Examination of Witnesses (Questions 1580
- 1599)
FRIDAY 17 DECEMBER 2004
MR JACOB
KOHNSTAMM and DR
ROB JONQUIERE
Q1580 Baroness Finlay of Llandaff:
I do not, no.
Mr Kohnstamm: Dutch doctors are not very different.
Dr Jonquiere: When I received a request for
euthanasia—and I hear this also from my colleagues—when
a patient said, "Doctor, this is unbearable for me. Please
help me die", the first reaction as a doctor is, "Oh,
my God! A request again!", and I will find whatever I can
to prevent it.
Q1581 Baroness Finlay of Llandaff:
What I find difficult when we get requests like that is, if you
ask the questions behind the request, the request vanishes. I
have never had a persisting request.
Dr Jonquiere: I completely agree. That is what
I would do. I would immediately ask, "Why is it unbearable
for you?" and then we talk about it.
Q1582 Baroness Finlay of Llandaff:
Are you monitoring that every Dutch doctor who looks after patients
has the skills and competencies to ask behind the request? Do
you have the evidence that they all have the knowledge, skills,
and competencies to deal with the problem adequately?
Dr Jonquiere: If you talk in this sort of scientific
way, my answer must be no, I have not. I do not have all 8,000
family doctors in my hand and cannot show you what they do.
Q1583 Baroness Finlay of Llandaff:
No, I mean you in terms of the country. Is there a national standard
to assess that those doctors performing euthanasia have the skills,
competencies and knowledge to deal with the complex problems that
these patients pose?
Dr Jonquiere: We do not have evidence for that.
The evidence we have is only that we see that cases which have
been monitored by SCEN doctors, for example, have been put through
careful decision-making, and we see that doctors who are getting
requests and who are prepared to comply with requests have, maybe
not the capacity and skill in the particular field of palliative
care and things like that, but know where to get that.
Mr Kohnstamm: There is perhaps another way of
answering the question, if you would allow me. We are the only
country in the world where there has been such investigation in
the practice of life-ending decisions by doctors. Without being
rude, you have not had the sort of investigation in your practice
as we have had. Whatever you do, I would urge you—and I
think that you will be talking to van der Wal later—to do
that sort of research on the situation in Britain. Then we should
talk again.
Q1584 Baroness Finlay of Llandaff:
I am asking about medical competencies.
Mr Kohnstamm: One of the conclusions from that
research was that, in almost all the cases of euthanasia, the
length of life would otherwise have been another week or eight
days. So the specific situation—which you are rightly talking
about, because it is a very difficult situation—is that
in Dutch practice, as we know from the van der Wal and van der
Maas research, the person who asks for euthanasia and who gets
it in the end will on average live only eight days less than he
would have lived otherwise. In the vast majority, therefore, of
up to 95 or 98 per cent of the cases, the situation you are pointing
to would not in the end come to the decision for euthanasia.
Q1585 Baroness Finlay of Llandaff:
I am not here to pass judgment on what you are doing in any way.
I am here to understand the process, because we have a proposed
piece of legislation in the UK and we have to understand it in
the context of a UK system, which is very different to the system
in Holland. You are fortunate in having a very high standard of
general practice, with doctors who are mostly Dutch graduates.
That is very different to the situation in the UK. What I was
wondering about were the competencies, skills and knowledge of
the SCEN doctors, the second-opinion doctors, in terms of their
ability clinically to know all of the options, and to be sure
that all of the options had indeed been offered to the patients.
Dr Jonquiere: SCEN doctors are specially trained
to fulfil this duty and to have the skills you are talking about.
You could argue that a SCEN doctor should have all the skills
of palliative care and of psychology. However, the other side
is that, as Jacob has said, first of all 85 per cent of euthanasia
is performed by family doctors, and part of the skills you need
are part of the training schemes for family doctors. In the last
five to 10 years, and interest in training in palliative care—as
one of the alternatives in treatment for patients with terminal
illnesses, not alternative to euthanasia—has grown in terms
of postgraduate education. Of course, it can always be better
than it is at present. Doctors, especially when they are confronted
with these sorts of requests, find that sometimes they are lacking
certain levels of skill and they ask SCEN doctors to fulfil that
duty instead of them, or they refer to specialists, and so on.
