Dying….By John Hinton
COPYRIGHT Belongs to:
Pelican Book A866: Studies in Social Pathology. Editor: G.M. Carstairs
* Penguine Books Ltd. Harmondsworth, Middlesex, England.
* Penguine Books Inc., 3300 Clipper Mill Road Baltimore 11, Md, USA
First published 1967. Copyright John Hinton, 1967
Neither the sun nor death can be looked at with a steady eye
– La Rochefoucauld 1613-1680
INTRODUCTION
The awareness of death and the actual act of death are two attributes of the human condition with which every society must come to terms. They have been dealt with in as many different ways us as there have been separate cultures.
Men resort to fantasy and magical acts, which are disguised as myths and rituals in the burial process.
Both primitive and advanced societies single out successive stages of man’s life as having particular importance. They also mark the moment of entry into each such stage with institutionalized ceremonials, known as rites of passage. The change of status may involve an irreversible biological event- as at birth, puberty and death; or it may be socially defined –as at Marriage, inheritance, or election to office. All such changes of status, with one exception, imply that the individual enters into a new mode of relationship with his fellow men. The exception of course, is death. In death, the human actor seems to relinquish his role.
In previous generations, death was a common hazard of childhood, of childbearing and adults in the prime of life. To a large extent this is still true today-coronary thrombosis, cancer, AIDS for example kill many fathers of young families.
Among all the ways of dealing with death, the one most surely doomed to failure is the attempt to ignore it.
Professor John Hinton, who has had more intimate acquaintance with dying patients than have most doctors here sets out to give a balanced, truthful, picture of how people approach death in the mid 20th century society.
Part of the picture is ugly, and part, painful.
Professor Hinton shows that doctors, nurses and relatives can do a great deal to mitigate the physical and mental suffering which accompanies so many terminal illnesses. In order to do this however, they must have the fortitude to recognize such suffering and not simply to cover it up, persuade themselves that it does not exist or avoid it.
This book gives us the medical and social facts of death and dying in our society in the middle of 20th century. It also contains a great deal of information, which can be of immediate practical use to those who have to face this problem in their personal or family life.
– G.M CARSTAIRS (Series Editor).
Dying By John Hinton
CONSIDER THE WORDS and experiences of two persons who died not long ago.
THE FIRST PERSON died quite peacefully. She was a retired teacher, who throughout her life had been concerned to help others as much as she could. While dying of cancer, although her physical condition began to deteriorate rapidly, she was quite alert and welcomed visitors to her bedside. Like most people, when she was given the opportunity to talk freely about her illness and her feelings she was glad to do so.
“I know I’ve got cancer; it’s spreading over my body. I want to see Mr. X (her consultant surgeon) because l don’t want just to be kept alive with radium. I know I’m going to go; l accept it, I’m not miserable about it.”
This message was passed on to her surgeon, a doctor strongly concerned with his patients’ general welfare as well as with the treatment of their diseases. As far as the physical treatment was concerned, he willingly agreed with his patient’s viewpoint that there was little he could do to prolong any worthwhile life. He added that the pressure of work prevented him from visiting her again to talk further about it. This was reasonable enough from the practical point of view, but he also indicated that he was not sorry to have grounds to avoid such an interview. His patient had considerable understanding of how he might feel.
“l know you doctors can’t say. It’s your job to save lives.”
She herself did not always want to admit that she was dying. In subsequent conversation, in spite of her earlier awareness of the true nature of her illness, she would often speak in a light wondering fashion about her symptoms as if she could not begin to guess what caused them. There were times when she wanted to maintain this pretence with others and not refer to her real state. What little pain she had was kept under control quite easily and she wanted to return home, where she died within a few days.
THE CIRCUMSTANCES OF THE OTHER PATIENT were, unfortunately, very different. He had only recently retired, and was in hospital, dying in considerable distress. Ha had delayed seeking medical advice for his heart failure because his views, derived from Christian Science, had led him to believe it possible to overcome by faith any threat to his health or life. It suddenly became apparent to him, in his exhausted, breathless state, that regardless of the conviction that he wanted to uphold, he was still getting worse and might well be dying. He saw a doctor and was hastily admitted to hospital.
He was frightened and troubled and said, ‘l thought something was going to happen last night – I don’t want to pass on yet.’ A friend described how this man’s faith had left him, and indeed it was clear how spiritually lost and guilty he felt. He did die within a few days, and until consciousness began to ebb, he suffered a good deal. He only obtained partial relief from the oppressive comfort in the faith that had failed him and that he had failed.
