The Management of Patients in the Terminal Stage
The Management of Patients in the Terminal Stage
First published in Cancer, Vol. 6. (1960), ed. R. Raven, pp. 403–17. London: Butterworth and Company.
Abstract and Keywords
This is Cicely Saunders' 1960 chapter in a major six volume series on cancer, edited by the surgeon Ronald Raven. It opens with a plea for ‘the art rather than the science of medicine’. It begins with a discussion of home care, taking in the activities of the social worker, home nurse, doctor, and family members, but also argues that nearly half of the patients in the terminal stages of illness need institutional care and goes on to discuss the role of hospitals, geriatric units, nursing homes, and ‘terminal hospitals or homes’ in this regard.
Patients have reached the terminal stage when all the curative and palliative measures described in Chapter 15 have been exhausted. There are still many patients who linger for weeks or months and whose care calls for the art rather than the science of medicine.
The National Cancer Survey, carried out by a joint committee of the Marie Curie Memorial Foundation (1950) and the Queen's Institute of District Nursing, showed that out of some 7,000 patients visited at home by district nurses over 2,000 were enduring a severe degree of suffering, but it is not only those at home who suffer. This situation may be disregarded or denied, partly because few people see more than a comparatively small number of these patients and because many of them are lost sight of by those who carried out their active treatment. Part of the problem is administrative and financial, but many more people could be relieved by means already available. It may be that the doctors in charge have not had much experience with such patients, either as medical students or after qualification. Sometimes no suitable accommodation can be found. Most important of all, there may be no one with the time to listen to their troubles or the knowledge and strength to meet their needs. With an ageing population this problem will increase in importance.
In Great Britain over 50 per cent of these patients die at home, the rest in the chronic or geriatric units of their local hospitals, occasionally in their original treatment hospital, and in nursing or terminal homes. In the United States rather less than half die at home, only 2 per cent in nursing homes, the rest in hospitals. Here and in other parts of the world there are a few terminal homes, usually run by religious orders. The deaconess hospitals of Germany are justly famous.
Patients should remain at home as long as possible. The old, particularly, are happiest with familiar things round them without the routine or discipline of hospital, and they will keep active longer there than they would elsewhere. If the family is united the relatives are often the best nurses, but they will need understanding and support in these demanding situations.
The Social Worker
The caseworker can give much help to the patient and relatives. This includes the arrangements for financial benefits described in Chapter 16, facilities for medical and home nursing care, admission to hospital if necessary, and the other plans which may be helpful—these are (p.22) essential. If the family can know in advance what sort of services are available and can call on the social worker to arrange them as smoothly as possible, it gives them great security and comfort. She often has to take much responsibility and initiative and even assume direction, because of the patient's weakness and the family's distress and bewilderment (Player, 1954).
The hospital almoner can act as a liaison between the patient and the hospital on the one hand, and the family doctor and all the facilities for home care on the other. A recent survey in London (Bailey, 1959), showed how much she can do to make nursing at home practicable. Social workers give much material assistance to these families, but their understanding and sympathy is often their greatest contribution. They can ease some of the problems that arise in a family's relationships at such a time, and both patient and relations may welcome discussion with someone who is not emotionally involved. They can thus be helped to face their own responsibilities and to go through their inevitably hard experience.
The Home Nurse
Some families can afford private help, but the majority of patients in Great Britain are cared for at home by the home nurses. They call as often as they can in the day, and in some areas can go as late as 10 p.m. to give the last injection. They can arrange various forms of practical assistance and will put the patient in touch with any organization in the neighbourhood that can help. They can sometimes provide funds for night nurses for the last few days. Their visits are eagerly awaited by the patients, and ease the strain on the relations for they will take over or direct all the nursing care.
The patient and his family may be well known to a social worker and have a nurse calling frequently, but they will still look above all to the doctor for his authority. He has to order or carry out all the symptomatic treatment, and also understand and help his patient in his mental suffering. He can be a real friend and supporter of the whole family and there will be many demands upon his time and skill.
Whatever decision is made about telling the patient, someone in the family must know the position as the doctor sees it. They may need telling more than once and their capacity for misunderstanding or for refusal to face the truth is considerable.
