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


Examination of Witnesses (Questions 2178 - 2199)

WEDNESDAY 2 FEBRUARY 2005

DR CHRISTOPH REHMANN-SUTTER and DR MARGRIT LEUTHOLD

  Q2178  Chairman: Thank you both very much for coming this afternoon to help us in our investigations into the background circumstances in Switzerland that relate to the Bill that Lord Joffe has proposed for consideration in the House of Lords to alter the law of England and Wales in relation to matters of which you are informed. Our system is that a shorthand note will be taken of what you say. We invite you this session together because although you are representing different institutions there is a good deal of common information between you about these matters. Would you please first of all introduce your view of these matters from the Swiss point of understanding in order that we may have a general overview of where you see these problems, and then members of the committee will want to ask you questions about their particular concerns? You will get a chance to review the transcript to make sure that it is what you thought you said and then that transcript will become public property when it is corrected and appended to the report and the report is published.

  Dr Leuthold: I am Margrit Leuthold. I am Secretary General of the Swiss Academy of Medical Sciences. It is a foundation which has existed for 60 years and one of our main tasks is to establish medical ethical guidelines in all fields of medicine. There are critical issues to consider and we would like to give practitioners and the nurses advice on how to deal with these issues in practice by the patient's bed. The process of dying and what to do is a big issue in our Academy. Before I go into a bit more detail it is good to give you a general background about the history of the whole subject in Switzerland. I do not know whether Christoph would like to say anything.Dr Rehmann-Sutter: No. I would appreciate it if you could do that.

Dr Leuthold: Please correct me or give additional information if I forget something important. Under Swiss law there is this paragraph in the Penal Code, paragraph 115, which says that assisted suicide is not forbidden in Switzerland so a legal case cannot be made out of it if the person assisting is doing it out of pity or high moral attitude, but if you want to get the house of your neighbour and try to do it that would not be according to the Penal Code. That is how it has been fixed for many decades under Swiss law. What is also important to realise is that it is not restricted to medicine or to physicians or to a special group of people. The Penal Code is for everybody. Because we have this Swiss law it has never been forbidden to assist in suicide, whether it is a physician, a nurse or anybody else. This is the background to it. The Swiss Academy of Medical Sciences established guidelines in this field ten or 15 years ago, saying very clearly that physician-assisted suicide is not a part of medical practice. It is outside what a medical doctor has to do. Also, we refer to the moral tradition in medicine in Switzerland, but it does not explicitly say that it is forbidden for a doctor. It is regulated like that. In 2003—and I am sure you are familiar with this study—Switzerland was one of six European countries taking part in a study and it became for the first time very clear from the figures that in Switzerland there is quite a high number of physician-assisted deaths of any sort, active euthanasia and also physician-assisted suicide. It is one per cent out of all death cases and of that 0.7 per cent is euthanasia and 0.4 per cent is physician-assisted suicide. It became clear that it is a reality in Switzerland as well as in other countries in this regard, and also because there are cases which are recognised by the Swiss Academy of Medical Sciences where patients can be in a situation where a doctor cannot just step away from the bed and say, "This is no longer my business". This was the initial point from which to revise our guidelines. This was a long process which took us two years. We established a committee which was put together from all kinds of disciplines—nurses, theologians, medical doctors of course, and also a lawyer was in there. These people tried to set up these new guidelines. Last year they underwent a long process of consultation so that everybody in this country had the right to give their comments or recommendations on these guidelines. They went over them once again and added some points and left out some others, and this is the final version which was printed and translated at the beginning of this year, so this is very new. Coming to the point of physician-assisted suicide, it is on page 6. I do not want to go into every detail but the most important point is that we changed the formulation we had in the former guidelines and now it says, "In this borderline situation a very difficult conflict of interests can arise for the doctor". If a patient is terminally ill (I have to add this because it is important) these guidelines refer only to the last few weeks of a patient's life. This conflict of interest is described as follows: "On the one hand assisted suicide is not part of a doctor's task, because this contradicts the aims of medicine. On the other hand, consideration of the patient's wishes is fundamental for the doctor-patient relationship. This dilemma requires a personal decision of conscience on the part of the doctor. The decision to provide assistance in suicide must be respected as such." This is one of the key sentences because in the old version it only said that assisted suicide was not part of a doctor's task, full stop. We added this, "In any case, the doctor has a right to refuse help in committing suicide", which is also important. "If he decides to assist a person to commit suicide, it is his responsibility to check the following preconditions", and there are three of them. One is, "The patient's disease justifies the assumption that he is approaching the end of life". The second one is, "Alternative possibilities for providing assistance have been discussed and, if desired, have been implemented", which refers to palliative care and other matters. The third point is, "The patient is capable of making the decision, his wish has been well thought out, without external pressure, and he persists in this wish. This has been checked by a third person, who is not necessarily a doctor". These are the three conditions and then the final sentence of this paragraph is very important: "The final action in the process leading to death must always be taken by the patient himself". As you may be aware, active euthanasia is forbidden also by the Penal Code, Article 114. This is referring to this Penal Code, so that the last act has always to be done by the patient himself or herself. These guidelines, as you can imagine, have been discussed quite heavily also in the press but the large majority of our physicians and nurses agree with this change towards a slight opening of the possibilities at the end of life. I am happy to give you copies of this.

