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

Examination of Witnesses (Questions 1920 - 1939)



  Q1920  Baroness Hayman: Dr Dacombe and Dr Cole, you have both mentioned individual patients with whom you have dealt over the years, a small number who had a persistent, competent desire and who would have availed themselves of this legislation. I wanted to put to you a couple of things that we have received in evidence over the sessions and ask how they fit with your experience. I will probably over-simplify so forgive me. It has been put to us that patients who are in their last six months of life and terminally ill, if they wish to, can die. It has been put that they let go of life and that they can influence the timing of their own death. It has been put to us that if they do not there is almost something psychologically unresolved. These patients could refuse food and water and end their own lives that way. Sometimes they are in control of their own medication. I think that is an example that Lord McColl has given in the past. There is some shifting of responsibility going on here that represents an uncertainty. If the certainty was there, these patients would be able, whatever their disease, to take control of their own destiny in death. They would let go of life. I wanted to ask you, in your experience, whether that is a universal phenomenon that you have seen or whether there are hard cases that would remain despite that assertion or phenomenon, if you agree it exists.

  Dr Dacombe: I acknowledge the comments that you are making and I am aware of some of the previous evidence that has been presented to you that has suggested that. Certainly in my experience and in the experience of my colleagues within palliative care whom I have spoken to about this, we are well aware that there are individuals who particularly very close to the end of their life, as in within a matter of days or perhaps at the most one or two weeks, that we have all seen who have appeared to be able to finally let go. That has to be some sort of mixture of physical, psychological and spiritual decision making and action on their part. They have been able to finally let go of life to some extent at will. In other words, those who have finally made it to a given anniversary or a given event and have then clearly let go of their final will to keep living. That certainly is a phenomenon that has been seen, reported and discussed at some length within all areas of health care but within palliative care. However, there have been other patients that I have encountered who have expressed powerful desires for their life to end, who have not necessarily been quite so clearly physically imminently close to death, but would still come within the sphere of a Bill such as this. They have clearly not been able to effect that process, even though they have declared a powerful wish to do so. In particular I can think of at least one person with whom I have been closely involved in the last year who spoke about this at length and who did, indeed, choose, as it were, to take to bed, to refuse food, to refuse fluid (other than that to deal immediately with discomfort from withdrawing from fluid), and he then subsequently took a long time to die, because that was the natural process that they had to follow. I am not convinced that all people can achieve the psycho-spiritual connection with their inner being, if you like, that allows for that letting go to be successful.

  Dr Cole: I would not have a great deal to add to that. I certainly agree that in many specialties in medicine you see patients who decide to let go when they have reached a certain point in time, whether it is an anniversary or a big family event, and then they decide to "turn their face to the wall"—which is a very real expression that is used; not a very nice expression—but I would not otherwise have anything to add to what has been said.

  Professor Tallis: In the correspondence we have had as a result of an article from the Royal College of Physicians last month, somebody wrote to me and suggested that the minimal period of 14 days should be regarded as an existential pause, and people should be positively encouraged very much to resolve those kinds of possibly resolvable psychosocial issues. In other words, that period should be used positively, and, it may be, as a result of which, the person would not want to take advantage of assisted dying. So there is still that opportunity, in the gap between the patient, as it were, signing up for assisted dying and its being implemented, in which precisely those issues could be actively explored rather than hoping they would just float to the surface.

  Q1921  Lord Turnberg: I have a couple of questions. I think Dr Cole talked about the difficulty of judging when a patient's illness is terminal, and, on the six months' suggestion that we are hooked on, I think you suggested that maybe two months would be better. Is there anything particular about the length of time? Should it be two months, three months, four months?

  Dr Cole: I think the prediction of prognosis is more reliable at two months than it is at six months. I think there is evidence to support that. The point comes when you can sufficiently reliably predict how long a patient has to live. I would suggest that this legislation, if it were passed, applied to those patients for whom a reasonably reliable prognosis could be given. You can argue the details of that, but in my practice I would say it was within one or two months of death.

  Q1922  Lord Turnberg: That leads on to my second question. We have heard from yourselves and others that the patients who may wish to take advantage of such a law are controlling individuals who wish to keep control of their own destiny and chose their own time of death. This leads us on to the question of whether it also has to be in someone who is suffering unbearably. Who is it that makes the judgment of unbearable suffering in that sort of person? This is the area. Because it may well be that the patient is not in pain, is not necessarily suffering horrendous symptoms of the characteristic case you have described, but really cannot bear the thought of continuing with the idea that they have a terminal cancer.