Patients with young families present many problems, and it is usually impossible to keep them at home. There may be financial worries if someone has to stay off work, and small children may become neglected or get out of hand. They are not usually much affected by watching illness, but adolescents are very vulnerable to its effects.
Nearly half the patients in the terminal stage need institutional care. Some who die at home should have been admitted to hospital or a home, but either they or their relations found it hard to accept this move, and vacancies were lost because they postponed their decisions. For many, home care is quite impossible.
(p.23) Some people are readmitted to their treatment hospitals as emergencies. Many find this a great solace for they have developed confidence in their own consultant and feel that no one else can replace him. However, a busy general hospital ward is rarely the right place for them. The sight of them may frighten and depress others, and they become miserable as they see their neighbours improving while their own hopes are continually deferred. They are often correct in thinking that doctors pass by the ends of their beds and leave them alone with their questioning. It is not the answer to put up screens or curtains; conscious patients become suspicious and it does not prevent other patients knowing what is happening. These considerations apply to general wards in the local hospitals, and geriatric units are not suitable for the younger cancer patient. Nevertheless, these disadvantages can be overcome by a doctor or ward sister who really welcomes these patients.
In most areas a doctor and a social worker from the geriatric unit visit any patient referred to it by the general practitioners. They then try to time the admissions according to the patient's medical and social needs. This is important for the terminal patient, for those admitted too soon become frustrated and fail to settle down, and those left too long at home may endure much suffering.
Many patients die in nursing homes, it is impossible to generalize but their standards vary greatly. Cubicles and single rooms are best for patients in their last few hours but they shut the conscious patient away from the help of companionship when he needs it most. Suffering is greatly intensified by isolation.
There are a few institutions which were founded to care for these patients exclusively. Terminal hospitals or homes sound depressing, but they are not so. They are all small (30–70 beds) and the atmosphere is as far as possible that of the home they exist to replace. Administration and discipline are not strict, visiting hours are long, and it is possible to satisfy individual foibles.
Many of those admitted from home are greatly relieved for at last they know they can lie back and rest; pain and dressings, bedsores and bowels get frequent and expert attention. No longer are they alone for hours, or feeling they are a nuisance to everyone as they watch their relatives getting worn out.
These hospitals or homes offer two things above all: skilled and specialized nursing and an atmosphere of individual love and care, stemming in most cases from the strong sense of vocation of the staff. Matrons and sisters welcome the heaviest cases with confidence (Cameron Morris, 1959). The senior staff are usually nuns or those with a similar vocation, and the patients often seek their help in their mental and spiritual worries. One matron stated that she can never go into the wards by day without seeing each patient individually, so if she wants to talk for long to anyone whom she knows is in distress she goes round after dark when most of the others are asleep.
It is surprising how many patients fail to realize the purpose of these hospitals. One patient has recently been readmitted to a hospital in which she spent a year in the 1940's. After her unexpected recovery and discharge she kept in touch with the matron and now, 12 years later, she has come back happily, still apparently unenlightened. We must never close our minds to the possibility of recovery even at this stage. We may have come to the end of our resources but very occasionally the patients may not have come to the end of theirs.
Facilities in these hospitals and homes vary; one has some student nurses, a physiotherapist, and a portable x-ray apparatus, another makes no attempt at such activity and does (p.24) not even take temperatures. The presence of nuns and regular ward services upsets a very few patients and comforts many more. Those who send patients to these institutions should visit them there, for they would fine it enlightening and would know better how to prepare patients for admission.
It is not necessary to tell them that they are being sent away to die, but it is not right to tell them that they are going for convalescence or “special treatment”. It is probably best to tell them that they are going to a small hospital where they can have the prolonged rest and nursing that they need.
The patient is still part of his family even though he has been admitted to an institution. It is hard for relations if they do not know what is going on. At present there are complaints both from patients and their relatives of “discourtesies of silence” (Titmuss, 1958). It is not always easy to avoid this but an attempt must be made to talk to them in terms they understand.
Most patients dread the pain of cancer more than anything else, and most have the idea that it is inevitable. This is not true, for intractable pain is the exception rather than the rule. Unfortunately for some it eventually becomes the overwhelming symptom. Fear, uncertainty, tension and the conscious or unconscious knowledge of the threat to life increases the individual reaction to pain. Its very duration does little or nothing to decrease the intensity of the sensation, but much to decrease the ability to bear it.
