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

Examination of Witnesses (Questions 360 - 379)



  Q360  Chairman: Can I understand that, Mr Gallagher. Are you saying that you have experience of people actually suffering as a result of the attitude that they know of from their relatives who wish to hasten their death?

  Mr Gallagher: Not to hasten their death; but they feel a burden at times. I think that is the more prominent feeling: they feel a burden to their families.

  Q361  Chairman: So long as they are alive?

  Mr Gallagher: Whilst they are alive, because they are going to become more dependent. Certainly there was one case I have worked with, where he did want to die before he would have done otherwise because he felt he would be a burden and become more dependent upon his family and affect their lives.

  Q362  Lord Taverne: The other question I want to ask is of Dr Tate. She said that she was not happy that the "unbearable suffering" is left to be subjective criteria. Is it not inevitable that "unbearable suffering" is subjective? We have, for example, evidence from one person with Motor Neurone Disease who said that, however terrible the suffering might be that she was going to go through, she did not wish to have her death assisted; and we greatly admire and respect her courage. We had evidence from another person with Motor Neurone Disease, who knew exactly what was going to happen to him, who said that he was extremely concerned that he should not go through suffering which he would regard as unbearable. This would seem to contradict the evidence that it is up to the patient and there is no patient who need suffer unbearable suffering because they can always let go. Taking those two cases, is it not inevitable that this, which a very important consideration, should be subjective? It cannot be defined any more, can it?

  Dr Tate: Absolutely. There is no doubt that suffering is what the patient expresses as suffering. My concern, the concern from the Hospice Council in its evidence is—

  Q363  Baroness Thomas of Walliswood: I am afraid I cannot hear you.

  Dr Tate: I am sorry, is that better?

  Q364  Chairman: Yes, that is better?

  Dr Tate: The concern of the National Council was about the definitions that were included in the Bill and the requirement for the doctors to make a judgment about the unbearable suffering of the patient; and the point was exactly that, that they would have no measure to use except by hearing what the patient may say to them; and if the doctor, particular a palliative care physician, is being asked to do that in the very short time that may be allocated for a palliative care assessment, the supposition is that that is not going to be an adequate assessment of the patient's suffering but that may take a week or more of knowing the patient and the situation before it can be effectively and properly judged.

  Ms Robinson: Perhaps I could refer back to Lord Carlile's question as well. I want to really emphasise the point that every suffering is unique, and it is in the context of a life lived that the whole root of the hospice movement is based on the management and the alleviation of suffering. Our job as palliative care clinicians is to build up a relationship of trust and, indeed, to help our colleagues who are working in our general hospitals and general practices to help people to discuss what the future might hold in terms of their symptom burden, what effect that might be on their family, and also to begin and to excavate what strategies they might want to put in place at a future date. In my experience a lot of people do change their mind once that therapeutic relationship is in place and people have the knowledge and the tools with which to manage each day as it comes.

  Q365  Lord Taverne: A lot of people may change their mind. What about those who do not?

  Ms Robinson: In my experience of 16 years and many thousands of patients, I can count on one hand the number of patients who have not changed their minds and have gone ahead and either taken their own lives or have gone abroad for assisted dying.

  Dr George: Could I make a comment about the assessment of "unbearable suffering"? Doctors really are not the best people to look at global assessment. This is why we have multi-disciplinary teams and why it takes quite long time to assess all the shades and components of that which involve the family and all these things. Often patients reflect family suffering; the family reflect patient suffering. It is a very complicated area and it requires much more than just one doctor to assess that.

  Dr Jeffrey: Lord Taverne, you were asking about experience abroad. It is interesting that in the studies from Holland doctors themselves decided that 35 per cent of patients requests for euthanasia had to be turned down because they were not suffering enough. I think one other thing that is at the back of my mind is that we talk in this debate as though it is all suffering and, if you have euthanasia and physician-assisted suicide, there is no suffering. But let's not forget Groenewood's work that shows that between 3 and 16 per cent of patients who have physician-assisted suicide or euthanasia have distressing deaths: failure of the process to work, myoclonic spasms and vomiting—a distressing time[9]. So it is not a question of either/or; suffering can be accompanied on both sides of this.

  Q366  Lord Taverne: The other question I want to ask is on the question of pain relief and that there might be difficulties in that case. Is it not true that since the Shipman case there has been less willingness of doctors to give as much pain relief as they were willing to do before? There was some work done by a research company called Medics UK. It found that a number of doctors have reduced their pain-relief-prescribing since the Shipman case; so that in many cases patients were not given the pain relief which they wished?

