The emotional impact of cancer on patients and their families* By C. MURRAY PARKES, (London) CANCER invades a family in much the same way that it invades a human body. At first, locally, there are signs that all is not well but little general reaction; then, as the tumour grows and the diagnosis becomes more obvious there is a general mobilization of resources, the family focuses attention upon the damaged part; sacrifices are made, a man may sacrifice a limb in the hope that this will save his life, his wife gives up her job or neglects the children to ensure that she can do everything to preserve him. If the sacrifices pay off he may recover, but if not there follows a period of deterioration when reserves of strength are used up, the patient's body grows thinner and weaker, and the family find that their reserves are also drained. With the patient's death the family occasionally disintegrates but more often it begins a lengthy and painful process of restructuring whose outcome is always uncertain and sometimes disastrous to the lives of its members. Cancers of the ear, nose and throat are not essentially different from cancers arising in other parts of the body although there are some problems which arise more frequently in association with these tumours than they do when the primary tumour is elsewhere. In a series of thirty-one patients who died from cancers of the ear, nose and throat at St. Christopher's Hospice, the majority had some visible deformity, or some difficulty in swallowing and there were sizeable minorities who suffered defects in communication, most often loss of speech. Other symptoms which were frequently complained of but which were no more frequent in ear, nose and throat patients than in those with other forms of cancer were pain, complained of by 84 per cent, anorexia 77 per cent (usually with considerable loss of weight), dyspnoea (in 42 per cent) and, no surprise to nurses, constipation (61 per cent). Let us look first at the overall course of events as they impinge upon the patient. In particular let us consider the situation of the patient whose illness will end fatally. This has become the subject of a sizeable literature in recent years and I shall not attempt to review this. In some respects the literature is confusing—thus we find some writers claiming that denial is the rule and that no patient is able to confront the prospect of his own * Revised version of paper read to the Section of Laryngology, Royal Society of Medicine, 7 March 1975. 127I
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C. Murray Parkes death. On the other hand writers such as Hinton have shown that a half of the patients whom he interviewed before death 'were neither ignorant nor evasive of the fact that their illness might be fatal'. Our own figures, for what they are worth, are not much different from Hinton's. Among the thirty-one successive cancers of the ear, nose and throat, a third were recorded as having had full insight into diagnosis and prognosis, a third had partial insight into the diagnosis but not necessarily the prognosis and in the remaining third there was no evidence recorded in the notes of what the patient thought. This was usually because the patient had not disclosed his ideas on the matter or asked questions which indicated a wish to know. (The case notes at St. Christopher's Hospice contain a special pink sheet on which doctors, nurses or others are expected to record any disclosure which the patient makes about the nature of his illness.) Taken overall only 6 per cent of all patients express a belief that they do not have a terminal illness or are getting better, but there were no ear, nose and throat cases who said this, perhaps because it is difficult to deny the existence of a tumour that is usually visible to the naked eye in its later stages. In the earlier stages, of course, denial is much easier, and most of these patients had gone through a stage when they had fully expected their treatment to be successful. Fifty-three per cent had undergone some form of surgical excision, 90 per cent had had a course of radiotherapy and 13 per cent cytotoxic drugs. Nobody wants to believe that they have a terminal illness and it is not surprising to find both patient and family placing the most optimistic possible interpretation on the information which they are given by the doctor and on the outcome of the treatment which they receive. Some doctors adopt a deliberate policy of concealing the nature of the illness from the patient though not, usually from the family. Despite this it seems to me that both patients and family members are faced with the need to undergo a process of realization. By this I mean that they need to abandon one view of the world, a view which has been built up and elaborated over many years of their lives, and to substitute another, more appropriate view. This is no easy task. A man's view of his world is determined by the totality of his life experience up to the present moment and it is not possible for him to change his basic assumptions in a moment. Changes of this type have been termed psycho-social transitions and they take time and energy. Several studies now indicate that psycho-social transitions follow a pattern which is not completely predictable but which is sufficiently consistent for us to be able to begin to plot its course (Parkes, 1972). If the change is relatively sudden or it has not been expected the most immediate reaction is likely to be one of numbness or disbelief. T just can't take it in. It can't be true.' If the situation is ambiguous, as it usually is in the early stages of cancer, then it may be possible to avoid confronting
