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

Examination of Witnesses (Questions 1810 - 1819)



  Q1810  Chairman: Thank you very much for coming. Our usual method is to invite you to give a short oral presentation, either separately or together, as you feel inclined. Then I will invite members of the Committee to ask questions on which they feel that you may be able to help them. The help you give us is taken down by the shorthand-writers. You will have an opportunity of seeing whether the record they make is in accordance with what you thought you said in due course. Then the transcript of the evidence as approved will be appended to our report and will become public property. We expect it to be public property when our report is delivered, which of course will be as soon as we finish these deliberations. Would you like to make a start?

  Ms Stinson: First of all, thank you very much for inviting the British Humanist Association to give evidence today. If I can introduce myself, my name is Hanne Stinson, I am the Executive Director of the British Humanist Association. I took up that post three years ago. Before that, I worked for a very long time with the British Red Cross, which I am just mentioning because for much of that time my remit included equality and diversity and I was also responsible for developing and delivering an education programme on international humanitarian law and human rights. The first bit of thatinternational humanitarian law I am sure is not relevant, but the human rights may be. I am not a lawyer though. I might add that I am also a member of the steering group that is currently advising the Government on the Commission for Equality and Human Rights, so again I think that demonstrates a commitment to both equality and human rights. My two colleagues, Professor Simon Blackburn and Philip Havers QC, will introduce themselves in a moment and they would both like to make a short opening statement as well. I should start perhaps by saying something about Humanism. In very simple terms, Humanism is the belief that we can lead good lives in both senses of the word good in the sense of ethical but also good in the sense of positive, happy, worthwhile lives, without religious or superstitious beliefs. Humanists are not religious. They do not believe in God, they do not believe in any kind of after-life, but they are generally not anti-religious, and I think that is important to state. Humanists believe that our moral values are based on our humanity and our experience and understanding of people and of the world. Our decisions are based on assessment of the evidence and consideration of the outcome of our actions and we believe in working with others to find solutions to problems. Since we believe that people and the world around us are all we have got, humanists tend to be very strongly committed to human rights, human dignity and equality those sorts of areas. The British Humanist Association very strongly supports this Bill. This view is consistent with the 2004 NOP poll which found that 95 per cent of the non-religious supported a change in the law and 82 per cent of the population as a whole are also in favour, and that includes 81 per cent of Roman Catholics and Protestants. Not all our policies have quite such widespread support. The opinion polls give us a picture of what the public thinks but we should also look at informed public debate, and these suggest similar conclusions. For example, the Liberal Democrat Conference in 2004 and the Townswomen's Guild annual meeting in 1997 both voted in favour of changing the law after considering detailed background papers and lengthy debates. A citizens' jury organised for Age Concern's Debate of the Age in 1999 also considered end-of-life issues, and the majority of the participants favoured a change in the law while a small minority was strongly opposed. I would like to outline some of the reasons why we support the Bill. The first reason is individual autonomy. I see this as a core human value, a human right. We should all be allowed to make decisions about our own lives unless those decisions are harmful to others. That is a basic principle of humanism but it is also shared by many others regardless of their religious or non-religious beliefs. It is also a key part of medical ethics, with treatment depending on the patient's informed consent. Indeed, patients can refuse treatment even if that decision will hasten the patient's death and regardless of whether the doctor considers this to be a rational decision. A generation ago medical practice was much more paternalistic than it is now, with most patients happy for their doctors to take decisions on their behalf. That has changed a great deal and there is every indication that this trend is continuing. Patient autonomy is growing all the time. Doctors are far more willing to inform patients of their choices and allow them to make decisions. I am certainly not willing to allow doctors to take decisions on my behalf without my input, and I know I am not alone. Secondly, the current situation is discriminatory and unfair. A patient can have life-saving treatment withdrawn without having given any indication that this is what they want, for example in cases of PVS. We also know that doctors end patients' lives by administering pain relief which they know may kill the patient (the principle of double effect), and they may do this without the patient's consent. A patient can choose not to be treated or to have their treatment withdrawn without any particular scrutiny of their decision provided they are deemed to be competent. A patient can end their own life, regardless of whether they are terminally ill at the time, provided they are physically capable of doing so. But a patient who is not physically capable of ending their own life cannot legally be assisted to die, in spite of having made a rational decision that their pain and suffering is unbearable and that they wish their life to end. This unfairness is illustrated by the Ms B and the Dianne Pretty cases. Ms B could hasten her death by refusing the treatment which was keeping her alive but Dianne could not hasten her death because she needed a different kind of help. A significant number of patients like Dianne Pretty are forced to suffer unbearably and many people, including myself, see this as unfair and discriminatory. Philip Havers will be looking at the legal aspects of these situations in a moment. There are historic precedents to the situation we have. Certain religious beliefs used to, and in some cases still do, forbid vaccination, contraception, abortion, and blood transfusions, but society has legalised them all while at the same time respecting and protecting the wishes of those who do not want to use them. I respect absolutely the right of any individual to rule out decisions to end their life, but I also reject absolutely the right of people with particular religious beliefs to impose those beliefs on people who do not share them. Thirdly, we know that assisted dying takes place. Compassionate doctors and others assist people to die because they think it is the right thing to do. Because it is unlawful, we have no idea how often it is done and it is totally unregulated, unless someone is prosecuted. Strictly regulated assisted dying in carefully defined circumstances has to be preferable. Finally, in the current situation, those who assist a patient to die, whether a doctor or a relative, risk a long prison sentence. It is striking that the NOP poll found that 51 per cent of people would want a doctor or relative or friend to break the law to help them if they were terminally ill and suffering unbearably. It is even more striking that 55 per cent said that they would break the law to help a loved one. I would like to ask you whether you think it is acceptable that society puts anyone in the situation of having to make a choice like that, because certainly I do not. That concludes my remarks and I would like to pass on to Professor Simon Blackburn.

