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


Examination of Witnesses (Questions 525 - 539)

THURSDAY 2 DECEMBER 2004

DR TOM SHAKESPEARE and MS ALISON DAVIS

  Q525  Chairman: Welcome to you both. I think you have agreed to share this session together. As before, we would invite you to make opening statements and then the Committee will have the opportunity to ask you questions. Dr Shakespeare?

  Dr Shakespeare: Thank you. I will be very brief. I do not think this Bill is a threat to disabled people. I think that the Bill is—as I have read it and understand it—carefully limited to people at the end stage of terminal illness which by no means is equivalent to being a disabled person. There are 10 million disabled people in Britain, a very small proportion of them are in that state. Terminal illness people could be seen to be disabled but disabled people are not necessarily terminally ill. I think Jane's evidence and the evidence for the DRC generally is very moving and it is absolutely true that disabled people face discrimination in many areas of life and we should combat that in any way possible. However, I do not think that evidence or that testimony is relevant to this Bill. As I say, this Bill is about people in terminal states. As I understand it, statistics from The Netherlands say that 80 per cent of people who request assisted suicide have cancer and many others have motor neurone disease and other terminal conditions. I think that it is true that disabled people are very concerned and I think there has been a measure of scaremongering and misperception about the Bill and about the issue in general. I think that is unfortunate and I think this Committee and other discussions of the Bill need to be very clear that it is not an attack on disabled people and disabled people would not be vulnerable if it were to be passed. My second point is that the Disability Movement supports autonomy. It supports the rights of disabled people to control and define their lives in every area: where to live, how to be treated, how to be supported and care for. That is absolutely essential to the disabled people's movements. Rights not charity; the right to have control over your life. Nothing about us without us. It seems to me inconsistent that the disability community would support autonomy in every other area of life but not the area of choosing when life becomes intolerable to end it. It does not seem to me to be consistent. I completely agree with all those people who have said that if autonomy is infringed, do not attempt to resuscitate is placed on people's notes without discussion, against resuscitation council guidelines or if people are coerced into it or anything like that, that is quite clearly wrong. I assume this Committee, the Bill and all right-minded people would agree with that. However, this Bill is about the autonomy, the autonomous choices of people towards the end of life. I think there is an inconsistency in the evidence we have just heard. If the people are so vulnerable, if the DRC is right, then logically they should oppose withdrawal of care, but they do not. From a philosophical sense there is no difference between acts and omissions except that to die of starvation and thirst is a far worse death than to have a terminal dose of barbiturates. It is wrong that a disabled person who is dependent on technology can ask for it to be withdrawn and hence die, but the disabled person who is not dependent on technology but is at the end of life and is suffering unbearably cannot do that. It seems to me inconsistent and against this fundamental principle of autonomy. My third point—and it has been made already—is that disabled people do support assisted dying in large numbers. It has already been pointed out that the DRC's own survey found 60 per cent of respondents supported a change in the law. Lord Joffe has referred to the recent YouGov poll in which 80 per cent supported the proposals in the Assisted Dying Bill and it was explained what those were. Only a small proportion would trust doctors less if the Bill became law; most people—76 per cent—would trust their doctors the same amount. In terms of the impact on society's view of disabled people, 47 per cent thought it would have no impact at all. It seems to me that these are careful testimonies. It is true that there is fear amongst disabled people and it is true that the disability community is divided, but I would not want you to take away the view from having heard the people we have heard already—whom I respect mightily—that they represent all disabled people. At best they represent half of them; at worse they represent a minority of them. It is true that most organisations of disabled people who have expressed an opinion are against, but that might mean that they are either wiser or less representative than their constituencies, I am not sure about that. I think it is a very difficult issue and I think introducing assisted suicide needs safeguards. I entered this debate agnostic; I am not a member of the Voluntary Euthanasia Society or any other pro-assisted suicide group, but having read the evidence and read a range of submissions to this Committee and having looked at the Bill, it seems to me that it is a much more tightly-worked proposal than pertains in Oregon or in The Netherlands. It combines the degree about prognosis, the six months left in Oregon; it combines the issue about unbearable suffering of The Netherlands. That seems to me to be a double safeguard. I do not think it is a slippery slope. If you look at the evidence from Oregon and The Netherlands there is not a huge rush to die, in fact fewer people are now dying. It seems to me that many people open up the conversation, fewer people put forward a request and even fewer people take the final step. In our organisation—which is part of a university research institute—we held a public meeting about whether medicine should give you a good death. We had a speaker, a philosopher, my colleague Dr Simon Woods (who has been a cancer nurse and has written on end of life) and anybody could have come. A lot of people did come—nearly a hundred people—predominantly older people. I would assume that the vast majority were not disabled but they were predominantly older people and almost unanimously when I asked them to vote at the end of the discussion (which was vigorous) they all said that they wished this to be a legal right. That is not to say that people would take advantage of it, but knowing it is there is something which reduces anxiety. Fear of death, of course, is amongst the most debilitating things. Of course I agree that palliative care should be available much more widely than it is. I honestly do not think that a considerable number of people would opt for assisted suicide but I think that at this stage of the development of the argument should be enabling that tiny minority for whom it is important to have that right. The one concern that I have noticed in the Bill as it stands is about consent. The question of consent is absolutely vital. I think that people who might be depressed—not depressed to the extent of not being competent, but depressed—should also be referred to a psychologist or a psychiatrist. I am referring to Section 8, clause 1 so they are referred to a psychologist or a psychiatrist if they are not competent, but I think they should also be referred if there is evidence of depression such that it does not reduce their capacity but does affect their state of mind. Section 2 seems to be a broader consideration. That is the only thing that I have noticed that I am unhappy about in the Bill as it stands. I would say that many disabled people would agree with the stance I am taking.