  Dr Cole: I think ultimately the patient should make that decision. This is part of individual autonomy. That decision will need to be supported by professional people and witnessed by professional people.

  Q1923  Lord Turnberg: Their support would be from professional people, that this patient really does have a terminal illness, not necessarily that they are suffering unbearably.

  Dr Cole: I think intractable distress or intractable suffering is a subjective phenomenon. I think many have argued that that is something that the patient himself or herself can make a judgment about, but I think that professionals can appreciate what the patient is saying to a greater or lesser extent and support that.

  Q1924  Lord Turnberg: That brings us to the Swiss situation, because there it is not necessarily someone who is terminally ill, it is someone who is unbearably suffering at any stage.

  Dr Bosshard: I would add that I think physicians have no particular expertise for unbearable suffering.

  Baroness Greengross: There is another bill going through the House at the moment, the Mental Capacity Bill. We were discussing this last week and a point was made, quite genuinely, that if somebody makes a decision and they are mentally competent, their autonomy must prevail. We may not like the decision, but they are adults and capable of making the decision. We are talking about mentally incompetent people here. In the end, self-pride and dignity are also very important to us as adults, and they do not go away as we get old or if we are dying. We cannot get into the skin of a dying person: they have to know what is acceptable to them, even if we do not always feel the same way as they do. I think the whole difficulty of this Bill really is the responsibility for that decision. That is what it is all about. I suppose I believe in the very end that it must be a competent adult who is finally responsible for the decision in this case. With all the safeguards and all the expertise being available, it is that person in the end whose view should prevail, because it is about the quality of that person's life.

  Professor Tallis: Could I pick up on a couple of things. Of course the ultimate arbiter is the subjective experience of the patient, but I do not think someone would be considered for assisted dying if they did not have any objective pointers: appalling pressure sores, incontinence, being bedfast, or uncontrolled pain due to bony secondaries or whatever. Clearly, although the decision that something is unbearable lies with the patient, it has to have objective reasons. Then there is the issue of prognosis. It is very important to tease out two components of prognosis, it seems to me. One is the prognosis of how long you are going to live and the other is the prognosis for the extent to which you are going to recover from this unbearable situation. If, for example, somebody actually might have lived a little bit longer than you expected, that in itself is not an objection or refutation of the prognosis one is making, because one is saying: "Is this person ever going to get out of this unbearable situation? Has everything been tried?—all the recommended care." If the situation is unbearable and the prognosis is that it is going to remain unbearable, then that surely is the absolutely key issue. Clearly that will only happen, usually, within two months of death, but it may be a little bit longer than that. So I think it is very important not just to confine the notion of prognosis to life expectancy but to expectancy of quality of life: whether there is going to be an improvement or whether it is going to remain in the condition that the patient has deemed unbearable.

  Q1925  Lord Turnberg: Should six months be on the face of the Bill or 12 months?

  Professor Tallis: It is always very difficult. It always seems arbitrary, does it not? These are arbitrary decisions. And, I guess, six months is not the sole criteria. There is a whole pile of other things, all coming together. At the most six months, but with many other features. Of course, people particularly like David and Carole will have a much better idea, a feeling, for how long somebody is going to live and would, I guess, be rather unhappy if there was life within a year or whatever.

  Dr Cole: My preference would be to say "usually less than three months" rather than the six months.

  Q1926  Lord Taverne: I would like first to ask questions of Dr Dacombe. Some of the evidence we have had has suggested that the Bill is not needed because palliative care is the answer to people who are in the situation of unbearable suffering. On the other hand, the overwhelming evidence—and I hope I am not misrepresenting it—that we have had from the Netherlands is that they see no conflict at all between palliative care and euthanasia—or their particular form of euthanasia; in fact, they feel that they are completely complementary. What would be your view, from your experience? I know that Sally Greengross has argued that it is easy to provide palliative care under the Bill, but do you see any conflict between the palliative care and the Bill? That is the first question. Related to that: in the case of unbearable pain—and I know that in a lot of these cases it is loss of control rather than unbearable pain for people who ask for euthanasia—is it always true that palliative care can mitigate unbearable pain and relieve it?