  Professor Blackburn: My name is Simon Blackburn. I am the Professor of Philosophy at the University of Cambridge and I am a Fellow of the British Academy. I have written and lectured extensively on moral philosophy and other branches of philosophy, and that includes giving the Gifford lectures at the University of Glasgow. I am also Vice-President of the British Humanist Association and I appear at their invitation. I should like to start by saying how I understand my brief as a philosopher and as a humanist. My brief is far from opposing the moral precepts associated with any particular religious tradition. Many religious traditions incorporate profound thought about human life and its conduct and it is foolish not to learn from them. What we humanists claim is that we are not passive recipients of inherited teachings but must actively use our own experience, feelings and critical reason in assessing what they offer us. In saying this, we are of course saying no more than many people working within religious traditions who also have recognised the changeability and the changing interpretations that new experience demands of them. Where we differ is that we feel able to open our minds to embrace the wider human experience, including that of other cultures and other philosophies and that of our common law tradition. As a result, I expect that most of what I offer will be uncontroversial or familiar to you, and I hope that it is, but I believe we are dealing with an issue where our thinking may easily be taken over by uncertain meanings and entrenched but mistaken emotions and inferences. In this presentation, I should like to confine myself to some remarks about three examples. Two arise from my knowledge as a philosopher; the third is a piece of fire-fighting arising from what I have heard about this discussion. The first is the compassion and the sanctity of life. We all applaud this, and rightly so, but I believe it is much less clear how they bear on the discussion than many think. One quick, opening remark is that, centrally, opposition to this Bill is based not so much upon the sanctity of life, cannot be based upon the sanctity of life, but the sanctity of dying; in other words, the essential inviolability of the process of dying in whatever way nature and accident have determined, however long, degrading, undignified and intolerable. In Professor Hart's case, and I believe it is actually a constructed case, of the burning lorry-driver, one would not defend refusal to offer a painless death on the grounds of the value of life. You could only defend the refusal of, in that case, the policeman to act because of the sanctity of a process, because you believe that nature must be left to take its course. In England, simple suicide or the request to discontinue treatments were once deemed inconsistent with the sanctity of life on just those grounds. Now, they are not so in law and I do not hear of campaigns to repeal that, although some of the absolutist positions which you heard this morning might indeed wish that were so. It can be argued, and indeed has been argued by Professor Ronald Dworkin, that the sanctity of life is actually honoured when we give due weight to human suffering, human dignity and human self-determination, including what Onora O'Neill called principled autonomy, as Professor Gill reminded you. Indeed, in the much older, moral tradition of the Stoics, it was a crowning glory of human life, a source of liberty and dignity and an insurance against oppression by man or nature that we have the option of putting an end to misery and pain. On this view, it is proponents of the Bill who have the proper respect for human life. I do not want to insist upon that. The point remains that few, if any, philosophers would say that a simple, unqualified, three-word principle, sanctity of life, can by itself silence those other considerations and I notice that, in law, many recent cases, especially those of Bland and Burke, are ones in which eminent legal authorities have taken the same view. There is a quite abstract but important point here, I believe, about very simple principles. Often their force derives from restricting attention to central or normal cases where