Pain with spontaneous variations needs drugs given promptly whenever it begins. Continuous pain and discomfort need regular analgesics. In neither case should pain be allowed to take control. If variable pain is at all severe an analgesic should be given regularly and more added between times if need be. It is the author's experience that doses should be started and given at regular intervals as soon as patients are worried by pain. It is unsafe to rely on them to ask, for either they will try and wait too long—and pain itself is the strongest antagonist to all these drugs—or else they will ask too often and addiction may become a problem.
Cancer may become a general disease with a variety of manifestations. It is very important to accustom a patient to expect relief from the beginning. Fear of pain, and indeed pain itself, is best dealt with by reassurance and by prompt and adequate control. Even in the terminal stage pain may be controllable by ordinary means. Sometimes, as is pointed out in Chapter 15 the use of antibiotics, local applications, heat, attention to the bowels, and giving of antacids will give relief, or the emphasis may have to be on sedation rather than analgesia.
It is important to try and deal with mild and moderate pain with drugs by mouth as long as possible, and old people especially prefer to take such drugs in liquid form.
Analgesics for Mild Pain
Aspirin alone is sometimes surprisingly effective. Although combinations of analgesics are said not to be more potent than their most powerful component, yet in practice they are worth trying. There are also several alternatives, for example, phenacetin, for those who are unable to take aspirin. Codeine is a useful drug in spite of its constipating properties; when (p.25) added to these combinations it increases their effect. Large quantities of compound tablets of codeine (B.P.) with soluble aspirin are taken by these patients with results often comparable with, or better than, those obtained with oral pethidine. One hospital dissolves them in 15 minims of Nepenthe and this mixture is given regularly 1–4 times a day: many patients need no more for their entire illness. This small dose of Nepenthe seems to take the edge off apprehension and pain as a little narcotic effect adds greatly to the analgesic effect. It only rarely causes nausea. Mild analgesics combined with hypnotics are useful by day as well as by night: there are plenty available. It is also worth remembering the availability of powder of ipecacuanha and opium (Dover's powder).
Analgesics for Moderately Severe Pain
A stronger mixture of Nepenthe or opium (minims 30) with aspirin or with aspirin, phenacetin and caffeine suits some patients very well. When given at up to 4—hourly intervals, it seems to remain effective for months and even years.
Pethidine is unreliable by mouth and more effective by injection. It does not allay anxiety as the opiates do, but sometimes controls severe pain especially when an element of spasm is involved. It is often useful with ambulant patients and it combines well with chlorpromazine. Some doctors prescribe levorphanol with or without levallorphan, but it is more capricious in its action. Methadone is still more capricious and is very apt to cause vomiting and occasionally troublesome nightmares. All these drugs suit some patients and are worth trying.
None of these drugs takes the place of the opiates in the terminal stages if pain is really severe, although controlled trials sometimes seem to indicate that they should.
Analgesics for Severe Pain
Doctors who look after large numbers of patients with severe pain state that they try new analgesics as they come out and always return to the opiates (Cameron Morris, 1959). The diagnosis of persistent cancer is not in itself a justification for opiates but they should be given for distress as well as for pain. They should not be withheld at this stage, the milder mixtures mentioned above being given first.
True addiction is not really a problem in the terminal hospitals, where it is defined as a continual request for injections when the staff are not convinced that pain exists. This does not occur often. Physical dependence does develop, but at times when pain recedes patients are weaned off their injections and they do not show the true withdrawal syndrome. Nathan (1952) found that when his patients were relieved instantaneously of their pain by operation they never demanded another dose.
Tolerance is a problem to some doctors who work up to big doses which may be difficult to give to a cachectic patient. This is not the experience of those who deal with large numbers of patients in hospital and indeed they find that when patients are admitted from home, having had large doses, they can be reduced almost immediately to small ones.
Patients are usually started on injections of morphine as required. Once this happens they soon begin to have them routinely once or twice a day, or if pain is obviously continuous 6 hourly, 4 hourly or even 3 hourly. The dose rarely exceeds 60 milligrams of morphine at a time and most patients need much less. Larger doses often give no better analgesia and merely increase the side-effects.