The experience of these two people reveal some of the problems associated with dying including those that hinge on avoiding thoughts of death. It can be distressing for the dying to contemplate their own death. The man who gained comfort during his lifetime by denying that death was inevitable. In this, he had been more extreme that is usual. Most people freely admit that all men will die, but are reluctant to consider too closely their own death.
Attempt to deny death and mortality are not wholly successful, however, and when they fail they can bring increased distress. The man who had tried so hard during his life to use a religion to deny that he could die, rather that accepts that his life on earth would end, was ill prepared for death when it came. He suffered because of this.
Nevertheless there are other features of our culture, which do not allow us to forget death. Tragedies involving loss of life are announced every day in newspapers, pictures of dead bodies appear with increasing frequency in magazines and on television, there is talk of weapons that will destroy millions of lives and so on. The majority of people can still regard such events as unlikely to impinge directly on their own lives. The personal significance of death is still warded off; the descriptions of tragic deaths are heard with distant interest, murder stories are read for pleasure, and stories thoughts about personal death do not often get far beyond making financial provision ‘just in case’.
Reluctance to face death brings one undeniable evil. When people are disinclined to get involved in the personal problems of the dying, mortally ill people suffer more. In one way it was endured by the dying woman. Her situation was not as bad as that of many mortally ill who see people withdrawing from them. If those who care for a dying patient feel too much unease in his presence, they cannot tend him as completely as they should.
Some doctors are reluctant to stay long near the dying because they only like to talk to patient in terms of cure. They are apt to see death as a medical failure, and retreat too hastily. Another great problem of dying, revealed in the brief account of those two people, is the physical suffering that may occur in the terminal illness. The woman with cancer was fortunate. The pain and the discomfort that sometimes arose from the localized swellings due to her disease were adequately relieved by treatments familiar to all doctors. Her stable personality helped her to cope with the nearness of death without any great emotional distress. She was able to share some of her feelings with those who felt sympathy. The man was less fortunate. Although he did not have to endure it for long, his physical discomfort was bad at times, and he had a mental anguish that was hard to allay.
Now, considerable knowledge and facilities are available to relieve distress caused by disease. To bring comfort sometimes without curing is a very important part of the work of doctors and nurses. However some still suffer in their last illness. Either we do not know enough or we fail to give the help that is within our power.
As a first step to improving our care we need to know the nature and degree of distress that does occur in fatal illness. Search for this sort of information soon shows that well-established knowledge is scanty; it is a disturbing ignorance.
The distress of patients dying of cancer has been assessed in other surveys in the United States and in Britain. These reports have indicated that although some die quite peacefully, much more help is required. The inquiry by the Marie Curie Foundation and the Queen’s Institution of District Nursing is particularly disquieting: it shows clearly that many people suffer more than they should during their terminal illness.
This immediately provokes a series of questions. What are the causes of their suffering? Do we fail to provide adequate care for the dying? What is done to help those in unusual anguish? What treatments are believed to bring most relief; are they favoured because they happen to be in vogue, or because there is unequivocal evidence of their supremacy? How early should pain-relieving drugs be started, how frequently given, and should they be increased liberally? Are dying people in general better cared for at home or in hospital? Which people should be admitted to hospital, and what sort of hospital, what sort of ward? Are there enough people and facilities to look after those who are dying?
And on the patient’s psychological state, more questions spill out. What allows one person to relinquish life easily while another does not want to let it go? Are they mainly troubled by fear or sadness? What do they fear, is it a dread of physical suffering or is it a fear of death? Are they troubled because of their uncertainty, or is it that they feel there is a conspiracy to keep the truth from them? Can we relieve their sorrow? Should we tell them that they are dying? Do they already know? If they suspect that they will not recover, should the outcome of the illness be discussed openly with them? How should the matter be raised, by whom, with whom, how often?
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And on the patient’s psychological state, more questions spill out. What allows one person to relinquish life easily while another does not want to let it go? Are they mainly troubled by fear or sadness? What do they fear, is it a dread of physical suffering or is it a fear of death? Are they troubled because of their uncertainty?… Can we relieve their sorrow? Should we tell them that they are dying?
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FEAR OF DEATH AND DYING
DEATH AROUSES SEVERAL FEELINGS in man – fear, anger, sorrow, despair, resentment, resignation, defiance, pity, avarice, triumph, helplessness, and to some degree, practically any emotion that there is. The commonest one is fear. Sorrow is another important theme, felt when something worthwhile is lost, when a precious life is finished.
