Caring to the end |
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Euthanasia has come to mean an act to end a person’s life. So far, in this country, discussion has referred to “voluntary euthanasia”. The term “passive euthanasia” is sometimes used to refer to a decision that a patient in extremis should not be subjected to troublesome treatments which cannot restore him to health, but this term is confusing and is better not used. Two bills to legalise euthanasia, either at a patient’s current request or in response to a form completed and witnessed in the past, were debated in the House of Lords in 1936 and in 1969. These bills and Baroness Wootton’s Incurable Patients Bill of 1976 were all defeated. Each attempted to introduce safeguards against pressure and abuse. But Lord Raglan, the proposer of one of these bills, has since said that “it may well be an insuperable problem to draw up a suitable declaration”. This is different from “advance declarations” that may be made, asking that inappropriate, life prolonging methods not be used in the case of incurable illness. They may help to clarify an unconscious patient’s wishes for both family and doctor. I believe there is no way in which the few who would wish for euthanasia or instruction on how to kill themselves can be offered a “quick way out” without society bringing pressures, conscious and unconscious, upon the many who are vulnerable. As one elderly woman wrote to The Times: “human nature being what it is, euthanasia would not remain voluntary for long”. Once there is no need to live, all too soon will people believe that they have no right to live, with all the demands that their living may make upon others. Many will come to feel that they are burdens and that their family and society are expecting this: “pressure, not freedom would be the result”, as a disabled patient typed for me on his Possum apparatus. When someone asks for euthanasia or turns to suicide, I believe in almost every case someone, or society as a whole, has failed that person. To suggest that such an act should be legalised is to offer a negative and dangerous answer to problems which should be solved by better means. While I would never judge someone who found his own situation so intolerable that he took his own life, I would certainly judge anyone who encouraged him to do so. I believe that the Christian answer is to work for better respect and good care and I think this would be true for all other religions. Natural Reaction The natural human reaction to seeing someone about to jump off a bridge is to stop him and find out what help can be given. Some 85% of those resuscitated after a suicide attempt are in fact glad to be alive after all. The few patients who are admitted to St. Christopher’s Hospice after such attempts are also glad to live their lives out after all once suffering is relieved. The work of all of us, professionals and public alike, is surely to recognise that such desperation exists and to offer all the help we can to ease it. Countless hospice patients have used well the time they would have lost had they had their lives ended before the disease finally took its course. One of the most constructive ways in which we can help is to deal with some of the common misapprehensions which generate fear. Terminal pain is inevitable and cannot be controlled. Nearly half the patients who die of cancer have little or no pain. If it does occur, it can be controlled while the patient remains active and alert. This most dreaded symptom and others that may accompany any deteriorating illness can be relieved, not only in special units but also in general hospitals and in the patient’s own home. The experience of the past 30 years has shown that much of the teaching about such treatment has been inadequate, but this is being remedied. Where patients still suffer unrelieved pain, as various articles and phone-ins have described, those treating them have failed to keep pace with the now well documented advances in treatment. Opiate drugs, especially oral morphine solution, have been shown to be safe and flexible and, used properly along with specific treatment where indicated, can control the terminal pain of cancer and other diseases. These drugs can remain effective for months. Doses do not inevitably escalate and drugs can easily be withdrawn if pain is controlled by other means. If people are unhappy about their use they should look at the literature that is available or ask nurses or doctors at the nearest hospice or pain clinic team. Only rarely will large doses be needed, but each patient has his own, sometimes changing, optimum dose. That so many patients still suffer unrelieved pain is inexcusable and is more often due to lack of knowledge and prejudice than lack of staff and money. Doctors have an automatic commitment to active treatment. The treatment of the symptoms of terminal disease is just as much a form of treatment as active therapy aimed at cure and palliative therapy aimed at the control of persistent disease. A doctor’s commitment is to treat his patient in whatever way is appropriate. When a patient is near death, a doctor is not obliged to embark upon or continue heroic treatment which has no prospect of benefit, such as using a respirator when a patient with motor neurone disease can no longer breathe for himself. The former Archbishop of Canterbury, Lord Coggan, expressed his support for this principle in 1978. A lawyer in this field takes the view that it is also a legal principle, saying that a doctor who continued treatment past this point would be behaving unethically if not unlawfully. The