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The emotional impact of cancer on patients and their families the reality of what is happening for a considerable length of time, the patient will overlook evidence that his physical state is worsening. Eventually the evidence of deterioration becomes too obvious to ignore and he will then enter a phase of restless anxiety and pining. Having recognized that there is a major discrepancy between the world that is and the world that had been taken for granted up to now the individual tries every way to get back the world he has lost. He goes over in his mind the events which led up to the present situation in an attempt to find what went wrong as if, even at this stage, things could be put right. He may become aggressive or angry with people whom he sees as standing in his way or blame the treatments or drugs which he has received for the symptoms which he now has. Often there is an element of what Elizabeth Kiibler Ross (1970) calls 'bargaining'—'I only want to get well enough to go home once more, if I can do that, I shall be happy to come back here to die'. But we should not expect the patient to keep his side of the bargain if we do enable him to get home 'once more'. There is always room for more bargains. Alternatively the dying patient may seek various kinds of magical cures from unorthodox practitioners or he may invent his own magic—'I have a theory that cancer is all psychological and that a man only has to want to get better strongly enough for it to come about,' said one of my patients. Any relief of symptoms which is achieved by palliative means is then taken as evidence that the magic is working. Another patient was discharged home after being admitted for pain control. But he continued to come up to the hospital to attend my patients' group. He assured the patients in the group, 'I prayed to God every day again and again, "God cure me. God cure me," and he's done it'. Then he added as an afterthought, 'Of course I'm not quite right yet, but he has cured me of the cancer'. The group, at this time, had been talking about the plan of two of their members to visit Lourdes and had made a distinction between two types of miracle, the miracle of cure and the miracle of acceptance. When, subsequently, this patient's symptoms again got worse, he started thinking hard about the second type of miracle and indicated that he was now beginning to realize that he was not cured. But he still swung back to cling to the hope of cure when he began to get anxious. Despite this type of oscillation there is a greater and greater tendency, as the disease progresses, for the patient to give up, a few at a time, many of the assumptions about himself which have been invalidated by the illness. He may, for instance, decide that he is not going to walk again. But that does not necessarily mean that he expects to die. And even when he decides that a fatal termination is likely he can always place this event at some remote time in the future. Realization, therefore, tends to occur in fits and starts which often correspond to a fresh incident in the course of the illness—a new symptom appears, hospital admission is decided upon or the patient is finally compelled to take to his bed. Events of this 1273
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C. Murray Parkes kind are often followed by a period of depression or 'giving up'. For a while he becomes apathetic, withdraws from human company and loses interest in the world around him. But given time, and gentle encouragement, he will usually emerge from this depressive phase into a phase of quiet acceptance which will last until the next set back occurs. And if circumstances of care are good and the disease slowly progressive and not complicated by particularly unpleasant or frightening symptoms, there is every chance that the final phase of life will be peaceful and associated with a great deal of quiet enjoyment of the love and care which the family are pleased to give if only the doctors and nurses will let them. To recapitulate, the patient, in passing from a state of relative fitness to final decline, tends to pass through fourphases—(i) Numbness or denial, (2) Pining or struggle, (3) Depression or giving up and (4) Acceptance. These phases are by no means clear cut, he may pass backwards and forwards between them, he may be predisposed by temperament or other reasons to 'get stuck' at any phase or the disease may progress so rapidly that he dies before the sequence is completed. Nevertheless the delineation of the sequence is of some value since it allows us some kind of a yardstick by which we can assess progress and evaluate the consequences of our care. We should not feel, for instance, that our patients should never be allowed to become depressed. This seems to a necessary phase for most people and, provided it does not go on too long, people are best left alone to come through it. For the family members too there is a process of realization to be gone through and, like that of the patient, this tends to proceed in fits and starts. Because they are usually given more information at an early stage in the illness close family members start the process sooner than the patient and we tend to assume that they will always be one jump ahead of the patient and able to support him through the successive disappointments of the illness. But I think there is another factor operating here which helps close family members to support the patient—this is our capacity to postpone grief. You are no doubt aware of the way so many family members reply to any concern which we show for their welfare, 'Don't you worry about me, doctor, I'll be all right. He's the one you should be worrying about.' By focusing all their attention on the needs of the patient and by denying that they have any needs of their own family members usually succeed in pushing out of their minds all thoughts of the future. They are bound to do this, not only for fear that such thoughts will cause them to 'break down' and betray their feelings to the patient, but also because there are good psychological reasons why it is dangerous to anticipate and plan for one's own life after the patient's death. We don't, for instance, buy the coffin until the patient is dead for fear that such an act will hasten or bring about the death. This taboo seems to derive from the association between a plan and a wish—if we plan for something we may come to 1274