  Ms Davis: I have two hats on. I am speaking as an individual today but I do co-ordinate a group for disabled people called No Less Human which is for disabled and terminally ill people, their families and carers. I have spina bifida and hydrocephalus, osteoporosis and emphysema. Nineteen years ago I wanted to die. I have severe spinal pain which is not well-controlled even with morphine. You will excuse me if I am a bit hesitant but I just took morphine 10 minutes ago so I am not quite as altogether as I might be. I have severe pain which cannot be well controlled. When it is at its worse I cannot move, I cannot think, I cannot speak and it can go on for hours; there is no prospect of it getting any better, in fact it is almost certain to get worse. Due to that and a combination of other factors, 19 years ago I decided I wanted to die. It was a settled wish; it lasted 10 years. In the first five of those years I tried to commit suicide several times. They were serious attempts, most of them, and I tried several different methods. I was saved only because my friends arrived in time. My door was never locked at that time and they came in and found I was losing consciousness and they took me to the hospital. At the hospital I was treated several times against my wishes. I told the doctors that I did not want to be treated. They asked for my permission to pump my stomach and I said no. They said, "If we don't, you will die". I remember at the time thinking in a very wry way that it was almost funny because that had been my intention; I had wanted to die. So they waited until I lost consciousness and then treated me anyway. Had the form of declaration which this Bill proposes been available at that time I would have signed it with no hesitation whatsoever because my intention was to die and I was suffering then the same pain which is unbearable—except that I have to bear it—that I am now. If the Bill had been law 19 years ago I would not be here speaking with you now. That, in a sense, would give my doctors, who at that time thought I was terminally ill, a very convenient self-fulfilling prophecy because they said I was terminally ill. Actually they were wrong and here I am 19 years later. Had my life been ended by the terms of this Bill nobody would have ever known firstly that my doctors were wrong and secondly that the future held something better for me than would have appeared to be the case 19 years ago. I was saved against my wishes. I lived on. For 10 years I wanted to die. I note that the Bill has a 14 day waiting period during which the person requesting euthanasia can change their mind. That would not have served me at all: 14 days to change my mind when I wanted to die for 10 years. I think this Bill is extremely dangerous. It sets out supposed safeguards to prevent what is called abuse of what would be the law but I believe that the law itself would be an abuse of sick and disabled people. I sat in at the earlier session and I heard the discussion about people who wanted to commit suicide but cannot and need assistance. By describing safeguards to the Bill in effect we are saying that the sort of people that are specified are right to want to die and should be helped to die, whereas people who are not specified who may well be equally desperate to die and possibly for much the same reason would be considered wrong to want to die and would be helped to live. I think that sends out a very negative message to people like me who suffer on a daily basis and who need help and support to live with dignity. We hear so much about dying with dignity that it almost becomes a slogan or a catchphrase and it suggests that people like me are only dignified when we are dead. I do not agree with everything that the Disability Rights Commission said, but I think they were right when they said that what we need is the right to live with dignity until we die naturally and that will not happen if this Bill becomes law.

