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


Examination of Witnesses (Questions 120 - 139)

THURSDAY 16 SEPTEMBER 2004

The Lord Joffe

  Q120  Chairman: That is right. I am not doing more than raising this issue.

  Lord Joffe: That is very helpful.

  Chairman: Lady Finlay, do you want to add something, because I am going to stop for a while, and I have a number of questions on this sort of line that I want to ask so that we understand fully the provisions of the Bill.

  Q121  Baroness Finlay of Llandaff: Thank you, my Lord Chairman. You say much about the autonomy of the patient being paramount and you did say in your initial opening remarks that you saw this as the beginning of a stage which would extend in incremental stages.

  Lord Joffe: At the beginning of the legislation.

  Q122  Baroness Finlay of Llandaff: Yes.

  Lord Joffe: It was a first stage and possibly the final stage but there could be subsequent stages.

  Q123  Baroness Finlay of Llandaff: The previous Bill did not restrict the euthanasia or physician-assisted suicide to the terminally ill. I wondered why you felt that those people who deem themselves to be suffering unbearably but have a long prognosis are not eligible, whereas those people who will be dying anyway in the foreseeable future would then be eligible to be killed?

  Lord Joffe: May I first say that to use emotive language, "to be killed", actually sounds almost pejorative. I think it is "being assisted to die that" I would prefer, for myself, but obviously it is a matter of personal preference.

  Q124  Baroness Finlay of Llandaff: Perhaps we should stick with "having their life ended"?

  Lord Joffe: Yes, "having their life ended" would be fine. When we considered the opposition to the previous Bill, we felt that there was such strength of feeling in the debate about extending it to younger people who had a long lifetime ahead of them, that we thought it wise, coming back to my point about moving in incremental stages, to limit it to terminally ill patients who were already suffering terribly and had a very short time to live. But I can assure you that I would prefer that the law did apply to patients who were younger and who were not terminally ill but who were suffering unbearably, and if there is a move to insert that into the Bill I would certainly support it.

  Q125  Baroness Finlay of Llandaff: Could you tell me just a little bit about the cost background to your Bill, the costing of the implementation of your Bill?

  Lord Joffe: We have no adequate information at the moment on costing. I think with a Private Member's Bill one is concerned, I am told, to deal with the principles of the Bill. You come to it without any real resources as a Private Member and you raise what you think is an important and ethical matter which will hopefully subsequently be taken up by government, who will then consult widely and will address matters such as cost.

  Q126  Baroness Finlay of Llandaff: The reason I come to cost is that I am not sure in your safeguards quite where you will safeguard against a perception by a patient, which may not be said to them by any one individual, that they are costing their family or the NHS a large amount of money by their ongoing care, and that therefore their death should be expedited out of some sense of duty to prevent this ongoing expenditure.

  Lord Joffe: In talking about the expense—and it is admirable to think that any patients would be bothered about the expense to the NHS—it is important to appreciate that the patient has only a short time to live, so the amount of expense is limited by the time period that they will survive. The question of expense, on the experience, as I understand it, in Oregon and The Netherlands, has not been a major issue with almost any patient, although I could think of circumstances in which it would influence a decision. But if when the consultant speaks to the patient about their unbearable suffering, they say they are suffering about the cost to them, I do not think that would be sufficient reason by itself to persuade anyone that that justified their being assisted to die. It might be a factor, together with a number of other related factors.

  Q127  Baroness Finlay of Llandaff: You say in the Bill that the patient must be informed of the process of being assisted to die. Could you take me through exactly what information they should have to fulfil the conditions within the Bill?

  Lord Joffe: At that stage they have been taken through all the other processes already, but it comes up early in what the doctor is saying, so the doctor would tell the patient about all the safeguards in the Bill and then would say at the end of it, "If you still insist on dying, you will be provided with drugs which you may or may not take."

  Q128  Baroness Finlay of Llandaff: I think there is a little bit more, with all due respect, to the process of being assisted to die, in terms of the need to inform the patient that if they take the drugs orally they may fail.

  Lord Joffe: It would depend on the statistical evidence, but there is a very remote chance that it would fail. If you refer to the evidence in Oregon, it has never failed so far, although it did take one patient 48 hours to die: he was in a coma all the time, and the doctor had explained this to the family that it could happen—and the family, as it happened, were quite satisfied with what eventually happened and the patient was unaware of it.

  Q129  Baroness Finlay of Llandaff: Given the concerns about the doctor having to be convinced that there is unbearable suffering—which is a subjective judgment at the end of the day, and therefore he would be obliged to take the patient's word for their perception of their suffering being unbearable—I had wondered why in fact you had not suggested taking the whole thing outside medicine and having a completely separate service. Because you are talking about a single lethal dose which would be vastly higher than any therapeutic dose, and if you are going to give barbiturates and curare—and curare certainly is not used in the community, I would have thought, almost never—so that it would be a drug solely limited to the process of assistance in dying?

  Lord Joffe: I am not sure what the question is. I am sorry. It might be because I am not medically educated.

  Q130  Baroness Finlay of Llandaff: I am wondering why not take it completely outside medicine, so that you do not change the tenor of clinical care and you have a completely separate service—you could call it thanatology service.