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The emotional impact of cancer on patients and their families wish it and in terms of mental dynamics a wish is akin to the acts which bring it about. Hence the woman who plans what she will do when her husband dies may end up feeling that it was her plans which killed him— she will be the murderer. It seems, then, that however drawn out the patients' death may be, there is still a process of realization to be undertaken after his death. The death itself may be a relief. Even so, within a short time those who are closest to the patient will usually find themselves grieving. If the death was rapid or in any way unexpected there will usually be an immediate reaction of numbness or disbelief. But since death is such an unambiguous event this will not normally last for more than a few hours to a few days. The survivor will then enter a phase of pining or struggle in which he or she finds herself going over in her mind the events leading up to the loss, bitterly seeking for something or someone to blame and restlessly searching as if she could somehow recover the person who is now lost to her. So strong is her need to search that she may even misidentify sights and sounds around her as indicating the return of the lost person. She may think she sees her husband's car approaching along the road or catch sight of him in the street. But such misapprehensions are fleeting and soon disproved by experience. Nevertheless a strong sense of the unseen presence of the dead person is less easily disproved and may persist for many years as a normal accompaniment of grief. As time passes, however, the intensity and duration of these episodes of pining, the so-called 'pangs of grief tends to diminish and the bereaved person becomes apathetic and withdrawn, feeling that there is now no> hope of recovering the person who has died and no future left worth. living for. Only slowly and intermittently does he or she emerge from this depressive phase to accept the loss and to find new directions and new purposes in life. The total process of grieving after a major bereavement, say the loss of a husband by a woman of 50, will probably take several years and even then it is possible for events which bring back the memory of the lost person to initiate yet another episode of pining. This is surprising when we compare it with the grief of the dying patient for this is often completed within a few weeks or months. I would hazard a guess that there are two factors which hasten the process of transition in the patient—one is the progression of the illness itself which, in the case of most cancers, gradually seems to reduce a person's appetite for life or vis a tergo. The other is the fact that, since there are no realistic plans which a person can make for living after his death, there is no need for him to begin the stuggle to rehabilitate himself. All that he needs to do is to accept the 'here and now' situation. Interestingly the way a person reacts to his illness may affect the duration of his life. Thus Weisman and Worden (1975) have shown in a recent paper that patients with cancer who subsequently died sooner than had been 1275
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C. Murray Parkes expected (from statistical studies of the particular form of cancer from which they were suffering), were significantly more likely than other patients to have reacted to their illness by becoming lastingly pessimistic, depressed and wishing for death. They were also likely to have been people who had suffered childhood losses and to have had lasting difficulties in making social relationships. On the other hand patients who had good relations with others, received close and intimate support from family and friends, accepted the seriousness of their illness, co-operated in treatment but in the end, accepted their fate, particularly if they were Jewish and of low socio-economic status, tended to survive longer than predicted. The implications of this are clear. If we can help the patient and his family to come to terms with the illness, to stay close to each other and to develop the type of closeness with the medical and nursing staff which reassures them that they will not be allowed to suffer and that we can be relied upon to stay close whatever happens, we shall not only make patient and family more contented, but we may even prolong life. We need to show them by our behaviour (and non-verbal behaviour is much more important than words) that we feel secure and confident. Not by making unrealistic promises but by trying to create an atmosphere in which, as one patient put it to me, 'It is safe to die here'. This does not mean that we have to force every patient to face facts which he is frightened to face. But once we have created such an environment we shall often find that the patient will himself tell us the diagnosis or the prognosis—all we have to do is to confirm what he already knows. Problems will arise, and there are some which are especially difficult for patients with a cancer of the ear, nose or throat. The most difficult to handle are, perhaps, the communication defects. The patient who can no longer speak is not only disabled himself but he disables everyone who tries to communicate with him. We too feel frustrated and annoyed by his inability to talk and it is only too easy for us to withdraw, to stop trying to understand. I was recently asked to see just such a patient who had become very depressed after losing her speech. I suggested that she bring out a news sheet for her fellow patients, her reply reads, 'Patients don't want four letter words'—which is all she felt like uttering. Only great patience on the part of the nursing staff with, perhaps, the judicious use of a tranquillizer or anti-depressant when needed will enable the withdrawn patient to feel secure enough to make the effort to communicate. Fears are not always justified. We should enquire about any family members who have died from cancer because a person who has seen someone else die will tend to expect the same end if they have a similar disease. This may be reassuring if the circumstances of care were good and the death a peaceful one. But one woman of fifty-five was terrified when I first went to see her. She lay with her head one inch above the pillow and edged 1276
