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

Examination of Witnesses (Questions 1 - 19)



  Q1  Chairman: Thank you all for coming. This is a public session of the Select Committee on the Assisted Dying for the Terminally Ill Bill. It is our purpose to hear the oral representations from the Voluntary Euthanasia Society. I would like the Chief Executive Officer of the Voluntary Euthanasia Society to introduce herself, and then the individual members of the team to introduce themselves. Then it is over to you as to exactly how you wish to conduct the proceedings: you may either make a single opening statement, or you may decide to have opening statements from each witness. The point obviously is that the more time that is taken up by that, the less time there is for questioning; and it is for your judgment as to which bit of the proceedings is more important from your point of view. The evidence is recorded, and therefore it is clear that it would be a great help if you can be so kind as to articulate as carefully and clearly as you can, without of course unduly delaying the time of the presentation that you want to make. The evidence will be submitted in draft to the witnesses with an opportunity to point out any corrections that are required to be made on the transcript. With that introduction, Miss Annetts, would you like to proceed?

  Miss Annetts: We welcome the decision of the House of Lords to give time to this very important issue, and I would also like to thank the Committee for asking the Voluntary Euthanasia Society to give evidence in connection with Lord Joffe's bill. I would like to introduce you to the witnesses who are here today. We have asked them to attend because of their expertise in their individual fields. They are not representatives of VES; they are here because of their particular levels of experience. I would now like to hand you over to Sheila, who will briefly introduce herself and outline her background.

  Professor McLean: Chairman, my name is Sheila McLean. I am Professor of Law and Ethics in Medicine at the University of Glasgow and, as Deborah said, not associated with the Voluntary Euthanasia Society.

  Professor Harris: I am John Harris, bio-ethicist and philosopher at the University of Manchester, and I am also not a member of the Voluntary Euthanasia Society nor otherwise associated with it.

  Mr Barclay: My name is Tom Barclay, and I am here because the Voluntary Euthanasia Society asked me to come in view of the fact that I have an incurable complaint.

  Dr Harris: My name is Evan Harris. I am a Liberal Democrat MP for Oxford West and Abingdon, and formerly a doctor, and a member, like Sheila and John, of the British Medical Association Medical Ethics Committee, though we do not speak for either the BMA or indeed the Medical Ethics Committee. We are here in a personal capacity. I was involved in a successful attempt to steer—through open debate—a policy around doctor-assisted dying through my own party conference just last spring.

  Miss Annetts: There have been a number of very significant changes over the last 10 years, which we have set out in the VES submission. I would like to highlight four of the most significant changes. There has been much speculation as to what would happen if medically-assisted dying were permitted. We no longer need to speculate. Medically-assisted dying is now permitted under the law in Oregon. The Netherlands and Belgium. Decriminalisation has made it possible for independent researchers to examine all aspects of medically-assisted dying, particularly in Oregon, where many academics, in conjunction with the Oregon Hospice Association, have undertaken comprehensive research. The second important point is that since 1996 there have been repeated opinion polls, not least the British Social Attitudes Survey from 1996, which have found that 82 per cent of the public support medically-assisted dying. Many UK doctors and nurses also support a change in the law. We concur with the GMC and the BMA, which have said that this is a matter for society. There is a clear consensus amongst the majority of the public, who want to see the law changed; and Lord Joffe's bill meets these wishes with great clarity. The third point I wish to address is palliative care. VES supports palliative care, and we would like to see increased provision to meet the needs of patients who want it; and we welcome the growing political commitment to realise this aim. However, many have argued, including the BMA and Macmillan Cancer Relief, that palliative care cannot meet the needs of all dying patients, and this has been reinforced by research carried out over the last 10 years. Lastly, we now have clear evidence that, irrespective of what the law may say, doctors, nurses and relatives are being asked by terminally ill people for help to die. We also have evidence that doctors and relatives are breaking the law and giving this help. Indeed, a recent UK survey found that 47 per cent of people would be prepared to break the law to help a terminally ill loved one to die. The law is clearly not working. It is not humane or effective. Indeed, the Law Commission has found that the current legal position is a blight on our law. Evidence from around the world has shown that it is far better to regulate medical help to die than to allow it to go unchecked and unregulated as an underground medical practice. Many safeguards have been built in to Lord Joffe's bill to protect the vulnerable, something that the current law simply does not do, whilst at the same time providing choice to dying patients and giving clear guidance to the medical profession when faced with a request from a dying patient for that help. I would now like to ask Mr Barclay to say a few words.

  Mr Barclay: Thank you for allowing me the opportunity to address you. I have been asked to tell you about my personal circumstances. I was a consultant plastic surgeon for 30 years, before retiring in 1989, and have been responsible for the treatment of many patients with big head and neck malignancies, both the resection and the reconstruction; and I am very familiar with the situation in which I have to tell a patient that there is nothing that I can do for them. I have been a member of the Voluntary Euthanasia Society for 17 years. Two years ago, I developed fasciculation of the muscles to my legs and arms, which are characteristic of Motor Neurone Disease, which is bad news, invariably fatal, and there is no cure—and I well knew that. In January of this year, because of wasting of my hand muscles, I consulted my neurological colleague, and he confirmed the diagnosis with EMG tests. Since then, my muscular wasting has steadily progressed, giving me some degree of disability. This process will continue. The next thing that will happen to me is that I shall get a dropped foot and have to use a wheelchair. After that, I shall become too weak in my arms to move the wheelchair, and I shall have to be carried about. The end stage of Motor Neurone Disease is called bulbar palsy, in which I shall be unable to swallow, and my speech will become unintelligible. Finally, after several years, I shall die of pneumonia caused by inhalation of saliva. This is all going to happen. If, in the end stage of my illness, I wish to commit suicide, I shall be physically unable to do so. I shall not be able to hang or drown myself and I will not be able to swallow the necessary pills if they are available. We all have to die. I have been very fortunate in having had a worthwhile career, good health, and a marvellous wife. I am not complaining about anything except that anyone who assists me in my project, as the law now stands, will be prosecuted. For the disease I have, no palliation is possible. The sensory nerves are not involved; there is no pain, only motor weakness. Nevertheless, I shall have what my medical textbook calls "intolerable suffering for the patient and his family caused by this terrible illness". My life expectancy is still of several years' duration, of which at least the last two are very likely to be end-stage helplessness, dysphagia and anarthria. I do not believe that under all these circumstances being medically helped to die at my instigation and with my full understanding and approval would in any way undermine the basis of modern caring medicine.