  Q526  Baroness Finlay of Llandaff: Could I ask you, Dr Shakespeare, whether you feel that the prejudice that we have already heard about amongst clinicians does exist or does not exist?

  Dr Shakespeare: I think it is undoubtedly true that many disabled people have had negative experiences of clinicians but I think it is exaggerated. I think the vast majority of disabled people have good experience of clinicians. I do not think that clinicians or anybody else are queuing up to kill disabled people. I think the evidence is, for example in cases of advanced directives, that where a person has expressed a desire for withdrawal treatment in such and such a situation, it is usually the relatives who beg the doctors not to fulfil the wishes of the presumably not-able-to-consent person. I think that neither doctors as a rule nor relatives are going to wish to see people dying at all and certainly not against their will. Doctors are dedicated to the preservation of life. There are a few arrogant doctors who might think that this was a good role to exercise but I think they would be a tiny minority. I think it is sad that some disability movements think of doctors as the enemy whereas for the vast majority of disabled people doctors do not always get communication right but they are basically on their side.

  Q527  Baroness Finlay of Llandaff: If we look at the way that information is communicated with patients do you feel that currently there are enough doctors with excellent communication skills to feel confident that the arrogant doctor would not be able to influence a patient who is vulnerable and, perhaps, facing a new situation to which they have not adapted?

  Dr Shakespeare: I am not sure about that. I think the doctors that are being trained now—and in Newcastle University and in other universities I have played a role in that—communications skills and the whole ethical aspect of medicine is stressed to a much higher extent to that which it was in decades gone by. There may be doctors in the older generation who are residual and arguably prejudicial physicians. I think that the vast majority of doctors are not like that and whatever generation or age I do not think that we should overly fear that. I think there are safeguards built in in terms of other public professionals being involved. Education of doctors continues to improve and it should be a priority. I would assume—and I think the BMJ and the GMC have already suggested that this would be a role that they could play—that were this to become law, doctors, nurses and others would receive training in how best to have these discussions and in the ethical and legal safeguards that have to be there. I would say that the training of doctors is absolutely essential if this were to become law.

  Q528  Baroness Finlay of Llandaff: When you were talking before, if I have understood you correctly, you felt that you should have the right to be killed by a clinician. That is what you are arguing for and I wondered how you see the figures that come from Holland where quite a number of patients are turned down in their request because their clinicians deem that they are not suffering enough. This seems to me an inequity in that the doctor is passing judgment over the patient's suffering but the patient is the only one who can describe the suffering.

  Dr Shakespeare: I would be in favour of making the regulations as tight as possible and if that meant turning down certain people then I would rather that than the fears that other people have expressed of it being so loose that others go in. The evidence as I understand it is that palliative care doctors and other professions allied to medicine have a different sort of relationship with their patients to the doctor patient relationship in other cases. It is far more of a partnership relationship than in other areas of acute medicine and so forth. Doctors have to do their professional duty and will have to think very carefully about whether the patient they are seeing comes within the terms of the Act if it were passed but given that autonomy is central to the Act I would assume that the guidance would suggest that they have to take the views of the patient regarding their pain very seriously indeed.

  Q529  Baroness Finlay of Llandaff: I just wonder then why you would think that if doctors in palliative care have a partnership arrangement—and I hope that is true—why you think that 97 per cent of the doctors working in palliative medicine as trained specialists do not want to have the ability in law to kill their patients.

  Dr Shakespeare: I have not seen that statistic; obviously I will take it as read that it is true. However, it seems to me that palliative care as I understand it is about relieving pain and giving people a good death. The fact that some people are not helped fully by palliative care is evidence that palliative care does not always work and it seems to me not surprising that palliative care doctors might be unwilling to recognise that.