(p.26) If a re-assessment is made of a patient's need when he has taken opiates for some time, it must be over a period of at least 48 hours. It is not possible to judge with one or two reduced or placebo injections. Patients may seem perfectly comfortable the first day and only complain of increased pain after a considerable interval.
Methods vary slightly, but administration is basically by the clock. There is some latitude and a patient should not, of course, be kept in pain till the “right time”. Sometimes a milder analgesic added in between is enough.
A balance has to be struck between control of pain and anxiety and over-sedation. It is unpleasant and should be unnecessary for patient to have to climb up into consciousness between injections, which happens if one or two large injections are given in the 24 hours. Most patients are surprisingly alert if given regular small doses, they do not show distressing changes in personality and the majority are comfortable on the same dose—often for weeks at a time.
The comfort of the patient remains the only criterion for the sufficiency of the dose. Occasionally one has to use a large dose and if all else fails, hyoscine or chlorpromazine are added till the patient can be kept almost permanently asleep.
Opinions differ as to the best opiate to use. Some use papaveretum (Omnopon) and claim that nausea is reduced but dose for dose with morphine this is doubtful. Others find that they cannot work without diamorphine but some never use it. It would be helpful if there were any figures to compare its usage with other drugs. Euphoria is not always produced, but it is useful in controlling a persistent painful cough. Although morphine makes some patients vomit this does not often occur when pain is severe nor when the patient is in bed, even in women vomiting is usually controllable. Occasionally diamorphine is the only opiate they will tolerate.
Much work has been done with partial antagonists to these drugs. Respiratory depression is not a problem until large doses are given at a time, but constipation, depression and heavy narcosis may occur at a much lower dosage level. Gerson and his colleagues (1958) have claimed that they can keep the majority of their patients completely free of pain, alert and moderately active with the use of amiphenazole with either morphine or diamorphine. So far most other workers have not repeated their results but trials are proceeding. It seems that their method is well worth trying with patients who are drowsy and unco-operative on the doses needed to control their pain, and with those who develop troublesome addiction. Constipation, the most troublesome of side-effects, is not prevented.
Morphine and diamorphine are much more unreliable by mouth than by injection, but the Brompton Mixture may be adequate and it does make many patients comfortable. This mixture is chiefly composed of:
Liq. morphine or diamorphine .. .. .. 10–60 milligrams,
Cocaine hydrochloride .. .. .. .. .. 8–30 milligrams.
It can be made up with a small dose of syrup of chlorpromazine or with 10–15 minims of cannabis indica; gin or brandy may be added or it may be mixed with any beverage of the patient's choosing. Ogilvie (1957) suggested cre`me de menthe for a patient who is liable to indigestion. The alcohol promotes absorption from the gut.
Chlorpromazine has no analgesic properties, but if it is used as an adjuvant it decreases the mental reaction so that less analgesic is needed.
(p.27) This is not an exhaustive list but a well-tried group of drugs which will control the pain of the majority of patients in the terminal stage if they are used with care and confidence.
Vomiting is as common as pain at this stage, and there are many causes. Sometimes it is due to the drugs being used and this cause should be eliminated if possible. Various antiemetics are used, the most popular being chlorpromazine, perphenazine, or anti-histamines such as cyclizine and Avomine. Some patients respond to careful diet and antacids; soda water helps many patients who suffer from continual nausea.
Little can be done when the cause is mechanical as the time for any relieving operation is past. It may be worth instituting gastric aspiration to prevent retching, and giving supplementary rectal fluid, but by this time heavy sedation is usually required.
Dysphagia in the terminal stage may be helped by imaginative nursing. Local anaesthetics in gel form before meals may be used, and semi-solids may be swallowed more easily than fluids; iced drinks and soda water are usually welcomed.
Asphyxia while patients still remain alert is almost impossible to relieve. The time for tracheotomy and suction is past. Most patients get little comfort from oxygen and they dislike almost any form of mask. Sometimes ephedrine or aminophylline will help; small doses of atropine reduce sputum. Sedation is the only help for this distress in the last few days of life.