Much of the anxiety and fear, which the prospect of death arouses, is normal and has a biological value. Were this fear absent, life would be risked unnecessarily and premature death would come too often and threaten raced survival.
Many people say that it is not so much death as suffering that they fear, because they visualize dying as suffering. But often, fatal conditions are free from discomfort. Friends and relatives of the dying usually have little knowledge of the protective function of diminished consciousness. Someone about to die may look ill, or be so confused in mind that the onlookers mistake this for suffering.
With so many sources of anxiety over death, it may seem that dying must be a time of fear. It is, of course, true that those about to die are influence by their previous attitude and fears of death, whether their ideas are normal or abnormal.
As death is so unwanted and feared, man would like to prevent it. However, unless he denies the evidence of his senses, he must realize that his own life will end sometime. So he can either attempt to defer it, or he can deny that death is absolute.
The better ordering of society may prevent some untimely deaths but cannot, of course, ward off death for ever. Most societies, however, have comforting beliefs that temporal life on earth is but one aspect of total human existence. In prehistory this view appears to have been held; at the burial of the dead, companions often placed objects beside the body, presumably thinking that these gifts could still in some way be used or appreciated by the dead person.
Many take comfort from a belief in eventual rebirth after death, with the promise that death only interrupts life, and that there will be a return to the wanted family world. This view of constant rhythm of life , death and rebirth is the keystone of several religious beliefs, primitive or otherwise. It is in accord with the natural cycles seen in this world, like the succession of the seasons and the annual regeneration of plants. Not everyone is comforted by a prospect pf recurrent life in this world without surcease, however.
If our present society were a sincere Christian one, there would be a general conviction that death has been vanquished. In fact, in England about a quarter of the population disclaim any religious beliefs and about a half do not believe in an After life. This is not very different from the results of studies of opinions in the U.S.A. Many religious people find comfort concerning death through their faith, not all with religious belief are reassured. It was even found in one study that those with religious beliefs had more fears of death than the non-religious. An explanation may be that religious do not usually hold out unconditional promises of pleasurable Eternity even to those of their faith. The faithful must observe certain moral codes during life on earth.
ACCEPTANCE OF DEATH: LIVING AND DYING – THE RHYTHM OF CREATION
In both primitive and civilized existence there is the recognition that life must end some time. It is usual for the tribesman explicitly to blame a malign agency for the death, but civilized people are also apt to blame others following bereavement. The Yoruba of Nigeria have been inclined to attribute the visitation of death either to particular gods, who therefore need propitiation and sacrifice, or to witches. Like Europeans not so long ago, they have been apt to blame elderly, childless women for working witchcraft. Innocent old women thought to be witches became scapegoats for the deaths, especially untimely deaths of others.
To see death as entirely appropriate (an important part of much religious teaching) removes misgivings. It also has firm support from biology. When a person has completed his span of life, his powers wane, and the eventual increasing decline indicates that it is time for the individual to depart this life.
There is some biological immortality. It is more lasting than the short-lived remembrance of the deceased in the society to which he belonged. The elderly get comfort when they see their children and perhaps their children’s children continuing in this life. They are links in a potentially immortal chain. Within the living bodies are the chromosomes, inherited from parents and ancestors and capable of infinite replication. Once the individual has safely passed on these genetic endowment, he has contributed to his immortality. In accordance with much that goes on in nature, however, he himself need survive no longer. It is egocentric to hope otherwise.
C.G. JUNG buttressed the biological necessity to die. Any one who regard death as a detestable, meaningless, cessation of life and not as a fulfilment life’s goal alienates himself from his own instinct.
Some psychoanalysts have even gone further postulating that there is a “death instinct” suggested by Freud. A paradox here. Man, showing an urgent instinct (and striving) to live has an instinct towards death. Death, to counterbalance the drive for self preservation and reproduction. Together, these two instinct- Living and Dying would preserve the rhythm of creation.
In primitive society the elderly have not necessarily waited for natural death or the decision of their companion that a time has come. The aged in Samoa might make the request to be buried alive, the traditional method employed. It would be considered a disgrace to the family of an elderly chief if this honour were not granted.
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Some psychoanalysts have even gone further postulating that there is a “death instinct” suggested by Freud. A paradox here. Man, showing an urgent instinct (and striving) to live has an instinct towards death. Death, to counterbalance the drive for self preservation and reproduction. Together, these two instinct- Living and Dying would preserve the rhythm of creation.
