Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence

Examination of Witnesses (Questions 240 - 259)



  Q240  Lord Joffe: Professor Saunders, I have mentioned to you this article[1] on pain and palliative care, and it relates to section 15 of our Bill, which deals with pain relief. In this article, if I may read part of the relevant extract, it says, "In a national survey of hospital patients it was found that, of the patients who suffered pain, 33 per cent were in pain all or most of the time and 87 per cent had severe or moderate pain. From a palliative care perspective, moderate to severe pain has been identified as a major symptom in 50 per cent of seriously ill patients who are conscious during their last three days of life. Even patients who are able to talk with their doctors about their pain and suffering did not necessarily have optimal or even satisfactory pain relief at the end of life". Do you think, if that is the position as you see it in the Royal College of Physicians in 2000, that that does not make the case for section 15?

  Professor Saunders: I do not think there is any particular problem with section 15 in your Bill, Lord Joffe. It seems to me that there is nothing in section 15 that is not already available to patients. I see section 15 as entirely superfluous. Section 15 says that the patient suffering from a terminal illness shall be entitled to request and receive such medication as is necessary to keep him from pain and distress as far as possible. I think that is already entirely possible under the law. I simply do not see the necessity for this clause within the Bill itself. The section that you quote does in fact highlight very vividly the deficiencies in training in palliative care in the UK at the moment. It highlights, as I think that article does earlier on, the omission of palliative care in the major textbooks on medicine. It highlights the need for better training both in the techniques of pain relief per se, and also in the very difficult communication issues that we have in a multicultural society, where views on death and dying are so very varied. I would be the first to admit that I do not think I am fully competent myself. I think it is very difficult, and there are huge educational issues in there; and I think I can say that as a College we feel very strongly about the need for better education, better standards.

  Q241  Lord Joffe: Could I just put two questions to Professor Tallis? Could you just give us a bit of background about the College and its membership?

  Professor Tallis: It has got approximately 20,000 fellows, and members and it is the fellows who have voting rights. It is governed by a Council which consists of about 30 individuals, most of whom are clinicians, and includes senior officers of the College. The vast majority of the College fellows are hospital doctors or senior clinicians. It represents quite a significant swathe of UK medicine. There is an under-representation of general practitioners, who have their own college, but there is a significant number of general practitioners within the Royal College of Physicians.

  Q242  Lord Joffe: To that would be added the significant number of members of the other royal colleges which have come through via the academy?

  Professor Tallis: Yes.

  Q243  Lord Joffe: The other question I wanted to ask you relates to the point that was raised by Dr Cox, but I would be very interested to have the views of all the witnesses, and is on the question of the difficulty of predicting life spans covered by the "terminal illness" definition that we have over here. Perhaps I should read it out and ask for your comments as to the feasibility of applying it. I have spoken to a number of medical consultants and oncologists, who say that there are very real difficulties with many diseases in predicting life spans but that particularly with cancer, which is the main killer in this country at the moment, it is possible to form a reasonably reliable (though not perfect) prediction, particularly at the time when curative treatment has ceased. Are you familiar with the definition or should I read it out?

  Dr Cox: Perhaps you would read it out.

  Q244  Lord Joffe: It says, "Terminal illness' means an illness which in the opinion of the consulting physician is inevitably progressive, the effects of which cannot be addressed by treatment, although treatment may be successful in relieving symptoms temporarily, and which will be likely to result in the patient's death within a few months at most".

  Dr Cox: We would accept that as a good definition of terminality. The difficulty arises in perhaps the last phrase of that, which indicates that the patient will die within a few months. Unfortunately, all of us as physicians have been in the position where we have predicted a death for a patient. Two years later they have come banging on our door and said, "Here I am, doctor. I am still alive. Things have not gone the way you expected". Similarly, you can predict to a patient and explain to a patient that they are likely to die within a few months, and in some senses sometimes that takes away hope and they have gone downhill a lot more quickly. Your definition seems to be the best that we have at the moment. What we were trying to highlight is that sometimes it is a little more difficult in practicalities than that definition gives credit for.

  Professor Tallis: The worry behind this, of course, is that you might be wrong, and seriously wrong. Of course, medicine is a probabilistic art. It is never absolute and 100 per cent and in making all sorts of decisions, whether it a decision to do a potentially dangerous operation or withdraw treatment or whatever, it depends on assessment of probabilities. I think this Bill should stimulate one to try and get a better grasp of these probabilities and indeed to make the best use of experience from elsewhere. How often in The Netherlands, Oregon and so on, have people found evidence that they might have been seriously wrong; that somebody has been considered as a candidate for assisted dying who has then defied expectation. In most cases the vast majority of prognoses are right but there will always be situations where the diagnosis is wrong. That is an aspect of medicine as a whole and it inevitably is reflected in this particular issue. It places a huge burden of requirement on as much information as possible and making sure our ability to prognosticate continues to improve.