  Professor Harris: I would like to make two points in this very brief time that I have. The first concerns autonomy. Respect for persons, something we all wish to show, requires us to acknowledge the dignity and value of others and to treat them as ends in themselves, not merely instrumentally. This means respecting their autonomy. Autonomy is the ability to choose and the freedom to choose between competing conceptions of how to live. It is only by the exercise of autonomy that our lives become in any real sense our own. The ending of our lives often determines life's final shape and meaning, both for ourselves and in the eyes of others. When we are denied control at the end of our lives, we are denied autonomy. As Ronald Dworkin memorably put it, "making someone die in a way others approve, but he believes a horrifying contradiction of his life, is a devastating, odious form of tyranny". Autonomy is the underlying rationale of laws that, I hope we all accept, allow patients to refuse life-sustaining medication. To permit this and to deny medically-assisted death is, I believe, radically inconsistent. Next, I want to turn to vulnerability. Many objectors to medically-assisted death emphasise their concern to protect the vulnerable. There are two groups of vulnerable people to whom we owe concern, respect and protection. One consists of those who might be pressured into requesting death. The others consist of those, like Dianne Pretty, who are cruelly denied the death they seek. We are surely not entitled to abandon one group of vulnerable people in favour of another group of vulnerable people: we have somehow to protect both. Those seeking medically-assisted death are the more vulnerable because it is they who are truly coerced at the moment, absolutely prevented from obtaining the remedy they seek. Those who might be encouraged to die are free to refuse. They are not victims unless we permit them to be, or unless they make themselves victims. Those who seek and are denied death are the ones currently who are genuinely coerced, and who are at the moment, I believe, victims of tyranny. Concern for the vulnerable does not, as so many falsely believe, tell us that we should forbid medically-assisted dying: on the contrary, it tells us that we should permit it, with the safeguards such as those in Lord Joffe's bill. In this way, we can protect both of the groups of vulnerable people whom we owe our concern, our respect and our protection. Thank you.

  Professor McLean: If I may, I would like to approach the question from a slightly different perspective, given that my background is in law. It is not overstating things to say that citizens can expect their laws to be cogent, clear and consistent. I would suggest to you that for the moment the law in respect of end-of-life decisions offers none of these characteristics. I am happy to expand on this in questions if anyone would like me to. I think, secondly, we should recognise that this is an issue about human rights, not just those rights that are laid down in the Convention of Human Rights or in the Human Rights Act, but fundamental human rights. It is not a question of medical practice pure and simple, as both the GMC and the BMA have recommended, but our current legal regime relies on sophistry to allow assistance in dying in a number of circumstances, but paradoxically precludes this only where a competent individual contemporaneously requests it, a situation which Lord Mustill in this House described as the law being "intellectually misshapen" in the case of Airedale NHS Trust v. Bland. I would also like to pick up Professor Harris's point on the question of autonomy. There are many principles that people use in the argument against legalising assisted dying, the prime amongst which is the concept of the sanctity of life. This is undoubtedly a principle to which we would all subscribe, and one which clearly protects people who wish to have their lives protected. However, in most of the cases in respect of end-of-life decisions, the courts, up to the most senior courts, have indicated that the principle of autonomy to which Professor Harris referred, predominates over the principle of the sanctity of life where an individual person is competent in making a decision, as would be the case were Lord Joffe's bill to become law. Finally, from a legal perspective, I am confident that the protections that are placed in Lord Joffe's bill are sufficient and appropriate to ensure both competence of decisions that are made, the informed quality of decision-making, which is so essential to the exercise of autonomy, including the need for provision of information about alternatives to assisted dying. In fact, it may be another paradox of the current legal situation that Lord Joffe's bill would offer to those seeking assistance in this way many more safeguards than are currently available for those who at present can lawfully choose to die.