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The emotional impact of cancer on patients and their families away from me in the bed. It transpired that her sister had also had a cancer of the throat and had had a bad time during the six months she took to die. She had been tube fed and our patient said she would rather 'get it over now' than go through all that. Her thyroid tumour was hurting her whenever she swallowed and before we could do anything else to help her it was essential to relieve her pain. Once that was done she gradually relaxed and allowed the staff to come closer. With their support she expressed appropriate grief for the loss of the home she loved and her husband and 13-year-old son. She seemed to be coming through this when she died suddenly and unexpectedly from a pulmonary embolus. Pain was also a problem in a man of 60 with a huge invasive growth affecting the left mandible and lower part of the face. He was deeply depressed and asking for euthanasia when first admitted but even if we had not been opposed to giving this on his own account it was clear that his wife was not yet ready for him to die. She had the idea that we could simply relieve his pain and he would then be fit to return home again. In fact the patient was very ill indeed and there was never any prospect of him returning home. It was possible, however, to relieve his pain and to give him the kind of attention which made life tolerable for him again though it was never pleasant. His wife then found it possible to relax and to find the security to prepare herself for his death. Two weeks after his admission she said to me for the first time, 'I'm ready for him to go now'. He died quietly the following day. For the person who has suffered a lot of pain the fear of pain is almost as much of a problem as the pain itself. We need to convince the patient both by our words and our actions that we understand this and that we shall never allow him to suffer severe pain again. To fufil this promise we tend to give four hourly doses of narcotic drugs in whatever dosage is necessary to prevent pain. In the majority of cases it is possible to achieve relief from pain without seriously impairing the patients' mental faculties. In our series of thirty-one deaths from cancer of the ear, nose and throat only 10 per cent were said to have been unconscious during the period preceding death, consciousness was blurred in another 13 per cent 74 per cent were classed as 'peaceful'. There were only two patients (6 per cent) who were said to have been 'distressed' at the time of death. The surprising thing is the fact that, despite the awful forms which terminal cancers of the ear, nose and throat can take so many patients do eventually seem to come to terms with it. Let me give one more example Mrs. Harris, a woman of forty six was dying from a carcinoma of the oral cavity of five years duration. She had undergone, successively, a hemiglossectomy, a hemimandibulectomy, and after a severe haemorrhage from the tongue, a ligation of the internal cartoid artery which had caused the remaining half of her tongue to slough and left her in severe pain. Her 1277
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C. Murray Parkes husband who attempted to care for her at home later regretted that this operation had ever been carried out and claimed that it would have been kinder to have let her die. By the time she came to us the tumour had extended into her cranial cavity and produced diplopia. She was unable to speak and had dysphagia which was so severe that she had to stand up in order to swallow fluids. Despite all this Mrs. Harris, once her pain was relieved, became amazingly cheerful. She enchanted the nurses who became quite devoted to her and the brief periods of depression which she suffered were quite appropriately associated with further deterioration in her condition and soon passed. Three days before her death her husband, who had at first felt that he was of no more use to her, admitted, and I quote, 'It's like heaven here'—by which remark he seemed to be expressing his awareness of the contrast between her present condition and her former state when he had struggled to care for her at home. During the last six days of her life it was necessary to increase Mrs. Harris's diamorphine dosage to sixty mgms by intramuscular injection four hourly but although this made her drowsy she remained in touch until she died peacefully in her husband's arms. Because of the nature of their symptoms a large proportion of patients with ear, nose and throat cancers will probably need to be cared for in hospital. But that does not mean that they may not also be able to spend much time at home provided the circumstances of care are good and the family are properly supported. To do this we make use of a team of three visiting nurses who provide a very efficient consulting service for families, G.P.s and district nurses. Unfortunately there is no time to describe that work in detail. Nor is there time for me to describe the two maj or research proj ects which have now demonstrated the efficacy of the type of in-patient care which is provided at St. Christopher's Hospice from the viewpoint of patients and families. In conclusion I must point out that terminal care does not necessarily end with the death of a patient. At that point the patient's troubles are, we hope, at an end, but those of the surviving family members may just be beginning. At St. Christopher's Hospice we rely upon assessments made by the ward staff to identify any family members who are likely to get into difficulties after bereavement. At the present time we are visiting about 20 per cent of bereaved families in their homes ten to fourteen days after the funeral and giving whatever help seems to be needed in succeeding weeks to see the family through the psycho-social transition of bereavement. The visits are made by someone who is already known to the family, this is usually a nurse. The visitors meet with me once a month to discuss any problems which have arisen. In a random-allocation trial which will be reported in detail elsewhere 1278