Fungating tumours need not be offensive. Many find that the application of liquid paraffin is simple and satisfactory. Antibiotic powder may be worth trying for severe sepsis but a dressing of eusol with paraffin is usually sufficient.
Mouths involved in the primary tumour require frequent rinsing or syringing, and local anaesthetic sprays, lozenges or emulsions are worth trying. Atropine reduces excessive secretion, but the dose needs careful regulation. Patients may require feeding through a nasal tube.
A sore tongue occurs when the diet has been poor for a long period but will usually improve with tablets of nicotinimide and bland mouthwashes. Pineapple and acid sweets to suck are helpful in preventing dryness of the mouth. If infection with monilia occurs it must be dealt with immediately or it spreads round the ward.
The application of dequalinium or nystatin paints overcomes it quickly. Lipsalve is best for dry, cracked lips.
(p.28) Pathological Fractures
Pathological fractures are often painful but at the terminal stage they only need immobilization and this may not be required for long as they often become much less painful and some unite.
For ascites a paracentesis is performed and if a small trocar and cannula are used it rarely causes distress.
Pleural effusions are usually better left alone; they recur quickly at this stage and a paracentesis may be distressing and gives only temporary relief.
A persistent cough needs plenty of linctus, such as diamorphine, methadone, or codeine. These seem to be more efficacious when given with a little very hot water. It is worth trying an expectorant mixture at times and the old-fashioned camphorated oil rubbed on the chest is often welcomed and occasionally is most beneficial. It may be helpful to give a short course of an antibiotic when the sputum is obviously purulent. Diamorphine by injection may be most valuable.
Fits from cerebral metastases may require paraldehyde for initial control and phenobarbitone is best thereafter. This development sometimes heralds the end of pain. Magnesium sulphate enemas may relieve the headache and vomiting of raised intracranial pressure.
Retention of urine may require catheterization and is sometimes caused by large doses of morphine.
Incontinence may be dealt with by an indwelling catheter. Patients with fistulae cause nursing problems difficult to solve. Some patients find rubber bed-pans intolerable but to others they are a comfort. They must be carefully cleaned. Silicone cream is the best application for preserving the skin intact. Some form of napkin will help to save the bedclothes if bed-pans are not used. Urinary infection can usually be controlled with small amounts of sulphonamides.
Constipation and difficult defaecation may make life intolerable for the very ill patient. Impacted faeces must be removed, suppositories, olive oil or water enemas may be necessary, and are less exhausting than strong purgatives, but if patients can be persuaded to take regular paraffin emulsion or even a small dose of salts there will be far less need of (p.29) such radical action. There are multiple aperients, and both staffs of the wards and patients have their favourites which work best for them. The doctor should see that a small amount of aperient is being taken regularly and that the fluid intake is adequate. Patients regard a regular bowel action as essential but some can be persuaded that once or twice weekly is quite in order. Opium and kaolin mixtures are occasionally needed for diarrhoea.
Smaller wards provide relief to the dying after the endless noise of a heavy ward or a small house full of healthy children or adults. The night's ritual of hot drinks, hot water bottles, a well-timed bed-pan, the slight change of position, real quiet and properly shaded lights help to give a good night's sleep. An important factor is the confidence that they will not disturb a tired relative if they do need something but instead a nurse who will probably have time to talk if wanted.
Sedatives with the evening analgesic are frequently needed. Opiates should not be used for sedation alone and a barbiturate may be effectively added to them when required for pain.
Short-acting drugs can be repeated with good effect during the night and are well worth using during a restless or unhappy day. Long-acting drugs often give hangovers and barbiturates may make the elderly very restless. They often respond well to the glutarimide derivatives. Chloral hydrate is reliable but its taste may need disguising. Alcohol works splendidly with some patients. It is often worth giving ½-1 grain of phenobarbitone earlier in the evening and adding something else when the patient is tucked down.
Sedatives sometimes have to be given by injection and soluble phenobarbitone, amytal and promethazine separately or in conjunction may be used.
This list is by no means exhaustive. Patients vary in their response to these drugs and in the doses they need. It is a matter for individual assessment; most old people need full doses.