recent Report on Euthanasia from the British Medical Association repeats this from the doctors’ point of view. Codes of practice, such as the report of the Medical Royal Colleges on brain death and the discussion document of the Royal College of Nursing, both 1976, give authoritative guidelines. Involvement It is good that these things are discussed and the public and patient involvement have increased. We need such discussions if we are to make the best practice available to all. It is sad that after all these years the best argument the members of the Voluntary Euthanasia Society put forward for legalising euthanasia is the unnecessary suffering of far too many patients. But let us not stop talking. Both sides in the debate have a vendetta against pointless pain and impersonal indignity although our solutions are different. The present practice of a doctor killing a patient at their considered request in the Netherlands, which does not yet have the force of law, seems to me to present as many problems as it solves, particularly in the fears and pressures already reported among old people. All who reach old age are likely to endure a long period of dependence and possibly dementia. Many people are haunted by the thought of a prolonged deterioration of their faculties. This is by no means inevitable: less than 10% of the old people in this country are in institutions and only 20% of those over 80 have a serious brain failure (1981 figures). Some slowing occurs as age advances, but there would be far fewer devastating losses if people did not consider this inevitable and would bring the elderly to their doctors at an early stage. Many church and neighbourhood groups have formed small community voluntary organisations to help the elderly. A recent survey has shown how much such interest is growing. The best way to live on is to remain as active as possible and to receive the respect of others; the worst way is to be told continually how sad and undignified old age can be and how we should be free to ask to be rid of it. There is no way in which the country can afford good terminal care for all. Our ignorance and mistaken ideas are often to blame. In all branches of medicine and nursing we know that accurate assessment of a problem and effective treatment take far less time in the long run than haphazard or inept care. Although the percentage of the population who die in hospital continues to rise, most people spend longer at home during their entire terminal illness. Being at home for as long as possible is the choice for most patients and their families. Hospice care is expensive in staff at the bedside, but low in overhead costs and in all other areas. The cost per in-patient week has been shown to vary between 50% and 70% of the cost in teaching and general hospitals. Most new hospices (or continuing care units or homes) emphasise the development of a home care programme as an integral part of their operation and most of the recent groups are starting with this alone. Most of the 120 or so in-patient hospice units have a Home Care outreach and some 500 nurses in all are working as specialists alongside the regular community services. Hospices will only help directly a tiny fraction of those who are dying, but that is not their only or prime purpose. “They have two other very important roles — researching and teaching . . . (they) have advanced greatly the clinical pharmacology of terminal care. They really do, for instance, relieve physical pain in nearly all their patients. They use the same science and skill to help people to die peacefully that we surgeons use to preserve life in the operating theatre and intensive care unit. The teaching role of these hospices is very important, because the principles which they have developed can and must be applied in general hospitals and in people’s own homes. If we take the trouble to learn what the experts have to teach, most of us would do far more than we do now to help our parents, when the time comes, to die in peace, confident that we will care for them to the end” (From a surgeon). Most of us will take courage and struggle against adversity if we receive help and concern. If care gives a sense of personal worth to the end, living through this part of life brings reconciliations and achievements and families live on afterwards without the crippling questions and regrets that so often follow suicide and would, I feel, follow euthanasia. None of those who choose a quick way out can have a law to establish their right to it without undermining confidence and care for countless others. We all honour Captain Oates for walking out of the tent into the Antarctic storm to his death to save his friends, but those in the tent never suggested to him that he do so. I believe that to make voluntary euthanasia or assisted suicide lawful would be an irresponsible act, hindering help, pressurising the vulnerable and abrogating our true respect and responsibility to the frail, the old and the dying. But those of us who oppose such legislation have a responsibility to work so that no one should reach that desperate place in which he is driven to ask for it. This has been a Christian commitment down the ages and many of the present-day hospice teams work from the same foundation and, as always, welcome all who come. Since this article was first written the Hospice attitudes and skills have spread widely, both in the United Kingdom and in many countries overseas. The approach is also being interpreted in other areas of need, such as AIDS, and in general health services. Case Studies A series of pictures painted by