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The emotional impact of cancer on patients and their families nineteen 'high risk' family members who had been supported in this way have been compared with twenty-two who had received no such support. The supported group, twenty months after bereavement were distinguished from the contol group in having less depression, fewer psychosomatic symptoms reflecting persisting anxiety and autonomic symptoms and less inclination to increase in their consumption of alcohol, tobacco and tranquillizers. We conclude that a little support given to a family before the patient's death and during the first few weeks of bereavement can go a very long way. REFERENCES J. (1967) Dying. Penguin Books, Harmondsworth. C. M. (1972) 'Components of the reaction to loss of a limb, spouse or home.' Journal of Psychosomatic Research, 16, 343-9. Ross, E. K, (1970) On Death and Dying. Tavistock, London. WEISMAN, A. D., and WORDEN, J. W. (1975) 'Psychosocial analysis of cancer deaths.' Awaiting publication in Omega. HINTON, PARKES,
St. Christopher's Hospice 51 Lawrie Park Road London SE26 6DZ
1279
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C. Murray Parkes death. On the other hand writers such as Hinton have shown that a half of the patients whom he interviewed before death 'were neither ignorant nor evasive of the fact that their illness might be fatal'. Our own figures, for what they are worth, are not much different from Hinton's. Among the thirty-one successive cancers of the ear, nose and throat, a third were recorded as having had full insight into diagnosis and prognosis, a third had partial insight into the diagnosis but not necessarily the prognosis and in the remaining third there was no evidence recorded in the notes of what the patient thought. This was usually because the patient had not disclosed his ideas on the matter or asked questions which indicated a wish to know. (The case notes at St. Christopher's Hospice contain a special pink sheet on which doctors, nurses or others are expected to record any disclosure which the patient makes about the nature of his illness.) Taken overall only 6 per cent of all patients express a belief that they do not have a terminal illness or are getting better, but there were no ear, nose and throat cases who said this, perhaps because it is difficult to deny the existence of a tumour that is usually visible to the naked eye in its later stages. In the earlier stages, of course, denial is much easier, and most of these patients had gone through a stage when they had fully expected their treatment to be successful. Fifty-three per cent had undergone some form of surgical excision, 90 per cent had had a course of radiotherapy and 13 per cent cytotoxic drugs. Nobody wants to believe that they have a terminal illness and it is not surprising to find both patient and family placing the most optimistic possible interpretation on the information which they are given by the doctor and on the outcome of the treatment which they receive. Some doctors adopt a deliberate policy of concealing the nature of the illness from the patient though not, usually from the family. Despite this it seems to me that both patients and family members are faced with the need to undergo a process of realization. By this I mean that they need to abandon one view of the world, a view which has been built up and elaborated over many years of their lives, and to substitute another, more appropriate view. This is no easy task. A man's view of his world is determined by the totality of his life experience up to the present moment and it is not possible for him to change his basic assumptions in a moment. Changes of this type have been termed psycho-social transitions and they take time and energy. Several studies now indicate that psycho-social transitions follow a pattern which is not completely predictable but which is sufficiently consistent for us to be able to begin to plot its course (Parkes, 1972). If the change is relatively sudden or it has not been expected the most immediate reaction is likely to be one of numbness or disbelief. T just can't take it in. It can't be true.' If the situation is ambiguous, as it usually is in the early stages of cancer, then it may be possible to avoid confronting
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The emotional impact of cancer on patients and their families the reality of what is happening for a considerable length of time, the patient will overlook evidence that his physical state is worsening. Eventually the evidence of deterioration becomes too obvious to ignore and he will then enter a phase of restless anxiety and pining. Having recognized that there is a major discrepancy between the world that is and the world that had been taken for granted up to now the individual tries every way to get back the world he has lost. He goes over in his mind the events which led up to the present situation in an attempt to find what went wrong as if, even at this stage, things could be put right. He may become aggressive or angry with people whom he sees as standing in his way or blame the treatments or drugs which he has received for the symptoms which he now has. Often there is an element of what Elizabeth Kiibler Ross (1970) calls 'bargaining'—'I only want to get well enough to go home once more, if I can do that, I shall be happy to come back here to die'. But we should not expect the patient to keep his side of the bargain if we do enable him to get home 'once more'. There is always room for more bargains. Alternatively the dying patient may seek various kinds of magical cures from unorthodox practitioners or he may invent his own magic—'I have a theory that cancer is all psychological and that a man only has to want to get better strongly enough for it to come about,' said one of my patients. Any relief of symptoms which is achieved by palliative means is then taken as evidence that the magic is working. Another patient was discharged home after being admitted