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


Examination of Witnesses (Questions 2200 - 2219)

WEDNESDAY 2 FEBRUARY 2005

DR CHRISTOPH REHMANN-SUTTER and DR MARGRIT LEUTHOLD

  Q2200  Baroness Hayman: I can grasp this intellectually and see it very much from the position of the observer or indeed the doctor. I think from the patient's point of view, the patient who is terminally ill, the patient whose desire is to end their life as soon as possible, the distinction between how that desire is enacted and with what assistance depends on the lottery of what their disease is rather than to my mind an easy-to-understand ethical difference. These are the issues with which we are all grappling.

Dr Rehmann-Sutter: I perfectly agree with this. I find it very important to differentiate between different perspectives. You consider now the perspective of the patient as rather different from that of a doctor standing by or an observer or society which sets up norms. Let us go back to the difference between assisted suicide and direct euthanasia. You mentioned before that in practice those two might come very close. You mentioned key actions like swallowing which are minor things. We discussed that also in our committee and we ended this discussion in clarifying that from a descriptive perspective those actions might indeed be very close and perhaps nearly indistinguishable, but from the perspective of the subject who interprets his or her actions (and we need to consider both participants as moral subjects interpreting their own actions) it makes a great deal of difference, even if it is a minor step, if the patient knows this is the decisive step, "If I don't do that I will live on. If I do it I will die", and if the helper also knows that all he or she does, as the situation provides, is not by itself an automatic causation that leads to death but that the other partner knows that he or she can or cannot do this decisive last step. It depends on the understanding of those participating that even minor steps are really in an ethically important way decisive.

Baroness Jay of Paddington: And they may also be legally important. That really is the difficulty, is it not?

Chairman: Yes.

  Q2201  Earl of Arran: What about motor neurone disease, for instance? What would happen there, because the patient presumably is not capable of committing the final act himself or herself? The patient would have to have assistance there, would they not?

Dr Leuthold: We have discussed these cases as well. If you take, for example, an ALS patient, or two of them and one is still able to release the trigger and the other not, of course in practice then you have maybe a big difference because one can commit so-called suicide and the other not. The other has no more the possibility to commit suicide so he or she would have to live on because he or she cannot do the last act by himself or herself. In practice this could be a real dilemma and maybe an injustice because the one result is possible and the other not. Of course, we have also discussed this exact situation when everything is prepared, so you are as a patient deciding to commit suicide and everything is prepared and let us say everybody is waiting until you do the last triggering, and then of course there is the question, is there really free will? Is there a pressure to do it now?

  Q2202  Chairman: When everything is ready?

Dr Leuthold: Yes. It is very difficult for each individual case to have a fair, just system. I think it is almost impossible.

  Q2203  Chairman: So far as the system here is concerned at the present time the two cases that you have just referred to would be treated differently. The case in which the person with ALS or motor neurone disease can press the trigger and give the lethal dose would be suicide whereas the other one would not?

Dr Leuthold: That is the theory.

Baroness Jay of Paddington: I was going to ask how much you thought the legal theory was so in practice.

  Q2204  Baroness Finlay of Llandaff: Can I return for a moment—and thank you for your very useful presentations—to the psychiatric and psychological evidence that you took in relation to suicide? You referred to the anger associated with a suicide both within the person and also towards those around and their ambivalence, which one sees clinically with patients who will attempt suicide with very major serious attempts but then if they have not died they may express gratitude later on that they did not die even though their attempt was certainly life-threatening. I wonder whether, in the evidence you took, you considered, if we think about the two patients with ALS, the fluctuating ability of patients as well because their deterioration is not fixed, so a patient may be unable to do something one day but another day appear to have superhuman strength or willpower, sometimes even to sit up to greet relatives, and that burst of energy often towards the end is misinterpreted by family as a sign that they are getting better or improving whereas a clinician will recognise that it may be, if you like, the rise before the fall. They have a final burst of energy in life before they die and succumb to their disease and, as you said, die naturally. I wonder whether you considered the fluctuating clinical state in the way that you wrote your guidelines and considered formal assessment of competence, advising on a tool for depression for GPs rather than to psychiatric services always.

Dr Leuthold: We made our own task easier because we restricted ourselves to the last weeks of a person's life. The condition is formulated in such a way that this wish has to be stable over a certain period of time. We wanted to prevent or take out these few hours when the patient is desperate and then the next day he is better and the wish disappears, so this is part of the pre-condition, that his wish is stable not just over two days but over a period of time, which of course cannot be fixed to a certain number of days or weeks. It depends on the illness and it depends on the patient.

  Q2205  Lord Joffe: What was the rationale behind your decision to limit the recommendation in the guidelines to terminally ill patients? Was there anything in addition to the question of competence which made you arrive at that recommendation?

Dr Leuthold: These recommendations have the title "Care of patient at the end of life" and this part, physician-assisted suicide, is only a small part. The main focus is on palliative care, on helping a human being to die in a decent way. This is the focus of our guidelines. In the National Ethics Committee, where I am also a member, of course we treat the subject in its whole breadth, including psychiatric patients who are not at all at the end of their life, and all kinds of aspects, but this would have been far over the goal of these guidelines. We are very much aware that with this restriction we leave out huge questions around the whole issue which have now been picked up by the National Ethics Committee.

Dr Rehmann-Sutter: The guideline does not include a formal restriction to those cases?

Dr Leuthold: No.

Dr Rehmann-Sutter: But it has from the start had only these cases under consideration?

Dr Leuthold: Yes, because it is an end-of-life guideline generally.