  Lord Joffe: I think that is an interesting thought which deserves further considerations. We have thought about it and we have learned that in The Netherlands doctors really worry about assisting patients to die—it is not something they move into enthusiastically and it causes considerable concern. But on the surveys which have been taken in The Netherlands, and certainly in Oregon, the sense is that doctors often feel that actually that is part of their treatment of a patient whom they have known for a considerable time (if they have known them for a considerable time), and they feel that they have done the right thing by their patient. Some doctors might feel that actually they want to be involved; it is part of the treatment for the patient of whom they are very fond and want to assist. That said, there would be some doctors who did not feel that, and I think that further consideration should be given to the point that you make.

  Q131  Baroness Finlay of Llandaff: If you view physician-assisted suicide and euthanasia as a therapeutic option, do you accept then that every doctor has a duty to inform the patient of the therapeutic options available in their situation?

  Lord Joffe: I have thought about that very carefully and have taken medical advice on that subject from an expert in this field, and they say that, in the stages of an illness, at the beginning one would not raise it. Gradually the patient might become worse and worse, and they would have the benefit of palliative care hopefully, and they may then feel that they really wanted to ask for assistance to die—and of course if at any stage the patient raises the matter, then there is a duty on the doctor to discuss it openly with him or her. If, on the other hand, the patient does not raise it and is suffering unbearably towards the end stages of their life, then I think there would be a duty on the doctor to raise this as one of the other options—not the preferred option, but an option that exists. It is interesting to see the way they do it in Oregon. In Oregon everybody who enters into a hospice is given a form. Over here, if you are undergoing treatment your doctor will give you a description of what is involved and the side effects, and in Oregon there is a form, which is prepared by the Hospice Association, which goes to the patient which sets out in, I think, the most compassionate way the various options, including the option to die. I would be very happy to distribute this standard form which they use in Oregon to the members of the Committee.

  Q132  Baroness Finlay of Llandaff: I have a slight difficulty with "option to die" because, sadly, all the patients who are terminally ill automatically have that option.

  Lord Joffe: I am sorry, I was endeavouring to be briefer than I normally am: "all the patients who are asking for assistance to die" if that covers the point that you wish to make.

  Q133  Baroness Finlay of Llandaff: The last point I would like to come to is the assessment of competence and the recognition in the Mental Capacity Bill that the competence required to take a decision relates to the size of the decision taken. I wondered, therefore, what safeguards you would have in for the clinician, where the family have not been informed and not been involved in the process, whereby after the event they would come and challenge that the patient was not actually fully competent to take such an enormous decision, even though they may have been perfectly competent to decide where they want to go, what they want to wear and what they want to eat, and, indeed, to be informed about their symptoms and the effective symptom control that they have?

  Lord Joffe: I think that is a point that we have been considering. I think that it is implicit in the Bill that, at the time the patient is assisted to die, and certainly actively being provided with the drugs, they should be competent and that the doctor should give attention to that, because they are given the option to revoke their declaration at any stage and in order to revoke it they have to be competent. I think that is an area which does need attention and which we might feel should be included in the Bill. Might I add, again, let us compare it with the lack of safeguards in all the other end-of-life decisions, where competence apparently is not something which is raised continuously—although the case might be that it ought to be.

  Baroness Finlay of Llandaff: I think it will be.

  Q134  Chairman: Lord Joffe, I have a number of questions of the same type, as I was asking earlier. Could we go back to clauses 1 and 2. The consulting physician is said to be required to be independent of the attending physician, and you gave the illustration of not being a partner or anything like that. What else? One of the ideas that I think this is dealing with is the sort of idea of two who have very much the same idea—you know, that if the attending physician thinks the suggestion should be in favour of assisted dying, then he knows the consulting physician to get who would support that. You want really to strike at that, I imagine, and suggest that they should be utterly independent, one from the other?

  Lord Joffe: It is a question of balance. I think it might be difficult to get the right consultant and in that event you should be able to use someone who is known to you as the attending physician regardless of the fact that you have used them before. But I think independence seems to mean that there is no financial relationship certainly between the two. I would hope that the GMC/BMA in preparing the guidelines would give attention to this question of what in the real world does this mean, and give guidance to doctors.

  Q135  Chairman: Basically, it is the absence of any financial connection anyway?

  Lord Joffe: Yes.

  Q136  Chairman: That is essential?

  Lord Joffe: I think that is right.

  Q137  Chairman: Could we come on to the definition of terminal illness, please, which is quite fundamental to what you wish to have in this Bill. You say "inevitably progressive"?

  Lord Joffe: Yes.

  Q138  Chairman: ". . . the effects of which cannot be reversed by treatment (although treatment may be successful in relieving symptoms temporarily) . . ." I have the impression that some of these illnesses anyway can have considerable, what is described as, "remission". Is that intended to be covered by "relieving symptoms temporarily" by treatment?

  Lord Joffe: That was the intention, yes.

  Q139  Chairman: The next point is immediately following, and it is the point to which Lady Finlay referred—the "unbearable suffering" definition depends on the patient's subjective view of the matter?

  Lord Joffe: It does.


 
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