  Q2179  Chairman: Thank you very much. Would you like to follow now, Dr Rehmann-Sutter?

Dr Rehmann-Sutter: I have to start with an apology. We do not have an English translation of our ten pieces which our committee published in September last year, but I am sure you have a German version. I can try to express some of the key elements of it orally.

  Q2180  Chairman: The interpreter can translate it for you.

Dr Rehmann-Sutter: Thank you. It is a very short text. I am the President of the Swiss National Advisory Commission on Biomedical Ethics. When we started our work on end-of-life issues we saw that the Academy already was in this field of discussion and had started a revision, which we have just heard about from Margrit, and we tried to add a more societal perspective because we are a counselling body to the parliament and to the government.

  Q2181  Chairman: That is the Federal Government?

Dr Rehmann-Sutter: Yes. Compared with you Switzerland started the discussions from the opposite direction. As you have heard, we have this situation where assisted suicide is permitted except if the person who assists has selfish motives. The law does not say which kinds of motives he or she should have, only which kinds of motives are not allowed. In the case of self-interest it is banned but otherwise it is not. At the time when this legal provision was introduced in the 1940s—-

  Q2182  Chairman: 1942, we are told.

Dr Rehmann-Sutter:—- there were no organised offers of assisted suicide. I hear you have met EXIT.

  Q2183  Chairman: We are going to meet them tomorrow.