My point is that, because doctors find the request so difficult—and
the most difficult request you can get as a doctor—that,
in itself, is the reason why they try to find whatever way they
can not to do it. If they find that they lack the skill, they
will try to find it with a colleague and ask a colleague about
it. That is not evidence-based by research but it is what I hear
from many colleagues and also from practices out in the field.
Baroness Thomas of Walliswood: My question
was in some ways a much simpler one. I apologise for going back
to this euthanasia statement, but that is just the background.
I am concerned about the possibility of performing euthanasia
on patients who have lost their capacity, through Alzheimer's
or any other similar kind of mental deterioration. That is definitely
one of the aspects which people are referring to when they talk
about the slippery slope—the concept that a doctor might
be able to take a decision to terminate the life of a patient
in that situation. Can you tell me if it makes a difference whether
or not the patient has made a euthanasia statement? That is the
first thing. Second, how can you determine whether a patient is
really suffering when in fact they are not capable of communicating
with you verbally?
Q1586 Chairman: There are two points.
First, if there was no statement, would that make a difference?
Second, if Alzheimer's disease, for example, has put you in a
situation where you cannot communicate, how can the doctor make
a judgment on whether or not there is unbearable suffering?
Dr Jonquiere: My answer is quite simple. If
there is not a statement, there is no question of terminating
a life. That is completely clear. Having this law also makes it
completely clear for doctors. If there is no request, they will
not do it—full stop. With regard to moving towards the slippery
slope in this way, I am not afraid of that at all. What I always
say is that we have 30 years of experience. If a slippery slope
was going to happen in this way, it would certainly have happened
in The Netherlands—because we have been involved in this
process for 30 years. You do not need to be afraid of that, therefore.
If there is an Alzheimer patient with a statement—so, legally,
with a request—that is a dilemma in The Netherlands, on
which we organised a symposium last week, attended by 300 doctors.
They say, "We cannot judge what the suffering is". Many
doctors consider—and I believe that it is formulated as
such in the Council of Europe—that dementia as such, Alzheimer's
disease as such, is never a reason for euthanasia.
Q1587 Lord Carlile of Berriew: So
why is it in here?
Dr Jonquiere: It is a request only.
Mr Kohnstamm: Why could not an individual think
that, in a situation of dementia, he does not want to live any
more?
Q1588 Lord Carlile of Berriew: The
answer to that is that you are a campaigning organisation, and
you are advising your members that any one of these (a) to (d)
situations is a sufficient situation to make a request.
Mr Kohnstamm: No.
Dr Jonquiere: We are not advising, no.
Q1589 Baroness Thomas of Walliswood:
I am trying to get my mind round under what circumstances, with
this request—
Mr Kohnstamm: It would be sufficient?
Baroness Thomas of Walliswood: Yes, exactly—would
be sufficient—when, as several doctors have said both on
this and the other side of the table, when talking about this
situation, you cannot tell whether or not the patient with dementia
is suffering, and I think that some people reach the conclusion
that they are not suffering. How can you then satisfy the criterion
of the law which says that the patient has to be suffering—I
have forgotten the exact phrase—
Q1590 Chairman: The translation we
have been given is "lasting and unbearable".
Mr Kohnstamm: "Hopeless."
Baroness Thomas of Walliswood: It is
obviously lasting, but is it unbearable? How can you tell that?
I can assure you that there are many people in the United Kingdom
who, when using the word "euthanasia"—which we
are not using in this Bill, and we are talking about "assisted
suicide", which is not quite the same thing—
Chairman: "Assisted dying."
Q1591 Baroness Thomas of Walliswood:
Yes, "assisted dying". This is exactly the sort of thing
that people fear: that they or their loved ones could be living
in a situation which seems perfectly intolerable, and they will
be bumped off because they have lost their mental capacity. That
is a real fear; it is not a false fear. How do you get over that
problem under Dutch law?
Dr Jonquiere: I think we get over that problem
because doctors are saying to families of Alzheimer patients—and
it is the family of the Alzheimer patient which presents the statement—"I
am sorry, I cannot decide whether it is unbearable or not".