that force can get an inertia of its own and can go on to inspire reactions to cases that are not central and not normal. A prohibition can gain a sort of symbolic horror which carries over to cases where its rationale is actually absent. To illustrate what I mean, perhaps I may remind your Lordships of the well-known mountaineering example of the film, "Touching the Void" and the difficulty people had in coming to terms with the idea that the forbidden action of cutting the rope was, in fact, the rational, compassionate and ultimately the successful and appropriate thing to do. It does not matter if you do not know about the example. I can return to it. Lord Joffe's Bill concerns only the extreme and fortunately atypical case of competent adults suffering unbearably as the result of terminal illness. Applied to such emergency cases, as we might call them, simple, moral reactions nurtured on a diet of more ordinary cases may be extremely unreliable. My final point on the sanctity of life is also a short one. The issue attracts a certain rhetoric. We should not play God with life and death, we must be patient before providence, we must put up with our allotted suffering, soldier on, take what fate has in store for us. Such thoughts have a historical pedigree, although many philosophers believe that they met their Waterloo 250 years ago in the famous essay on suicide by David Hume. In the present context, we must remember only that people still impressed by such ideas may indeed choose not to exercise the liberties this Bill would give them, but it is no part of our political or legal culture to enable them to force those views on others. If it were, we would be imprisoned by fatalism, unable to ameliorate our lives in countless ways. We would not have inoculations or anaesthetics nor, for that matter, houses or umbrellas. My second topic is the omissions/commissions doctrine, the division between failing to attempt resuscitation or other intervention and actually intervening to assist the process of dying. Some much respected philosophers have denied that this distinction carries any moral weight at all, and to my great surprise the view was heard from witnesses from the faith community this morning. I disagree. I think that division is serviceable enough in some cases and there can be pragmatic reasons for using it. Again, however this is not always true. Its moral significance can lapse and it lapses in cases where we do something by doing nothing, although the description then becomes moot and may appear paradoxically. Philosophers are familiar with the concept of levels of action in which you do something by acting, or equally do something by refusing, refraining or failing to do anything. You can betray someone by saying nothing, you can condemn the lorry-driver to burn to death by standing aside, and sometimes it is happenstance whether it requires an act or an omission to bring about a result. When that is so there may be no moral difference between exploiting the happenstance and doing nothing or instead doing what is needed. In October, your Lordships heard from Dr Wilkes, Chairman of the BMA Ethics Committee, answering the Earl of Arran, and from Dr Lloyd, answering Lord Taverne, that the public is mistrustful of the acts/omissions distinction in this context. I think the public shows wisdom, especially when, even if death is coming soon, doing nothing results in slow death by thirst or hunger or choking on saliva, when doing something could mean a swift and desired sleep. As has been suggested to you and will shortly be emphasised by my colleague here, it is surely discriminatory and unjust to allow deliberate omissions, as at present the law does, when a dying patient is lucky enough to be able to obtain merciful release, by people standing aside, but to forbid parallel commissions when he is not so lucky. In fact, the acts/omissions doctrine is more often used to provide a moral comfort zone for agents who believe they can shelter behind it than it is to indicate anything we are likely to wish for ourselves and those we care for. The third point, the final point, I would like to touch upon is that of autonomy and the relation between the patient and the doctor.