  Dr Dacombe: If I may take the first point first. I do not think myself there does have to be a direct conflict between this type of legislation and palliative care, but I do think there is a very great need for both those points, which I myself raised in my introduction, to be looked at in parallel. In other words, this Bill certainly should not be seen as the answer to the problem that we have a deficit of care. Were people to be seeking assisted dying because of a deficit in the care that could be provided to them, that would be the most frightful indictment on our society, would it not? So I think it is essential that both those things are looked at together, but I do also believe—and I am ready to recount the experiences to which I have already alluded—that, whatever volume and level of palliative care we do deliver, there will be some people for whom that is not providing the answer to their difficulty, in that it is not actually meeting their unbearable suffering. Therefore, though I may find that very sad and I may find it, indeed, disappointing, as a palliative care practitioner, I acknowledge that that problem exists and I believe that it will continue to exist. That is why I believe the two things ought to be looked at in parallel, and I do not necessarily find a conflict there as long as both are being addressed. In terms of the second point about unbearable pain, I would say that the vast majority of difficult-to-manage pain can be eased to a very great extent by one or a collection of measures that can be applied under the umbrella of specialist palliative care. There is undoubtedly a very small number of patients who are still left with, whatever measures you persist with, some degree of pain. Clearly part of what we are aiming to do in palliative care is to relieve all suffering, and there are many components of pain—and I am sure that is a concept that has been put to you before now—and it may be that some small number of those components are left in place but by easing a great many of them you relieve the total distress to a very considerable extent. But there are no panaceas for all forms of pain.

  Q1927  Lord Taverne: My second question is to Professor Tallis. You have given powerful reasons why you are in favour of the Bill. Originally you were opposed to the Bill. You have given one reason why you have changed your mind: looking at the evidence, you do not think now it would weaken the relationship, the trust, between doctor and patient. Why were you otherwise originally against the Bill? Apart from that, what has made you change your mind?

  Professor Tallis: Originally, it was the Royal College's response—although it was a response which I was entirely behind. The Bill itself has changed in some very important respects, and I think that was the first thing. There are more diagnostic safeguards put in. The change in the Bill to me was very important. The other is that my original response was not rooted in an understanding of what was going on elsewhere and I think my response contained empirical comments that did not stand up in the light of international experience, not just in relation to the potential threat, as I saw it, to the development of palliative care, but also the myths that perhaps one subscribed to that all patients in the appropriate palliative care setting could be managed to such a point that their suffering was bearable. I was very impressed by the Oregon data, which showed that the vast majority of people who sought assistance in dying actually did so in the context of hospice care, in a state which I think is regarded as the second best state in terms of palliative care throughout the States. For those sorts of reasons, I felt I could support the bill—partly on the basis of change in the Bill, partly on a better knowledge of what is going on elsewhere.

  Q1928  Chairman: I would like to ask Dr Dacombe a little bit about this relationship between palliative care and this Bill. Is it the case that a good deal of suffering can be relieved by appropriate palliative care?

  Dr Dacombe: Yes, absolutely.

  Q1929  Chairman: The question of whether a particular patient has unbearable suffering, in the sense that it cannot be alleviated, will depend to a considerable extent on the amount of palliative care service that is available to that particular individual.

  Dr Dacombe: Absolutely. Both at the generalist and the specialist level.

  Q1930  Chairman: I understood that to be the basis on which you said it would be very important, if a bill of this kind were to be made law, that patients would have available to them the best level of palliative care that could be given across the country.

  Dr Dacombe: Absolutely.

  Q1931  Chairman: Do you get satisfaction out of being a palliative care specialist?

  Dr Dacombe: Yes.

  Q1932  Chairman: What does that arise from?

  Dr Dacombe: I think it arises from working in a speciality where team work is so important; where sharing problems with multiple other disciplines is so important. It comes from working in an area where, generally speaking, you probably have more time to give to patients and where the entire focus of what you are doing is around trying to meet the individual needs of an individual patient in their individual circumstances alongside all those others who are important in their life. I am very comfortable, as a doctor, that I have no sense of failure as a doctor in working with patients who have incurable disease. Clearly there could be people working in medicine who would like to believe that they can "cure" their patients—although in truth we know that a great many people in our population are living with some form of chronic illness that cannot be cured. I do not have any sense of failure in the sense that I have to work with patients who have incurable, progressive disease who will clearly die from that; rather, I actually appreciate the successes along the way that can be achieved by meeting their individual needs as far as is possible and achieving the successes that they would define for themselves in their remaining life.