for pain control. But he continued to come up to the hospital to attend my patients' group. He assured the patients in the group, 'I prayed to God every day again and again, "God cure me. God cure me," and he's done it'. Then he added as an afterthought, 'Of course I'm not quite right yet, but he has cured me of the cancer'. The group, at this time, had been talking about the plan of two of their members to visit Lourdes and had made a distinction between two types of miracle, the miracle of cure and the miracle of acceptance. When, subsequently, this patient's symptoms again got worse, he started thinking hard about the second type of miracle and indicated that he was now beginning to realize that he was not cured. But he still swung back to cling to the hope of cure when he began to get anxious. Despite this type of oscillation there is a greater and greater tendency, as the disease progresses, for the patient to give up, a few at a time, many of the assumptions about himself which have been invalidated by the illness. He may, for instance, decide that he is not going to walk again. But that does not necessarily mean that he expects to die. And even when he decides that a fatal termination is likely he can always place this event at some remote time in the future. Realization, therefore, tends to occur in fits and starts which often correspond to a fresh incident in the course of the illness—a new symptom appears, hospital admission is decided upon or the patient is finally compelled to take to his bed. Events of this 1273
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C. Murray Parkes kind are often followed by a period of depression or 'giving up'. For a while he becomes apathetic, withdraws from human company and loses interest in the world around him. But given time, and gentle encouragement, he will usually emerge from this depressive phase into a phase of quiet acceptance which will last until the next set back occurs. And if circumstances of care are good and the disease slowly progressive and not complicated by particularly unpleasant or frightening symptoms, there is every chance that the final phase of life will be peaceful and associated with a great deal of quiet enjoyment of the love and care which the family are pleased to give if only the doctors and nurses will let them. To recapitulate, the patient, in passing from a state of relative fitness to final decline, tends to pass through fourphases—(i) Numbness or denial, (2) Pining or struggle, (3) Depression or giving up and (4) Acceptance. These phases are by no means clear cut, he may pass backwards and forwards between them, he may be predisposed by temperament or other reasons to 'get stuck' at any phase or the disease may progress so rapidly that he dies before the sequence is completed. Nevertheless the delineation of the sequence is of some value since it allows us some kind of a yardstick by which we can assess progress and evaluate the consequences of our care. We should not feel, for instance, that our patients should never be allowed to become depressed. This seems to a necessary phase for most people and, provided it does not go on too long, people are best left alone to come through it. For the family members too there is a process of realization to be gone through and, like that of the patient, this tends to proceed in fits and starts. Because they are usually given more information at an early stage in the illness close family members start the process sooner than the patient and we tend to assume that they will always be one jump ahead of the patient and able to support him through the successive disappointments of the illness. But I think there is another factor operating here which helps close family members to support the patient—this is our capacity to postpone grief. You are no doubt aware of the way so many family members reply to any concern which we show for their welfare, 'Don't you worry about me, doctor, I'll be all right. He's the one you should be worrying about.' By focusing all their attention on the needs of the patient and by denying that they have any needs of their own family members usually succeed in pushing out of their minds all thoughts of the future. They are bound to do this, not only for fear that such thoughts will cause them to 'break down' and betray their feelings to the patient, but also because there are good psychological reasons why it is dangerous to anticipate and plan for one's own life after the patient's death. We don't, for instance, buy the coffin until the patient is dead for fear that such an act will hasten or bring about the death. This taboo seems to derive from the association between a plan and a wish—if we plan for something we may come to 1274
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The emotional impact of cancer on patients and their families wish it and in terms of mental dynamics a wish is akin to the acts which bring it about. Hence the woman who plans what she will do when her husband dies may end up feeling that it was her plans which killed him— she will be the murderer. It seems, then, that however drawn out the patients' death may be, there is still a process of realization to be undertaken after his death. The death itself may be a relief. Even so, within a short time those who are closest to the patient will usually find themselves grieving. If the death was rapid or in any way unexpected there will usually be an immediate reaction of numbness or disbelief. But since death is such an unambiguous event this will not normally last for more than a few hours to a few days. The survivor will then enter a phase of pining or struggle in which he or she finds herself going over in her mind the events leading up to the loss, bitterly seeking for something or someone to blame and restlessly searching as if she could somehow recover the person who is now lost to her. So strong is her need to search that she may even misidentify sights and sounds around her as indicating the return of the lost person. She may think she sees her husband's car approaching along the road or catch sight of him in the street. But such