  Chairman: We will have to stop for a short period for a vote in the House.

  The Committee suspended from 2.53 pm to 3 pm for a division in the House.

  Q1811  Chairman: Would you like to continue?

  Professor Blackburn: If I could remind you of the first two points, one was about the sanctity of life and the other was about acts and omissions. The third and final point I would like to touch upon is that of autonomy and the relation between the patient and the doctor, and this is my fire-fighting point, as it were. This arises because I have heard this issue described as if it is a zero-sum game, a contest, in other words, either the patient gets autonomy and the doctor is downgraded to a servant of the patient's wishes or vice versa. I believe I am right, and I stand open to correction because this is not my area of expertise, that mistakes the logic of the situation. As I read it, the proposal gives a liberty to both the patient and the doctor. The patient becomes free to ask for an intervention and is largely reassured in advance that he, or she, can procure it should they wish it. They also know that in asking for such an intervention they are not asking somebody else to break the criminal law. The doctor becomes free to provide the service, or not, according to judgment and conscience, but again without fearing the very real shadow of the criminal law. A corollary of that would be the predictable increase in trust between patient and doctor, of which you may have actual evidence from other countries. What the doctor loses is only a legal fig-leaf for standing aside and doing nothing, and I can sympathise with those desiring that protection or that comfort but the point of the Bill is that this is a fig-leaf that should not be desired or afforded. The only real loser, in terms of power, is of course the criminal law, although what it loses, if that is the word, in the range of its clutches it gains in terms of clarity and strength of principle. Thank you very much for your attention.

  Mr Havers: My name is Philip Havers. I am a barrister and amongst the specialist areas in which I practise are human rights law and medical law. I have been asked by the British Humanist Association to say something about the current legal position in this area and the interrelationship between the legal principles of sanctity of life, on the one hand, and personal autonomy, on the other, as they apply now to end-of-life decision-making. I am delighted to do so because, although I am not a member of the Association, my views on this Bill coincide with theirs. I represented both Dianne Pretty and Ms B, their cases happened, curiously, to coincide in time, and the experience of doing so has led me to the very clear conclusion that the present state of the law which permitted Ms B to die is profoundly unfair, because it did not permit Dianne Pretty to do so. So where are we now? The present legal position, I think, can be summarised as follows. First, if, no matter what your state of health is, you want to die, you can do so and you can do so lawfully provided that you and you alone carry out the act which causes your death, see the Suicide Act. Secondly, if you are already dying or are close to death, you can refuse treatment which would otherwise keep you alive; this has long been the law. Thirdly, if you are not dying but you are only being kept alive artificially, you can insist that the doctors turn off the life support system with the result that you die. If physically you cannot commit suicide on your own because of your terminal illness then you can go abroad to Switzerland and get someone there to help you to die. Otherwise, you have no option but to endure the pain, the suffering and the indignity that you so desperately wished to avoid. In short, what it comes down to is this. Provided you are not too badly physically affected by your illness, you have the right to end your life when and how you choose. Even if you are but you can afford and you can find someone to help you to go abroad, you also have that right, but if your terminal illness means that you are physically unable to end your life yourself and if you can neither afford nor find the help to go abroad then you have no such right. It seems to me that this position is difficult if not impossible to justify. I have, of course, studied Lord Joffe's Bill and I have been struck by the many safeguards which it contains, not just individually but cumulatively. No other end-of-life decision-making practice or procedure, for example, the withholding or refusal of life-prolonging treatment, is underpinned by so many safeguards let alone legislative safeguards. It seems to me, for what it is worth, that those safeguards should provide a very high level of both reassurance and protection for the vulnerable. I would also like to touch briefly on the way in which the courts have been responding, under the common law and the European Convention, to what plainly they regard as people's wish now to have control over how and when they die. In the Pretty case, the European Court of Human Rights went out of its way to state that, and I quote: "The very essence of the Convention is respect for human dignity and human freedom" and to stress that the protection of that right by allowing people to choose how and when they die does not in any way negate the principle of sanctity of life. This approach is also reflected under the common law. For example, in the recent case of Burke the GMC, which was concerned with whether a patient can insist on being provided with life-prolonging treatment by his doctors, it was held that his decision as to where his best interests lie and as to what life-prolonging treatment he should or should not have is, in principle, determinative. The judge stated: "Important as the sanctity of life is, it has to take second place to personal autonomy." In the even more recent case of Re Z, the court refused to make an order prohibiting Mr and Mrs Z from going abroad to Switzerland so that she could obtain help to die, because to do so would interfere with her right of personal autonomy. "It seems to me" said the judge "that, within the context of a person of full capacity, whilst the right to life is engaged it does not assume primacy over the rights of autonomy and self-determination." I believe that the Bill would bring an end to the unfairness, and indeed discrimination, experienced by Dianne Pretty and others like her whilst protecting those who may be vulnerable. Thank you.

