Volume 70 February 1977
71
Royal Society of Medicine President Sir Gordon Wolstenholme
Meeting 13 December 1976
Edwin Stevens Lecture On Dying and Dying Well Sir John Richardson Bt MVO MD The Right Hon Lord Edmund-Davies PC LLD The Most Rev and Right Hon Donald Coggan DD, Archbishop of Canterbury Sir John Richardson
Medical Aspects The words 'on dying well', chosen by the Archbishop for the title of the 1976 Edwin Stevens Lecture, must mean something of very great importance to us all and yet have a somewhat different significance for each of us. They may, for instance, mean for some a quick or a painless death, or one so unexpected as to carry little or no fear with it. In solely medical terms it can mean a technically well-managed end to a life, the expression of true and successful professionalism. For those who are not doctors or nurses, together with those who are, dying well may conjure up memories of great courage, that may have amounted to heroism, and have led to true peace in dying. I shall take a most inspiring example to illustrate these different points of view. The one I wish to mention is the death of Dr Noel Chavasse, Royal Army Medical Corps, in the Great War when he won his second Victoria Cross. He was appallingly wounded in a dugout, his wounds including a penetrating one of the abdomen. In spite of this, and accomplishing a physical feat that few doctors would believe was possible, he crawled for half a mile to summon aid for the men left in the dugout who were themselves severely wounded and in great danger of their lives. He died, conscious to the end, forty-eight hours later. His death in a clinical sense was a terrible one. To all men he did indeed die well. My brief is to talk about the professional view,
and as I do so I shall be including in my thoughts all those who have the care of patients, though their viewpoints may naturally vary from mine. Doctors, nurses and relations together and in consultation-and here I stress 'in consultation and together' - should be able to ensure that dying, in the vast majority of instances, is peaceful and without conscious struggle. Unless perhaps it results from violence or comes so rapidly that help cannot be given, the means are now available, if they are used properly, to promote a sufficiently untroubled end, including the days immediately prior to it. The question so often raised relates to the word 'properly'. The meaning that is placed upon it can vary in the minds of those concerned from one extreme to the other, from the deliberate ending of a life to the strictest adherence to the dosage schedules given in the British Pharmacopeea. If Lord Edmund-Davies decides to touch upon this point I am sure that what he has to say will be of the greatest interest to all of us here. In practice the solution can usually be found by considering solely the interests of the patient and applying to them the general principles of medical management in the light of personal knowledge of the individual. What is much more difficult is to know how to manage the situation of those who are dying, but for whom death may be some time in coming. Here again the actual technical problems, if not completely soluble, should nevertheless always be capable of being met to a very material degree. I refer, of course, to the control of pain and to minimizing of the effects of complications and of anxiety. The real difficulty comes in determining the general setting and the attitudes of all those concerned. In trying to help, or at least not impede the creation of an atmosphere of peace and even happiness, doctors are touching upon matters that are also the concern of many others. Questions will arise, such as where shall the patient be nursed, and by whom? They will need careful thought, and the
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Proc. roy. Soc. Med. Volume 70 February 1977
balancing not only of practical considerations, but of the anxiety that may be engendered in the patient for the welfare of those who are caring for him or, in those who are so caring, concerning their ability to do their best for the patient. On considerations such as these may well depend to a great degree whether or not the patient is dying well. Decisions about them cannot always be easily achieved, and usually involve the difficult and important one of who should be told the whole facts, and when this must be done. Someone must always know the facts and have them explained carefully if good management is to be established. Clearly the straightforward thing to do is to tell both the patient and whoever is nearest to him or most responsible for him. But in fact things are not always as simple as that. Sometimes it is right to tell only the patient; sometimes only the one most responsible for him. Accepting that a direct lie cannot be given, we must consider whether it is always necessary to give a complete answer to all patients. There is something in all of us, and this we well know, that rejects the idea that it can happen to us, and feels that if a thing has not been explicitly said it may well not be entirely so; certainly the longer my experience the commoner and stronger I believe this feeling to be. We tend to grasp at a last straw of hope, however illogically. Our power of self-deception is strong. Sometimes in life it is destructive, but in terminal illness it is usually benign, and this should be recognized and taken into account by those who are medically responsible. The question from whence this particular mercy comes is a fundamental one that is beyond me. What I am convinced about is that when patients ask you a direct question it must always be repeated before it is directly answered, because an equivocation often is all they want to hear, it satisfies them and the question may not be pressed further. It is not that we wish to delude ourselves totally or do not really know; we don't want it to be said, we would believe it more if it were to be said, and anyhow it may be easier to carry on personal and professional relationships if nothing final has been said. So in our decision as to what to tell and to whom, there is on one side the truth, and on the other the merciful mechanism, protective and kindly as I see it, with which most of us are surrounded at such times. There are of course other factors. On the side of telling the patient is the fact that, in a few instances, the realization that there is no hope of further life may produce a calm and a peace that cannot be achieved if any hope remains. I will give you two examples, one of an acute, dramatic situation, the other most agonizingly prolonged. The first concerns a very young Grenadier