  Dr Harris: It is my first time on this side of the table, and I see a different perspective than usual, and I rely on your Lordships' reputation of politeness to rescue me from what I might have inflicted from that side! I have looked at this from the public policy point of view in terms of seeking to have this debate in public, and it seems to be from that, albeit short, experience that the public requires that Parliament debates this matter to a conclusion. In my short time in the elected house, we have debated most ethical matters at the beginning of life and around personal sexual morality, but this is one thing where there has barely been any debate or consideration; and it is a mystery to me why the political establishment, by which I mean those in all parties who determine business in Parliament, particularly in the House of Commons, should wish not to even debate this and show no sign of being willing to. The parliamentarians should not be let off the hook, and it is timely therefore that this bill comes forward. Even if it were rejected, I think many people would feel happy that at least Parliament had done its duty and fully debated the matter, preferably in both Houses, obviously. The letters I get, having clearly taken a relatively high-profile role, come from both sides, but I do get more from older people who are very worried that they will end up in the position of Dianne Pretty, or indeed her husband. They are as moving letters as one gets in other areas. I do not believe that in this sense this matter is any different from some of the contentious issues, like cloning and issues of sexual morality, that we have debated. For a number of years now, since my medical student days, I have been a participant and observer of the medical politics of this, and it is true that the British Medical Association has failed to support the change in the law at its annual representative meeting and, most recently in 2000. I have asked myself the question: "Why do doctors' leaders appear to be against this?" I think that they find it politically one of the more difficult issues, partly because they do not wish to be seen to be pressing for this change; but in my view, having spoken to many who have publicly stated that they do not wish to see a change, they would not actually mind if society did decide, and they would certainly go along with it unless they were conscientious objectors. Of course, there is that provision within this bill. The doctor/patient relationship has evolved, and often it has not been easy for doctors—more autonomy and choice for patients, and patients requiring and demanding more openness on difficult subjects with doctors. This is one of those areas that is the next to see an evolution in the doctor/patient relationship. Even if doctors' leaders are not yet calling for it, I believe that patients are, and those that represent patients ought to be.

  Chairman: That completes the presentations and it is now my privilege to invite members of the Committee to ask questions to any or all of those who have spoken.

  Q2  Lord Taverne: I should like to ask two questions, the first of Deborah Annetts. There is a lot of evidence, you say, now from Oregon and The Netherlands. What does this show in relation to the argument deployed against the change, namely that there is a danger of the slippery slope? The second question is one I should like to put to Professor Harris. One of the most fundamental moral dilemmas involved in this seems to me to be illustrated by the so-called policeman's dilemma, which you refer to in your written evidence. Would you expand on that particular aspect?

  Miss Annetts: Thank you for asking that question. It is a very important question because it has been raised—concerns about the slippery slope. We now have very clear data from Oregon and from The Netherlands that this simply is not happening. If anything, commentators have said that perhaps regulation is the best way to stop a decline into the slippery slope[1]. That is an important point. The research from The Netherlands has been led by Professor van der Wal, a very key researcher in The Netherlands, and he has conclusively found no slippery slope in terms of either an increase of people wanting to have assisted dying or people from perhaps vulnerable groups making access of these particular provisions under the law in The Netherlands. Exactly the same has been found in work carried out by Linda Ganzini in Oregon: there is no evidence whatsoever of the slippery slope.

  Professor Harris: I will be as brief as I can, but I think I should state what the so-called policeman's dilemma is. This was a case first brought into the literature by Herbert Hart, Professor of Jurisprudence at Oxford, supposedly a real case in America in which there was a motor accident—a lorry driver was trapped in the cab of his burning lorry. The policeman was on the scene and it was quite clear that the lorry driver would be burnt alive before he could be extracted from the vehicle, and he pleaded with the policeman, who, as American policeman are, was armed, to shoot him in the head rather than allow him to be burnt alive. Everybody would agree that the policeman did the morally correct thing in shooting him in the head. This case shows that there is no principled objection to euthanasia; the rest is an argument about safeguards. I have not met a single person who could look me in the eye and say that that policeman did a wicked thing and did something that he should not have done. If we concede this case, then we concede the principle of assisting death in cases of extreme distress where the condition, as the lorry driver's was, is clearly a terminal one—the very conditions envisaged in Lord Joffe's bill.

  Q3  Lord Patel: We have seen, in paragraph 2.8 on Page 4, evidence that doctors are already assisting their patients to die. We have one of the authors here, Lord Chairman, and I would like further expansion of that.

  Professor McLean: The evidence to which you refer was the result of a survey conducted as part of a study into voluntary euthanasia and assisted suicide in 1996. We distributed some 2,000 questionnaires to doctors and also to some pharmacists—given that, where assisted death had been regulated by way of physician-assisted suicide, then they clearly would be implicated in the final decision. We had a 50 per cent response rate, so we had about 1,000 responses to our questionnaire. Fifty-four per cent of the respondents indicated that they would welcome a change in the law to permit assistance in dying. At the same time, I coerced BBC Scotland into conducting an opinion poll of the Scottish public, and they surveyed some 1,000 people of whom 72 per cent agreed that there should be a change in the law to permit assistance in dying. Of the professionals who responded to us, something like 4 per cent said they had helped a patient to die, which is, interestingly, significantly lower than similar work done in the United States, but 11 per cent knew a man who had, so it was obviously not entirely lacking in being fairly widespread. Is that the evidence you were referring to?

  Lord Patel: Yes.

  Q4  Earl of Arran: If palliative care were available for all the terminally ill, do you still see a need for this Bill?

  Miss Annetts: A lot of professional organisations, like the BMA and Macmillan Cancer Relief, have said that palliative care cannot meet the needs of all patients, and I think that is backed up by the evidence from Oregon, which has shown that 93 per cent of people are in receipt of palliative care who actually ask for and receive help to die. They are actually in a hospice when they are making the request, and then have that request accepted by their attending physician in Oregon. That clearly demonstrates that palliative care, for those particular people, has not met all of their needs. Palliative care is obviously something that is central to the dying process, and we absolutely endorse that view. That is why we are very pleased that Lord Joffe has included in Section 3 of his bill something called the "palliative care filter"; that, if somebody asks for medical help to die, then a palliative care specialist is required to attend that patient to explore whether palliative care can meet their needs better. We are absolutely behind that particular provision.

