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

Examination of Witnesses (Questions 520 - 524)



  Q520  Lord McColl of Dulwich: Can I take up that theme because in fact I did tell that story here in the Committee to a Professor of Ethics at Kings College. You are absolutely right. A man had advanced cancer and it involved his bones which mobilised his calcium so his calcium rose to dangerous levels in his blood. Of course, if you take the right tablets you can keep the calcium level down to a safe level. He came into the hospice, he asked for euthanasia and was told they did not do that. After a few days he kept on asking and the doctor suddenly said, "Wait a minute, those tablets you are having, they are keeping your calcium down. If you stop the tablets you will be dead tomorrow. So it's very easy; just don't take them." He never stopped taking the tablets. When I told the Professor of Ethics at Kings—who was sitting where you are now sitting—he dismissed it as just an anecdote. It is not an anecdote; anecdote means something that is unpublished and this has been published and there are many places where it has been published, it is well known. However, could I go back to the business of this Bill? There is a phrase "hard cases make poor law". Of course there are occasions when you feel that somebody might benefit from euthanasia, possibly just occasionally, but to pass a law to make that possible, hard cases make poor law. I came here as a professor of surgery 15 years ago; I am not a politician but I have seen some pretty poor laws. They come in, they are passed rapidly then they have to be revised and revised again and so it goes on. I think the problem with this Bill is, as you rightly said, you are standing on a cliff edge and not a slippery slope. The law is a great dam, it keeps back the wildest successes of the wild men but it also holds back that huge potential for evil inherent in us all and once you pass a law that allows killing that will continue as indeed it did in Europe. I agree entirely with what you say and thank you very much for saying it. Would you agree with that analysis of this Bill?

  Ms Campbell: I think I might. I just want you all to know how wounding and hurtful it is every time I hear or see in the papers pictures of somebody that looks just like me. In fact only two weeks ago in the Observer there was a picture of a person and tubes were coming out in all directions and the big headline was, "You would want to be dead rather than like this". In fact, that was me last year; that was me the year before; that is me at night. It is incredibly disempowering and I want to empower people like me and people who are in the last stages of their lives. Actually, that part of life is just as important as birth. Ten years ago my husband died of AIDS; he was a haemophiliac who was sadly infected by the Factor 8 cock-up. He was obviously dying in the last year and we had some very, very sad and down moments, but that last year of his life I will remember with great love and attachment because we did all that we could to make that last year the best one. Yes, he was there with tubes, he was there with all sorts of horrible things but because I had the wherewithal to know what kind of independent living support that I could bring into the house he died at home, he lived at home and nobody ever got uppity about his tubes. That made it worthwhile and I think that is what we should be concentrating on, not on all this dying business.

  Q521  Lord Joffe: Coming to the position which you say about empowerment, you have great courage and strength and can somehow miraculously cope with the thought of being in a bed with tubes coming out at all angles from you. However, there are some people who do not have that courage and do you not think in your opposition disabled people are being deprived of a choice and that far from you empowering them by your approach you are actually deciding what is right for them?

  Ms Campbell: No, I do not because the people I talk with who are expressing exactly those kinds of fears are the people who have never been near a tube in their lives and have not got to that stage of experiencing and, believe me, experiencing is everything. The experience of having a few tubes and being assisted 24 hours a day, being taken to the loo and all those things that we all say we could not bear is nothing in comparison to the pain of losing my husband. Nothing. So I just think that we have got it wrong; we are placing such an emphasis on how intolerable these situations are. There are many disabled people who, as you know, are talking about this being right and they want this legislation. I do not deny them that but in my own experience of talking to people who are in those kinds of intolerable situations I would say 99 per cent would say to me that experiencing is everything and their experiences are not what I read in the paper.

  Q522  Lord Joffe: Why do you think it is then that in the surveys that have been taken the majority of disabled people support this Bill: the British Attitudes Survey, the survey by at Oxford University, a survey which has just been undertaken by YouGov which will be distributed which shows that of a baseline of 2000 people and of the disabled people who were part of that group 79 per cent would support the Bill. There is not a survey that I have come across—including one which the Commission itself undertook—which shows that disabled people (as opposed to disabled movements) actually oppose this Bill.

  Ms Campbell: If I say to you that every survey that has been undertaken by organisations that are not run or controlled by disabled people have very different outcomes to those that are, that might give you an idea of what I think about statistics. I was in intensive care at the time, but what about the public debate?

  Ms Sayce: Yes, I think that first of all one obviously has to look at how questions were asked and options people were given and so on; we do not have time to go through all the details of that. One thing that is notable about some of the evidence that we see is that when you ask people who are young, relatively fit—even if they might be classified as disabled under the DDA, they might have had a slight mental health difficulty or might have a bit of diabetes or something—their attitudes may still be more similar to the non-disabled public and I think you have to disaggregate in some respects because what the evidence does clearly show is that when you are young and you are not disabled you may think you would rather be dead if you could not play sport, but at least you would rather be dead than using a wheelchair. Once you are using a wheelchair you adapt to that but you think you could not be able to cope with life if you had a condition whereby, in addition to using a wheelchair, you had difficulty breathing and needed a ventilator. Do you know what I mean? People do adapt to each stage and this explains the apparent discrepancy with the figures in the survey. I think it is something like 90 per cent of people with quadriplegia say they are glad to be alive whereas only five per cent of the doctors treating them imagine they would be glad to be alive if they were in their position. There are all these kinds of differences of perspective depending where you sit. There is also the interesting question of how questions are asked and what people think they are answering. We had a debate with very, very powerful speakers on both sides of the debate and a mixed audience of disabled people and other interested parties. At the beginning there were fairly evenly divided views in terms of should there be legalisation of assisted suicide. This was a much more deliberative approach to how you gather public opinion. Opinion did shift in favour of the position that this was too dangerous at the moment. There were a lot of things people had not thought of or fully considered. It is the same as polling public opinion on things like capital punishment. When you do a citizen's jury you expose people to the arguments on all sides and there is often a shift in view. This is complex territory but I do not think we can take too much from polls of the wider public's views or even only of the position of disabled people in general. I think the people whose views really matter are those people who are in the sorts of positions who are facing these kinds of difficult decisions about possible death, about very significant and long-term impairment. We need to know what they think. Personally I have not seen research which has really given the answers on that.