  Professor Saunders: Can I add a footnote to that, Lord Joffe? First of all I would like to correct you on a factual issue. Cancer is not the main cause of death in the UK. I cannot quote the exact figure, I am no epidemiologist. But I would guess that it must be around 20 or 30 per cent of deaths. Cardiovascular disease is far more common. And, of course, there is a large burden of chronic disease to which this Bill potentially applies— in particular, chronic lung disease, chronic bronchitis, emphysema, which is very distressing throughout its final phases— and a very large burden of chronic congestive heart failure, which causes enormous suffering. If the mental picture behind this Bill is one of cancer, some re-thinking may need to be done. I personally think that prognosticating in those situations is fraught with the most extreme difficulties. I can think of many patients that I have expected to live two or three months with chronic heart failure or with chronic lung disease and I have been spectacularly wrong. You are correct in saying that prognostication is probably somewhat more accurate in advanced cancer but, of course, it begs the question as to how advanced. Certainly prognosticating may be better when somebody is within the last two or three weeks of their life. I have to say that, when they are six or eight months away from it, it is actually pretty desperately hopeless as an accurate factor. Although I accept what my colleague says about medicine being probabilistic, the degrees of standard deviation from the prediction do get very large indeed when you are moving up to the six, seven, eight month mark, which I think the Bill does imply. I think there is a very important practical issue there in the Bill, which a number of members of the College have expressed anxieties about.

  Q245  Baroness Thomas of Walliswood: We have had a lot of discussion about the patient's autonomy versus the common good. In real life—and I am asking a question, although I may sound as though I am making a statement—is it not the case that what goes on is a relationship between the doctor and the patient which is a form of negotiation? Am I right in thinking that the terms of that negotiation are changing in the modern world? The patient is becoming more demanding—if you like, less obedient, less willing always to accept what the doctor says is correct; and there is a lot of evidence of that from people who are told one thing by their doctor and then go away and research it on the internet and come up with a totally different approach to the disease. That sort of attitude would have been unheard of 15 years ago, certainly 20 years ago. There is this negotiation which is going on. In effect, when you come to a decision which, heaven knows, is going to be a difficult one, about assisting a patient to commit suicide, which is what this Bill is about, that will be the result of some kind of agreement, will it not, between the patient and the doctor? Looking at it in a human kind of way, how would any of you tackle that sort of negotiation? The heart of this Bill is something to do with how these decisions are arrived at, when I guess that these rather grand considerations of ethics or the common good actually will not be the subject of discussion at all; it will be something much different from that. How do you safeguard the activity, which is really what I think the College of Physicians was talking about— not as to whether it is virtually moral or not but how you would actually handle it?

  Professor Tallis: First of all, your view of the general social trend is absolutely right: the willingness to subordinate one's autonomy to the common good seems to be attenuated with time. That is an epidemiologically ungrounded observation but one gets the feeling it is true. That is certainly the context and I think it probably explains a lot about why this issue has come to the fore. It is a reflection of general social trends. The issue of how one arrives at a decision seems to me to be that, when principles fail, one has to resort to conversation, and I am a greater believer that within the interstices of principles one has to have a conversation on ethics. The decision and the agreement as to what the patient wants, the sense of what the patient wants, emerge during this very long conversation. It will not be a one-off conversation. It will not necessarily begin at the time of the patient seeking assisted dying or even at a time when the patient is perilously ill. It may well begin a long time before, and that is why it is very important that it should be part of a longer relationship with the physician. I would see this kind of decision emerging out of a larger conversation, encompassing all end-of-life decision-making and indeed encompassing things far upstream in the management of an illness. It would not just be a one-off visit and a decision. It would be something that is, as I say, part of a much longer conversation between a physician who cares and a patient who is cared for.

  Professor Saunders: Can I add two footnotes to that? One is the enormous practical one, which presumably is the problem landing on Lord Joffe's desk, if I may say so. In my understanding at the moment, the issues surrounding conscientious objection in the Bill have been temporarily suspended, or a line has been put through them, while new arrangements are in place. But access to the provisions of the Bill, if enacted, will of course depend in the first instance on being under the care of a doctor who is actually in sympathy with that Bill and is prepared to discuss it with you. That is necessarily the case, so that if you have a patient with a long-standing chronic lung disease who has a long term relationship with a chest physician, if you are a nephrologist who has a patient with long-standing chronic renal failure or an endocrinologist who has a patient with long-standing hormonal complications, etc, etc, there will be a need to say that, if the patient has a right under the law to assisted suicide, how can that right be realised if their long term doctor is actually not sympathetic to their request? That I see at the moment as simply a practical issue. I cannot express an opinion because as far as I can see the proposal has not been redrafted and we would want to look at any proposal that is made in the redrafting.