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THE DYING
THE RECOGNITION OF FATAL ILLNESS is often only too easy. The signs and symptoms may be such that the doctor will know straight away that his patient is dying. For example, it may be clear that a person has a malignant form of cancer which has spread hopelessly far and wide over his body. In other cases a fatal illness might be suspected after some straightforward investigation the disease and its eventual outcome are known for sure.
Uncertainty usually arises either because the diagnosis of the disease is not fully established or because it is not clear what course the disease will follow in a particular case.
The potentially fatal diseases are, to some extent, comprehensible. There remain a greater mystery: Is there some inherent process that dooms man to die after a certain number years of life? Is there a natural life span?
These questions now seem of greater importance because of the more frequent part that senescence plays in the deaths of our present-day population, with its greater proportion of elderly people.
It is common experience that elderly people playing a necessary part in the world carry their years lightly. Perhaps their physiological responsiveness and resistance to disease may parallel their liveliness. The apathetic unwanted soul who finds life a miserable existence seem to succumb to illness too readily.
Reassurance is often sought about three aspects of dying:
- Will it take a long time to die?
- Will there be severe physical suffering?
- Will the suffering be relieved?
Pain is the symptoms that many people commonly fear will be the dreadful accompaniment of their dying illness. It may indeed be an inherent part of some incurable disease but it is by no means inevitable.
This influence of the state mind equally applies to those with severe disease or injury. This was shown in the case of a woman who had a recurrence of a cancer some while after most of the original growth had been removed. This spread to involve the nerve roots to her legs and gave her pain, so that she needed to re-enter hospital. There was no effective treatment for the growth and she was given drugs to relieve the pain. It was planned that she should return home, but then the pain worsened and, even with frequent injections of morphia, she was still distressed. It was clear that she could not manage at home in such a state and arrangements were made for her to be transferred to another hospital, where she could remain for the remainder of her life. As her anxiety settled so did her pain, and she did not need nearly so much of the analgesic drugs.
The age at which people die has some bearing on the amount physical suffering that they experience. Younger adults tend to have longer-lasting illness, often with greater stress. In the patients dying in hospital, 45% of those less than 50 years of age had considerable discomfort; 32% of those dying between 50 and 70 years old had physical distress; but only 10 % of those over 70 years had much unrelieved physical suffering in their terminal illness. The older person tends to slip away from life a little more easily.
Often the emotions of dying people evolve into a final acceptance that they are about to die. Most finally meet death which they may have formerly regarded with anxiety, grief and awe in a manner that compels admiration. However mingled with this courage and acceptance of the inevitable are a host of other emotions pleasant and unpleasant-some concealed and some plain for all to see.
When people are gradually dying, their mood is not often wholly constant. Optimism and pessimism, stoicism and fear can easily follow one another. Sometime the mortal disease directly affects the function of the brain so that the dying personal acts quite out of character.
Anxiety is the first major emotion. Then a group of unpleasant emotion under the broad term: depression. Discomfort is the chief cause of anxiety, followed by separation from loved ones more especially in fatally-ill children being treated in hospital, their fear often arose when they were separated from their family.
Religious belief is obviously relevant to dying people. It enters the thought of so many when they are seriously ill and some seem upheld by their faith. In the patients who were dying in hospital, it was possible to see if the strength of their religious belief and their attendance at church during life influence their chance of showing anxiety while dying.
In what way was their degree of faith associated with their chances of feeling anxious during their last illness? Those who had firm religious faith and attended their church weekly or frequently were most free of anxiety, only a fifth were apprehensive. The next most confident group , in which only a fifth were apprehensive. The next most confident group, in which only a quarter were anxious, were those had frankly said that they had practically no faith. The tepid believers, who professed faith but made little outward observance of it , were more anxious to a significant extent.
Although anxiety occurs quite frequently among the dying, it is not the most common form of emotional distress. Depression is seen more often; at least, it is if those near to the dying are prepared to notice it. The sadness and misery that seriously ill people feel in these circumstances are liable to be underrated by the onlookers because it is easy to assume that symptoms of depression such as the loss of interest, incapacity to enjoy things and dulled emotion are entirely due to the serious physical disease they have. This is often a wrong assumption; others who are seriously ill but expected to recover, do not experience or show the same degree of misery.