Bed sores may be prevented but rarely cured at the terminal stage and may give more pain than the cause of the illness. This is really the province of the nurse and most nurses have their own favourite applications which work for them. Most of these patients have very dry skins, however, and it may be necessary to suggest that some ointment is used rather than spirit. Patients should be encouraged to get up as long as possible and once bedridden must be moved gently and frequently. Pillows, padding, air rings and good nursing will prevent trouble in most patients. Patients vary in their toilet needs and apart from backs, mouths and eyes they may be given some freedom about washing.
Anorexia is a difficult symptom to treat. The diet must be good and tempting. Once they are relaxed and free from pain, patients often develop good appetites and some admitted to terminal homes temporarily gain weight and may return home for a time in comfort. It is some times worth while to give courses of iron and vitamin supplements.
Hiccough occurs for a variety of reasons and is irritating and exhausting. If carbon dioxide is not available it is worth trying to make the patient breathe in and out of a paper bag. Injections of chlorpromazine are sometimes effective.
We have an instinctive belief in our own survival and most patients at first are optimists with considerable faith in their doctor's ability to cure them. Optimism tends to give way to doubt as they become weaker and they are continually attacked by anxiety and fear. They are afraid of what may be the matter with them, of pain and of dying, of what will happen to their relations or that they will not be able to acquit themselves as they would like. Some cannot express this even in their own minds and seem lost in apprehension and bewilderment.
Patients are all too often treated as unquestioning and unintelligent. We do not realize how many suspect their diagnosis, and often underestimate the anxiety of patients and their relatives.
Fear of the unknown is greater than fear of the known and those facing the unknown are more at the mercy of the passing mood. It may be objected that death is the worst unknown of all, but our patient who moves without our being aware of it from fear of an uncertain future into fear of a certain death is still left in loneliness without help. If we make the attempt to understand what is happening in his mind, at least we can help him tackle the fear he is actually facing. Relatives are often able to help us here if we are prepared to consult them, though we may need to make some judgment of the value of their evidence. We may also find out from them how necessary it is for the patient to put his affairs into order. He can be advised to do this without giving him a sentence of death and it may help both him and his relatives to deal with practical matters. This is a well tried way out of overwhelming emotion.
Many patients feel unsatisfied with what is being done for them and they become filled with resentment. This may be directed against the doctors, their family or against “fate”. They become demanding and querulous and even frankly paranoid. Others are frustrated by their increasing lack of independence and find their own bodily weakness and deterioration intolerable. The intelligent find the contraction of attention hard to bear. Some feel obscurely that it is all their fault, or they may have definite feelings of guilt for some particular episode in their lives. Many become depressed, particularly those who suffer a slow decline. Tiredness of mind follows that of body and is equally hard to endure.
The treatment of the spirit of man by drugs is not simple nor should we expect it to be (Sargant, 1958). Many of the sedatives and stimulants do not help these patients but some are worth trying. The opiates remain unrivalled and must not be withheld where mental distress predominates. Chlorpromazine is also valuable; its disadvantage is that it makes many ambulant patients feel dizzy and others object to it because it makes them feel doped. Meprobamate and methyl pentynol may help, but these and the other tranquillizers are not as a rule effective for more than a few days and the doctor tends to use again chloral and the barbiturates. Hyoscine adds greatly to the sedative effect of morphine but may excite some patients, particularly the elderly. It is good for frank mental disturbance and may need to be given in small regular doses; sometimes an occasional dose at night is enough.
(p.31) Alcohol may help to make these patients more comfortable and cheerful. Hot whisky or brandy in the evening help the elderly to sleep and may be given periodically during the day. Sherry may still act as an aperitif. Effective stimulants are hard to find; amphetamine and caffeine may help temporarily. Cocaine is the best; it sometimes causes addiction but that does not matter at this stage.
Here more than anywhere it matters that “we give ourselves with our pills” (Worcester, 1935). Mental distress is best helped by the real listener. Only those who really care and are prepared to go on visiting when they feel that they have nothing to bring will qualify for this role. This is the greatest solace, for suffering is only intolerable when nobody cares.
Man's first reaction to his trials tends to be rebellion, but this may pass and be replaced by acceptance and a deeper awareness of spiritual realities; indeed suffering often brings out the best in the human soul.