  Q246  Baroness Thomas of Walliswood: In the case of abortion, which is an equally divisive issue, there certainly are doctors who will say to a woman seeking abortion, "I am not going to counsel you on this matter because I do not believe in it, but I will refer you to somebody else who will be able to talk to you about that because he or she has different views than mine". Do you not think that might be one of the things that might be a solution? You are shaking your head.

  Professor Saunders: No, I do not, Baroness Thomas, because I do not actually see the two situations as being in parallel. I can only give a personal answer rather than a College one. The reason I do not see them in parallel is that the one thing we can all agree on is that, if I give barbiturates and curare to a competent adult, I am killing that person. We can agree that; I do not think anyone can contest that that is killing somebody. It is killing a human person. I think even the most vocal opponent of abortion, despite the rhetoric, which at times is extremely powerful with inappropriate violence in certain countries of the world, I do not think people in their heart of hearts actually do think that destroying a six-week foetus is truly akin to murder. I know that many people say it is but I must say I doubt whether they truly believe that. In the case of assisted dying to say, "I am not going to murder this patient but I will arrange for another murderer to do so" strikes me as a very strange position to be in.

  Q247  Baroness Thomas of Walliswood: With respect, I think that is way beyond what the Bill says. The Bill exempts a doctor from legal penalty if he conducts himself in the way that the Bill determines. It is a very narrowly drawn little Bill.

  Professor Saunders: Indeed it is.

  Q248  Baroness Thomas of Walliswood: I am sorry to protest but I thought that was a little bit over the top.

  Dr Cox: If I might come in here, going back to your original contention that the relationship between doctors and patients has changed over recent years, that would certainly be my experience and that of a lot of other general practitioners. With respect, I think what you were pertaining to was an ideal relationship perhaps between the general practitioner and the patient which is of long standing, which is one of trust, where the patient and the doctor had gone through a lot of different things together. Unfortunately, some of the changes that have taken place in our Health Service in the relationship between doctors and patients of late do mean that there is more frequently just a spurious relationship between the patient who comes to see the doctor that is on duty that particular day or the doctor that is only temporarily in the practice. And, again, I do not wish to draw a distinction between social communities but it may well be that some of our poorer communities may find that, though they request assisted dying, they find it more difficult. We may still end up with what does happen to a lot of patients who request abortion at this stage, which is that they are referred to two family planning doctors, and their own general practitioner would not be able to assist in that. And that in a sense, with due respect to what Professor Saunders said, becomes almost like death on demand and we would not want that.

  Q249  Lord McColl of Dulwich: I was a little puzzled by Baroness Thomas's protest at what Professor Saunders said. Would it be all right if he put it into Greek and said "thanatised the patient" rather than used the Anglo-Saxon word he used?

  Professor Saunders: It was a little provocative using the word, I suppose. Yes, with respect to Baroness Thomas, I do not particularly understand her protest.

  Q250  Chairman: We do not need to resolve that. It is really the advice that you are able to give us on the more practical and—what shall I say?—slightly lower ethical matters that would be of particular value. How you would describe the procedures in the Bill would be a matter on which you might have different points of view. Could you help me a little on this question of forecasting? As you say, medicine is a probabilistic science and the test here is "likely to die within a few months at most". It is the consulting rather than the attending physician that may ultimately have to decide this question. But, whichever of you wish to answer it, how would you go about, in a particular case of a particular individual, assessing how long that person has to live?

  Professor Tallis: This kind of context demands a very high level of diagnostic precision, higher obviously than many other decisions because the decision is a very grave one. However, we are talking about an individual who has often had a very long-standing progressive illness whose manifestations are very clear and who will have been fully worked up from the clinical point of view.

  Q251  Chairman: I think you have pointed out that. I was laying that aside in your memorandum. It is possible to have mistakes in diagnostics but I was assuming that there was not a mistake in diagnosis at the beginning of the question, that a correct diagnosis has been made, and I was wondering how a physician or other specialist goes about assessing how long that particular individual has yet to live.

  Professor Tallis: It depends on the overall statistics. I know that Baroness Finlay will know much more about this in terms of the overall statistics of life expectancy of somebody not with just a particular cancer but a particular cancer in a particular stage of development or cardiac failure or whatever; and, of course, there are outliers and there is quite a significant variation. John is quite correct that there is a huge variation in the case of something like cardiac failure. Whether there is that huge variation in those people who are so parlously ill and who have been probably worked up and all their symptoms have been sorted out as far as is possible with modern medicine I think is something that needs to be established. This is an empirical issue and I think it would be very important to draw upon experience from elsewhere. I am not in any way downplaying the difficulty of making a precise prognosis in some cases but more saying that one of the clinical requirements is that we should acquire as much knowledge as possible to maximise the precision of prognostication.