Many dying patients often speak of their sadness and by the time they were within two weeks of dying about half were experiencing some depression of mood. Some confessed that they had seriously considered ending their own lives, or had wished their lives to end because their existence was so miserable. The degree of love and companionship that exists between the dying and those near to them will, of course, influence how they feel. In the close association of dying and mental distress, it is often suggested that the emotion of the man can bring about his own death. It is quite possible that emotions are one of the many contributing causes which together influence the rate of progress towards death, but this does not mean that emotions are often the final arbiter of death through some mystical process. It may well be that troubled feelings disorder a physiological process in a way which loosens a tenuous hold on life.
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Those who had firm religious faith and attended their church weekly or frequently were most free of anxiety, only a fifth were apprehensive
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AWARENESS AND DENIAL: STRUGGLE AND ACCEPTANCE
There is considerably controversy over the extent of the awareness that the dying have about their approaching end. One distinguished physician wrote:
As for the dying man himself, we rarely find him ‘looking death in the face’ and knowing it is death. He is either very dubious that death is coming to him, or his apperception is so dimmed, whether by weakness or by a merciful physician that the end of life is a dream-state rather than a true awareness.
In contrast, another doctor has written:
Most dying patients have the feelings that death is near. Some know it well enough and yet want nothing said about it: or perhaps, while they like to talk of it with the doctors and nurses, they cannot bear to speak of it to their families.
These two views have been selected, not only as they illustrate the divergence of opinion but also because they have been expressed by two thoughtful experience physicians, whose opinions should not be readily dismissed.
These opposite views may stem from the different opportunities given to patients to feel free to talk about such things.
But it is now generally agreed that more than a quarter of dying patients are aware of the final outcome.
The opinion that a considerably greater proportion than a quarter of people come to know that they are dying is held by Cicely Saunders. She has had wide experience as nurse, almoner and now as doctor treating the dying in a hospital devoted to their care. She has said:
“In my own experience I find that the truth dawns gradually on many even most, of the dying even when they do not ask and are not told. They accept it quietly and often gratefully but some may not wish to discuss it and we must respect their reticence.”
My own findings and notes agree with this view. I visited patients who were to die and took notes of the comments they made regarding the expected outcome. 38 per cent did not speak of their future outlook or used only vague terms such as “I was hoping to be better by now” Or “I’m determined to get on.” Only 5 per cent seemed confident of recovery. Another 8 percent hoped for partial recovery.
Many of the patents, 26 percent, were more sure than this, saying firmly, for instance, “I don’t think I’m going to get better”. A tough, independent window-cleaner rapidly worsening with a malignant illness affecting his nervous system said of his condition, “I hope I’ll get better –I’ve only just come in (to hospital). But if I don’t – well- I’ll just go off home after six or seven weeks. Better finish off there””. A few, 6 per cent, were unhesitating about their approaching death. The calm statement “I’m going to die” became familiar but never unimpressive. In summary, it can be stated that half of these people dying in hospital, even at the first interview, took the opportunity to talk frankly and spoke of the possibility or certainty that they were to die soon.
I continued to visit these dying patients in hospital every week. We conversed at length or briefly depending on their inclination or strength. Often we came to know each other well – friendships grew fast in these circumstances. By the end of their lives, the majority had spoken of the possibility of dying.
It was not possible to be sure how these people came to realize that they were dying. Not many had been clearly told that they had diseases, such as a tumour., which they would know could prove fatal. Very few, if any, had heard their doctors use the word cancer, because this word now has in the lay mind even more sinister implications than it warrants. None of them apparently had been told outright by a doctor that they might be dying – although it had sometimes been referred to by their priest. In general, the particular type of illness or particular symptom that these hospital patients had, did not have any consistent influence on their awareness.
Some refuse to accept the possibility of dying. Some unfortunate ones combine their acceptance of the outcome with an intense struggle against it. As long as they are unable to surrender to their inevitable progress to the end, they are liable to be in distress. When the dying have such a fearful reluctance to go, all those near to them are involved in the distress.
It happened in the case of an attractive woman of twenty-five who had been increasingly ill over two years with a fatal gland disorder. She had not been married very long and had one young child. She had improved several times, each improvement being a little less marked, a little shorter, than the last. Then she re-entered hospital for what was clearly going to be the last time. She was terribly frightened, often clutching hold of people she knew and entreating them to get her better again. She kept asking to be reassured that she was beginning to recover, and sometimes quietened a little if she was old that she would be better again. But reassurance in these circumstances does not help for long; the dying person who so strongly suspects the truth cannot wholly believe statements about getting better. A few dying people fear death and struggle against and try to escape it to the end. If their extreme reluctance to die does not evolve into acceptance, they may not experience peace until the very end.