  Q530  Baroness Finlay of Llandaff: I would suggest that if you looked at palliative care five years ago the techniques available then and the techniques available today are very different.

  Dr Shakespeare: I have to bow to your greater experience but it seems to me that not all pain is controlled, that heavy doses of drugs—as we have just heard from Ms Davis—have other side effects which are not desirable and whether palliative care works or not it may not be the way that everybody wants to go. Everybody should have a choice. For some they may wish to end it quickly and painlessly and in their own way and I think that our society should allow you to do that.

  Q531  Baroness Finlay of Llandaff: Do you feel that, at the moment, we have an adequate provision of palliative care to allow that?

  Dr Shakespeare: No, I do not. I have already said that I think that should be extended but I think the fact that we live in a real world—a difficult world where not everybody gets what they need in all sorts of ways—is not a strong argument against allowing this. I do not see widespread abuse and I do not see why palliative care cannot go hand in hand with this. I think the evidence from Oregon is that palliative care has actually improved since the introduction of this measure. It seems to me that a very, very tiny proportion of people will opt for assisted suicide therefore the need for palliative care will continue to be huge and a major priority with the ageing population. Nothing will change that so I think we could hopefully have both.

  Q532  Lord Turnberg: I do not know whether you heard the evidence from the previous witnesses but they were obviously somewhat different in their attitudes to the one you describe. A couple of their arguments were that if the Bill went ahead it would divert attention away from the need for more resources for handicapped people and palliative care services. The other argument—and perhaps more significant—was that they suggested that there was a subtle sense of coercion—and a not so subtle sense of coercion some felt—the people that feel this particulary are those who are the most severely ill or near to death. It seems to me that there may be differences in the community which includes handicapped people in the range of handicaps and the severity with which it approaches the terminal phase and that the fitter you are—that is certainly true in a society where people are not handicapped—the thought of having this facility available at the end of your life is very attractive, but the nearer you are to it the less you are keen on it. Do you think that is a reasonable assumption?

  Dr Shakespeare: I do not have evidence to sustain that. I think probably—and this is a hypothesis—that people in society who are most keen on this measure are older people, people who are in their seventh and eighth decade who have had a very vigorous life and who have had control and choice in all areas of their life and really want it at the end of life. I do not think it is just young men who go out partying every night who think it would be dreadful to be disabled. I do not think it is about that. We are not talking about people who cannot walk or people who are dependent on technology, we are talking about people who are at the end stage and who are in unbearable suffering. The folks that I spoke to and the older folks who came to our public meeting cannot see why they should not have the right to request this. They feel very angry that others are seeking to deny it. This subtle sense of coercion, I do not think disabled people are dupes; I do not think that most citizens in this country are dupes; I do not think they are going to be trotted off to die against their will. I cannot see that happening. Jane, whom I respect highly, is somebody with a hugely severe impairment but she is no dupe. She is the feistiest, strongest person you have probably seen in weeks. Are we really to believe that folks are going to be so vulnerable? I have friends with HIV AIDS again who have felt that this was a right that they wished to have at a certain time. Only a couple of them committed suicide, they obviously were not assisted to die. I think for many people at different stages of life it seems that they would wish to have the potential to choose it even if they do not ever choose it in practice.

  Q533  Baroness Hayman: I wonder if I could ask Ms Davis something about the very powerful story that she told us about her own experience and the experience people have of changing their mind and having different attitudes at different phases. Obviously one understands that that is true and it is possible that some people, if they had not ended their lives, would have survived that particular point of despair and gone on and had a very productive future time. However, I do have difficulty in understanding why that risk would be significantly different for assisted dying than it would be for suicide itself (which could have been successful) or for refusal of treatment (which I understand you tried to implement and were denied) which again is something that the patient does have a right to refuse. I do not quite see in my own mind why it is a particularly potent argument in relation to this Bill rather than in relation to our laws of suicide in general or indeed our laws allowing people to have to consent to treatment.

