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

Examination of Witnesses (Questions 2440 - 2460)



  Q2440  Chairman: On the initial visit of the patient he or she is seeing one of your people that work in this area and the certificate that they have to get from the doctor will normally bring out, will it, if there is any psychological or psychiatric problem, because it might be difficult on a single visit for somebody who was not a fairly well trained psychiatrist to notice that there was something deficient about the person's capacity? You rely to some extent anyway on the medical certificate which at that stage you ask the patient to produce?

Dr Zucco: Right. Anyway, if there is the slightest suspicion that somebody may be psychologically ill it will be a long process. Even if the case is accepted it is not going to happen very soon because there will be more steps to go through to make it really very clear that this is finally the will of the person.

  Q2441  Chairman: As you have explained before, people have cycles of ups and downs and you have to ensure in the ordinary case even that it is a properly fixed determination that is at the basis of the request?

Dr Zucco: Yes, you are right.

  Q2442  Baroness Finlay of Llandaff: Moving away from competence for the moment, how do you determine whether a person has been subject to coercion?

Dr Zucco: That is a very good question. It is very difficult because it is very difficult to know exactly what the family situation of a person is. You can ask as many questions as you want but finally some people are not even very willing to answer your questions on this subject. I have already seen many people say, "This is none of your business. This is our family affair". The best way to make sure that we are accompanying the right persons is to try to stay in touch with them over a longer period and have contacts with them, for instance, even by telephone, and many things will develop that you do not see during the first visit.

  Q2443  Baroness Finlay of Llandaff: I was wondering about the situation of an old person who is in care, where the family are having to pay for the care and the financial pressures are mounting. What do you do about those cases?

Dr Zucco: These are from our point of view very difficult cases because sometimes you can assume that there is pressure from the relatives but sometimes it is the person himself or herself who wants to die, maybe because he or she feels that he is putting pressure on the relatives. These cases are extremely difficult to decide. What we have to do finally is to make sure 100 per cent by talking repeatedly to the person that this is really his or her wish to die. There may be cases where we make the wrong decision. I cannot exclude that. This is typical of every activity.

Dr Hotz: Maybe in reality you have to realise that people who come to EXIT in large part have terrible health problems, cancer mostly, these people are in a terrible state and they want to die. You see relatively quickly that they mean it and that there is not pressure from the family. They are suffering, they have a terrible life. We have about 150 cases per year and out of these 150 probably 100 are also urgent cases where we have to act quickly, so this problem is probably not such a large problem. Then you have others maybe who are not so sick but in my experience the people who decide to come to EXIT and make an assisted suicide have a very strong character. You need a strong character to fix a date and say, "Saturday next week: that is the day I go". You just do not do that out of pressure. These are very minimal exclusive cases and I think even in these cases there would be a remark in these talks, maybe even at the last moment. I think it is not such a big problem. You have to see it in proportion. We have about 150 cases in EXIT per year. That is not so many cases.

  Q2444  Baroness Finlay of Llandaff: And you said about 100 of those are cancer patients?

Dr Hotz: About two-thirds, that is about right.

Dr Zucco: This changes, of course, every year. Last year was the year when we had the most cases. I will give you the exact figures. Last year we had 154, the year before 121, and in the previous years it was about 100. I still think that there are certain borderline cases where you have to make a decision that maybe is not the correct decision. This is a risk that perhaps we cannot avoid.

  Q2445  Baroness Finlay of Llandaff: I want to ask you about the cancer patients specifically if I may. What are the symptoms that you are judging as requiring urgent suicide?

Dr Hotz: Suffocating, for instance.

  Q2446  Baroness Finlay of Llandaff: Breathlessness?

Dr Zucco: It depends on the disease. If it is cancer it depends what type of cancer.

  Q2447  Baroness Finlay of Llandaff: Oh, sure, but what I was wondering was what interventions are you making sure these patients have had to relieve their symptoms before you give them their dose of barbiturate? Do you have a procedure to make sure that they have had palliative care according to one of the European protocols, that you are using the European Association for Palliative Care pain control protocol, the protocol for dyspnoea? Are you using consultants in palliative medicine to see these patients for symptom relief to be sure that it is their will, not the symptom, which has driven them to despair?

Dr Zucco: It is very important to consider that. We are not the only interlocutors of these people. They are in touch with their surgeons, with their families, and these questions are being discussed back and forth.

  Q2448  Baroness Finlay of Llandaff: But we know that palliative care in Switzerland, with all due respect, is not well developed.

Dr Zucco: It is not very well developed. I have an example. In Basel there is what we call a hospice. This is a place where people go to die. When somebody who is an EXIT member goes to die there we are not allowed to accompany him in that clinic. What normally happens is that we have a three-party discussion: the patient, somebody from the hospice and somebody from EXIT, and we offer the patient two different approaches. One is the EXIT approach and the other one is the palliative care approach which in Switzerland maybe is not very well developed but it goes very far. When I say it goes very far I mean that the doctors are prepared to give the patient very high amounts of morphine, for instance, to control their pain and by doing this very often the death process is accelerated. What happens in fact is that the patient can say, "I take the EXIT approach, which means I have to go home again and then I have to drink this barbiturate so it will be a matter of minutes to die", or he can accept the alternative offered by the hospice, which is that in two or three weeks he does not get any food any more, he gets high doses of morphine and finally he is going to die that way. It is up to the patient to decide. What is always very important in our opinion is that the patient sees the different alternatives that he has and by having these meetings with all the people involved you are very sure that the patient finally decides what he thinks is good for him.