Dr Rehmann-Sutter: These organisations are a product of the 1980s and 1990s. That was one of the key things that introduced in the view of our Commission a new element into the discussion from the point of view of society as a whole. It changes the moral quality of assisted suicide in some way and our main question was, in what way shall we introduce the moral quality of assisted suicide? Perhaps I should start with where we ended. We ended up supporting the principles of this legal provision but we were concerned with the impossibility of the state having legal oversight of the practice of these organisations. That was the main concern at the end. Perhaps I should mention a few points which were important in our procedure. We consider suicide as always a tragedy which involves a kind of violence against oneself and sometimes also against others. We see also that the law has a role in suicide prevention. Swiss law, like other legal systems, sees the appropriate answer by society to a person who makes an attempt at suicide not in punishment but in help and support first of all in order to make a second try less probable. That was the second point. The third was that we saw not only a legal difference between assisted suicide and euthanasia but also a moral and ethical difference. More precisely, active direct euthanasia is where another person has to bring somebody to death on demand. The main difference is that control over the act is in the hands of the person who decides to try. That makes it an action of a different moral quality because the actor is a different person. The second aspect (which is also important in my view) is that the person who has to help or who decides to help is not killing. It makes a difference for him or her too also from a retrospective perspective, seen afterwards, because for the conscience of that person it does not include an act of killing and the person who wants to die does not have to get somebody in to kill him or her. It is not necessary to bring a friend or relative into this position of having somebody else killed. These were the main aspects that made us think that assistance in suicide is from an ethical perspective something different which allows us to have different social norms around it. Then the question is, of course, what is the morally appropriate answer of the legal community to society, to somebody who is ready to do such assistance, and we saw that there are two deep-rooted values which are key in this field. One is respect and the other is care, respect in the way that Margrit Leuthold has expressed it, as a decision which is well made, which is considered, either the decision by somebody who wants to help or by somebody who sees no alternative other than to go into death. The other value, which is equally important, is care in the sense of responsibility for the person who is in such a dreadful circumstance that they see no other way out than to go into death. In the direction of keeping somebody in life it is not a responsibility or a care in the sense of doing the best for him to do what he or she wants to do efficiently but also to keep him here, to change perhaps the situation in such a way that life gets meaningful again or gets attractive again or less dreadful. This includes also medical assistance, which has a high value in our society, so we see it as a moral value of care and responsibility for those who are in danger of getting suicidal. A further point was the psychiatric evidence, that this autonomy of a person who says, "I want to kill myself" is not only something which is a matter of fact, that somebody has this decision and that is the end of the story. It has a history and it has a history which is ongoing. It is a process and it has its ambivalences in it. Psychiatrists have told us (and we have one on our Commission) that this autonomy in the case of persons with a wish to commit suicide or a wish for death is not just a free and informed decision like, for example, participating in a set of study or filling out a form but a decision of somebody who is under circumstances of distress, of fear, of lost hope, therefore also something that could in principle change again. Given this evidence, this does not mean that we have to consider every person as a psychiatric case or every decision as a decision which cannot be turned round in the other direction. There is also the respect necessary but perhaps not blindly. These elements made us say that the state has this duty to provide an oversight of the activity of those organisations offering help for suicides to make sure that they follow minimum requirements of assessment, that they do the technical thing well. We believe that they perhaps do not put enough weight on the lengthy process of evaluation and assessment of the person or on giving support to the person to make him or her possibly change their mind again, to see what in his or her circumstances could be changed in order to make things better. That is the main thing. In terms of medicine we followed the recommendation made by the Academy that in principle it is not an action that can be deduced from the roles of medicine. It is in this way not normatively spoken of as part of medical practice. Medical doctors are whole persons, citizens, and they should also have the right to make a decision by their conscience. The state should not tell them under which circumstances it is ethically legitimate to provide assistance to suicide. The state could perhaps say under those circumstances it is not legitimate but in the end the decision about legitimacy has to be made by the person himself or herself. That was very important in our recommendation. Perhaps the most controversial recommendation (which is in our TG6) is about the activity of hospitals, and perhaps we will have another round of discussion about this. We said in short that every hospital or institution of long term care should be explicit about their policy on whether or not to allow organisations to come in to provide this help, so that somebody who makes a choice of in which hospital or in which institution he or she wants to go can take that into consideration. On the other side it means that our National Ethics Committee does not say that hospitals should never do it and that is the controversial point.

  Q2184  Chairman: Thank you both very much indeed. I wonder if I could ask Dr Leuthold about the practice of medicine in Switzerland. The ordinary person will have a doctor to whom they go from time to time and that relationship will last for quite a long period of years. Would that be the ordinary arrangement?

Dr Leuthold: In the countryside it still is like that: you have a long term established relationship with the family doctor, sometimes going over decades, but when you enter hospital this liaison is no longer as strong as it might be in the countryside. You enter a different system and sometimes the family doctor is still close and can have contact and give his experience of a long term relationship to the hospital doctors but this is now the exception rather than the rule. In this regard the system is different compared to Holland. They are also in the process of physician-assisted death. I think their family doctor has a different role.

