Examination of Witnesses (Questions 1621
- 1639)
FRIDAY 17 DECEMBER 2004
PROFESSOR GERRIT
VAN DER
WAL, DR
BREGJE ONWUTEAKA-PHILIPSEN
and DR AGNES
VAN DER
HEIDE
Q1621 Chairman: Thank you for having
us here. The shorthand writer takes down the help you give us
and you will get a chance to review the transcript when it is
ready; and, all being well, it will be appended to our report
as we give it to the House of Lords and it becomes public at that
time. We would like to begin by inviting you to introduce yourself
and to say what your interest is in the area with which we are
concerned. We have a good idea of that. One of the questions which
is concerning us somewhat is why this figure of roughly 45 per
cent of euthanasia cases—and I use "euthanasia"
in the sense of requested euthanasia—do not seem to be reported
at present to the review committees. I know that you have researched
this issue by conducting interviews, with doctors interviewing
doctors, and you report on that. However, I definitely had the
impression yesterday, when we were at the Ministry of Health,
that they have a separate source of total figures: that is, death
certificates or certificates that come through the coroner to
the ministry—probably through other sources as well, but
ultimately to the ministry—which may or may not be a confirmation,
not of the detail but of the total number of cases. Perhaps you
could therefore deal with that. We would also be glad if you had
views to express on the level of trust that the people of The
Netherlands have in their family practitioners, and whether or
not that has been affected to any extent by the euthanasia law.
When I say the euthanasia law, I do not mean only the statute
law passed in 2001 but also the development of that law by the
courts and through the courts, and with the aid of the medical
profession's governing body, in the years before that legislation.
Finally—at least for this purpose, though I have no doubt
there will also be other questions—I would be glad if you
would deal with the question of whether vulnerable groups, particularly
the disabled, have been in any way adversely affected by the development
of the euthanasia law. We have certainly had some evidence in
the United Kingdom of disquiet amongst some disabled groups—I
make no comment on the extent—that, externally, people would
be apt to judge their lives as so restricted and hampered by their
disability that they were not able to have a life that was "worth
living", and therefore there might be a tendency to make
it easier for them to suffer euthanasia, possibly without consent
in that situation. These are the issues. There are many others,
but we would be glad if you felt able to deal with these issues
in your opening.
Professor van der Wal: Thank you for coming
to have a debate with us. You did not ask, but I will take a few
seconds to introduce my colleagues and to apologise for Paul van
der Maas. He is our most senior researcher, but he is a dean at
Rotterdam University and was not able to make the time to come—and
he thought that we could do it! I would like to divide the three
questions between the three of us. I will ask Agnes van der Heide
to answer the third question regarding the vulnerable groups,
because of our co-working on a paper. About that subject I hope
that Bregje Philipsen can answer the question about the denominator,
and I will try to say something about trust. Otherwise, it would
be boring for you to be hearing me all the time!
Q1622 Chairman: Not at all, but you
take the order with which you feel comfortable. Although I made
them in that order—one, two, three—you may feel that
we should start with number two.
Professor van der Wal: I think that it is best
to start with the numbers and percentages of reporting, the way
in which we have investigated that, and whether there is a misunderstanding
between you and us, and you and the department.
Dr Onwuteaka-Philipsen: That is about the 45
per cent?
Professor van der Wal: It is 54 per cent.
Q1623 Chairman: I think that 3,800
is the denominator figure that we have been given and which we
are working on. I think that is your denominator as well?
Dr Onwuteaka-Philipsen: Yes
Q1624 Chairman: The question, however,
is whether there is more than one way of arriving at that.
Dr Onwuteaka-Philipsen: Not really. Our denominator
is derived by a death certificate study, where physicians can
anonymously report a death, and where we have asked them what
happened in that case. We can therefore make a really reliable
denominator, which we also used in 1990 and 1995. I think that
what the ministry has said is that, for the last two years, a
physician can also say on a death certificate, "This was
a case of euthanasia". But we do not think that is really
equal to the anonymous denominator which we have made, because
why would you not report a case and then put it on the death certificate?