  Q1933  Chairman: When pain is relieved, what sort of quality of life does a person who may not have long to live have (notwithstanding the pain has been relieved to a certain extent)?

  Dr Dacombe: Quality of life is a very difficult and complex subject, as I am sure has been said to you by many people before. As I am sure you are aware, quality of life cannot be determined only by physical symptom control. I think we have to recognise that, depending on your faith background and your cultural background, you may not seek loss of pain as a prime objective in dealing with your incurable disease. There are cultures where actually dealing with pain yourself and suffering through it is part of the way you achieve what you wish to achieve yourself spiritually in the afterlife. I think that is an important point to make because we do tend to focus on pain control as something that is all-important, and it may be all-important for the majority of Christians or those of certain faith backgrounds, but that does not apply across the board. But quality of life does relate to physical symptom control. Clearly, people do not wish to be in pain, they do not wish to be feeling sick, they do not wish to have symptoms that are actually interrupting their ability to think and to enjoy their surroundings. On the other hand, patients can have other physical symptoms which it is not possible to relieve. If they have intractable weight loss and they are developing a great deal of physical weakness, those are not necessarily things which it is possible to overcome, and they may perceive that that does burden them in a way that they would perceive was unbearable suffering. And clearly it is not my right to define their suffering for them.

  Q1934  Chairman: We have heard about the system in Switzerland from your colleague. That is not exactly the same as what is proposed in this Bill. Have you any view about the merits of the different possibilities in this area of assisted dying; namely, the kind of situation in which the doctor may provide the necessary means with the kind of additions to which Dr Bosshard has referred, and the other type of legislation in which the doctor may positively take action directly to bring the patient's life to an end? Do you follow me?

  Dr Dacombe: I think I do. I think there are some aspects of what you are alluding to which it is not in any way my place to comment on here today, in the capacity that I believe I am here. I am very well aware that you have explored yourselves at some length the systems operating in the Netherlands and Oregon, and obviously we have George here to answer questions directly about Switzerland. I think the comparisons between those systems and what might be perceived as the good or the evil in any of them actually rests with yourselves in making those comparisons.

  Q1935  Chairman: I am thinking from your own point of view.

  Dr Dacombe: From my own point of view, I think the safeguards I would want to see in any system, in terms of what would be expected of a doctor involved in the care of the patient, do actually exist in this Bill, inasmuch as I do believe it is very important, whether you are talking about a general physician or a palliative care physician, that it should be possible for you to have a conscientious objection to being involved in the process. I think it should be possible for people to define for themselves within the limits of their own conscience whether or not they feel a need to do anything, whether they feel able only to provide a prescription which gives the patient the means by which they can choose to end their own life, or whether they would be prepared actually to carry out an act or assist the patient in carrying out an act to end their life.

  Q1936  Chairman: I would like to ask Dr Bosshard about Switzerland and the methods that are used there. What is the general result, in the way of the process of actually dying, as a result of one of the actions taken under the Swiss law? What happens to the patient in the situation where this type of treatment is administered? How long does it take generally for the patient to die and what is the nature of the death?

  Dr Bosshard: Usually the patient has to drink a cup of 10g solution of barbiturate. Then he will be unconscious within a few minutes and he will die within the range of between 10 minutes and a few hours. In some cases it can take several hours; usually the average might be around one hour; but it is important for the patient before—and in particular for the relatives—to be aware of the fact that it can last hours. But we did not come close in one single case to where the patient actually would not have died at all.

  Q1937  Chairman: So far as this treatment is concerned, you said that for a patient who has very little in the way of physical ability left there are means by which the minimum physical action on his or her part is required.

  Dr Bosshard: Exactly.

  Q1938  Chairman: But always, at the very minimum, there is some so far as Switzerland is concerned.

  Dr Bosshard: Yes.

  Q1939  Lord Joffe: Dr Dacombe, if a patient says that he or she does not want palliative care, they have made up their mind that they have had enough and want to die, would you see that as a bar to them being given the option to ask for assistance to die?

  Dr Dacombe: You are talking about a patient actually turning down, if you like, palliative care.

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