St. Christopher’s patients illustrate how they saw their terminal pain. They show the feeling of being impaled by a red-hot iron, of being totally isolated from the world by the encircling muscles of tension, the sudden jab on movement, the implacable heaviness of pain, the conviction that one is a kind of scrap heap, the endless questions “Why’?” and the fears of a lonely, threatening journey. One woman, with a year’s history of unrelenting pain from a carcinoma of the pancreas, drew it as a small rodent boring into the side of a tree trunk. A few traces of green at the top were described to me as, “My life, trying to get through”. She was in St. Christopher’s for 11 weeks and a friend wrote to me after her death: It was nothing short of a miracle. When I last visited her in a previous hospital she was like a demented animal — consumed with pain, incoherent of speech, and quite vicious. I was very frightened, not knowing how to cope, and felt unable to face another visit. Words cannot describe my reaction when I saw her in St. Christopher’s — restored to the dignity of a calm, rational human being again . . . From then on I was able to remain with her for hours at a time, instead of minutes, holding conversation and discussing things of interest dear to her heart. . . By doing so I, too, have gained in spiritual strength. I can only thank you for making my friend’s last days bearable when once they were unendurable. Vital signs in a ward specialising in the control of terminal pain include the hand steady enough to draw, the mind alert enough to write poems and to play cards, and above all the spirit to enjoy the family visits and spend the last weekends at home. Mrs. T. Mrs. T., a woman of 47 years, married with three children (the youngest of whom was six years) was operated on for cancer of the bowel. She was not told her diagnosis, though her husband was fully informed. Eighteen months later, having been reasonably well, she developed signs of a recurrence of the disease and was treated with radiotherapy. The treatment gave no relief and within a few months she was very ill with constant severe pain and vomiting. At about this time the husband told his wife that she was not going to get better. Her despair and hopelessness were complete, she turned her face to the wall and refused to eat, for, as she said, ‘What is the point?’ She made an abortive attempt to take her own life. With this effort to end her life two of her sisters, who could not bear to see her suffering, were in sympathy. They therefore suggested to the husband that, as there were sufficient drugs in the house, they should combine them all and give them to the patient to ‘end it all’ and put her out of her misery. However, they disagreed and finally decided against this desperate plan. At this moment help came in the form of skilled and understanding medical and nursing care. With proper drugs her pain and vomiting were almost entirely controlled. She remained alert and able to take stock of her situation, to voice her fears and discuss her problems. With her symptoms relieved she began to take a pride in her appearance again and to eat. For nearly twelve months more this woman led a nearly normal life with her family. She went out, did the shopping, visited friends. Eleven months later she had to be admitted to a hospital where for a brief four weeks she slipped quietly downhill, dying tranquilly after only twenty-four hours of coma. Looking back, her husband is able to say that during that last bonus year of her life she not only enjoyed life, but gave her children the opportunity and the time to come to terms with the knowledge that she was going to die. Once her pain was relieved she never again asked for her life to be ended but, as she was dying, she repeated more than once with real satisfaction, ‘At least the children are a year older’. Had the attempt at suicide been successful, these children would undoubtedly have been deeply shock- ed. As it was they “took it all in their stride” (to quote their father), and there have been no traumatic effects beyond the normal grieving. Discussion It is likely that decisions regarding active steps to kill a patient will involve the whole family. In this case during the period of desperation some members of the family held conflicting views as to what was right. It is easy to picture the divisions and difficulties which would have arisen had the action they considered been taken. It takes time to assimilate a painful truth or to reorganise both thinking and living in a changed set of circumstances. “It takes a long time to know what it means to be a widow; it takes a long time to prepare oneself to die”. This is part of the pain of bereavement. Sudden deaths are frequently followed by marked distress and feelings of guilt and self-reproach and are often more difficult for the survivors to come to terms with than bereavement after expected deaths. Suicide may lead to particularly intractable problems for those left behind. Mrs. T. required strong analgesics, including narcotic drugs, over many months. They neither lost their effectiveness nor damped her strong personality. Their skilled use enabled her to live an active life until shortly before her death. They did much to give her and her family the extra time they all needed. Her husband was taught by the doctor and nurses in an out-patient and domiciliary department of a hospice to regulate the dose of her medication according to her needs which might change from day to day. Because of this careful assessment she never required any substantial increase in dose, and her husband had a great sense of