  Professor McLean: One other piece of research that might be of interest is that there is a certain amount of evidence now, certainly from the United States, that patients who are receiving good palliative care are more rather than less likely to ask for control at the end of their life; the very fact that they are adequately informed about the alternatives, and that they are palliated to the stage at which they are competent to ask these questions, they are more likely than less to ask for control at the end of their lives.

  Q5  Baroness Finlay of Llandaff: Can I thank you, Mr Barclay particularly, for having come to speak to us and explaining what is clearly a very difficult situation to be in. I am not certain from the evidence that you have submitted why you feel that it must be doctors that do this, given that we have had evidence from doctors who have said that they would not want to be involved in any way in a process of ending patients' lives—"killing patients" is the phrase they use—and why you have not proposed some kind of scientology service that would be separate and outside, in terms of bringing about the same end for the patient but without impinging on the conscientious ability of a doctor to take a decision— because in the bill there is also provision that, whilst someone may object, they have a duty to refer, and therefore they have to be part of the process however deep their personal objections may be.

  Miss Annetts: Lord Joffe has noted concerns around Section 7 and may well be putting in an amendment to Section 7 in relation to the obligation to refer on to another medical practitioner. However, if you look at the evidence from Oregon and from the general public in the UK, they see the medical practitioners as the person they want to help them at this critical time, and that marries up with the evidence from Timothy Quill, who is a palliative care consultant in the States. He said it is very important for the medical profession, for the doctor, not to abandon the patient at the end of life. There is a concern that, if the doctor almost sub-contracts this role, and if that were the provision in the bill, then the patient might feel a sense of real abandonment. Notwithstanding that, of course, the conscientious objection clause is absolutely vital.

  Dr Harris: To add to that, the problem you cite is not a new dilemma for doctors—for example, the abortion procedures they are faced with, having to refer to someone else if they have a conscientious objection. There will always be areas of practice where doctors need to refer because they are opposed to participating in the process. If the process is lawful, then I think we have a right to expect doctors to make the onward referral, even if, as this bill does, it provides a conscientious objection, which is well recognised as something that is reasonable to do. My understanding is that this has not been a major problem in other jurisdictions where this has been made possible. The other point I would make is that it is always useful to make the comparison with the more passive situation where a patient refuses treatment that is life-saving, and they do not need even to be suffering from unbearable suffering, however that is defined, or even have a terminal illness, because if they have the capacity they are entitled to make that decision. Some doctors, I am sure, would find that even more distressing because they know there is a life-saving or ameliorating treatment that a patient, for whatever reason, is rejecting. Again, that is not a new dilemma, and I suspect, based on my own career, that all doctors have seen situations that they are not entirely happy with but they recognise that, when it is a question of patient autonomy, that has to override their unwillingness and unhappiness about referring this case, or participating if they are not a conscientious objector.

  Mr Barclay: Speaking personally, if my request for suicide help were medically approved by people whom I knew, that would satisfy me perfectly well. I would not want my own practitioner necessarily to do the final injection.

  Q6  Chairman: Mr Barclay, it is rather a delicate question, but have you any idea from the point of view of your own condition how much time of life would be stopped if you were able to ask for medical help to have suicide in your situation?

  Mr Barclay: According to my reading and the people I have asked, the process can last a very long time or not a very long time. My medical textbook, on which I rely, suggests that a terminal period of two to four years in a helpless state is to be expected, but it may be less. It is very unlikely to be more. That is what one would have to anticipate when one were making the request. I believe that, when I get to the stage when I cannot swallow, I shall ask for it then.

  Q7  Baroness Hayman: I wonder if I could explore with our witnesses the issue about the evidence of who it is who most supports or asks for assisted dying in the experience that we have from abroad. You mentioned that it was those who had perhaps best experience of palliative care who still wished to be in control, and I read in the evidence from Oregon that there seemed to be a bias in terms of educational standards and perhaps social class of those who asked for assisted dying. Do you have any comment on that phenomenon, and how do you explain it? Do you have any thoughts or concerns about that? Would that be an issue for you were it to be replicated, in the terms that we address other issues of equality of access? Is that something that your organisation would consider was a concern; or would you simply say it was reflective of—?

  Miss Annetts: Again, on the Oregon statement, the Department of Human Services and Linda Ganzini have been researching into the types of people who access this particular provision. They have found that people who pursue the request through and have help to die are people who have a particular need for control and autonomy but who also may be suffering from quite a high level of existential suffering—loss of dignity, loss of bodily functions, et cetera. There is a combination here of what their suffering is, and what their suffering means to them personally. Interestingly, a much higher percentage of people actually request a prescription but do not use it, and we think that is because they are using it like an insurance policy— "if it gets too bad, I have control, but I will not use it until I get to that point". In the words of some of the Motor Neurone Disease sufferers from Oregon, they have said, "this has enabled me to live a better life because I do not have to worry about the future". There seem to be two different things going on there, one the insurance policy aspect and the other the illness combined with the personality type. In terms of access—and I can only express a personal view—it comes back to personal autonomy and who this person is. It is clear from Oregon that people from a higher socio-economic group seem to be using this particular provision, although interestingly people who make the request may come from a lower socio-economic group; so there may be a whole variety of things going on there. I am not sure we would want to start advocating on the basis of access actually. I think it is very much a personal thing; it is how you want your death to be at the end of your life, and I do not think VES should be involved in that.