ACCEPTANCE
It seems appropriate for the fatally ill to accept and resign to the impending outcome. This permits peace of mind. When death is inevitable submission in the struggle for life is no personal failure, because greater determination will not prevent death. The progress towards acceptance can be uneven and wayward, as in the case of a pleasant laboring man who had a cancer of the lung. The disease had been discovered only a short while after his wife had been killed in a road accident. At that time he was not sure if he wanted to live much longer or not, but after an operation for his cancer, he regained physical and moral strength and said quite spontaneously that now he wanted to go on living. Unfortunately all the lung cancer could not be removed and some months later he returned to hospital because the disease had caused his swallowing to become difficult. Another small palliative operation helped him for a while and he expressed confidence in the treatment he had received when he left hospital. Once again he fell ill and now expressed both hopes and doubts about his outlook. “I don’t think my breathing will eer get better”, he said. A week later he was worse and confessed, “You just don’t know what’s going to happen”. On the day he died he told the ward sister that he was now aware that he was dying. He did not want to be bothered with the oxygen anymore and asked if she could stay with him a moment. He held on to her hand as she sat beside him while he lost consciousness and died shortly after.
About a quarter of those dying in a general hospital exhibited this degree of acceptance and positive composure. Many accept their own death according to the philosophy of ‘life and death’ that they had formerly held, although their often ill-formulated philosophy may require revision when the problem has become more immediate and personal. They may make certain religious an/or personal preparations and rites to depart this world.
Many dying show their kindness and become, perhaps, more noble in spirit than they have ever been. They do all they can do to spare the feelings of those they are going to leave behind to bear their loss. Before relatives visit, they prepare their appearance and compose their faces so that those who love them should not believe they suffer. They demonstrate their affection in both apparent and in subtle ways. Given sufficient spiritual and bodily help, it is probable that most of those moving steadily towards death would experience the peace of surrendering to their fate before they drift into permanent unconsciousness. Many do attain this calm acceptance, some do not. Some, unfortunately, wish for death because they suffer. We must consider the treatment that is required to make the dying sufficiently comforted for them to reach a quiet acceptance of death.
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On the day he died he told the ward sister that he was now aware that he was dying. He did not want to be bothered with the oxygen anymore and asked if she could stay with him a moment. He held on to her hand as she sat beside him while he lost consciousness and died shortly after.
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CARE OF THE DYING
The care required by the dying would be indicated by the physical and emotional discomfort they suffer. Some of those needs are recognized and met. However, drugs are not the only means of easing people’s suffering. Other methods are available in eradicating the more troublesome symptoms of the disease – even if these measures do not prolong life. Some of these are surgery, radiotherapy, irradiation.
For some patients such palliative measures either have no part to play, or there comes a time when they have little further to offer. If the dying in these circumstances have discomfort, relief is sought through treatments which prevent the discomfort from being felt. The most notorious discomfort is pain and this possibility often concerns people mush more than the fact that they are going to die. Very often pain is entirely relieved. If there were a sufficient number of trained people prepared and able to devote adequate time to give full attention to dying patients in pain, even less suffering would occur. Many doctors interested in the problem have shown what can be achieved. The physical methods of helping a dying person’s discomfort are of the greatest importance, but the incurable patient needs not only efficient practical care but faith in the judgement of those who must advise on his whole treatment programme. Will the doctor, using his knowledge of treating disease, come to a balanced judgement between the striving for cure and the seeking of his patient’s comfort? Will he advise with understanding on the question of are at home or in hospital? Is the doctor’s philosophy at odds with the outlook of the dying person, or are their views at least compatible over what things are important when life is drawing to a close? When there is no trust given or deserved, the dying person has a considerable added burden.
The absence of affection and trust between dying patients and those who look after them will vitiate the potential benefits of scientific skill (and efforts). If in addition to adequate physical care, the dying person had sufficient human companionship most of his anguish would be prevented. Even if there is the painful recognition that his active life and status among his fellows have come to an end, he wants to know that personal ties remain. The relatives and friends of the dying patient may not be able to give him the supportive companionship or nursing care that is adequate if they themselves are troubled..