  Q2185  Chairman: You say that in the country districts the situation would be for the person to have a long-standing relationship with his general practitioner. In the cities is it more in the nature of partnerships now?

Dr Leuthold: There specialisation is much more common so you go usually directly to a specialist, an oncologist or a gynaecologist or whatever. In the big cities not many citizens have a family doctor in the traditional sense.

  Q2186  Baroness Jay of Paddington: Can I ask a question which follows on from that in relation to the question of assisted suicide? This is probably my failure to appreciate the complexities of the situation in Switzerland, but if you want to take advantage of the law around assisted suicide do you always have to be part one of these organisations like EXIT or DIGNITAS in what you have just discussed with Lord Mackay? If you lived in the countryside could you ask your general doctor to do this for you or could you approach someone who you were involved with or, as you say, on a more casual basis in a city? How does the system work?

Dr Leuthold: It has not been outspoken so far really. This one per cent which is in that table is the grey zone. We know that it happens but we do not know exactly how it happens.

  Q2187  Baroness Jay of Paddington: You mean you know it happens apart from the people who are recorded by the organisations?

Dr Leuthold: Yes.

  Q2188  Baroness Jay of Paddington: So if I lived in a small village without access to one of these well-known organisations it would be much more difficult? Is that the point?

Dr Leuthold: It really depends on the relationship you have with your doctor and also his or her moral attitude. I could imagine, but this is, as I said, in this grey zone and this whole investigation has been made on an anonymous basis. The doctors filled out all these forms and sent them in anonymously so you could not follow up who it was and who did what in the practice. I could imagine that that corresponds to the reality in that, for example, an oncologist has a relationship with a patient for a couple of years and then the terminal phase begins and the patient asks, "I just cannot support life any more. Could you help me?", and in this kind of contract of mutual trust the doctor does not just abandon the patient in the last phase of his or her life. With this respect of the autonomy of the patient in this grey zone it then happens. I know myself only very few doctors who would stand up and say, "I have assisted in suicide with some of my patients".

  Q2189  Baroness Jay of Paddington: Even though this has been something which has officially been part of the system for a very long time?

Dr Leuthold: It is in a sense not allowed but it is not forbidden, as Christoph Rehmann described, if there are no selfish motives, but also in Switzerland it is not a subject which is treated openly and frankly. It is, as I said, in this grey zone.

  Q2190  Baroness Jay of Paddington: That is interesting, is it not? For example, and I am sorry to persist but as we are discussing this, when we visited the state of Oregon in the United States they said that because the people we heard evidence from (and of course we did not speak to everybody) felt that because there was this availability of assisted suicide the discussions about end-of-life practice and so forth had become much more open.

Dr Rehmann-Sutter: We could observe this also as an effect, that the discussion becomes more open, in that we have at least these numbers now. For example, we know about the range of magnitude per year done by EXIT and from there we can also have an idea of how many are done by medical doctors privately or which involve medical doctors. It does not necessarily involve a doctor.

  Q2191  Baroness Hayman: That was what I wanted to ask you about because in the recommendations about putting in place a framework where there would be reporting and there would be a code of practice, perhaps based on what the Academy of Medical Sciences have put forward, were you recommending that that should apply to non-physicians as well? As I read the legislation (or the lack of legislation), if a partner or a child of someone who was suicidal and asked for help, which was not from prescription drugs but it could be a pillow over the head,—-

Dr Rehmann-Sutter: A pillow? I am sorry to interrupt you but a pillow over the head would not be considered as a suicide.

  Q2192  Baroness Hayman: "Help me keep the plastic bag on".

Dr Rehmann-Sutter: That is a margin case perhaps. Providing a pistol, yes.

  Q2193  Chairman: In other words the patient has to do the final act in assisted suicide?

Dr Rehmann-Sutter: Right.