  Q252  Chairman: I was hoping that you would be able to help us about how you go about it. I understand that you gather as much information as you can about the general knowledge of the particular condition in which the patient is but, having done all that, how do you then assess the amount of time over which that person still has life?

  Professor Tallis: It is based on general experience of those particular conditions at that particular stage of development; but people are biologically variable, that is true. In many cases where people do have unbearable suffering which cannot be alleviated and so on, I guess they themselves will have made the decision that they would take the risk of trading off a longer prognosis perhaps than expected against continuing suffering.

  Q253  Chairman: I think it is fairly fundamental now that in any treatment or course of treatment on which a doctor or physician is going to engage they must receive the informed consent of the patient. I know there is a bit of discussion about exactly what that involves, as there is about most other consents in this area. What would you think would be required in the way of discussing the need for informed consent in this situation where you have someone who is being offered, as a result of their own request, assistance to die?

  Professor Tallis: Total honesty to say, "This is what I think is going to happen but I have a certain level of uncertainty about this". It seems to me fully informed consent is unachievable in most situations because one is always dealing with uncertainties, but if one hedges about one's prognostications with a statement of their probability or certainty as far as one knows, then I think it is very much for the patient to decide whether they want to take that kind of risk. I imagine that is how it would work out.

  Q254  Chairman: Does the overall view of the physician about the nature of human life have any part in it or not?

  Professor Tallis: I suspect it might well do. I expect that without wishing to do so we often influence patients' decisions by our own world view. I think it would be almost impossible not to put something of oneself into the interaction of the patient, but that is always there and, given that it is always there, it factors out.

  Q255  Baroness Finlay of Llandaff: You have outlined the burdens and difficulties and problems here. One thing that I read in one of your pieces of evidence was the need perhaps for prior notification rather than post-event notification. I just wonder why you feel that doctors should do this given the discrepancy that there is, the difficulties for doctors and so on. Why not have a completely separate thanatology service outside of medicine if that is what patients want? I would suggest to you that it is fundamentally different from abortion in that you have two lives—the life of the mother which is at risk by the procedure, and that may require medical intervention and sometimes intense medical intervention to save the mother's life—and therefore we are talking about two completely different things, whereas here one person's life is going to be ended and there is not somebody else's life that in the process of doing it is jeopardised and would require medical intervention potentially to resuscitate them. I fail to see why you have not been advocating the view that society sets up a completely separate service.

  Professor Tallis: This has come out of some of the conversations we have had but it is very much about the relationship between the patient and an individual who has been involved in seeing them through. I know from experience internationally that people see assisted dying as part of the whole end-of-life care. It is one of many options—terminal sedation, control of symptoms and so on—and to hand somebody over to somebody else for this separate thing would be seen as a way of abandoning your patient.

  Q256  Baroness Finlay of Llandaff: So you are viewing it as a therapeutic option?

  Professor Tallis: I am viewing it as a therapeutic option, yes.

  Q257  Baroness Finlay of Llandaff : Because therapy has good intent in it. If it is not a therapeutic option, then there is no good in it. You would not consider something as a therapeutic option if there was no evidence of good in it. So I wonder whether you see the therapeutic good in this as that it needs to be administered by medicine itself?

  Professor Tallis: I am aware that in a sense I am going off message here by now acting as an advocate as opposed to maintaining studied neutrality, and I am sure John may have a view. To me it does seem to be a therapeutic option, as are many other forms of treatment that may hasten people's deaths. That is a personal view. For that reason I do feel it should be regarded as part of the therapeutic alliance between the patient and the doctor. I do see, without trivialising the phrase, that it is part of a whole "package of care". This is not our position from the College which, I hasten to add, is very much that we are neutral as to the desirability of this being available.

  Q258  Baroness Finlay of Llandaff: If we took the past five years in your own clinical practice, how often have you felt you would want to do what Professor Saunders outlined, which is to go up to a patient and inject him or her with barbiturates and curare because you felt that there was absolutely no other therapeutic option available to you?

  Professor Tallis: I have felt despair and I have felt grief at some of the unbearable suffering some of my patients have had, but I have never thought of this option because it has never been an option that has crossed my mind. It has not been an available option though one has often had a sense of defeat at failing to deal adequately with a patient's appalling end-of-life experiences. But I have never considered this option because I am not somebody who would naturally think outside the law.

  Q259  Baroness Finlay of Llandaff: So what did you consider?

  Professor Tallis: The patient continues to receive palliative care.

1   Note by Lord Joffe: "The control of pain in Palliative Care" John Saunders, Journal of Royal College of Physicians Lond. Vol 34 No. 4 July/August 2000. Back

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