Examination of Witnesses (Questions 2178
WEDNESDAY 2 FEBRUARY 2005
and DR MARGRIT
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.
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 2003and
I am sure you are familiar with this studySwitzerland 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 disciplinesnurses,
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?
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.
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
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
Q2182 Chairman: 1942, we are told.
there were no organised offers of assisted suicide. I hear you
have met EXIT.
Q2183 Chairman: We are going to meet
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
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
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
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.
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,-
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".
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?
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
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 patientthis 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?
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 wishesI
realise it is very few but it happensfor 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.
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.