Guards subaltern in the early days of World War I, who came to his Captain and told him he knew he would be killed the next day. He broke down and wept. Eventually they both accepted that there was really no hope, and the next day the boy was killed, but in the intervening hours he remained totally calm and serene, and he died well. The other is of a great man who was a prisoner of the Japanese in World War II. He was tortured so terribly that when the torture stopped and he was thrown into a lightless dungeon on bread and water, and kept there for fourteen months, each day was - to use his words- heaven on earth compared with what he had had to endure for weeks and months before. How could he have sustained himself? He told me it was because he had no hope, he knew he was to die, he knew nothing could save him, and that as he had no hope there was nothing left but to endure, and this he could do. And so well did he succeed that not only did he not give away the information he most certainly had, but he remained his true self, and when he was released at the end of the War, gave to his country many years of most distinguished service. I don't think, however, that the strength that comes from the holding of no hope can be often used in medical practice, except in very special circumstances. Good timing in this, as in all things medical, is absolutely essential, and all doctors know the difficulty sometimes ofguessing even to a few weeks, let alone a few days, when a patient is going to die. Bad timing can bring near, if not actual, disaster. I remember a man, dominant in his own affairs and those of his family, who was told that he had an inoperable growth of his stomach, and I was subsequently asked to admit him under my care. When I went to see him for the first time I found he had been told all the details of his prognosis and he, in his turn, told me of his decision to eat nothing, to accept no treatment and that he was going literally to turn his face to the wall. These he did, and the awful thing was that he continued to have daily death-bed scenes with his tortured family for a devastatingly long time. Poor man, he was not one who died well. Candour can lead to peace, but it can also lead to chaos. My last point is about the importance of preserving an individual's dignity. Some of the physical indignities that are attendant upon serious illness can be minimized or even spared if real thought it given as to their necessity and commission. Cheerfulness always helps, but must be sensitive and not the patronizing heartiness of those in health who feel somehow that they are superior to those who are in their care. Such an attitude can humiliate, not cheer, and an awareness, that avoids the exposure or makes little of
Edwin Stevens Lecture
73
weaknesses, especially mental ones, is essential to support apparatus could lawfully be switched off if there was no reasonable possibility of her emerging the dignity of the sick and the dying. The preservation of the relationship between from her prolonged comatose condition. There lies on the threshold a problem which the husband and wife has much to do with personal dignity, and here again comes in the problem of lawyers have wisely left the doctors to decide, who should know. A husband may always have namely, what is 'death'? We were formerly inwished to spare his wife, and to keep from her the structed that the stopping of both heart and lungs knowledge of his impending end may seem to him were its unmistakable indicia. But many doctors the last thing that he can do for her. In other now regard as dead a patient who is in a state of circumstances a wife may wish to continue to carry deep and irremediable unconsciousness, even to the end all things for him, and will insist that he though his heart still beats and he still draws should not be told the whole because she believes breath. One day the doctors will have to make up that he could not accept it. Even if both in fact their minds about the matter, otherwise the Courts know, believing that the other does not may allow will have to decide the dispute for them. And that both of them to feel that they are each helping the would be a hideous task. As Mr Ian Kennedy has other, thus maintaining their relationship and their said, 'It would be a brave judge who would personal dignity, and enabling them to carry on contemplate with equanimity the headlines of the conversations and discussions in a normal manner. next day's press proclaiming "Judge orders burial Others, greatly privileged, may feel that the rich- of man with beating heart" (Kennedy 1975)'. But this evening we are not called upon to decide ness of their relationship would be debased by what is 'death'. We are to contemplate a patient other than total candour between them. Finally, for some, the point is reached when the who, though undoubtedly alive, is in an advanced only thing left to them on this earth is the hope that and irremediable state of terminal illness and may the memory they leave behind will be unblemished, be longing to die, and to ask what the law demands their own kind of dignity is all. Here we can help by