  Q2206  Lord Joffe: So a doctor who, for reasons of conscience, helped somebody who was not terminally ill to die would not be acting illegally or contrary to the views of your Academy or your committee?

Dr Leuthold: I think your formulation is correct.

  Q2207  Lord Joffe: In framing your approach to the guidelines did you consider the possible effect of the legislation as it stands on vulnerable people like the elderly or the disabled?

Dr Rehmann-Sutter: Yes, this was also a concern, but it looked not so dangerous because it is already the situation in Switzerland that we have this Article 115 which allows it and it did not end in a huge number of assisted suicides. It was a concern, especially with regard to the circumstances in the near future when elderly people are a larger sub-population in our society when perhaps money is more restricted for a person, when more persons come into situations with restricted support, restricted medical and nursing aid and so on and perhaps come under a sort of pressure, also financially, not to depend on the family.

Dr Leuthold: I would say it still is a big concern and we have to observe very carefully the development and the effect on society as a whole of the values of a society such as Switzerland. What we can say from the experiences in Zu­rich, and I am sure you will learn more about it tomorrow, is that we introduced in 2000, I think, the legalisation that these organisations have access to homes for elderly persons who are chronically ill. Since then we have not observed a change in the numbers of people who would like to commit suicide, which is a sign that this practice did not really change behaviour or put pressure on or anything. This is also a very short observation period but I think everybody in this country is aware that this is a very delicate issue, that the value of the life of an old, ill person could deteriorate, not only because of the possibility of physician-assisted suicide but because of other more general tendencies in our society.

  Q2208  Lord Joffe: Presumably that is why one wants to produce a legal framework so that there are safeguards.

Dr Leuthold: Yes.

  Q2209  Earl of Arran: Does this make doctors very nervous about whether they are behaving legally or illegally?

Dr Leuthold: Maybe less nervous than in the United States or in other countries. So far we have never had such a case. We have had one or two where doctors clearly wanted to get rich and offered active euthanasia, I think, to some patients. However, in general, since we are a very liberal society and we have this liberal regulation by law, so far it has not been a matter for or against law. I think their own standards set up by the doctors' community was more in the direction of not getting involved in assisted suicide.

  Q2210  Baroness Finlay of Llandaff: The medical profession self-regulates, does it? The death certificate, of which I have been fortunate to be shown a copy, simply certifies that the person is dead. It does not state on the certificate why they died.

Dr Rehmann-Sutter: From the canton of Zu­rich?

  Q2211  Baroness Finlay of Llandaff: This is from Zu­rich, yes.

Dr Leuthold: In our guidelines—can I just have a copy for a second?—we have here also that the death of a patient as a result of assisted suicide must be reported to the examining authorities as an unnatural death for investigation.

  Q2212  Baroness Finlay of Llandaff: So they are reported?

Dr Leuthold: Yes.

  Q2213  Baroness Finlay of Llandaff: But if you had a lot of euthanasia or physician-assisted suicide happening and the doctor did not self-report, is there any way that you would know about it?

Dr Rehmann-Sutter: Probably not.

Dr Leuthold: No.

  Q2214  Baroness Finlay of Llandaff: The death certificate does not state—-

Dr Leuthold: It is a self-declaration.

  Q2215  Baroness Finlay of Llandaff: On our death certificates you have to write the cause of death and if your cause of death is not very precise or looks strange, for instance, if you have an awful lot with the same thing written on, then you may be investigated separately. How do you record the cause of death and where do you record it?

Dr Rehmann-Sutter: I do not know.

  Q2216  Baroness Hayman: Can I return to the issue of ALS patients and the problem of those who may have mental capacity but do not have the physical capacity to administer for themselves? Are they excluded by these guidelines?

Dr Leuthold: They would be excluded whether it is fair or not.

  Q2217  Chairman: You were making the point before about the total numbers of deaths in Switzerland and the total number in this area, which I got the impression was rather small.

Dr Leuthold: Yes. What I am talking about is 700 persons per year who either have physician-assisted suicide or euthanasia and out of those 700 I would say—and this is just a guess—that not even a handful would fall into that category. We are talking about a few individuals and, of course, for those individuals this is essential. Out of the vast majority of those who even consider committing suicide at the end of life I am talking about those only.

  Q2218  Baroness Hayman: We have had evidence that it is the patients with exactly these sorts of degenerative disease who have the most acute problem because they know that a lot of means that would be open to other people, for instance, to squirrel away their own tablets and wait until they have enough to attempt suicide in other ways, are not possible for them and in some ways they make the most emotionally powerful case for needing physician assistance, so there is some irony that they are the ones who cannot avail themselves of a liberal regime as you describe it.

Dr Leuthold: I agree with you. Even if you take these guidelines I would start with these patients to be included because if you have ALS patients you do not really know whether they will still go on for half a year or a year or if the end is quite close. If you take our guidelines in the very strictest sense we would not say that this is a terminal phase of life, and they could not be considered anyway.

  Q2219  Chairman: If you take the situation of the critical point about the person who has passed the ability to do it themselves, even the last impression of the tap or pump, it is not the guidelines that intrude on that; it is the law that says it has to be assisted suicide and suicide means killing yourself, so there must be sufficient physical and mental capacity left to enable a person to kill themselves before Article 115 comes into the picture. If you are not under 115 you are under one of the earlier clauses and these are penal clauses.

Dr Leuthold: There is, of course, a gap between theory, law and practice and if you look at these numbers it is one per cent for euthanasia and physician-assisted suicide in total and out of this one per cent 0.7 per cent are euthanasia, active or direct or indirect. The larger fraction is actually euthanasia in Switzerland despite this law.


 
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