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


Examination of Witnesses (Questions 2325a - 2339)

THURSDAY 3 FEBRUARY 2005

PROFESSOR WOLFGANG HOPFF, DR HANS-R NA­EGELI, MR LUDWIG MINELLI, MRS SORAYA WERNLI, MR SILVAN LULEY and DR PETER REINHARDT

  Q2325a  Chairman: Thank you for agreeing to give evidence to us in our inquiry. What you say will be taken down by the shorthand writer. You will have a chance to review the transcript before it is published. It will then become part of our report and become public when our report is submitted. Do you want to make any short statement to begin with to show how your organisation works and what the position is of the various people who are here?

  Q2325b  Mr Minelli: We have sent you a memorandum and all that is necessary to say is in this memorandum and so I can shorten this part. Professor Hopff is President of our counselling board. If we have special questions we ask him or the lawyer, Felix Egli, who has today an assembly so he cannot assist here. Professor Hopff is a physician and pharmacist. Dr Na­egeli has been one of our collaborating physicians. He also has worked for EXIT in the German part of Switzerland for many years and he has great experience. Dr Reinhardt is one of our newest collaborating physicians. He has seen recently English people who have come to us in order to die and he can give you information about these cases. Mrs Wernli will speak in German or French and Mr Luley will do the translation if necessary. She is the head of the part where the accompaniments are organised. She is in touch by phone with the members who want to come to Switzerland and who have got a green light from one of our physicians. Mr Luley is the head of our office. He has a lot of phone calls from all over the world. We have about 4,500 members in 52 countries around the globe. He speaks German, French, English and Spanish. I am the founder and Secretary General of this organisation. I have been the legal adviser of two directors of EXIT in the German part of Switzerland, Dr Zeik and later Mr Hollenstein. They have had in their organisation power struggles and after the second power struggle I decided to found DIGNITAS which is an organisation where power struggle is not possible.

  Chairman: Thank you very much. We will go straight to questions in that situation.

  Q2326  Lord Joffe: Could you perhaps outline the procedure once somebody wants to become a member and then exactly how the process works if they ask for assistance to die? If you could take us through that it would be very helpful.