of his doctor. Lord Hailsham seemingly has no reassuring them that we can do much to ensure doubts on the matter, for he recently said: 'The law at the moment is perfectly plain: if you have got a that they will die well. living body, you have to keep it alive, if you can' (Hailsham 1976). But some lawyers regard that Lord Edmund-Davies unqualified pronouncement as acceptable only in the sense that to set out to kill a patient is to set out to murder him, be he healthy or near death. Even if Legal Aspects the patient begs to be relieved of his grievous In my youth I was taught to be cautious. And long suffering, the doctor may not lawfully supply the experience in the law has reinforced the wisdom of fatal dose, and if he does and the patient dies the such an attitude. There are two particular reasons doctor renders himself liable to imprisonment up why caution should be maintained in responding to 14 years (Suicide Act 1961). But is it the law that the doctor must in all to the invitation by which I am honoured this evening. First, the legal issues involved are, lit- circumstances prolong his patient's life to the erally, matters of life and death. And, secondly, for utmost? Or, to put the same question in its baldest obvious reasons, I speak in a strictly extrajudicial form, may the current of the life-maintaining way and am free to express only my purely machine never lawfully be switched off? Lord personal views. Horder said that, 'The good doctor is aware of the My deep regret is that I am obliged to be difference between prolonging life and prolonging tentative, and this despite the understandable need the act of dying', but how does this work out in of medical men to be told with some assurance practice? In the Dr Bodkin Adams' Case (Criminal what is the law. But in this country we have no Law Reports 1957), Devlin J, having told the Jury machinery for obtaining abstract judicial guidance that the severe pain or helpless misery of the on problems which may arise in some future case patient vests the doctor with no special defences, but which have not yet come up for decision. went on to say: 'Law', it has been said, 'does not search out as do 'If the first purpose of medicine - the restoration of science and medicine.... The problem must health - can no longer be achieved, there is still much for arise ... before the law reacts to provide a sol- the doctor to do, and he is entitled to do all that is proper ution. Here is where science and law differ' (Bur- and necessary to relieve pain and suffering even if the ger, quoted in Canadian Bar Review 1968). Unlike measures he takes may incidentally shorten life.' [italics the judges of New Jersey, our Courts have not yet mine] had such a case as that of Karen Quinlan, and we Some lawyers have been puzzled by those conhave therefore had no occasion to consider cluding words, and one wonders how Lord Hailwhether they were right in holding that her life- sham regards them. Is the doctor free to administer
71
Royal Society of Medicine President Sir Gordon Wolstenholme
Meeting 13 December 1976
Edwin Stevens Lecture On Dying and Dying Well Sir John Richardson Bt MVO MD The Right Hon Lord Edmund-Davies PC LLD The Most Rev and Right Hon Donald Coggan DD, Archbishop of Canterbury Sir John Richardson
Medical Aspects The words 'on dying well', chosen by the Archbishop for the title of the 1976 Edwin Stevens Lecture, must mean something of very great importance to us all and yet have a somewhat different significance for each of us. They may, for instance, mean for some a quick or a painless death, or one so unexpected as to carry little or no fear with it. In solely medical terms it can mean a technically well-managed end to a life, the expression of true and successful professionalism. For those who are not doctors or nurses, together with those who are, dying well may conjure up memories of great courage, that may have amounted to heroism, and have led to true peace in dying. I shall take a most inspiring example to illustrate these different points of view. The one I wish to mention is the death of Dr Noel Chavasse, Royal Army Medical Corps, in the Great War when he won his second Victoria Cross. He was appallingly wounded in a dugout, his wounds including a penetrating one of the abdomen. In spite of this, and accomplishing a physical feat that few doctors would believe was possible, he crawled for half a mile to summon aid for the men left in the dugout who were themselves severely wounded and in great danger of their lives. He died, conscious to the end, forty-eight hours later. His death in a clinical sense was a terrible one. To all men he did indeed die well. My brief is to talk about the professional view,
and as I do so I shall be including in my thoughts all those who have the care of patients, though their viewpoints may naturally vary from mine. Doctors, nurses and relations together and in consultation-and here I stress 'in consultation and together' - should be able to ensure that dying, in the vast majority of instances, is peaceful and without conscious struggle. Unless perhaps it results from violence or comes so rapidly that help cannot be given, the means are now available, if they are used properly, to promote a sufficiently untroubled end, including the days immediately prior to it. The question so often raised relates to the word 'properly'. The meaning that is placed upon it can vary in the minds of those concerned from one extreme to the other, from the deliberate ending of a life to the strictest adherence to the dosage schedules given in the British Pharmacopeea. If Lord Edmund-Davies decides to touch upon this point I am sure that what he has to say will be of the greatest interest to all of us here. In practice the solution can usually be found by considering solely the interests of the patient and applying to them the general principles of medical management in the light of personal knowledge of the individual. What is much more difficult is to know how to manage the situation of those who are dying, but for whom death may be some time in coming. Here again the actual technical problems, if not completely soluble, should nevertheless always be capable of being met to a very material degree. I refer, of course, to the control of pain and to minimizing of the effects of complications and of anxiety. The real difficulty comes in determining the general setting and the attitudes of all those concerned. In trying to help, or at least not impede the creation of an atmosphere of peace and even happiness, doctors are touching upon matters that are also the concern of many others. Questions will arise, such as where shall the patient be nursed, and by whom? They will need careful thought, and the