  Ms Davis: I think it is particularly important to this Bill because had voluntary euthanasia been legal when I wanted to die I would have qualified under the terms. If it had required signing a form, a declaration, I would have signed it. If it had required writing an advance decision or living will—whatever you choose to call it—I would have signed it. I would have qualified, I would have asked for it and I would not be here now and I think that is what makes my story particularly relevant to this Bill. I think it also has relevance to withdrawing and withholding treatment and the whole issue of the Mental Capacity Bill because clearly I was mentally incapacitated once I lost consciousness. I would have signed an advance decision and treatment would not have been instituted. It has relevance to both, I think.

  Q534  Baroness Hayman: Without being impertinent—it sounds as if it is impertinent—had your autonomous request not to have treatment been respected then you would not be here and able to give us such powerful evidence today. That is the law at the moment. Indeed, if you had made an advance directive that equally would have been potent in those circumstances. I am just trying to explore whether this is different from those circumstances, whilst quite accepting your argument that people's emotions and feelings in this area may be transitory.

  Ms Davis: I think there is perhaps not an adequate understanding of the concept of autonomy because many people believe it simply means that you make your own decisions, self-determination. However the concept of autonomy actually means that you should act in your own best interests and best interest as traditionally understood means such things as preserving life, maintaining health, restoring health, minimising suffering and I think those are the sort of things over which we have autonomy. What I do not think we have autonomy over is the choice to give up the right to life because the right to life is an inalienable right which I may not be deprived of even though I it give up voluntarily. For instance, the Human Rights Act states that everyone's right to life shall be protected by law. No-one shall be deprived of their life intentionally except—although it does not apply in this country—as due punishment for a particular crime. We have in our own laws the understanding that the right to life is a primary right; any other right is meaningless without the right to life. There is no point in having any other right if you do not have the right to life itself and I think the question of autonomy is that we need to act responsibly in our own best interests and our own best interests include protecting the right to life. Obviously I am not saying that people should be forced to undergo futile disproportionately burdensome treatment; that is not what I am saying. What I am saying is that just as we cannot voluntarily sell ourselves into slavery because it would impact on other people, so we cannot voluntarily ask somebody else to kill us because it would impact on ourselves, because it would be denying our own right to life. Secondly, it would impact on other people and it would certainly have made a big difference to my life because I would not be here now.

  Q535  Bishop of St Albans: I would like to ask Dr Shakespeare whether there is any medical situation in which you could imagine that there are no limits at all to the exercise of personal autonomy.

  Dr Shakespeare: No, I cannot.

  Q536  Bishop of St Albans: So the exercise of personal autonomy is absolute.

  Dr Shakespeare: Sorry, I answered with the opposite. I do not think it is absolute; I am sure that there are areas in medicine.

  Q537  Bishop of St Albans: Could you begin to enumerate what they are? You seem to be hinting, for example, that the exercise of personal autonomy when a person felt depressed was an area in which you would feel intervention was necessary.

  Dr Shakespeare: I do not think that capacity is a general universal thing. I think capacity exists in regard to particular acts and particular desires. For example, we all agree that children—even at quite a young age—have capacity; they do not have capacity for everything, they have a limited amount of capacity. The context and your status and the particular thing for which you are requesting support all determine the judgment of capacity. It seems to me that in the case of depression I could see why somebody might feel that their life had no meaning and was best ended, but I would not support them in that because I think that their judgment would be contaminated by the nature of the condition they were experiencing.

  Q538  Bishop of St Albans: But if they are exercising personal autonomy—which is the highest moral good—even though apparently depressed (by whose definition of depressed, one asks?) why do you wish to deprive them of that right?

  Dr Shakespeare: Because I do not think they would be making a free and good decision in that context. They may be, but I think there is a risk that they will not and I certainly did not say that the value of autonomy was the highest value. I think it is a very important value and it is one that should not be restricted without good cause.

  Q539  Bishop of St Albans: Could you say what the other values would be that you think might impact on that exercise?

  Dr Shakespeare: Conventionally in medical ethics the issues of beneficence and nonmaleficence and justice would be seen to be ones which have to be taken into account alongside autonomy. For example, I have strongly advocated the autonomy of a small number of people to request and to be granted assisted suicide, if I thought that there was evidence that that autonomy would be at the cost of the autonomy of others who would be killed against their will then I would not be here.


 
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