  Q8  Baroness Jay of Paddington: I would like to follow up more specifically one of the general points that Lord Taverne asked about in relation to the argument of the slippery slope. One of the issues that is often raised—and it has come up in some of the responses made to questions that have already been posed—is that there is a particular difficulty for the medical profession in terms of the potential loss of trust. We are all familiar in this country where that has been a specific problem. Have you done any work on that, or has anybody for example in The Netherlands and Oregon—I saw it referred to briefly in your written evidence, but is there something you can expand there on the potential loss of trust?

  Miss Annetts: Again, we have to go to Oregon and The Netherlands to see what the evidence is there. There have been a number of pieces of research done which are either on the point or adjacent to it. Firstly, there is a piece of research by Graber in the States who looked at this issue and found that there had been no reduction in trust whatsoever. Secondly, there was a piece of research conducted in 2002 which found that the Dutch trusted their doctors more than any other nation, including doctors in the UK, which is a very interesting finding. That may relate to the fact that, again, the six-country European study from 2003 found that there was the highest level of discussion between doctor and patient in The Netherlands around end-of-life decisions, so trust seems to have something to do with that whole discussion process between doctor and patient, which is very important.

  Professor Harris: I have no empirical evidence, but intuitively it would seem to me that this would be a trust-promoting measure. The patients will know that they can trust doctors to do precisely what the patient believes is in their best interests, and is necessary to protect them. Knowing that the doctors are able and willing to do that would promote trust rather than reduce it.

  Q9  Baroness Jay of Paddington: Do I understand that the VES position is not that there is what one might jargonistically call competition with palliative care in this whole area—because sometimes the argument is expressed that it is palliative care versus assisted dying? That is not your position?

  Miss Annetts: Absolutely not, no. The two work hand-in-hand. Indeed, the Oregon Hospice Association has come up with a very useful leaflet, which it delivers to everybody who has been diagnosed with a terminal illness, which goes through all the different options: refusal of treatment, withdrawal of treatment, palliative care, pain relief, also medical assistance to die. The whole thing is a package from which the patient can take what they want.

  Dr Harris: Baroness Jay, I happen to agree with Professor Harris that it would be a healthier and more trusting relationship if the patients were aware that their autonomy would be respected and be paramount. But even if you do not accept that argument—and some people do not—I would say that it is not a particularly healthy relationship, and it is rather old-fashioned, for patients to be in a position to say, "whatever you say, doctor; I trust you explicitly; I do not even have to think about this; I am going to go with whatever you say". I think the relationship has evolved, and it is a good thing that it has become more equal. It has a long way to go in my opinion. With respect to the palliative care point, clearly at the end some people do argue that, if everyone had the maximum amount of palliative care, they would not want this assistance. However, we do know of cases; there is no question that Dianne Pretty had access to palliative care, and that many other people often will have—and I am sure that Mr Barclay would have access to that; but I do not think it is proper palliative care for people involved in palliative care to say, "you are wrong about your wishes at the end of life because here we are giving you palliative care; how dare you then request help to die because of dignity and things that are personal to you". Palliative care in some cases does meet some people's every need but in some cases it clearly will not, and it has to be a subjective matter.

  Q10  Baroness Thomas of Walliswood: Dr Evan Harris spoke of the benefit of discussing the subject even if they are not successful or it still never comes to anything. Like many people, I take the argument in favour of autonomy as a very strong argument, but many of the people who have written to us have associated this Bill and what they know of it with a fear that they will be, to put it vulgarly, bumped off by somebody else. They do not see the Bill, perhaps because they do not understand it, as an effort to give autonomy, and they see it in quite the reverse, as a threat to what could happen to disabled people or people with mental difficulties and so on. I would like you to comment on that and how that relates to what has been drawn to my attention—that "do not resuscitate" messages can be put on a file without the patient being aware of it. That might give people, as it were, reason to suppose that we are moving towards a state, not of increasing autonomy, but decreasing autonomy?

  Dr Harris: The "do not attempt resuscitation" notice, as it should be properly known, is an example of what the present poor practice is, where the matter has not been discussed. Patients with capacity ought to have that discussed, and there should be a duty on doctors to discuss that situation in appropriate cases. One instinctively says that it is terrible to discuss that sort of thing with patients as they enter hospital, but there is a real risk that patients, many of whom do die in hospital, run the risk of having resuscitation attempted inappropriately. So the danger you cite, where people feel that they might be bumped off, is something we must be vigilant around now, and in the future, whatever the state of play of the law. I am certainly aware from my own practice of patients who have had heavy strokes, for example, being put on sedation, diamorphine pumps; and for no good reason, because they had such a dense stroke that they were not in pain, but it was just the way that their end of life was seen off. I think that is inappropriate and in other jurisdictions this sort of legislation has been brought in in a climate of regulation in an attempt to tackle the abuses that are occurring in order to reduce them. I have been able to persuade people who have contacted me, maybe because I have taken a public position, that they will be in an environment where there would be more safeguards against non-voluntary acts if the law were changed.

  Professor Harris: This is clearly a real issue, but if the fear that people will be bumped off, as you put it, is ill-founded and can be met with clear safeguards, then one of the answers to this is education. But an important point is that we, you, Parliament, we the society, should not condemn others to a terrible death because of the ill-founded fears of another group. All we have to do with those fears is show that they are ill-founded and make sure that the safeguards are in place so that people can clearly see that they are ill-founded; and I believe that that is what Lord Joffe's bill does.