achievement in helping her in this way. Miss W. Miss W. was transferred from the hospital which had recently treated her carcinoma of the thyroid and had given her a course of radiotherapy and radioactive iodine to bony secondaries. She had an infected ulcer on her right ankle which caused her some pain. During a conversation nearly two months after her admission she said to one of the doctors, “Of course I believe in euthanasia”. On being asked, “Supposing for the sake of argument you could have it, do you want it now?” She replied, “Good gracious, no!” A longer discussion followed. Her thesis was that she did not believe in suffering either for herself or for others, but she did not consider that she was then suffering sufficiently to ask for her life to be ended. She was prepared to continue living even though she found the restricted bed-ridden situation difficult to bear. Her ankle became more painful during the next few days and she became extremely apprehensive, fearing that any movement was going to hurt her. This fear greatly exacerbated the physical pain. While attempting to relieve her fears the doctor deliberately discussed euthanasia with her again. To the question, “We were talking about euthanasia some time ago; would you want it now?” she replied as quickly and as spontaneously as before, “No — I leave things to you”. She was given enough medication to ease her apprehension and to control her physical pain and became quiet and peaceful, dying about a week later. Discussion Requests for euthanasia must not always be taken at their face value, and it is important that the underlying meaning of such demands should be identified. Here it seems to have been a plea for the relief of pain and anxiety. Miss W. had no further need to ask for euthanasia once this relief had been given. Doctors working in this field find that they receive such requests from time to time and that, once the real question has been disentangled from what is often a somewhat confused story, there is rarely a further request. The crucial problem has been dealt with. In this case it was the doctor, not the patient, who initiated the return to the subject. By this time, however, Miss W., reassured that relief could and would be given to her, did not need to pursue it further. Even those who think through their feelings on this subject and seriously plan such a request when they are well, are seldom consistent when they are ill. They may have full insight into their condition, as did Miss W., and still postpone a final decision. It seems fair to say that, for many who are in favour of euthanasia, a final demand remains something that is for another time, or for someone else in some hypothetical situation. For example, another patient, on being asked whether she “wanted it now” replied, “Oh, no; only if things get worse”. She died quietly only a few days later without mentioning the subject again. Miss W. needed skilled treatment for the control of her pain. The end of the story might well have been different if she had been allowed to suffer continuous pain or the continued expectation of pain. Once again, the need is clear for teaching and experience in this field as part of general medical and nursing education. Incidence and Magnitude of Pain The following related case histories describe the pain suffered by three patients and illustrate their general management and the individual achievements and family reconcilliations that were made possible: Case 1: Mr. John G., aged 61, a self-employed retailer of wine-making supplies, came to St. Christopher’s Hospice with a history from his doctor of 18 months of severe spinal pain from a carcinoma of bronchus unrelieved by laminectomy, radiotherapy and increasing doses of morphine and chlorpromazine. He knew that he was terminally ill, and both he and his family were feeling exhausted and bitter after months of obviously intense suffering. His drugs were not altered for the first 48 hours because he began to respond immediately to the atmosphere of security and friendly activity in the ward. After a few days a combination of anti-inflammatory drugs (prednisolone and phenylbutazone) produced a dramatic change in pain and mood. The four-hourly dose of oral morphine was reduced from 150 mg to 120 mg, where it remained. Mr. G. took part fully in the life of the ward: he organised the raffle of a toy made by his sister and began occupational therapy. Two weeks later he was less well and was often drowsy and occasionally somewhat confused, but he continued to enjoy frequent visits from his family and visits to the Hospice Bar. He was entirely clear-headed when he sent for his family and announced to them that he did not think he would be alive the next day. He handed over his raffle to another patient, and had farewell drinks with his family before he lapsed into unconsciousness and died peacefully thirty-six hours after he had called them in. After his death his wife wrote to the ward: “I thank you from the bottom of my heart for the kindness, compassion and caring which you gave to my dear husband. The last month of his life was an unexpected bonus, which turned out to be pain-free, care-free and restored his faith — I would add — mine also. I will never forget. God bless you all”. His sister wrote to me: “. . . Please find money order. My wreath of flowers to my dear brother, John. He had all his wreaths of flowers while at St. Christopher’s through the very great kindness shown by the doctors and staff, so I feel that money is more beneficient than flowers. I experienced something wonderful during the month I visited John. Three men