  Q2194  Chairman: The assister can go quite a long distance but the ultimate decision and act for assisted suicide has to be with the patient? Am I understanding it right?

Dr Leuthold: Yes.

  Q2195  Baroness Hayman: The final act, if someone is crushing some tablets, putting them into a mug for someone else, spoon-feeding them, but the swallowing is done by the patient—this can go very near.

Dr Leuthold: Right.

  Q2196  Baroness Hayman: My question is again back to the individual who is not a doctor. Would you be suggesting the same sort of framework for that person as for a physician? I am sorry; I was not listening as closely as I should have been. You talked about four conditions, one of which was a terminal illness. The law as it is does not talk about terminal illness at all. Were you recommending that this should be within the framework only of terminal illness?

Dr Rehmann-Sutter: No, we did not do that. We did not have a recommendation that it should be done also in other circumstances but neither did we recommend that the law should be changed or narrowed to a condition of terminal illness. The law allows that anybody can provide this help, not only medical doctors, to persons in whatever phase of their lives, given that they are competent.

  Q2197  Baroness Hayman: Did you have any discussion about a difference between competence and depression, for example, because there are levels of depression which would not make someone incompetent for a range of decisions but which might make people very uncomfortable about assisting, carrying through a decision for suicide? Psychiatric assessment is really what I am asking about.

Dr Leuthold: This is one of the crucial issues, that you should be able to exclude depression or any other mental illness if you want to check whether it is a patient's free will which leads him to this final wish. Our psychiatrists gave us the idea, at least this was my impression, that this can be done rather accurately so you can as a trained psychiatrist say whether this is depression or not. We rely on this expertise but, of course, in practice it is absolutely crucial that you can exclude that.

  Q2198  Baroness Hayman: You talked about the very clear ethical difference between administration and assistance so that the last act had to be that of the patient themselves and the fact that the actor was a different person made a big ethical difference. Could you explain to me how one applies that to another end-of-life decision, a competent patient who wants to discontinue life-saving treatment, a patient who is currently on life support who is able to express their wishes—I realise it is very few but it happens—for life support to be turned off? They cannot do that act themselves and yet this is something that we accept because we define it as refusal of treatment. I wonder where the clear division is on who is the actor on this one.

Dr Rehmann-Sutter: That is a good question. If you disconnect somebody from a life-saving machine then you let nature take its course, but nevertheless you have least the negative responsibility of not continuing. If you have the clear wish, the clear desire, of the ill person, I think that also makes a moral difference to active euthanasia. We did not have from our committee a recommendation on this and I think this will be one of our next topics of discussion. I see there is a difference but clearly not the same one as there is between active direct euthanasia and assistance to suicide.

  Q2199  Chairman: Of course, in many of these treatments that are covered by the general description that Lady Hayman gave some degree of maintenance to keep the system going has to be put into it. There is an active ingredient to continue the treatment and the discontinuance of the treatment may involve more or less activity. The thing may just die off if you do not continue the ventilating system so that there are grades of interference required. The crucial point from your point of view, I understood, Dr Rehmann-Sutter, was that in the case of the turning off of invasive life-prolonging treatment the crucial distinction is that in that case when that treatment is turned off it is nature taking its course that causes the person's death and that is not suicide, whereas suicide, according to the Swiss view of it, must be a killing by the person themselves. If you are going to have what I might call the benefit of Article 115 of the Code it has to be a decision by the patient and an act by the patient that finishes the patient's life and that involves a competence to take such a decision. A patient who is not capable of deciding, because of mental illness or something of that kind, is not committing suicide because they have not got the capacity to make the decision to kill themselves. Is that right?

Dr Leuthold: That is right, yes, and you are not allowed to assist in this, so this is the most important prerequisite. I would agree; I see the difference as you describe it. It is a very good question. In the first situation you take away something which has artificially prolonged life with some help from technical support, which determines how long you live on. In the other case you add phenobarbital to the system, the human being, and this is where the killing occurs.


 
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