  Dr Tate: Perhaps I can start with that. I would suggest that that absolutely reinforces the need for an extension of palliative care education to the health care practitioners in order that we can understand that the appropriate use of strong pain killers is absolutely safe, that is fixing the dose according to the individual needs of the patient and continuing to reassess and to judge that, and that there is absolutely no evidence that by doing that one will shorten the life of a patient. Indeed, there was a paper very recently published from Israel which reconfirmed again that that was the case.

  Q367  Bishop of St Albans: My Lord Chairman, I address this question to Dr Jeffrey. I particularly enjoyed the paper that was produced by your Ethics Committee, not least the series of definitions that is provided. And, following the definition, you came to section 4 which was, I think, very, very carefully worded, I suspect, and it is about the wording that I would like to ask a question. You refer under 4(1) in your paper to arguments derived from "the appropriate scope of respect for autonomy". Clearly the rest of it is very carefully worded, but I suspect that was as well. My question is: did you phrase that sentence in that way because you have doubts or concerns about autonomy being the sole definition of human purpose, etcetera?

  Dr Jeffrey: Certainly I think there is a time now for a debate on the prominence of autonomy. Ethics, and particularly medical ethics, in this country have imported from Beauchamp and Childress in the States an American view of autonomy as having absolute primacy in any ethical debate. I think we are now beginning to realise that "no man is an island"; that we relate to a community and we have duties and responsibilities as citizens as part of autonomy. I think even Kant would not have wanted to look at autonomy as just striding oneness and choosing exactly what you want; it is also thinking about the effect of one's choices on others; we want here to reflect this and we think there is a debate here to see. Let us look at this carefully. We all want patients to have choice. Palliative care is all about maximising patients' choice and trying to maximise their autonomy but within the construct of how that affects other patients. Certainly that is the reason for phrasing it. It is about balancing between individual, private autonomy and a public morality and duty to others.

  Dr George: Can I make an additional comment on autonomy? If you go back to Kant and from Kant onwards, there is a distinction between autonomy as, if you like, self-determination, which is what is the prime element or component of autonomy that now it is proposed. But there is a second component, which is the matter of self-government: because for freedom to exist in communities necessarily we all have to restrict our autonomy. There are zillions of examples of that. It is the appropriate balance of self-government as well as self-determination that makes it a healthy and appropriate society. If we are looking at these situations—I give this example of letting go and people, as it were, taking the word "autonomy" as self-government—people can let go of life; people do let go of life. There is very good evidence from Oregon, for example, of patients electing to stop food and fluids. Their deaths are rated as eight out of 10, with 10 being excellent, and they die within about two weeks. The interesting thing, if one talks to somebody about letting go, a component of that is stopping eating and drinking as you withdraw from the world. All of these kinds of things are achievable, and actually they are respecting the autonomy of the individual as self-government rather than purely self-determination.

  Q368  Bishop of St Albans: Really a sort of statement, which is that I was once asked by a friend who is a lecturer at the University of Birmingham if I would give him an instant and gut-reaction to his question: what is the most important thing you know? I can assure you my response was not that I have personal autonomy. In other words, it related to other people, and I was therefore very grateful indeed to the comments that he made?

  Dr George: The cases I referred to earlier on that I have given you in this submission from today give you number of examples of this kind of management.

  Q369  Baroness Thomas of Walliswood: Dr George, I think you said—I was taking notes rather rapidly, but I think you made two statements. The first one was that, "An Act based on the Bill would not be defensible in court". I am not quite sure what you meant by that. The other one was, I think you said, "How many people are we willing to have killed in order for the benefit of the Bill to be given to a few people"?

  Dr George: Yes.

  Q370  Baroness Thomas of Walliswood: That is, I think, the slippery slope argument?

  Dr George: No, it is not the slippery slope argument.

  Q371  Baroness Thomas of Walliswood: That is what I want to ask. If you could expand on those two, rather roughly?