How Much Should the Patient Know?
This question has been discussed in Chapter 15. The author wishes to make the following points.
It is not right in principle to set out deliberately to deceive and we must not lightly dispose of truth. We must also consider the way we involve other people in deceptions. We may have only prevaricated or told a half-truth, but in so doing have left the ward sister, the almoner and the relatives committed to a whole fabric of lies. We must remember those we have made party to a deception. If, later, they think they have cancer themselves, how hard it is then to convince them that this time we are telling the truth (Donaldson, 1955).
More important still is the need for individual understanding and compassion. The doctor who has managed to establish close contact with his patient will best be able to decide whether he should be protected from the truth as long as possible or whether he is wanting to be enlightened. He will recognize an opportunity when it comes to him and will approach his patient as a friend.
In most cases the initiative should come from the patient. A patient may demand the truth he already suspects and find it easier to be done with deception. Another may prefer to live his last days as though he were going to live here for ever and will not know if he can help it. Each has a right to his choice and to his doctor's co-operation in it.
Relatives vary as patients do in their desire for the truth. Many ask that the patient should not be told and prefer to try and keep up normal relationships. Some preserve a successful facade to the end. Others may need to be restrained from over-acting or helped to see when the patient really wants to be honest with them.
It is rightly said that one should not take all hope of recovery away and leave a patient alone without light. Those most willing to tell the truth are those who believe that there is hope for them and that death is not the end. We are accustomed to equate a patient's good morale with his confidence in recovery but there is another morale which looks reality in the face with hope and courage.
The care of the dying is pre-eminently the time for doctor and clergymen to co-operate. The British Medical Association Committee, set up to answer questions put by the Arch-bishops’ Commission on the Church's Ministry of Healing (1958), implied in its findings that it realizes that the rigid separation of the spheres of the spiritual and the physical cannot be maintained but a theoretical basis of co-operation is never satisfactorily formulated.
(p.32) In practice at present, many people are so out of touch with the Church that they are unlikely to respond to the visit of a clergyman at the terminal stage unless the way is first paved for them. Moreover, as Worcester (1935) pointed out, “The dying do not always recognize the difference between the clerical and medical professions and are also unable to distinguish between the need of physical relief and that of consolation”.
Doctors or nurses who have time and heart to listen will have their patient's problems, mental, moral and spiritual, brought to them. They will refer them to a clergyman where possible but it is hard for him if he is only called in at the last moment. In many hospitals the chaplain's visit is a routine but it is a great help to him if he is told of anyone who is in special need. Queen's district nurses suggest a visit from the clergyman to their patients when they first see them and many take advantage of this suggestion.
There are many individual instances of co-operation between doctors and clergy. The Archbishops’ Commission and the British Medical Association Committee both wish to extend this in all possible ways. It would be helpful to have more leads in this matter.
“Life will take its leave in silence, drawing the last curtain over my eyes.” (Tagore, 1953).
It is not so much death itself as the actual process of dying that most men fear. The reality is almost always painless and peaceful. Mental and physical pain usually recede during the few days before death and certainly in the last hours.
The common termination is bronchopneumonia but it is often difficult to state why many died when they did. One patient goes downhill suddenly in a few days while another lingers in the last stages of cachexia. It is not their age nor the nature of the original lesion, nor the type of the spread, nor is it the loss of the conscious will to live, nor the fear of death. These all play some part but are not the whole answer to this particular problem.
It is hard to say when a patient actually begins to die but if a home has cubicles for these patients an experienced ward sister is rarely wrong in deciding when anyone should be moved. If there are single rooms relatives can stay longer, and other patients need not be distressed, though sometimes it has helped others when patients have died in the ward to know that death itself was quiet and peaceful. More often it is the noisy, difficult or unsightly neighbour who causes unhappiness.
Dying patients usually like to be propped up a little or to be on their sides. They only lie flat on their backs because they cannot move or ask (Worcester, 1935). They need pillows so arranged that their heads do not fall forward. They are often frightened of the dark and need light and fresh air. Their tossings are attempts to throw off the bed clothes, which must be light, and the extremities become cold and clammy. As their peripheral circulation fails their internal temperature may rise. They may need sponging or rubbing after a drenching sweat. Thirst is the last craving and sips of iced water, a moist swab in the mouth and salve to the cracked lips can still be comforting.