  Ms Campbell: I bet you, if you came to our 60 CILs around the country—where they have had the opportunity to really think about this and have a good informed debate with others, people like me—you would not get that outcome. I think a lot of it is about informed debate, it is about self-awareness, it is about empowerment. When I met other disabled people in the Disabled People's Movement I was so turned around in my own self image it was almost phenomenal. That was getting to understand the social level. I believe that that is the same here and that is why we need far more debates and far more awareness about the possibility of living with very complex and severe impairments in this world before we go down this road.

  Q523  Lord Carlile of Berriew: Those who have drafted this Bill place a high degree of responsibility in the hands of the medical profession. I have a two-part question about that. First, do you feel that the group of people about whom we are talking in this Bill, at that terminal stage of their life about which we are talking, are sufficiently autonomous vis-a"-vis their doctors to be able to exercise true autonomy? Secondly, do you have any comments to make about the robustness or effectiveness of the ethical disciplinary procedures applied by the medical profession in this country to prevent inappropriate deaths?

  Ms Campbell: The answer to your first question is no, I don't. I have plenty of experience and anecdotes to give you that would substantiate that. Secondly, when I went back to the hospital that, quite frankly, tried to kill me and tried to take disciplinary procedure against the two consultants, they closed ranks. It is almost impossible to bring doctors to book around their behaviour or their clinical judgment. You have to be extremely energetic and extraordinarily clever. I remember being in the room with the Chair of the Trust and the lawyer and they were phasing me with all these legal terms. I am pretty clever and it completely did my head in and I thought no, there are some things you can pass on, Jane, and I passed.

  Ms Sayce: We have certainly done consultations and research and looked at research as well on disabled people's experience of health services generally and it is clear that many people have absolutely excellent relationships with their doctors and other health professionals but clearly not in all cases. As I think doctors themselves at the BMA recently said, doctors have some of the same prejudices as the rest of the population and therefore disabled people do experience prejudiced attitudes from the medical profession and that makes disabled people nervous and aware of how the odds are stacked in the negotiations and the discussions, if you like.

  Ms Campbell: I think it would be right to say that that is why we are conducting a formal investigation into the primary care services experienced by people with mental health and learning difficulties. I think that probably answers your question. There are three really good doctors in this country—two of them are in this room—and that is not a lot, is it?

  Q524  Baroness Thomas of Walliswood: We have heard some moving and impressive evidence. I would like to approach this from a slightly different point of view. We have heard a lot of evidence in previous sessions about how rare it is for people who are approaching death and in particular if they are getting good treatment to ask for suicide. It is not a common thing that happens in people's experience. However, what interests me is that people are, in fact, allowed to commit suicide; it is not an offence, it is not a crime to commit suicide. If, as a clinician, you do come across that rare person who does quite clearly wish—not because he or she has been pressurised or for any of these reasons—to commit suicide, is it right that the doctor should be pressurised by the fear of 14 years' imprisonment if he assists in that suicide? That actually is what this Bill is about; it is about the penalties and proper behaviour of doctors just as much as it is about anything else. It is written in fact in terms rather similar to the Abortion Bill.

  Ms Sayce: I think that firstly there has obviously been a lot of discussion in the past in relation to these issues about so-called double-effect although I understand that the evidence for double-effect has been questioned more recently. I think the first point is clearly where doctors prescribe medication that is primarily for pain relief, if it did have the effect of shortening life that doctors would not be held to blame in any way for that. That would be the first point. I think though that it is very interesting that the major medical bodies have not come out making the point that you are raising. There is clearly a very large number of doctors who would not want to participate in assisted suicide and therefore the representative bodies of the medical profession have raised some very significant concerns about assisted suicide so rather than wanting to be able to do this in order to meet the requests of patients, doctors are actually rather more anxious that they will not have to do this and that it will not be left—as I think Tara was saying—with patients shopping around to find one of the minority of doctors who are prepared to do this. In terms of whether doctors should be placed in that position, I suppose that what I am arguing is that the majority view of the medical profession is that the medical profession does not want to be in the position of administering death and therefore I think that what doctors are in the business of doing is alleviating suffering, providing treatment and that is what they can continue to do if the law stays as it is.

  Ms Campbell: Can I also say something about committing suicide because although people can take their own lives without being in fear of legal redress, we would do, as a society, everything that we could to stop a person committing suicide, including grabbing them if they are about to jump off the bridge. I want the same for disabled people; I want the same for people at the end time of their life or in the time of their life where they are at that particular stage where they would want to take their life. I would want you all, if I said to you that I want to end my life now, to stop me one hundred per cent and I do not think we feel that way about people in that state.

  Baroness Thomas of Walliswood: I think there was a rather wide discussion as to whether or not those who attempt suicide actually want to commit suicide. I think in some cases they definitely do and they get extremely angry if they are resuscitated in hospital. We are going a long way beyond the remit of this discussion so I will stop it there.

  Chairman: Thank you very much indeed for coming along to help us with your evidence. We greatly appreciate your attendance.

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