That would be strange. I think that what the ministry has said
is that it is on the death certificate.
Q1625 Chairman: They seem to derive
it from the death certificate. That is the way I understood it.
Dr Onwuteaka-Philipsen: In a way, our denominator
is also derived from death certificates, because we take a sample
from death certificates and then ask a questionnaire. However,
we only did that study in 1990, 1995 and 2001. So we feel that
we have good denominators only for those three years and not for
other years. If you see how many cases are reported now—and
in the last few years the number of reported cases has gone down
a little—then we say, "We don't know what the denominator
is". You cannot say whether the percentage stayed the same
because there were fewer cases of euthanasia, or whether it went
down because the number of cases of euthanasia—the total
number of the denominator—was still the same. You would
need another death certificate study for that, and that will probably
take place again next year.
Q1626 Lord Taverne: What about the
reasons for not reporting?
Dr Onwuteaka-Philipsen: It is difficult to study
non-reported reasons, but we have found that there are three non-reporting
groups. We do not precisely know the size of the groups. There
are people who still do not want the administrative bother of
it, or the idea that you report it. There are people who think
that you should not report it, either because they feel that it
is not really euthanasia or because it is something between the
doctor and the patient. It is also possible that there are people
who perhaps doubt whether the case would go through easily -whether
they have exactly fulfilled all the requirements.
Q1627 Lord Taverne: Do you have evidence
that there are cases here which are a breach of the code, where
they have not complied with the proper procedure, and that is
why they are not reporting it?
Dr Onwuteaka-Philipsen: We do not have evidence
for it, but it is clear that sometimes some physicians think,
"I am not sure about this or that requirement—whether
it is fully fulfilled". There were perhaps circumstances
where they felt that they could not fulfil it. I think that those
cases are also difficult to find in the study.
Professor van der Wal: We cannot say what the
size of the proportion of non-reported cases is—and here
I mean this sub-group. What we have found in some studies, however,
is that, looking at what we call the substantive criteria for
due care, the cases which are not reported and those which are
reported do not differ so much. It is more in the secondary requirements,
like not having consulted another physician.
Lord Taverne: So it is not as if the
inference from your studies is that the number of cases of euthanasia
is actually lower than the official figure of 3,800? That a lot
of these 900 or 1,000 are not really cases of euthanasia at all?
They may be, but that is not a clear conclusion which you can
draw?
Q1628 Chairman: There is some confusion,
I think. I hoped to make clear at the beginning, in the questions
I asked you, that I was using "euthanasia" in the sense
of requested euthanasia. There is a figure of 0.7 per cent, or
something of that sort, which is outside that. The cases that
are in the 0.7 per cent are sometimes described as involuntary
euthanasia, or there are other words that you can use to describe
them. I was not thinking about that. I was thinking about the
cases that are euthanasia in your sense, in which your studies
appear to show that a proportion of these are not reported to
the review committees, as the statute law presently requires.
Professor van der Wal: We did understand that
and that is what we have talked about.
Q1629 Lord Taverne: I understood
from your answer that, while there may be some cases where the
doctors are not clear whether or not it was euthanasia within
the meaning of the statute, there is not sufficiently clear evidence
to say that the figure of 3,800 should actually be quite a lot
lower, because some of the non-reported cases are not euthanasia
at all. Is that right?
Dr Onwuteaka-Philipsen: If anything, it might
be a little bit of an overestimation. It will not be an underestimation,
because we use a pretty strict definition.
Q1630 Baroness Finlay of Llandaff:
It may be helpful if you could explain very simply the methodology
that you used, because it might clarify some of the confusion.
Perhaps you could also tell us how you plan—if you do feel
a need—to change or refine the methodology for the next
survey that you do.