  Mr Minelli: We have phone calls, we have e-mails, we have faxes, where people are asking us whether we can help them. Then we ask their postal address and we send them our documentation in German, French, English or Italian. After that they will send us a membership declaration and when we have got that we send them a letter telling them that they are now a member. We tell them to pay the fees. We tell them how they can ask in order to prepare an assisted suicide, and then we are waiting. If somebody is eager to have our help very soon then they phone us and we tell them, "Please send us a personal request for preparing an assisted suicide together with medical documents". Sometimes, especially from the United Kingdom, people have difficulty getting copies of their medical records. I do not know why. I do not know whether this is legal or whether the UK physician says, "I will not give you copies of your records", but there is sometimes a difficulty. When we have the personal request and the medical documents we send them to one of the physicians who collaborates with us and ask him whether he would be prepared to write a prescription for pentobarbital of sodium for this person, always under the condition that he will see the person first, speak to the person and decide definitely after this interview. If he tells us yes we tell the member that the member has now the provisional green light and from this point on we may discuss the date to come to Switzerland. We prefer it if people come twice to Switzerland, firstly in order to see the physician, to have the definite green light and to go back, and then to come perhaps later, but if somebody is terminally ill we cannot ask that they come twice and so they come once. They see the physician, the physician writes a prescription and almost immediately after the assisted suicide will happen. If a physician has seen from the medical file that there are perhaps some possibilities to help our client's life he tells us and we are always in correspondence or phone contact with the member and we tell the member that there will be possibilities. Sometimes, if people with multiple sclerosis ask for help from the United Kingdom then our physicians tell us, "Why has this person until now not had the newest medicine, interferon?", and then if we discuss it with the member, the members tell us, "I cannot get interferon. It is too expensive for the National Health Service". In Switzerland there is no restriction. If somebody has multiple sclerosis they will get interferon in order to see whether the situation can be improved. Sometimes also people come to see our physician and our physician tells them during the interview, "You should still try another alternative", and we have seen several times that a physician has told them, "You should try morphine", if they have not tried that, and sometimes they return and try morphine and 14 days later they are back and they are telling us the side effects and pains are worse. If then we discuss a date in order for them to come to Switzerland for assisted suicide we discuss how they will come: by aeroplane, by railway, by car, even by ambulance or mobile home, and then we make arrangements to meet the person at the railway station or the airport and then we go with the person, after we have got the prescription, to our apartment and in the apartment there is waiting one of our collaborators who makes the accompaniment. At least three times we tell people when they come to us, "Listen: the fact that you have come to Zurich does not mean that you have said A and now you are obliged to say B. You are completely free to leave this apartment and to go back if you would like. That is no problem for us", and several times we have seen that people say, "Yes, I will go back and perhaps I will come later but I know now how it works. I have seen your apartment. I will go back". About one year ago we had a 27-year old Irishman, Martin Barry, and I can name him because he went to the radio station in Ireland and told his story. He had multiple sclerosis and I looked for him at his hotel in Zu­rich and made the transfer from the hotel to our apartment. He was in a wheelchair and a physician came to the apartment. He discussed it with Mr Barry and Mr Barry was quite firm that he would have the assisted suicide. The physician left and I told Mr Barry the second or third time, "I tell you again: you are completely free to leave this room, to go back and to come later if you wish". "No, no. I will die now", he told us, and then I said, "Okay. I will take with me your wheelchair but if you decide to go back a phone call in half an hour and I will be back in this room". I went to my house and I had not been here for half an hour and there came the phone call: Mr Barry wanted to go back to Ireland. This was a Friday. I went immediately back to town. I put my hand on his shoulder and said, "I congratulate you for your decision. You do not have to look now for a hotel room. You will be my guest until Monday when you have your return flight", and I had Mr Barry here in this house, in my guest room. On Saturday I discussed it with him. On Sunday my partner, Miss Schultler, and I went with him to the cemetery of Zu­rich Fluntern where James Joyce is buried and we visited the grave of James Joyce. After that we went to the zoological garden and passed three hours there. My partner told him, "Listen: you are a journalist. You could write a book", and I think he has now written the book and is looking for an editor. Recently he mailed to me, "I never expected that my 30th year would be possible for me. Now it is one year since this experience". Overall, about 80 per cent of the members who have got the provisional green light never call again. This green light is something so relaxing for them, they have been in such a heavy dilemma first about whether they will have to linger on through this illness until a so-called natural end or whether they should try to kill themselves by one of the common methods (which nearly always will fail), that when they have the green light this dilemma is destroyed and they can live better. We have put in for you a copy of a letter from the husband of a lady who has died with DIGNITAS and you may see what this husband has told us.

  Q2327  Baroness Jay of Paddington: You also included, Mr Minelli, which I thought was interesting, a letter to somebody who was suffering from Parkinson's Disease. This is the English letter. You say that he obviously has not tried some of the conventional therapies for Parkinson's, like Madopar. It seems from the point in the letter that he is somebody who does not like to take drugs. Is that correct?

  Mr Minelli: Yes. Mr Luley has written this letter and he can answer directly.

  Q2328  Baroness Jay of Paddington: What would happen to this man if, following your advice, which is for him to get treatment for his Parkinson's Disease and to use the Madopar, or whatever it may be, he came back to you and said, "I still insist that I do not want to take drugs and I want to go through with the procedures at DIGNITAS"?

  Mr Minelli: Then we would accept him. On the basis of my article, of which I have given you an English translation by Professor Eckstein at Cambridge, we think the right to suicide is guaranteed by Article 8 of the European Convention on Human Rights without any pre-condition, so even if a person comes and tells us, "I have no illness at all but I would like to end my life", I would think that the person has a right to make this decision and even has a claim against the state in order to get help because trying one of the common methods is so cruel because of the risk of failure that this treatment would not be practical and effective but rather illusionary and the European Convention has no illusionary rights and treatments which are practical and effective.