  Professor McLean: A longer version of what I am about to say here is in the written evidence that I submitted to the Committee, but which you may not yet have seen. I support what Dr Harris was saying. One of the difficulties in the current legal regime is that there is scope for fear because people are not actively engaged in the kinds of decisions that are being taken about the end of their lives. One of the benefits of Lord Joffe's bill is that it introduces safeguards for a person in this situation that do not exist in any other areas. It is possible for clinicians to make decisions on behalf of incompetent people about the moment that their lives should be ended. To come back to the earlier question about doctors not wanting to be involved in this, I think it was a mistake to suggest that merely because the doctor's involvement is characterised by withdrawing or withholding treatment, for example from a patient in a permanent vegetative state, it is a mistake to suggest that they are not involved in the death of that particular patient. Clinicians already are involved. One of the problems is that they tend to be involved in circumstances where the individual concerned is not in a position to make a request. What Lord Joffe is doing in a sense is putting people who require active assistance on a par with those who have a treatment that they could otherwise refuse. If I happen to have a condition that has a life-saving treatment, I am legally entitled to refuse that treatment, and my clinician cannot interfere. The only group of people where that decision cannot be made are those who are competently saying the same thing with the same intention, seeking the same outcome, but who require active rather than passive assistance. In my view, the distinction between acts and omissions, and active and passive, certainly within the context of a doctor/patient relationship, where there is a duty of care, is a distinction without a difference.

  Q11  Lord Taverne: Mr Chairman, can I follow up the question of the fear of being "bumped off"? It is sometimes said that people have a lot of fears that their relatives will put a lot of pressure on them to give their consent because it causes a lot of inconvenience to the relatives, and they may be forced, as it were, by moral pressure, into giving their consent, which otherwise they would not give. That is a fairly widespread fear from the correspondence we have had. Can you deal with that?

  Miss Annetts: We have not seen any research to that effect. We have undertaken a huge search of literature in relation to all these issues which relate to end-of-life decision-making. However, what we have found from Oregon is that there is some research to the effect that sometimes a patient will hold off going through the final act of having help to die for a few days as a result of their relatives putting pressure on them not to do so; so it is the other way round.

  Professor Harris: To follow Sheila McLean's point, as far as we know there is no evidence that people are refusing treatment in droves because of the pressure put on them by their relatives, but if that was a real fear you would expect it to apply as much to refusals of treatment as it would to positive assistance.

  Q12  Earl of Arran: If, as would seem to be the case at the moment, assisted-patient-dying is gaining force or credibility, call it what you will, in western Europe, are there signs in Oregon that the neighbouring states are beginning to take some interest?

  Miss Annetts: There has been some interest in other states. What is interesting about Oregon is that the legislation came into being as a result of a citizens' initiative, so it was a push from society at a very grass roots level that brought about the Oregon Death With Dignity Act. I cannot assist any more.

  Q13  Baroness Finlay of Llandaff: In relation to the boundaries that you have proposed—and you talk about the need for open discussion with patients about what is happening, with which I completely concur—this debate has been healthy for people who are ill in empowering them to talk. However, the evidence that I see from Holland suggests that approximately one in five patients' lives are being ended using euthanasia, without their explicit consent, despite the law having been changed there for some time. I wonder why you therefore feel that the safeguards that you propose would be law, because 20 per cent without consent seems to be quite a high number.

  Miss Annetts: The law came into being formally in The Netherlands in 2002, so the statistics you are referring to are pre the legislation coming into effect, and during that time doctors were working on the basis of guidelines coming out from the case law rather than actual statute. Having said that, the research in other countries, Belgium and Australia—and those are the only other two places where we have specific percentages of assistance or of end of life decisions without the explicit request of the patient—shows much higher levels. In The Netherlands it is 0.7 per cent, in Belgium it is 3.2 per cent and in Australia it is 3.5 per cent. Going back to that 0.7 per cent, yes, that is a concern and the Dutch absolutely recognise it and they have been working very hard to try and put in better provisions—if you like, better medical practices—have in order to deal with that issue. What is noticeable, though, looking at the 900 deaths which occurred, without explicit request, is that most of those patients will have made a request to the doctor; they may not have gone through the formal process but they will have gone through an informal discussion[2]. The latest figures from The Netherlands show that in virtually all those cases there will have been a discussion, if not with the patient themselves then with the relative or a colleague. But, of course, in the UK we have no statistics whatsoever; we do not know the extent to which this particular medical practice goes on within our own hospitals.

  Q14  Baroness Finlay of Llandaff: I want to ask Professor McLean whether you have done any research, looking at the case notes, where doctors had said that they had done something to suddenly end a patient's life? Looking as to whether it was that they had not understood the action of opiates or whether this had been a cessation of futile—if I can use that word loosely—treatment or whether in fact it had been an administering of a lethal dose of something like barbiturates and kurari, which is what we have been talking about?

  Professor McLean: I do not, in fact, have that information; I have not done research on that. But I can tell you that, of the doctors who responded to my survey, the question was quite specifically about active assistance on request from patients, so it would be precisely the situation that you envisaged. In that survey, as I say, it was only something like 4 per cent, with another 11 or 12 per cent who were able to say that they knew that this was happening with colleagues.

  Miss Annetts: To go back on the Dutch experience, I suspect that Professor Van der Wal, who has done most of the research in this area and sponsored by the government, would be able to assist the Committee much further in relation to looking at those cases and the approach which the Dutch government would take in relation to regulating end of life decision making, with reference to those medical practices. There is also a piece which appeared in The Lancet in 1993, which we could certainly let you have, which goes into those deaths in more detail, and perhaps can provide you with the information that you seek[3].

  Q15  Lord McColl of Dulwich: You said that Dutch doctors were more trusted than British. What is the basis for that research? As somebody who works with Dutch doctors and Dutch nurses, communication is sometimes a little difficult, and I wondered how the comparison was made?