The priest has a more traditional and, for some people, an essential part to play in preparing a person for death. As minister and as man he can give great comfort to the dying patient. Often he is hurriedly sent for when it is too late for him to give the spiritual comfort that he might well have conveyed. There is much to be said for a doctor, or someone who knows of the patient’s fatal illness, inquiring after his religious views and, when it is indicated, discussing the situation with the clergyman before the patient fully realizes or is told that he is dying. Then the minister can give continued help to the patient and his family as long as it is needed. He can speak with greater authority to the dying and assure him that whatever happens after this life ends, God will be there to receive him,. Perhaps asserting that the Lord is forgiving.
SPEAKING OF DEATH WITH THE DYING
The common question “Should the doctor tell?”carries the false implication that the doctor knows all about the patient’s approaching death and the patient knows nothing. However doctors are far from omniscient. Even if they have no doubt that their patient’s condition will be fatal, they can rarely foretell the time of death with any accuracy unless it is close at hand. Also, as has been clearly shown, patients are not necessarily unaware of what is happening; many have a very clear idea that they are dying. Rather than putting a choice between telling or not telling, it would be more useful to ask other questions. Should we encourage or divert a patient who begins to speak of matters that will lead to talk of dying? How freely should we speak to him about it? Should we lie to him if we suspect he only wants to be told that all will be well? If he sincerely wishes to know if his illness will be fatal, should his suppositions be confirmed? If he never asks outright, have we a duty to tell him? Is it right to deny knowledge of dying to those who ask or wrong to tell those who show no wish to know? Should we allow the awareness of dying to grow gradually, or should patients who are mortally ill know this early on, so that they may attain greater acceptance of dying? If they are to be told more openly, how should such knowledge be given? How do people react to being told? These questions, all part of that over-simplified, ‘Should the doctor tell?’, can have no universally accepted answer. Individuals differ and ethical beliefs or current opinions will influence judgment.
Some patients if not freely discussed with may feel cruelly isolated if he does not like the ‘conspiracy of silence’ (This may be likened to a young woman with her first pregnancy not given adequate information of the impending labour and childbirth)
Some patients may need to be told so they can put family affairs and business in order. the spiritual need for a man to know that he is dying may well take precedence over material matters at the end phase. Frequently the dying person spontaneously turns or returns to his religious beliefs.
In spite of these arguments which favour frankness with the dying, many doctors are reluctant to speak with them of death. They feel that most patients do not wish to raise the subject except to get reassurance, and that the truth is likely to be hurtful. If it is agree that patients are entitled to know about their fatal condition the next question is ‘How’ to speak of dying to them?
Several good reasons justify considerable candour with patients who are fatally ill. Clearly some discretion is required here. An abrupt statement to every patient that he is going to die is likely to do more harm than good. The nature and disposition of patients differ. Some may wish to know only a little of their illness.
An intelligent young woman, who was admitted to hospital with an obviously growing lump on one rib, was very troubled while investigations were done and treatment started without anyone telling her what it was. There was not much reassuring information to give her, as it was the sign of a widespread cancer. She wanted to know something, however. She was told that it was a tumour and that the X-rays had shown up one or two smaller ones. They would be treated by radiotherapy and, it was correctly said, her condition would improve considerable. This was as much as she wanted to know at that time. She had been very anxious, but after this talk she was less so. She was quite sad for a day or two, and then her spirits recovered.
Some dying patients want to know even less. Some may not want to hear a word about the nature of their condition. It is not an easy problem when a patient asks about his incurable illness in a way that indicates his need for reassurance of, at least hope. He asks “It’s not cancer, is it, doctor?” Or “Will I get better?”
The result is often a hasty untruthful reassurance. If this is given in an atmosphere of doubt and anxiety, present in both their minds, little good will be done to the ill perosn’s morale. If the question has been met with a hasty denial, or misleadingly optimistic view, this may be accepted with gratitude. Sometimes it is taken as a more definite answer than was intended. The ill person may even, by a series of further questions based on the first slanted answer, wring out a more emphatic denial of fatal disease than one would wish to give. This is disturbing, but is not necessarily a catastrophe, even if the patient later comes to realize that his first misgivings were well-founded.
In practice, probably the best an easiest way to broach the matter of dying with a mortally ill person is just to allow him to speak of his suspicious or knowledge of the outcome. If necessary, he can be asked how he feels and shown that more than the polite stereotyped answer is wanted. If the patient mentions that he feels upset he an be encouraged to talk about it. Then frequently the doctor will find that there is little for him to ‘tell’, all that is required is for him to listen with sympathy. In these circumstances the dying person does not usually ask for reassurance or praise for his courage.