  Q2329  Baroness Jay of Paddington: That is the overriding thing? Mr Luley, you say in the letter, "Your decision about not taking drugs does appear a very irrational decision which cannot be supported and therefore does not allow a doctor to give his agreement to an assisted suicide for which, after all, he will have to carry the responsibility". In a sense you are saying to this man that there is a wider ethic, beyond the legal permission to commit suicide or have assisted suicide, which is important. Is that what the letter is saying? I am just trying to get to the bottom of the advice you give.

  Mr Luley: You might have seen that our motto in DIGNITAS is "Live with dignity, die with dignity". "Live with dignity" comes before "die with dignity". In a case where there is no evidence that the patient has tried to improve his situation, it sounds irrational to a doctor who will look at his request and thus he would say, "This person could improve his present state of health, his present quality of life, with a little effort". If the patient does not give any indication of that effort there must be, from a rational point of view, some doubt. Any doctor, looking at the request of such a person, would probably ask, "Why did he not do anything to improve his situation?". In this particular case I wrote this letter to give the patient something to think about, to clearly express that an organisation like ours, even though we say everybody has a guaranteed right, as Mr Minelli has just explained, we cannot by morals and ethics just blindly follow a request when there is not a clear reason. I think, at least, a person has to make a little bit of effort. They have to show that they have tried at least one treatment to improve the situation. That is why I wrote this gentleman the letter, as we have done in other cases too, to explain to them, "Try to improve the situation. We would like to help you. On the other hand, if at the end of the day the normal treatments do not improve the situation and you really want to go, there will be a door open for you".

  Q2330  Chairman: Can you give us some numbers, Mr Minelli, over the last few years? Can you tell us (a) the number of people who have approached you and (b) the total number of actual suicides that you have assisted as an organisation in these years?

  Mr Minelli: Since we have started we have had up to yesterday 362 people who have died with DIGNITAS. We have had about the same number of members who have died naturally within this time. I have no detailed statistics besides those that are published in our annual report but I have them in my head. The biggest group of members comes to us come from Germany and the second biggest group from the United Kingdom.

  Q2331  Chairman: When somebody applies for membership that is the only thing they are applying for in the first instance, is it?

  Mr Minelli: Yes, they apply for membership first.

  Q2332  Chairman: Is there a fee for membership?

  Mr Minelli: There is a registration fee, which is 100 Swiss francs, and an annual minimal fee of 50 Swiss francs. If somebody joins between October 1 and December 31 there is no annual fee for that year, only the registration fee of 100 Swiss francs.

  Q2333  Chairman: That makes them members of the association?

  Mr Minelli: Yes.

  Q2334  Chairman: You mentioned the total membership. That is for all countries, is that right?

  Mr Minelli: 4,500.

  Q2335  Chairman: That is the total for the whole world?

  Mr Minelli: Yes.

  Q2336  Chairman: How many of these are in Switzerland roughly?

  Mr Minelli: About 600 or 700.

  Q2337  Chairman: That is the first stage; you become a member. If somebody is not a member they would have to become a member in order to get any help from you?

  Mr Minelli: Of course.

  Q2338  Chairman: The next stage you have described is if somebody wants help. What sort of financial arrangements are there at that point?

  Mr Minelli: We have been forced to adjust our membership fees for special services at the beginning of this year because last year we did not have enough income to pay all our costs and so we decided at our last general assembly in December 2004 to introduce a fee for preparing an assisted suicide of 1,000 Swiss francs, and if we have to manage afterwards all the works with the authorities in relation to burial, another 1,000 Swiss francs.

  Q2339  Chairman: Is your organisation responsible when an assisted suicide takes place in your apartment for informing the public authority of the canton that that has happened?

  Mr Minelli: When a member has died in our apartment our collaborator has to phone the police, an emergency phone call, and he announces a DIGNITAS assisted suicide. After that a police officer, a sort of coroner and a legal physician will arrive and they have to make an instruction to look to see whether there is a crime or not. Up to now they have never found a crime.


 
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