  Miss Annetts: I suspect the best thing to do is to let you have a copy of the entirety of that research; I think it did cover most European countries[4].

  Dr Harris: I do not know the specific research, and some of these qualitative studies, I think we both recognise, are limited. I think it is a point to make that there does not appear to have been detected a problem, even despite the climate and legislation in The Netherlands, of loss of trust. Indeed, if anything, we should expect empirically, in my view, that doctors who are prepared to overcome the British reticence to talk about death, which pervades all parts of society, may well engender more trust these days from their patients because they are putting everything on the table. That is a personal and empirical view but I have not seen any evidence against it.

  Q16  Lord Turnberg: I have found your presentations enormously helpful and valuable, and I am very grateful to you for coming to talk to us. As you are probably aware, we have been getting enormous amounts of letters and submissions, not all of which say the same thing as you do. There are a number of fears that come up, and we need your responses to them. One relates to Professor McLean's comment regarding the relationship between sanctity of life and autonomy—which has precedence, which is secondary to which and whether they are of equal weight, and so on. The other relates to John Harris's comments about, once we have got through the ethical view, we are then into how to determine the safeguards, and I think that is where most fears have been coming through—to me at least. How do we ensure that there are sufficient safeguards to satisfy us and the public that dangers will not ensue? I think that is an extraordinarily difficult area, and you may pass that over, but I wondered what your comments were?

  Professor Harris: Can I start with that last point? As far as I know, in no realm of human life is it possible to have absolute safety, an absolute guarantee that there will be no errors or nothing will go wrong. But against the possibility of a safeguard failure we have to set the fact that without assisted dying many people are going to terrible deaths, which they need not go to and from which assisted dying would save them. So we are not entitled to expose that group to certain danger because we can never be sure that there are absolutely foolproof safeguards in any human endeavour. We have to take a balanced view, it seems to me, but that balanced view should not be at the expense of one group always in order to offer absolute protection to another group.

  Professor McLean: Can I add to that that? There was an editorial in the New England Journal of Medicine a number of years ago—and it was in fact written by the editor, I think—in which it was noted that the fastest growing group of suicides in the United States at that time were amongst the elderly. The reason given for that was that they feared being inappropriately kept alive in circumstances where they would have preferred not to be. So there is another side to that particular issue. On the question of the law's approach to autonomy and sanctity of life, I think, from reading any of the judgments, perhaps in the last 15 or 20 years, from the House of Lords down, that the attitude of the courts has been to adopt a sanctity of life principle which is, if I can describe it this way, a secular sanctity of life principle; in other words, the presumption is that people's lives must be safeguarded by the State. Indeed, as you know, there are requirements under the Human Rights Act that that is done. But the secular nature of it is that it is not taken to be an obligation to live, which is entirely in line with removing the prohibition or the criminality of suicide, for example. So what the courts have said, very senior Judges have said, is that, when there is a tension between the State's underpinning commitment to preserving the sanctity of life and the autonomous decision of a competent person that they no longer wish to have their life protected by the State, the function of autonomy or the value of autonomy is more significant than any adherence to sanctity of life. That has been the judgment in any number of cases in all sorts of different arenas, covering cases in which people have actually had a diagnosed mental illness to pregnant women making decisions about whether or not they should undergo Caesarean sections to deliver a healthy foetus. So it is now very much ingrained in the way in which the law approaches these issues.

  Miss Annetts: May I come back on one final point in relation to safeguards? There is plenty of evidence to show, I think, both in the UK and overseas, that medical assistance to die is happening; it is happening now, irrespective of what the law may say, and it is happening without any safeguards, without any stringent tests, without a waiting period, without checking on the patient's competence, without an exploration of palliative care. That is what is happening. There is an underground of medical assistance to die, which has been documented, for example, in the work of Professor Magnusson and Professor Emanuel. So it is not a question of prohibition or not prohibition; it is a question of coming up with the best regulation.

  Dr Harris: On the question of sanctity of life, may I say I feel very strongly that the comparison needs to be made with decisions to refuse treatment. If sanctity of life as a priority were any basis for regulation, then we would seek to prevent competent patients from refusing life-saving medical treatment. We do not. I do not even believe it is controversial that we allow competent patients, even who are not suffering from a terminal illness, even who are not suffering unbearably, both of which are safeguards for the active case in Lord Joffe's Bill, from refusing life-saving treatment, despite the view that the sanctity of life is an issue. So for those patients who require help I cannot see ethically, as John Harris has said, that there is any difference, except in this Bill there are additional safeguards requiring there to be a terminal illness and requiring there to be unbearable suffering in the context of that. So it is an even more rational decision, and the autonomy is in fact bounded by those requirements.

  Q17  Baroness Jay of Paddington: You said at the beginning, Deborah Annetts, that you felt that things had changed in the last decade, and obviously you have cited changes in the law of the countries that we have talked about this afternoon, and Professor McLean has just spoken about the change because of the Human Rights Act and encapsulating in law matters like autonomy and so on, which were not, at least in British law, extant before that. We have also had in your written evidence the necessary reference to the Law Commission's Report on the Homicide Act, talking about the issues which have just been raised, about driving this kind of procedure underground. Do you think that there has been a cultural change in which all of these issues are embraced, which makes you feel that there has been much greater openness, perhaps much greater public support, as you have measured it, for matters of this kind? What exactly is it, do you feel, that is happening in our society which makes this something that is more readily addressed? We have mentioned the factors of the law; we have mentioned changing the legal framework from the statutory point of view, and perhaps the more cultural one. Can you in any sense draw these threads together? Or do you think that these are things which have just happened, not necessarily in parallel but just at the same time?