Many doctors prefer to see an oblique approach for letting the patient know that he may be dying. Without any deception or lies, they aim to allow an awareness of the outcome to grow. If need be, a germ of realization is planted, but hope is never utterly excluded. Discussion can be reasonably frank, but the emphasis is on the favourable aspects
It is to be remembered that while doctors are trying to judge their patients’ capacity to stand unpleasant news, many patients are equally making their intuitive judgments of whether the doctor can bear sincere but difficult questions. They often have a very accurate idea of which doctor is quite unaccustomed or unsuited to being frank about fatal illness to the person most concerned. I have often been told by understanding people, towards the end of their life, that they knew that the doctor looking after them could not easily talk about this. “He feels he’s got to get people well and I couldn’t very well talk to him about not getting better”, said a woman who knew she would soon die. If a patient is firmly insistent and his doctor is honest, frank conversations do take place. ‘I asked him what they’d found and then I asked him if it was cancer. And now I know it’s cancer and they haven’t been able to take it all away. There’s only one in a thousand chance of recovery.’ The physician who had been questioned by this man said that he felt that he had probably been more perturbed by the conversation than the patient had.
Many patients have said that they were “relieved” at the chance of talking openly about the probability that they are dying. As many gain comfort from this, they should not be denied the opportunity.
A man who had succeeded in life, who had been in control of his life, with strong and fulfilling relationships and warm family ties may, in spite of his apparent stability, be unable to cope with the threat of so much loss. The less happy person may be better prepared to give up his life.
As a general rule learning that an illness is likely to be fatal produces a period of disquiet, even dismay, although this may be concealed.
PROLONGING LIFE AND HASTENING LIFE
Even when it is clear that a patient has reached the terminal phase of a fatal condition, it is not easy to give up treatments or investigations which have practically no hope of bringing him a further lease of worthwhile life.
To what extent should we fight against a seemingly inevitable death? Should a doctor embark on radical measures that may bring discomfort to the last day? Or should he quietly bring comfort to the dying? And if it is acknowledged that a dying patient’s principal need is to be relieved of distress during the last fragment of his life, is there no good reason to consider shortening the period of dying if the period only promises to bring much suffering?
The dying person must believe his doctor will judge right his plan of treatment. When no further attempt at prolonging life is warranted, the patient must still have an implicit trust that although he may not want to die, this decision is right, and he should not feel that he has just been abandoned.
The doctor must make such decision about maintaining life in the light of the patient’s Christian preparedness for death and on other factors such as the patient’s medical condition and prospects, his wishes and beliefs.
Owing to our increasing ingenuity over keeping people alive, however, the problem of prolonging limited lives is going to become more frequent and society will need to be more explicit over the ethics of letting people die.
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When Socrates was on trial for his life, his words were:
“No one knows with regard to death whether it is not really the greatest blessing that can happen to man; but people dread it as though they were certain that it is the greatest evil…Now it is time that we were going. I to die and you to live; but which of us has the happier prospect is unknown to anyone but God.”
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HASTENING DEATH
If it is permissible to allow mortally ill people to die, one cannot help questioning why it should be necessary to wait for the disease to kill them if their remaining life is to contain much physical or mental suffering
Could not euthanasia, in its current sense of bringing about an easy death, be available for those who wish their remaining troubled fragment of life to be brought to an end? The Euthanasia Society, founded in 1935, hopes to encourage public opinion and promote legislation for voluntary euthanasia. They have no difficulty in finding examples of people who have suffered a good deal in their terminal illness and most doctors could add further distressing cases. As long as one can truly say that for the patient merciful death has been too long in coming, there is some justification for euthanasia. It seems a terrible indictment that the main argument for euthanasia is that many suffer unduly because there is a lack of preparation and provision for the total care of the dying.
Many do believe in an orthodox view of death and their faith sustains them in any uncertainty they may feel when death comes near, be it their own or of someone dear to them. Those who are not upheld by religious convictions need not resort to total mental evasion of the topic and so risk being overwhelmed when death comes too lose. The majority of people face dying or loss of a loved one with courage, even if they do not pretend to understand death.
When Socrates was on trial for his life, his words were:
“No one knows with regard to death whether it is not really the greatest blessing that can happen to man; but people dread it as though they were certain that it is the greatest evil…”
When he left the court, condemned to death, he could say with calm sincerity,
“Now it is time that we were going. I to die and you to live; but which of us has the happier prospect is unknown to anyone but God.”
— THE END —
REACTIONS ARE CORDIALLY WELCOME
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SHORT; SHARP; SERIOUS
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Thanks for the great article