misapprehensions are fleeting and soon disproved by experience. Nevertheless a strong sense of the unseen presence of the dead person is less easily disproved and may persist for many years as a normal accompaniment of grief. As time passes, however, the intensity and duration of these episodes of pining, the so-called 'pangs of grief tends to diminish and the bereaved person becomes apathetic and withdrawn, feeling that there is now no> hope of recovering the person who has died and no future left worth. living for. Only slowly and intermittently does he or she emerge from this depressive phase to accept the loss and to find new directions and new purposes in life. The total process of grieving after a major bereavement, say the loss of a husband by a woman of 50, will probably take several years and even then it is possible for events which bring back the memory of the lost person to initiate yet another episode of pining. This is surprising when we compare it with the grief of the dying patient for this is often completed within a few weeks or months. I would hazard a guess that there are two factors which hasten the process of transition in the patient—one is the progression of the illness itself which, in the case of most cancers, gradually seems to reduce a person's appetite for life or vis a tergo. The other is the fact that, since there are no realistic plans which a person can make for living after his death, there is no need for him to begin the stuggle to rehabilitate himself. All that he needs to do is to accept the 'here and now' situation. Interestingly the way a person reacts to his illness may affect the duration of his life. Thus Weisman and Worden (1975) have shown in a recent paper that patients with cancer who subsequently died sooner than had been 1275
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C. Murray Parkes expected (from statistical studies of the particular form of cancer from which they were suffering), were significantly more likely than other patients to have reacted to their illness by becoming lastingly pessimistic, depressed and wishing for death. They were also likely to have been people who had suffered childhood losses and to have had lasting difficulties in making social relationships. On the other hand patients who had good relations with others, received close and intimate support from family and friends, accepted the seriousness of their illness, co-operated in treatment but in the end, accepted their fate, particularly if they were Jewish and of low socio-economic status, tended to survive longer than predicted. The implications of this are clear. If we can help the patient and his family to come to terms with the illness, to stay close to each other and to develop the type of closeness with the medical and nursing staff which reassures them that they will not be allowed to suffer and that we can be relied upon to stay close whatever happens, we shall not only make patient and family more contented, but we may even prolong life. We need to show them by our behaviour (and non-verbal behaviour is much more important than words) that we feel secure and confident. Not by making unrealistic promises but by trying to create an atmosphere in which, as one patient put it to me, 'It is safe to die here'. This does not mean that we have to force every patient to face facts which he is frightened to face. But once we have created such an environment we shall often find that the patient will himself tell us the diagnosis or the prognosis—all we have to do is to confirm what he already knows. Problems will arise, and there are some which are especially difficult for patients with a cancer of the ear, nose or throat. The most difficult to handle are, perhaps, the communication defects. The patient who can no longer speak is not only disabled himself but he disables everyone who tries to communicate with him. We too feel frustrated and annoyed by his inability to talk and it is only too easy for us to withdraw, to stop trying to understand. I was recently asked to see just such a patient who had become very depressed after losing her speech. I suggested that she bring out a news sheet for her fellow patients, her reply reads, 'Patients don't want four letter words'—which is all she felt like uttering. Only great patience on the part of the nursing staff with, perhaps, the judicious use of a tranquillizer or anti-depressant when needed will enable the withdrawn patient to feel secure enough to make the effort to communicate. Fears are not always justified. We should enquire about any family members who have died from cancer because a person who has seen someone else die will tend to expect the same end if they have a similar disease. This may be reassuring if the circumstances of care were good and the death a peaceful one. But one woman of fifty-five was terrified when I first went to see her. She lay with her head one inch above the pillow and edged 1276
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The emotional impact of cancer on patients and their families away from me in the bed. It transpired that her sister had also had a cancer of the throat and had had a bad time during the six months she took to die. She had been tube fed and our patient said she would rather 'get it over now' than go through all that. Her thyroid tumour was hurting her whenever she swallowed and before we could do anything else to help her it was essential to relieve her pain. Once that was done she gradually relaxed and allowed the staff to come closer. With their support she expressed appropriate grief for the loss of the home she loved and her husband and 13-year-old son. She seemed to be coming through this when she died suddenly and unexpectedly from a pulmonary embolus. Pain was also a problem in a man of 60 with a huge invasive growth affecting the left mandible and lower part of the face. He was deeply depressed and asking for euthanasia when first admitted but even if we had not been opposed to giving this on his own account it was clear that his wife was not yet ready for him to die. She had the idea that we could simply relieve