Dr van der Heide: One of the most crucial elements
in our study is the definition of euthanasia. In our death certificate
study we did not ask physicians, "Did you perform euthanasia
in this case or did you not?". That is not the question we
ask, because we think that it is not suitable to use the term
"euthanasia" in a written, anonymous survey, in which
you cannot explain exactly what you mean. That is why we asked
physicians the following question: "Did you provide in this
case a drug with the explicit aim of hastening this patient's
death? And, if you did so, did you do this at the explicit request
of the patient?". If both questions were answered positively
with "yes", then we classify this case as a case of
euthanasia. This is meant to be an objective classification scheme
for euthanasia, but at the same time it means that our definition
is not always similar to the physician's definition. When the
physician answers both questions "yes", it is not that
in all cases the physician himself also defines the case as one
of euthanasia. That is why there is sometimes a misunderstanding
of what is euthanasia and what is not euthanasia. We think that
our definition—the two questions we have asked—is
based upon the legal definition of euthanasia; but in the experience
and the daily practice of physicians there is sometimes misunderstanding.
For example, whether, when you provide morphine to a patient who
is very close to the end of his life with the aim of ending life,
it should be considered to be euthanasia. We think that providing
morphine with the explicit aim of hastening this patient's death,
and if it is done at the explicit request of the patient, it fulfils
the criteria for euthanasia and should be classified as such.
However, it is conceivable that in this case the physician himself
would not classify the case as euthanasia and, as a result, would
not report the case either.
Q1631 Baroness Finlay of Llandaff:
Do you plan to ask the physician explicitly what they did, to
give you a list of the drugs that they used, and to describe their
actions in that last time frame?
Dr van der Heide: In the subsequent study, you
mean?
Q1632 Baroness Finlay of Llandaff:
Yes, next time.
Dr Onwuteaka-Philipsen: We did that also in
the other studies. We asked for the medication. Even then, it
is difficult to know where you are sure that that drug did or
did not make someone die. That can also be so, for instance with
morphine.
Professor van der Wal: But we found cases in
which the drug was morphine, and not for example a curare drug,
in very low dosages, with a "yes" twice on the questions
which Agnes presented. So we classified that as euthanasia, but
it is conceivable that the doctor thinks that, although he or
she has twice said "yes", it is not euthanasia: that
it is not euthanasia afterwards, because the patient was already
almost dead or because it was only 5 mg of morphine.
Q1633 Baroness Finlay of Llandaff:
Can you explain again how you got your total sample? The method
by which you drew the complete group?
Dr van der Heide: All deaths in The Netherlands
are reported to Statistics Netherlands. We drew a sample of those
deaths over a period of four months; so it is a nationwide sample,
not selected by a place of death or by an attending doctor, or
whatever—
Q1634 Baroness Finlay of Llandaff:
So you took all deaths in four months?
Dr van der Heide: Yes.
Q1635 Baroness Finlay of Llandaff:
In four months. That was your frame.
Dr van der Heide: Yes.
Q1636 Lord Carlile of Berriew: A
random sample from all deaths?
Dr van der Heide: Yes.
Q1637 Baroness Finlay of Llandaff:
Did you sample or did you include all deaths?
Dr van der Heide: No, we sampled.
Q1638 Baroness Finlay of Llandaff:
How did you establish your sampling frame?
Dr van der Heide: In a period of four months
about 40,000 deaths occur in The Netherlands. We sampled about
6,000 of them. I do not know if you are interested in the technique
as well?
Q1639 Baroness Finlay of Llandaff:
Yes, I am.
Dr van der Heide: The total number of deaths
was stratified into cases in which, based upon the information
on the death certificate, it was more or less likely that an end-of-life
decision had been made. Then, from the stratum in which the likelihood
is high, a large number of cases are randomly picked; from other
strata a lower number of cases are randomly picked; then the doctor
receives a questionnaire and is asked to provide information on
that.
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