One of the biggest guarantees, which I know from my own experience
but also from that of my colleagues, is that if you finally, after
a long discussion and after moral deliberation, decide to go forward
with euthanasia, the moment you give the last injection—which
is euthanasia from our point of view—you want to look your
patient in the eye and to say, "Is this really what you want?
If I now give you this injection, it is the finish". If,
at that moment, the patient says no, you stop the whole process.
That is the big problem with an Alzheimer patient: you cannot
ask an Alzheimer patient. That is what doctors say to us, and
it is why doctors, in practice, almost never apply euthanasia
to an Alzheimer patient.
Mr Kohnstamm: I am also learning from this discussion,
but you could also make the same law as the Dutch law—without
the advance directive. It is very feasible. I do not like this
discussion very much. I know that it is very important, but it
only applies to 0.0003 per cent of the cases of euthanasia in
Holland. If you are afraid of the slippery slope and if you want
to concentrate on this discussion, you are welcome to. We are
in your hands. However, if you want to regulate something—and
I am not going into that discussion—you could easily do
it without the advance directive.
Chairman: There is no question at the
moment in this particular Bill of a proposal for an advance directive.
What we are investigating here is the practice in The Netherlands,
and you have presented this example. I think that it has produced
a certain amount of—what should I say?
Lord Carlile of Berriew: Concern.
Q1592 Chairman: Concern, or discussion.
However, in the light of the questions that Lady Thomas has asked
you, my understanding is that, at the very most, such a statement
as this could supply a lack of request in an Alzheimer patient,
for example, but it does not replace the need for the doctor,
at the time he is considering administering euthanasia, to satisfy
himself—however he can do it, and I do not know whether
he can or not—before euthanasia becomes lawful here in The
Netherlands, that the patient is suffering unbearably and that
that suffering is lasting, in the sense that it cannot have any
hope of being ameliorated or improved. Is that correct?
Mr Kohnstamm: That is correct.
Dr Jonquiere: Yes, that is correct.
Q1593 Lord Taverne: You have referred
several times to the elaborate discussions that take place between
the patient and the doctor, and the transparency which is now
part of the Dutch procedure. To many of us, and I think to many
members of the public, the fact that there is this open discussion
of end-of-life scenarios is one of the attractions of the Dutch
system. The question I have, however, is how far is this great
openness, this much more frank discussion with patients, a result
of the practice and law of euthanasia, or how far is it simply
a feature of Dutch culture, where directness is a national characteristic?
Is it something which was going on anyway, or is it something
which has been promoted or facilitated by the law and the practice
of the law?
Mr Kohnstamm: It is a difficult question, because
it goes back to the nature of a country, and the culture then
comes into it. Speaking for myself, I think that the main difference
in the situation before the law and after the law is that, before
the law, an individual request was, as such, considered to be
almost a criminal act. That is no longer so. The difference is
that frank discussions were already taking place between doctors
and patients—I would think because of the Dutch culture
of wanting, perhaps more than is reasonable, to have the discussion
in public and to be as frank as possible in such a discussion.
However, before the law, if I had gone into the family physician's
surgery, he could have said to me, "What you are asking is
a criminal act"—which makes it much more difficult
to start the discussion at all, because almost no one would want
to ask someone to perform a criminal act. Since the change in
the law, there is less difficulty in having these frank discussions.
As to the figures, as far as we know from the research, there
is not very much difference in the number of cases of euthanasia.
I think that you are right, therefore, that partly it is because
of the culture and these frank discussions; but there is also
a difference between the pre-law and the post-law situation.
Q1594 Lord Taverne: As far as the
discussions and the knowledge of involuntary euthanasia are concerned—the
1,000 cases which have been referred to—what is the evidence
about the position in other countries? There is reference to the
fact that these are not out in the open and they are not discussed.
There is very little knowledge about it. What research has been
done on that?
Dr Jonquiere: Comparable research has been carried
out in the Flanders and in the northern region of Australia, which
had a law—for just six months, 10 years ago. They used the
same kind of questionnaire as van der Wal has used. So, in a way,
you can compare these three countries or regions. What he has
found out—
Q1595 Lord Taverne: "He"
being . . .?