his pain and he would then be fit to return home again. In fact the patient was very ill indeed and there was never any prospect of him returning home. It was possible, however, to relieve his pain and to give him the kind of attention which made life tolerable for him again though it was never pleasant. His wife then found it possible to relax and to find the security to prepare herself for his death. Two weeks after his admission she said to me for the first time, 'I'm ready for him to go now'. He died quietly the following day. For the person who has suffered a lot of pain the fear of pain is almost as much of a problem as the pain itself. We need to convince the patient both by our words and our actions that we understand this and that we shall never allow him to suffer severe pain again. To fufil this promise we tend to give four hourly doses of narcotic drugs in whatever dosage is necessary to prevent pain. In the majority of cases it is possible to achieve relief from pain without seriously impairing the patients' mental faculties. In our series of thirty-one deaths from cancer of the ear, nose and throat only 10 per cent were said to have been unconscious during the period preceding death, consciousness was blurred in another 13 per cent 74 per cent were classed as 'peaceful'. There were only two patients (6 per cent) who were said to have been 'distressed' at the time of death. The surprising thing is the fact that, despite the awful forms which terminal cancers of the ear, nose and throat can take so many patients do eventually seem to come to terms with it. Let me give one more example Mrs. Harris, a woman of forty six was dying from a carcinoma of the oral cavity of five years duration. She had undergone, successively, a hemiglossectomy, a hemimandibulectomy, and after a severe haemorrhage from the tongue, a ligation of the internal cartoid artery which had caused the remaining half of her tongue to slough and left her in severe pain. Her 1277
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C. Murray Parkes husband who attempted to care for her at home later regretted that this operation had ever been carried out and claimed that it would have been kinder to have let her die. By the time she came to us the tumour had extended into her cranial cavity and produced diplopia. She was unable to speak and had dysphagia which was so severe that she had to stand up in order to swallow fluids. Despite all this Mrs. Harris, once her pain was relieved, became amazingly cheerful. She enchanted the nurses who became quite devoted to her and the brief periods of depression which she suffered were quite appropriately associated with further deterioration in her condition and soon passed. Three days before her death her husband, who had at first felt that he was of no more use to her, admitted, and I quote, 'It's like heaven here'—by which remark he seemed to be expressing his awareness of the contrast between her present condition and her former state when he had struggled to care for her at home. During the last six days of her life it was necessary to increase Mrs. Harris's diamorphine dosage to sixty mgms by intramuscular injection four hourly but although this made her drowsy she remained in touch until she died peacefully in her husband's arms. Because of the nature of their symptoms a large proportion of patients with ear, nose and throat cancers will probably need to be cared for in hospital. But that does not mean that they may not also be able to spend much time at home provided the circumstances of care are good and the family are properly supported. To do this we make use of a team of three visiting nurses who provide a very efficient consulting service for families, G.P.s and district nurses. Unfortunately there is no time to describe that work in detail. Nor is there time for me to describe the two maj or research proj ects which have now demonstrated the efficacy of the type of in-patient care which is provided at St. Christopher's Hospice from the viewpoint of patients and families. In conclusion I must point out that terminal care does not necessarily end with the death of a patient. At that point the patient's troubles are, we hope, at an end, but those of the surviving family members may just be beginning. At St. Christopher's Hospice we rely upon assessments made by the ward staff to identify any family members who are likely to get into difficulties after bereavement. At the present time we are visiting about 20 per cent of bereaved families in their homes ten to fourteen days after the funeral and giving whatever help seems to be needed in succeeding weeks to see the family through the psycho-social transition of bereavement. The visits are made by someone who is already known to the family, this is usually a nurse. The visitors meet with me once a month to discuss any problems which have arisen. In a random-allocation trial which will be reported in detail elsewhere 1278
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The emotional impact of cancer on patients and their families nineteen 'high risk' family members who had been supported in this way have been compared with twenty-two who had received no such support. The supported group, twenty months after bereavement were distinguished from the contol group in having less depression, fewer psychosomatic symptoms reflecting persisting anxiety and autonomic symptoms and less inclination to increase in their consumption of alcohol, tobacco and tranquillizers. We conclude that a little support given to a family before the patient's death and during the first few weeks of bereavement can go a very long way. REFERENCES J. (1967) Dying. Penguin Books, Harmondsworth. C. M. (1972) 'Components of the reaction to loss of a limb, spouse or home.' Journal of Psychosomatic Research, 16, 343-9. Ross, E. K, (1970) On Death and Dying. Tavistock, London. WEISMAN, A. D., and WORDEN, J. W. (1975) 'Psychosocial analysis of cancer deaths.' Awaiting publication in Omega. HINTON, PARKES,
St. Christopher's Hospice 51 Lawrie Park Road London SE26 6DZ
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