Examination of Witnesses (Questions 2325a
THURSDAY 3 FEBRUARY 2005
LULEY and DR
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
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
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
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
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.