Examination of Witnesses (Questions 1660
- 1679)
FRIDAY 17 DECEMBER 2004
PROFESSOR GERRIT
VAN DER
WAL, DR
BREGJE ONWUTEAKA-PHILIPSEN
and DR AGNES
VAN DER
HEIDE
Q1660 Chairman: That is attitudes
to the statute?
Dr Onwuteaka-Philipsen: To the statute, yes.
Q1661 Chairman: People thinking,
first, that it is good to be clear what the law is, so that prosecutions
would happen within the law and, second, that the law is good,
in that it has made a statute provision for review of the cases—a
regulation of control. Is that right?
Dr Onwuteaka-Philipsen: Yes.
Professor van der Wal: That is right.
Q1662 Chairman: That is 91 and 92
per cent?
Dr Onwuteaka-Philipsen: Yes, it is a large majority;
and I know that there is a large majority that has confidence
in their doctor. We also asked that in this questionnaire, but
I do not know the percentages.
Professor van der Wal: We can provide you with
that.
Q1663 Chairman: The 91 and 92 per
cent that you have just referred to—these are your studies?
Dr Onwuteaka-Philipsen: Yes. Also the other
one, but I do not have the figure here.
Q1664 Chairman: The other question
was about the vulnerable groups.
Dr van der Heide: Obviously one of the main
ideas behind the judicial procedure is to protect vulnerable people
from unjustified euthanasia, but in our studies—which are
of course quantitative, large-scale studies—we do not have
very specific details on these groups. But that is partly the
result of it not being a major problem among these groups. As
far as disabled people also suffering from terminal diseases,
they are treated similarly to other groups of people. We did not
encounter in our death certificate study or our interview study
any indication or evidence that disabled groups are involved more
than other groups in end-of-life issues—not in euthanasia
but also not in other types of end-of-life decisions. So it is
not a topic on which we have very hard data but, on the other
hand, we did not encounter any indication that there was a problem
either. I am not aware of patient groups or any other groups that
are really worried about this aspect of the Dutch system. There
are no large public worries about this issue over here, I think.
Professor van der Wal: Do you consider older
people to be a vulnerable group?
Q1665 Chairman: I suppose the older
they get, the more vulnerable they get. That would be my feeling.
Professor van der Wal: Otherwise, we could say
something about that issue.
Q1666 Chairman: Yes, please.
Dr van der Heide: We repeatedly find, from 1990
onwards, that euthanasia and especially assisted suicide are not
typical for the elderly age groups but rather for people who die
at a somewhat younger age. The number of cases among people over
69 or 70 years of age is relatively low, and the percentages are
highest for people who are between 60 and 70. That is the group
where the occurrence is highest. The frequency is relatively low
among the elderly people.
Q1667 Chairman: Can you give us the
percentages, roughly, in the last study?
Dr van der Heide: It is in the paper in detail.
Q1668 Chairman: We can get it then.
Professor van der Wal: You can get it.
Dr Onwuteaka-Philipsen: It is five per cent
of all deaths until 64 years of age, and 3.3 per cent of all deaths
between 65 and 79 years, and 1.4 per cent over 80.
Q1669 Baroness Finlay of Llandaff:
Have you any studies that you did before the change in the legislation
began to come in, so pre-1994?
Dr Onwuteaka-Philipsen: In 1990 we had a study.
Q1670 Baroness Finlay of Llandaff:
And that was the same methodology that you were using?
Dr Onwuteaka-Philipsen: Yes.
Q1671 Baroness Finlay of Llandaff:
Do you now have any studies going on longitudinally to look at
bereavement?
Professor van der Wal: At bereavement?
Q1672 Baroness Finlay of Llandaff:
Yes.
Professor van der Wal: No.
Q1673 Baroness Finlay of Llandaff:
Any longitudinal studies of following families?
Dr Onwuteaka-Philipsen: No, there is a study
on bereavement done by somebody else.
Q1674 Baroness Finlay of Llandaff:
That was a point incidence study, not a longitudinal study.
Professor van der Wal: It is an interesting
question.
Q1675 Lord Carlile of Berriew: I
am not sure whether this is longitudinal or not, but I wanted
to know if any research has been carried out to ascertain the
views of the families or carers of euthanasia-deceased people,
to discover what their views have been of the process. Associated
with that, having looked at the Dutch voluntary euthanasia society's
advance directive documents I would be interested to know if there
are examples of cases in which relatives did not wish euthanasia
to take place, because they valued the continuing life, whatever
the state of it, of a member of their family, whereas the person
who died did wish euthanasia to take place and it was performed.
Dr Onwuteaka-Philipsen: In 2001 we did a study
among relatives of people who died from euthanasia and of cases
that were reported. There we generally found that they very much
agreed. Of course they did not like that their relative was dying
but they finally agreed with the decision and were okay with it.
Of course, these are reported cases, so it might be a selection.
I think that on most occasions the family is at least involved
in the decision-making, although they do not officially have a
vote in it, so to speak, or a say in it. Generally, however, I
think that they are involved in it. I do not think that it is
very often that they do not agree and that the person does agree,
but we do not have very clear figures about it. We just know that
they are involved. The other thing was about the advance directives.
In practice it rarely happens—or, at least, we have not
encountered it—that an advance directive is taken as a request
by somebody who is, by that time, incompetent.
Q1676 Lord Carlile of Berriew: Is
this because advance directives are a relatively new thing?
Dr Onwuteaka-Philipsen: No, I do not think so.
The advance directive has to have been brought up by somebody,
and then they also have to judge all the requirements for prudent
practice, including whether somebody is suffering unbearably.
That is very difficult in somebody who is incompetent. It mostly
involves dementia patients.
Q1677 Lord Carlile of Berriew: We
were presented with a pack by the NVVE which included three advance
directives of different kinds, of which one is the euthanasia
statement. I wondered whether these documents play any part whatsoever
in euthanasia decisions and, if not, what is the point of having
them?
Professor van der Wal: The point is that there
are so many people who support the idea of euthanasia for themselves,
especially in situations in which they have become incompetent,
having cancer in the last stage, or by becoming demented. In practice,
however, especially in demented patients—and we have done
some research into that subject—doctors are very reluctant
to respond to the request. In practice, it turns out as a non-treatment
practice.
Q1678 Baroness Finlay of Llandaff:
We have become aware that there are some doctors who are performing
euthanasia more often than other doctors, and we have heard about
suffering, which has to be judged by the doctor to be unbearable
in order, at the end of the day, to justify euthanasia. Is anyone
studying the difference between the way in which those doctors
who perform euthanasia more often make the decision that, yes,
suffering is unbearable—against those doctors who perhaps
have performed euthanasia only once or twice ever, and who have
turned down more requests saying, "No, this is not unbearable
suffering"?
Dr Onwuteaka-Philipsen: No. It would be good
research, I think.
Professor van der Wal: You have very good research
ideas!
Q1679 Chairman: Do you have a figure
in any of the studies of the number of cases in which an advance
directive was used as the request basis for euthanasia?
Dr Onwuteaka-Philipsen: We have not found them
often. There is an advance directive, but there is also the patient
who is still competent. Then it is the request of the patient,
but the doctor also wants it to be written down for the files;
they then use this advance directive for it. So it is not the
advance directive that is the basis for the request; it is just
to support. It is a document.
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