Dr Jonquiere: Professor van der Wal. He found
out that the percentage of euthanasia—because it was not
legalised in Flanders and Australia—was obviously lower
than in The Netherlands, but it was still there, using the definition
"termination of life on request". The involuntary euthanasia,
or the termination of life without request, in those two regions
was four to five times as high as in The Netherlands. As far as
I can see, in the comparison of the research in the three areas,
there was no evidence to believe that the high percentage of involuntary
euthanasia in other countries was not the same as in these two.
As I said earlier, one of the problems in discussing the Remmelink
1,000 is that we made ourselves vulnerable by presenting these
bad figures—that is, "We do it 1,000 times a year"—compared
with other countries where it is much higher, because there is
no legalised possibility to make a pro-euthanasia choice. Secondly,
if you take the 1,000 and look at what kinds of problems there
are in involuntary euthanasia, these are the cases which I referred
to as the sort of life which you would not let your dog have—the
well-known comparison that dogs have an easier death than human
beings. That percentage is still too high in The Netherlands.
However, if you take it as a proof of the slippery slope, I always
say that, although it is a very small percentage, the percentage
in The Netherlands is going downwards and not upwards.
Mr Kohnstamm: As a politician, I have been talking
about this issue in many different countries in the world. My
main problem is that there is not a good answer to the question,
"Can you compare it to what happens in other countries?",
because in the other countries there is not the same sort of research.
I would argue that, to have a decent outcome to this discussion,
the same research should be carried out in several countries,
in order to see what the differences are, and if you could argue
whether or not these differences are reasonable.
Dr Jonquiere: There has been research in six
European countries and, unfortunately, not in France, Germany
or the UK.
Q1596 Chairman: The advantage of
our being here rather than in France or Australia is that we are
trying to find out what happens here. What, if anything, we can
find out about France or Australia we may have to see. So far
as what happens here is concerned, I would like to ask you about
the way in which, as a matter of practice, information is collected.
If euthanasia has been performed under the statute law introduced
in 2001, the doctor who performs the euthanasia has to prepare
a report. That report has to show in what way his decision to
perform the euthanasia was justified, including the written advice
he or she received from the SCEN doctor. That has to go in. When
the death occurs, the coroner has the duty of collecting that
material and putting it before the review committee which, among
other things, consists of a doctor. The review committee has to
review what occurred and see whether all the conditions that the
statute has laid down have been complied with. If they have, the
doctor is informed; if not, they inform the prosecuting authority
and the medical control authority. That is the way in which the
euthanasia decisions are monitored. Am I correct in that?
Dr Jonquiere: That is correct, yes.
Q1597 Chairman: What I am not clear
about is what happens in other deaths. There seems to be a requirement
of a coroner being involved, to the extent of the death being
certified—a death certificate of some kind. What I am not
clear about, and perhaps you can help us, is what information
requires to go on that death certificate in explanation of the
way in which the person in question died.
Dr Jonquiere: The regulation in The Netherlands
is that a coroner is only involved in a death certificate if there
is a question of unnatural death. So if a treating doctor is confronted
with a dead patient, he is allowed to make a death certificate
saying that his patient died because of natural causes and, in
a separate, anonymous form he fills in what the underlying disease
is and the cause of death. This is for the statistical evidence.
If the treating doctor is not convinced of a natural death, he
has to report that death to the coroner. Depending on the opinion
of the coroner as to what has happened, he can even have the body
transported to a facility where—
Q1598 Chairman: For a post-mortem?
Dr Jonquiere: For a post-mortem. That is the
decision of the coroner. The law regarding euthanasia states that
euthanasia is still an unnatural death, and so the treating doctor
is not allowed to fill out a death certificate. That is why he
has to bring in the coroner.
Q1599 Chairman: There is a point
about words in Holland, because I understand that, strictly speaking,
"euthanasia" is used to signify a death in which there
has been a request, either by advance directive or otherwise.
The 1,000, or whatever the figure, is not strictly speaking euthanasia,
in the Dutch terminology, because there has, in the nature of
things, been no request.
Dr Jonquiere: Yes.
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