  Chairman: Thank you.

  Q1812  Lord Turnberg: Thank you very much for the presentations, which I found very interesting. You have obviously thought very deeply in the British Humanist Association about the issues and come to some very clear conclusions. I just want to press you a little about the certainty which you have in this area and whether you think really there is no downside to the passing of this Bill. It is an area which of course excites all sorts of controversy and people have different views from yourselves, as you are aware. For us, it would be helpful, for me anyway, if you could tell us something about the possibility that some of it may not be absolutely clear-cut. I am particularly interested in the issue of autonomy, personal autonomy and principled autonomy, and the business about whether autonomy is absolute when what you do has an influence on others. We heard this morning and we have heard elsewhere the issue that my autonomy may have an impact on others which was inadvertent, which I have not intended but which the law might allow, and I think autonomy under those circumstances is not absolute. Really I wish to probe you on whether you are absolutely certain in your view, whether you think there is any downside to this Bill and, in particular, about the autonomy issue?

  Professor Blackburn: I have talked about a number of philosophical issues. There are, if you like, sociological issues, issues of prediction. For example, would this Bill, if implemented, make one change or other, would it create more victims of some kind or impact widely upon the vulnerable or destroy patient trust in doctors? Those are questions which may be ones of speculation, partly ones of evidence from other cases, partly ones where one can make an educated guess, but as a philosopher I have no expertise in solving those questions. I cannot state positively that there will be no downside. I can imagine downsides to almost anything in human life. That is the first part. The second part about autonomy I think I can be more definite about. You are right, of course, there is no absolute principle of autonomy, people want to do things that they have to be forbidden from doing, there is no doubt about that. The famous John Stuart Mill Harm Principle is the leading principle which governs us there. I think, in this case and using Onora's distinction between personal autonomy and principled autonomy, we are dealing with principled autonomy, the desire not to be a burden, the desire not to be undignified, the desire not to suffer. Those are not, as it were, just whims which can be overturned if people do not like them. It seems to me they are a very, very important part of people's sense of their own worth, their own dignity, of the sense of the story that their own life makes. One might be very proud of being self-sufficient, of not being a vegetable, of not being comatose, of not being a great expense and burden to people around one, and people who are proud of that, contrary to what I think was implied at various times this morning, particularly by Professor Gill, are not the vulnerable. You do not make yourself vulnerable because you are afraid of being a burden to other people. I do not regard myself as a vulnerable member of society but certainly I am duly afraid of being a burden to other people in various ways. My pride would rebel against it and I would regard the narrative of my life as having gone much worse if it ended in these terrible ways. So I think we are dealing with principled autonomy. I do not think the decision, were it ever to come to that, that I might make or, God forbid, my wife might have to make and my doctor to terminate dying, suffering, intolerable moments of my life is a decision which has the kind of John Stuart Mill impact on other people, that is, by giving it to me you harm others. Any harm to others would have to be through such an indirect and improbable chain of causation that I think it would be wrong for public policy to take any notice of it.