  Miss Annetts: I think it is a very interesting question to try to work out what is going on. I think they may all be impacting on one another. I think there is something very organic going on from the grass roots up, if you like; that most people will have experienced personally a bad death in their family. They know what the law is and they also know that they cannot ask a doctor for help to die without getting the doctor into trouble. So there are discussions amongst family members— "What do we do?" I think what the case of Dianne Pretty did was to give people the opportunity to start to talk publicly and really voice their concerns, and of course that is also underscored by the rise in the principle of autonomy, which of course is a thread going through the Human Rights legislation.

  Professor McLean: I have only limited reasons for saying this, but I have a large Masters programme in the University, which is primarily addressed to doctors and other healthcare professionals, and in the last 10 years—perhaps five—something like 50 per cent to 60 per cent of those clinicians choose to write their dissertation on end of life issues, and 99.8 per cent of them—that is probably an accurate figure—are now arguing in favour of legalisation of assisted suicide or voluntary euthanasia. The reason I mention this is that one of the other things that has been happening is that people have become better educated about the issues that surround it and a new generation in particular of hospital doctors and other doctors and nurses are increasingly seeing the relationship between healthcare providers and patients as a more balanced relationship, which leads to more openness, which allows people to learn more about the sensations that people on both sides are feeling. Certainly my experience is that with a certain amount of openness people's minds do change very easily, and I think the new emphasis in medicine—if I can call it new, Lord McColl might disagree with me—on sharing and what Harvey Teff called a therapeutical alliance means that there is also the incentive within that for people to respect other people's views more.

  Q18  Baroness Finlay of Llandaff: Can I go for a moment to the research that has come out on the reasons that people ask for death? Amongst those there is a fear of the future being worse than it is today, and a fear of what might happen. One of the reasons commonly cited is a fear of being a burden. I wondered how you felt patients will respond in the current climate where we now have less general practitioners available out of hours, often no district nursing at night available at home, and the family are increasingly having to pay for care and to provide that care themselves. I wondered what you felt about this increasing load that is being put on the individual and on their family in terms of that background to the request that has occurred, when people talk about their fears of the future?

  Miss Annetts: Can I start by answering that question with reference to the Oregon research, which comes out year on year and, as you rightly point out, has been plotting the reasons why people have been asking for help to die? As you have explained, one of those reasons which has been coming up is burden but, in fact, burden is quite a long way down the list and comes after losing autonomy, being less able to engage in activities making life enjoyable, loss of dignity and loss of bodily functions. So it does come some way down the list. Secondly, burden has been found to be quite complex and is often linked to a sense of hopelessness or indeed a feeling of loss of autonomy. So in Oregon "burden" is not burden to care givers. It is not what this is about[5]. The research from The Netherlands shows that, if somebody has made a request for that reason, being a burden to care givers, it is most likely that that request will be turned down. So, again, we have to unwrap what "burden" may mean and be quite careful in looking at that. Obviously I take your point in relation to burden and that is why Section 3 of the Bill is so important.

  Dr Harris: I draw a comparison with the refusal of treatment. If there is a problem with potential coercion, whether it be active or just a feeling of burden, then that is likely to apply in cases of refusal of treatment, which are common now and lawful at present. The safeguards in this Bill, which require effectively two doctors and a solicitor with a duty to explore issues of whether those are feelings or whether there indeed has been coercion, will, in my view, because of the way this Bill has been constructed and the safeguards in it, act to deal with that problem, if it is a problem, unlike those cases where it is a question of refusal of treatment. And obviously people who are terminally ill often go through phases where they require treatment to stay alive during their terminal phase—treatment of infection, for example. So if that is a concern, the safeguards in this Bill provide additional safeguards compared to the refusal of treatment situation.

  Q19  Baroness Finlay of Llandaff: I was not thinking about treatment so much as about social care issues, which are a huge problem for people. As you know, with people who have a disability and are at home, their physical care can actually be extremely difficult for the family.

  Dr Harris: I did understand the point you are making. Let me try to explain what I meant, because I do not think I made my position clear. Someone who has a terminal illness and is cared for at home and the care is provided largely by the family, as you said, they may get an infection and at the moment they are perfectly entitled to reject treatment for that infection, and it may well be, if your concerns are correct, that it may be because they feel a burden. In contrast, the safeguards around this Bill, for circumstances which may run simultaneously with those episodes where they require life prolonging treatment, actually enable those issues to be explored, with the consulting physician, in the Bill and, of course, if it reaches that stage, with the solicitor.

1   Note by witness: Lee, DE "Physician Assisted Suicide": a conservative critique of intervention, The Hastings Center Report 2003: 33 (1) : 17. Back

2   Note by witness: Van der Maas et al, 1991 (The first Dutch Government report). Back

3   Note by witness: Pijnenberg, L; van der Maas, PJ; van Delden, JJ; and Looman, CW. "Life termination acts without explicit request of patient", Lancet 1993; 341: 1196-1199. Back

4   Note by witness: Graber, MA; Levy, BI; Weir, RF: Opplinger, RA "Patients' views about physician participation in assisted suicide and euthanasia", J Gen Int Med 1996; 11: 71-76, also Kmietovicz, Z "R.E.S.P.E.C.T"-why doctors are still getting enough of it", BMJ 2002; 324 (7328): 11-14. Back

5   Note by witness: Third Oregon Report by Department of Human Services, February 2001. Back

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