  Dr George: Yes. Thank you very much for that point. I am not happy with the slippery slope argument because it requires a causal initiator and it requires a gradient, and usually moral turpitude amongst medical colleagues is not something that I would consider. I consider my Dutch colleagues to be every bit as moral and decent practitioners as I am, I would hope, and my experience of them suggests that. Therefore, there must be another reason why the extension of euthanasia is from voluntary assisted suicide euthanasia, and so on, to non-voluntary or even involuntary euthanasia. It seems to me to be because there is a paradigm shift and that, once you redefine death as a moral good or a medical treatment, which is what it is here, then it changes its classification at a stroke. It becomes a moral good and therefore it becomes, under the rubric of our entitlement to heath care, an entitlement potentially for anybody. For example, why should we subject psychiatrically distressed patients, or children, or demented patients, or patients who have just had enough, or patients who are so miserable with the consequence of having lost a child with suicide and want to die because of their depression—what entitles us to restrict those patients, whom we would define as incapable, to have an assisted death, or what I would call, because it is a medical killing, a therapeutic killing? There is no position for that. If you look at Dutch case law, Dutch case law shows that demonstrably. And it is not that there is a slippery slope, it is that there is a paradigm shift from death, if you like, being seen as a harm to death being seen as a good. Once it is defined as a good, then it becomes a good that is reasonably available to everybody else under the grounds of justice; and anybody going to a court of law, even were this statute in place, under case law, I am sure, would make those arguments far more effectively than I have just made them; and we can see that in the development of case law in Holland over the last 15 years. I will give you the references, and there is a diagram that I have drawn which shows it a little bit more graphically and clearly. I do not think this is a slippery slope argument. I think it is a paradigm shift with an adjustment into a new medical paradigm. And, interestingly, the Dutch have hit a bottom-line on that paradigm, in that they rejected the wishes of a gentleman who is, I think, 83 or something, who was just tired of life, and the court said, "No, being tired of life is not a justification to die". But 16 per cent in the UNWE Tickler(?) paper of 2003, Dutch doctors are now saying they are concerned about the economic pressure that is coming upon them as a result of assisted dying, and that is expected because it is a utility now. It is no longer a harm; it comes into the balance of utilities. And, if you have a resource problem, why waste it on the dying when you can use the resource elsewhere? Any economist could say that to you in the hard-nosed world we live in today.

  Q372  Earl of Arran: Two quick questions to Dr Tate. Would you accept that it is very unlikely that palliative care will be rolled out across the NHS at any time?

  Dr Tate: No, absolutely not. I think it is a requirement of the new NICE guidance, which was published earlier this year, the guidance on supportive and palliative care for adults, and there are already plans in place in order that the skills of general practitioners, nursing staff and non-experts can be increased and improved so that palliative care will be much more available.

  Q373  Earl of Arran: So you are really optimistic that it could happen in the years to come, that it could be throughout the NHS?

  Dr Tate: I would certainly expect so, yes.

  Q374  Earl of Arran: Expectation is slightly different?

  Dr Tate: I am not responsible for the total roll-out, but my ambition would certainly be to contribute to that happening and to contribute to the education of all my generalist colleagues in order to improve the care.

  Q375  Chairman: Can I just get it right. NICE is the Institute of Clinical Excellence?

  Dr Tate: I am sorry; absolutely.

  Q376  Earl of Arran: The second question is perhaps slightly unfair, because they are not here to talk on behalf of themselves, but my understanding is that Macmillan nurses, very close to you, are neutral on this subject. Is that correct?

  Dr Tate: I am afraid I do not know the answer and I would defer to my colleague, who may be able to help.

  Ms Robinson: As far as I am aware, Macmillan nurses have not been surveyed, and all the methods that have been adopted to elicit any nurses' views who care for people at the end of life need to be strengthened, because at the moment all we have are straw polls, telephone questionnaires and postal questionnaires.

  Q377  Earl of Arran: But, of course, you are very close indeed to Macmillan nurses, not quite the same thing but very nearly. Marie Curie I am talking about naturally?

  Dr Tate: Marie Curie Cancer Care I am not here immediately to speak of, but all of those who are involved in the delivery of specialist palliative care would be included, I think, in what Vicky Robinson was talking about, that we would need to do robust surveys of their opinions in order to be able to give you that evidence. We do not believe that such surveys exist at the moment.

  Q378  Lord Joffe: If I could start by asking a question of Miss Robinson. You are appearing on behalf of the National Group of Palliative Care Nursing Consultants?

  Ms Robinson: Yes.

  Q379  Lord Joffe: How many members are there of that?

  Ms Robinson: We have just got our fifteenth member

9   Note by witness: Groenewood JH et al Clinical problems with the performance of euthanasia and physician-assisted suicide in the Netherlands New England J Medicine 2000; 342:551-6. Back

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