Even if a patient lingers in the terminal stage and can make no flicker of recognition he may well know who is with him and find comfort in their presence. Hearing is the last sense to go and we should go on talking to our patients as though we were sure they can hear and we can encourage relatives to do the same. Certainly we should never talk over them.
(p.33) Most patients are unconscious at the time of death, but the author has managed to talk with some only a few hours before. Nearly all knew they were dying—even if no one had mentioned this possibility before. At this stage they were too far away to want to come back and were not frightened or unwilling to go. They were conscious of leaving not life and activity but weakness and exhaustion. They no longer had any pain. They wanted to say goodbye to those they loved but were not torn with longing to stay with them.
“I start on my journey with empty hands and an expectant heart—though there are dangers on the way I have no fear in my mind.” (Tagore, 1953).
Relatives often need telling that death will be like this, and require comforting if there are the occasional unconscious tossings and apparent distress. It helps them if they still have a task to do even if it is only sitting up and holding a hand. Those with other responsibilities may have to be restrained from an over-lengthy watch but many find it easier to bear a parting when they know they were the last to say goodbye.
Many believe that a man is entitled to demand the release of death from intolerable suffering and that the physician who gives this release is entitled to legal and moral absolution for his act (Williams, 1958). As the law is administered a doctor has really little to fear. It forbids in theory but ignores in practice (Hoyle, 1957).
The 1936 Bill was full of procedure and machinery. Public opinion and even the most informed minds were not ready to support it (Banks, 1948). The medical opponents of the Bill stressed that the doctor could be trusted to know the difference between prolonging life and prolonging dying and that the present position was best left unchanged. This leaves considerable responsibility with the doctors but seemed the only way of dealing with the matter.
There is need for more thought on the subject; it is not a matter for random decision but for mature and informed consideration.
Everyone has seen patients whose death they would like to accelerate, but it is the author's opinion that we cannot claim to dispose directly of life. It is not for us to say that the suffering is fruitless nor that there is nothing more for the patient to do or learn in this life. Man is not the master and possessor of his body and his existence.
We are not in a position to know what a dying man may find of reconciliation and peace in his last days. A young man died of carcinoma of the rectum. He had been lonely and though considerably comforted by friendship in his last weeks he remained bitter. He began vomiting continually, was in great pain and was disorientated. He would have seemed an obvious case for a “merciful release”. Instead he lived a further 2 weeks and became once more completely himself, his pain and distress receded and finally he died happily, at peace with the God he had ignored all his life. His calm was as obvious as his former distress. Even if one has no confidence in his hope surely this is an end he should not have been denied. This is a single case and the author can produce no figures on this subject but has known a number of patients whom she believed were only just ready when the end finally came.
If we say we will not deliberately hasten death we commit ourselves to relieving our patient's distress as long as it continues. This should be possible if he has been treated properly from the beginning of this terminal stage. Those who refuse to put a term to his illness from religious principles are accused of lack of compassion for him. On the contrary, (p.34) they are very active in relieving this particular form of suffering and well equipped to show compassion. The intolerable distress of the few remains a challenge. With the means we have at present, although the motive is different, it is not always easy in practice to distinguish between proper relief and the hastening of death. Cancer research is rightly directed at determining its cause and cure, but there is still a place for more research into the relief of its terminal manifestations.
If we oppose euthanasia we must be prepared to do all in our power to remove the pain and sting of death. Not only those who start with a personal faith will prove that God's grace is sufficient, for many come to find this for the first time in their illness.
In this chapter emphasis has been laid on the personal factor and the need for the art rather than the science of medicine. The demands the dying patient makes upon all who care for him and upon the doctor in particular are summed up in St. Matthew's Gospel, Chapter 25, Verse 36, “I was sick, and ye visited me.”
I would like to thank the staff of St Joseph's Hospice, St Luke's Hospital, Bayswater, and the other terminal care hospitals in London for their inspiration and help. Also Dr. Harold Stewart, The Department of Pharmacology, St Mary's Hospital Medical School, for his interest and encouragement.
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