72
Proc. roy. Soc. Med. Volume 70 February 1977
balancing not only of practical considerations, but of the anxiety that may be engendered in the patient for the welfare of those who are caring for him or, in those who are so caring, concerning their ability to do their best for the patient. On considerations such as these may well depend to a great degree whether or not the patient is dying well. Decisions about them cannot always be easily achieved, and usually involve the difficult and important one of who should be told the whole facts, and when this must be done. Someone must always know the facts and have them explained carefully if good management is to be established. Clearly the straightforward thing to do is to tell both the patient and whoever is nearest to him or most responsible for him. But in fact things are not always as simple as that. Sometimes it is right to tell only the patient; sometimes only the one most responsible for him. Accepting that a direct lie cannot be given, we must consider whether it is always necessary to give a complete answer to all patients. There is something in all of us, and this we well know, that rejects the idea that it can happen to us, and feels that if a thing has not been explicitly said it may well not be entirely so; certainly the longer my experience the commoner and stronger I believe this feeling to be. We tend to grasp at a last straw of hope, however illogically. Our power of self-deception is strong. Sometimes in life it is destructive, but in terminal illness it is usually benign, and this should be recognized and taken into account by those who are medically responsible. The question from whence this particular mercy comes is a fundamental one that is beyond me. What I am convinced about is that when patients ask you a direct question it must always be repeated before it is directly answered, because an equivocation often is all they want to hear, it satisfies them and the question may not be pressed further. It is not that we wish to delude ourselves totally or do not really know; we don't want it to be said, we would believe it more if it were to be said, and anyhow it may be easier to carry on personal and professional relationships if nothing final has been said. So in our decision as to what to tell and to whom, there is on one side the truth, and on the other the merciful mechanism, protective and kindly as I see it, with which most of us are surrounded at such times. There are of course other factors. On the side of telling the patient is the fact that, in a few instances, the realization that there is no hope of further life may produce a calm and a peace that cannot be achieved if any hope remains. I will give you two examples, one of an acute, dramatic situation, the other most agonizingly prolonged. The first concerns a very young Grenadier
Guards subaltern in the early days of World War I, who came to his Captain and told him he knew he would be killed the next day. He broke down and wept. Eventually they both accepted that there was really no hope, and the next day the boy was killed, but in the intervening hours he remained totally calm and serene, and he died well. The other is of a great man who was a prisoner of the Japanese in World War II. He was tortured so terribly that when the torture stopped and he was thrown into a lightless dungeon on bread and water, and kept there for fourteen months, each day was - to use his words- heaven on earth compared with what he had had to endure for weeks and months before. How could he have sustained himself? He told me it was because he had no hope, he knew he was to die, he knew nothing could save him, and that as he had no hope there was nothing left but to endure, and this he could do. And so well did he succeed that not only did he not give away the information he most certainly had, but he remained his true self, and when he was released at the end of the War, gave to his country many years of most distinguished service. I don't think, however, that the strength that comes from the holding of no hope can be often used in medical practice, except in very special circumstances. Good timing in this, as in all things medical, is absolutely essential, and all doctors know the difficulty sometimes ofguessing even to a few weeks, let alone a few days, when a patient is going to die. Bad timing can bring near, if not actual, disaster. I remember a man, dominant in his own affairs and those of his family, who was told that he had an inoperable growth of his stomach, and I was subsequently asked to admit him under my care. When I went to see him for the first time I found he had been told all the details of his prognosis and he, in his turn, told me of his decision to eat nothing, to accept no treatment and that he was going literally to turn his face to the wall. These he did, and the awful thing was that he continued to have daily death-bed scenes with his tortured family for a devastatingly long time. Poor man, he was not one who died well. Candour can lead to peace, but it can also lead to chaos. My last point is about the importance of preserving an individual's dignity. Some of the physical indignities that are attendant upon serious illness can be minimized or even spared if real thought it given as to their necessity and commission. Cheerfulness always helps, but must be sensitive and not the patronizing heartiness of those in health who feel somehow that they are superior to those who are in their care. Such an attitude can humiliate, not cheer, and an awareness, that avoids the exposure or makes little of