who had never met before got together as brothers. I used to call them the three Js, two Johns and a Joseph: They worked together side by side, helping each other and Joe sat by my brother’s bed the whole day he was dying, fetching cloths as he needed them and talking to him. Something else I witnessed that day also. During the early evening I saw John look straight ahead on two occasions and give the most wonderful smile; there was no one at the foot of the bed or opposite, for John H. had passed on a few hours before If it hadn’t been for St. Christopher’s our family would never have had this last happy month together with our loved one. Now the three Js have gone together in peace. May God bless your Christian belief and work always”. Now the three Js have gone together in peace. May God bless your Christian belief and work always”. Case 2: Mr. John H., an accountant aged 56, was admitted a week after Mr. G. and died the day before him. His pain had also been persistent and poorly controlled ever since a laparotomy and colostomy had been performed six months before. At the time he was admitted neither dihydrocodeine by mouth more or less regularly nor pethidine by injection three times daily were relieving it. He was still hopeful that something might be done to close the colostomy. He also said he felt better after he was welcomed into the ward community, but he never talked much about his illness. His unsatisfactory medication was immediately altered to a morphine mist every four hours with prochlorperazine by day (5 mg) and chlorpromazine at night (25 mg). The dose of morphine alternated between 20 and 30 mg during his three-week stay as his pain occasionally broke through the constant level of control. During this time five injections of diamorphine (5 to 10 mg) were given with the phenothothazine because of episodes of vomiting. He needed one injection of diamorphine 20 mg during the afternoon he died. Mr. H. was able to complete some accountancy a few days after his admission; he joined his friends with occupational therapy and entertained his large family who came with him to Chapel and to other Hospice functions. Four days before he died he was still working, he celebrated his wedding anniversary with his family and came with Mr. G. and Mr. C. to the Hospice Pilgrim Club evening. His family spent his last day at his side, and nine of them were present as he died. A staff nurse said prayers with them all (a St. Christopher’s custom which is practically never refused by the family). Several of Mr. H.’s family came back to the Chapel for the Sunday morning service two days later. His wife wrote to me: “For me, he kept a diary. . . All my prayers were answered after my husband entered your hospice. He was completely without hope, yet he recovered to such an extent that he was able to enjoy happiness, friendship and love for his fellow man”. Case 3: Mr. Joseph C., aged 68, a retired painter and decorator, was admitted to St. Christopher’s Hospice with a history of several months’s severe, left-sided and back pain from a metastatic carcinoma of kidney. He was loath to admit how much he had suffered during the months when he had been in and out of a local hospital until we had demonstrated that we could relieve his pain while he still remained active and alert. He was given a mist morphine 20 mg with prochlorpromazine 5 mg every four hours with almost complete pain control and, as he later told us, his first night’s sleep for months. After forty-eight hours he allowed us to increase his dose of morphine, and it remained at 30 mg until his death four weeks later. He also was given prednisolone 5 mg and indomethacin 25 mg q.d.s. Soon after admission Mr. C. became active, performing surprisingly vigorous physio- and occupational therapy and completing a large number of mosaic trays. After two weeks he recorded a television interview for a National network in which he said that he felt that he and the Hospice were fighting his advanced cancer together, that he now no longer even thought of pain and hoped to have a little more life ahead. As his two friends began to fail, he took charge of Mr. G.’s raffle, completed Mr. H.’s last mosaic tray and sat and talked with them and their families throughout their last day. He himself developed a chest infection during the last twelve hours in which his two friends died, and he was very upset and grieved together with the staff at their loss. His condition deteriorated rapidly from then on; but his usual medication, now given by injection, controlled all physical distress, and he died peacefully in the middle of the night with his wife and her sister at his side. He had been in the Hospice for five weeks. One of his friends wrote to me:
These three men had a quiet, rather ill companion in their four-bed bay. Mr. M. watched their activities in a somewhat detached manner. He spoke little but obviously felt drawn to some extent into the ward ‘Club’. He had expected the first two deaths but was more shocked when Mr. C. also died. He told us that he missed them, but he was able to welcome two new patients with his usual quietness and at present is considerably better than on admission. All three families called back to see him. (1) the importance of morale and sympathetic understanding in a unit devoted to the care of dying people cannot be over-emphasised, and added to this major contribution to their psychologic comfort may be an enhanced subjective effect of drugs. In assessing pharmacological efficacy in these circumstances the group effect should be considered. |
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