  Q2449  Lord Joffe: You have written guidelines and principles which set out your policy and how you go about it. Could we have copies of these documents?

Dr Zucco: We have our statutes and then we also have guidelines, recommendations.

  Q2450  Lord Joffe: Could we get copies of these documents?

Dr Hotz: Those are our internal documents which we are not handing out except to the police authorities. The police authorities have these guidelines but we do not give them to everybody. That is an internal paper which is restricting us and we want to keep certain literature. There are always exceptional cases and we do not want that suddenly somebody comes and says, "Oh, this is against the recommendation you have". We sometimes have very unusual cases. We have the Ethical Commission which decides about these very unusual cases and we do not want to be too much restricted with those patients. We also have the Compliance Commission. We check on every case where there has been a going and in other cases where we were not active. We check every person together with these recommendations.

  Q2451  Chairman: You gave us numbers, 151, I think.

Dr Zucco: 154 last year.

  Q2452  Chairman: Is that for EXIT in one area of Switzerland or is it for the whole country?

Dr Hotz: That is EXIT in the German speaking part and the Italian speaking part.

Dr Zucco: I do not know if you have been informed about that. There are two EXIT organisations. They are separate. They just happen to have the same name because they were founded by the same person. There is one EXIT for the Swiss alone, which is the French speaking part of Switzerland. Our EXIT is responsible for the German speaking part and the Italian-speaking part. The figure of 154 covers the German speaking part and Ticino.

Chairman: Can you give us the population and the total number of deaths in the area covered by your EXIT, that is, the Italian and the German speaking parts? I just want to get an idea of the proportion of assisted deaths in your organisation in relation to the total number of deaths and the total population of that area.

  Q2453  Baroness Hayman: Perhaps the total number of suicides as well.

Dr Zucco: A study has been done in the past covering about ten years. During these ten years, which was up to the year 2000, it used to be that the people who died with EXIT were about five per cent of people who committed suicide. It was about 0.1 per cent of the total people who died during that time. Recently, because the number of accompaniments has increased, it is approaching ten per cent of suicides.

Professor Schwarzenegger: You can give us an address and we can send you the study because it is available in English. That is one point. The second point is that I was never informed that the palliative care in Switzerland is at such a low level. That is a new thing for me. Legally I think it is assured that the autonomous decision by the patient is kept up, so that means either he can select palliative care and then he enters into this indirect active euthanasia debate, which is allowed according to Swiss criminal law, or he takes the EXIT way which was described before, which means assisted suicide where it must be an autonomous act by the person himself. It is not that people are under pressure to select EXIT or commit suicide, at least according to my studies.

  Q2454  Chairman: I think the point is that obviously, as Dr Zucco and Dr Hotz said, perhaps Dr Hotz particularly, some of these people are very ill and so there is no question about particular types of pressure. It is a pressure of the illness that is so obvious, but the pressure of the illness can be affected by the extent to which good palliative care is available and I think that is probably the relevance of palliative care to what we are concerned with.

Professor Schwarzenegger: Of course.

Dr Rippe: There is no contradiction between these two ways. In EXIT there is general agreement that it would be better to have more palliative care in Switzerland. Switzerland has its own foundation which puts money into the palliative care field. The most important point is to see if the person is autonomous or forced by the disease and then the possibility to choose between these two options, but we fully agree that there should be more palliative care in Switzerland. It is not so bad but it is bad enough.

Chairman: It is not an uncommon situation the world over.

  Q2455  Baroness Hayman: I have a very quick question about residence qualifications. You explained to us that you disagree with DIGNITAS about non-residents. I think I saw some figures that it is not nationality that you work on; it is the issue of residence.

Dr Zucco: Yes.

  Q2456  Baroness Hayman: Could you tell me what the qualifying period for residence is to be a member of EXIT?

Dr Zucco: There are no rules from the side of EXIT but to become a resident in Switzerland is not an easy thing. It is excluded that somebody can become resident because he wants to die in Switzerland. This would be a very long term thing that would be required.

  Q2457  Chairman: It is the general legislation that determines when you can become a resident.

Dr Zucco: Yes.

  Q2458  Baroness Hayman: So if I were an expatriate working here and the first week I was working here I wanted to join EXIT I could not?

Ms Summers: Probably if you were working here you would have a resident permit as an expat.

Dr Rippe: I think that is two questions.

  Q2459  Baroness Hayman: It is the definition of residency that is the key point.

Dr Rippe: The other question is whether EXIT will do it. That is an open question.

Dr Zucco: We handle that from case to case. We also have cases of people coming from abroad to die here. We want to be flexible on this subject. We do not want to promote this suicide tourism but on the other hand if somebody in the UK has relatives in Switzerland, for instance, the mother lives in Switzerland and the son is in the UK, and the son wants to die with EXIT, in such a case we may decide that we accept the case. It depends very much on the circumstances. There was a case recently of a German citizen who had lived in Switzerland for 20 years and then he went back to Germany. He is still a member and if he should decide that he wants to die with EXIT we would accept the case. That is why we do not have very strict rules of residency.

  Q2460  Baroness Hayman: It is not the minimum three months, six months? You do not have a rule like that?

Dr Zucco: No.

Chairman: Can I thank you very much indeed, all of you, for your help. Sarah, you have not had a chance to contribute but I know you contributed to the paper. Thank you very much indeed.

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