  Q1813  Lord Turnberg: Can I be a little clearer. It is not the act of personal autonomy in the way you describe it which would have necessarily a negative impact on others, it is the passage of the Bill which might. It is that which concerns me. If we had a Bill which ensured the sort of circumstance you describe, which I think is entirely laudable, would it have a negative impact on others who felt, as we have heard from several groups, that they would feel vulnerable or more at risk and feel that they were likely to be affected by this, albeit perhaps without good foundation but we are not sure?

  Professor Blackburn: Without the safeguards, I believe there could be a risk; it was described this morning as a slippery slope. With the safeguards in place and in the light of the experience you are gaining from the operation of such Bills in other countries, I think the risk is very, very small.

  Q1814  Bishop of St Albans: My Lord Chairman, if I might ask Professor Blackburn, it is really an attempt to be as philosophical as possible so please do not look at the uniform I wear or misread what I am about to say, it is about the notion, the concept, of sanctity. Would you feel at any point that the word itself should be bracketed out of any kind of language in this area?

  Professor Blackburn: It is a dangerous word; it is a word that pushes buttons. I think it has to be used with great care. The interpretation of the principle of the sanctity of life is not in anybody's mind a simple matter. No, I think it is a good word and I would be sorry to see it lost. I am not so different from some Unitarian colleagues in this. I think there are some things which deserve treating as sacred, as it were.

  Q1815  Bishop of St Albans: I am trying to be very sensitive to your particular position.

  Professor Blackburn: You do not have to be.

  Q1816  Bishop of St Albans: No, but it seems fair enough to be. Could you say then what meanings you would give to the word sacred from your particular position?

  Professor Blackburn: I think there are some things which are so shocking that they rule themselves out of any decent person's decision-making. There may be quite surprising examples. In one of my books, I give the example of an advertising concern which had the ambition of putting up a satellite in the night sky, about the apparent size of the moon, which could reflect advertising slogans, like Coca-Cola, or whatever, onto earth. That strikes me as a deeply shocking and, if I can use the word, impious suggestion. It is a distortion of our place in the cosmos, which would be attacked I think with repugnance by all right-thinking people and one could use the word impious and use the word desecration of such a proposal. It is not obvious why, because it would be very difficult to argue it on the grounds of harm, it might even do some good if it advertised Aspirin, or something. It is a delicate matter. I do think there are issues like that and I can see that they hover in this area so it is a very serious area.

  Q1817  Bishop of St Albans: Could I push on a bit further on the word revelation, or disclosure, or whatever. Accepting that you personally would not perceive the use of that word in any sense as involving God or any concept of God at all, do you think that, again, it is a word that is evacuative of meaning if it is used in current society, or do you think it is still a word that we can use with a degree of philosophical integrity?

  Professor Blackburn: I think I am less hospitable to that, if revelation is the word that we are talking about. No, I do not like that word, it is used so often and I think so centrally as a device for closing off things.

  Q1818  Bishop of St Albans: It is a trump card word?

  Professor Blackburn: I am trying not to use it in those terms at all. It is a device for saying "Look, my texts have spoken and that's the end of it," which I dislike. I have got to dislike it; it is my profession to.

  Q1819  Bishop of St Albans: Of course; to think about things. Thank you very much.

  Ms Stinson: May I make a brief comment on that. Personally, I do not particularly like the word because of the implications it carries with it, but I think that a key belief, if you like, of Humanism is the importance of life, and we take the importance of life to exactly the same level as I think a religious person would take it when they talk about the sanctity of life. Life is crucially important. We do not end life unless there are exceptional reasons. In fact, from the humanist point of view, since we do not believe in an after-life, we belive we have got only the one life. So it is bound to be extremely important.

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