Edwin Stevens Lecture
73
weaknesses, especially mental ones, is essential to support apparatus could lawfully be switched off if there was no reasonable possibility of her emerging the dignity of the sick and the dying. The preservation of the relationship between from her prolonged comatose condition. There lies on the threshold a problem which the husband and wife has much to do with personal dignity, and here again comes in the problem of lawyers have wisely left the doctors to decide, who should know. A husband may always have namely, what is 'death'? We were formerly inwished to spare his wife, and to keep from her the structed that the stopping of both heart and lungs knowledge of his impending end may seem to him were its unmistakable indicia. But many doctors the last thing that he can do for her. In other now regard as dead a patient who is in a state of circumstances a wife may wish to continue to carry deep and irremediable unconsciousness, even to the end all things for him, and will insist that he though his heart still beats and he still draws should not be told the whole because she believes breath. One day the doctors will have to make up that he could not accept it. Even if both in fact their minds about the matter, otherwise the Courts know, believing that the other does not may allow will have to decide the dispute for them. And that both of them to feel that they are each helping the would be a hideous task. As Mr Ian Kennedy has other, thus maintaining their relationship and their said, 'It would be a brave judge who would personal dignity, and enabling them to carry on contemplate with equanimity the headlines of the conversations and discussions in a normal manner. next day's press proclaiming "Judge orders burial Others, greatly privileged, may feel that the rich- of man with beating heart" (Kennedy 1975)'. But this evening we are not called upon to decide ness of their relationship would be debased by what is 'death'. We are to contemplate a patient other than total candour between them. Finally, for some, the point is reached when the who, though undoubtedly alive, is in an advanced only thing left to them on this earth is the hope that and irremediable state of terminal illness and may the memory they leave behind will be unblemished, be longing to die, and to ask what the law demands their own kind of dignity is all. Here we can help by of his doctor. Lord Hailsham seemingly has no reassuring them that we can do much to ensure doubts on the matter, for he recently said: 'The law at the moment is perfectly plain: if you have got a that they will die well. living body, you have to keep it alive, if you can' (Hailsham 1976). But some lawyers regard that Lord Edmund-Davies unqualified pronouncement as acceptable only in the sense that to set out to kill a patient is to set out to murder him, be he healthy or near death. Even if Legal Aspects the patient begs to be relieved of his grievous In my youth I was taught to be cautious. And long suffering, the doctor may not lawfully supply the experience in the law has reinforced the wisdom of fatal dose, and if he does and the patient dies the such an attitude. There are two particular reasons doctor renders himself liable to imprisonment up why caution should be maintained in responding to 14 years (Suicide Act 1961). But is it the law that the doctor must in all to the invitation by which I am honoured this evening. First, the legal issues involved are, lit- circumstances prolong his patient's life to the erally, matters of life and death. And, secondly, for utmost? Or, to put the same question in its baldest obvious reasons, I speak in a strictly extrajudicial form, may the current of the life-maintaining way and am free to express only my purely machine never lawfully be switched off? Lord personal views. Horder said that, 'The good doctor is aware of the My deep regret is that I am obliged to be difference between prolonging life and prolonging tentative, and this despite the understandable need the act of dying', but how does this work out in of medical men to be told with some assurance practice? In the Dr Bodkin Adams' Case (Criminal what is the law. But in this country we have no Law Reports 1957), Devlin J, having told the Jury machinery for obtaining abstract judicial guidance that the severe pain or helpless misery of the on problems which may arise in some future case patient vests the doctor with no special defences, but which have not yet come up for decision. went on to say: 'Law', it has been said, 'does not search out as do 'If the first purpose of medicine - the restoration of science and medicine.... The problem must health - can no longer be achieved, there is still much for arise ... before the law reacts to provide a sol- the doctor to do, and he is entitled to do all that is proper ution. Here is where science and law differ' (Bur- and necessary to relieve pain and suffering even if the ger, quoted in Canadian Bar Review 1968). Unlike measures he takes may incidentally shorten life.' [italics the judges of New Jersey, our Courts have not yet mine] had such a case as that of Karen Quinlan, and we Some lawyers have been puzzled by those conhave therefore had no occasion to consider cluding words, and one wonders how Lord Hailwhether they were right in holding that her life- sham regards them. Is the doctor free to administer
