the accent is on preserving life, and death is regarded as failure. The very old and sick may become unhappily isolated in their last days, as the busy pace of hospital life goes on around them. Dying ition from life to death calm and peaceful – and natural. The pace is slower and more in tune with the dying patient’s needs. Towards the end, if the patient’s pain can be eased and feelings of nausea and thirst relieved, much good can be done.

It helps immensely if a relative or close friend can be with the dying person: generally, little is spoken in these moments, perhaps a hand is held. Thus the dying person need not be alone and other relatives can be eased of their guilt. For the helper it is a powerful experience of the frailty and finiteness of human life.