Examination of Witnesses (Questions 1740
- 1757)
FRIDAY 17 DECEMBER 2004
DR DIRK
RAYMAKERS, DR
MARIJANNE VAN
DER SCHALK,
DR ROELI
DIJKMAN, DR
MARLIES VELDHUIJZEN
VAN ZANTEN-HYLLNER,
DR TJOMME
DE GRAAS,
MS MURIËL
HOUTHUYSE and MS
HELMA HESLOOT
Q1740 Baroness Finlay of Llandaff:
I am sorry, it is not on request. I am wrong.
Dr Dijkman: It is just palliative care and you
do not—
Q1741 Baroness Finlay of Llandaff:
But the babies' lives were ended.
Dr Dijkman: Yes. The ending is when you look
at tubal feeding or that kind of thing. It is a medical decision.
It is futile at that moment, because the life has no prospect.
Dr Veldjuijzen van Zanten-Hyllner: It may be
important to stress that it is not less stressful, but it has
become legally clearer in terms of what you can and cannot do.
You are being checked by a SCEN doctor, and that means that a
lot of the nervous "Have I done the right thing?" part
is taken away. You can concentrate on the patient and the process.
That is a big difference with 20 years ago. As to the kind of
example you gave, as long as it is outside the clear jurisdiction,
you will not just call the SCEN doctor and say, "How shall
we do this?"; you will call the Royal College and say, "Look,
I have this very exceptional request. Who is your legal man? Who
is experienced in this? Can you advise me?". Nobody wants
to be the first case. It is a most horrific thing to have to break
up the jurisdiction. You do not want to do that.
Dr Dijkman: I work in another nursing home and
our palliative doctor has also been trained in palliative care.
We do not see more euthanasia performed after the training. The
palliative care differs a little, but the performance of euthanasia
did not increase. What we do hear are a lot of requests and, from
those requests, there are only a few performed. Each year we may
have 25 requests, with the same frequency of euthanasia as Marijanne
mentioned—once a year.
Q1742 Lord Joffe: Can I also thank
you for your excellent presentations? I think that Lord Carlile
suggested to you that the reasons for the lower percentage of
euthanasia deaths in your nursing home was because the standard
of palliative care which you offer was better than that of your
colleagues elsewhere. I am not certain that I understood the reply.
Could you just be clear about what your view is, and perhaps touch
on the fact that, generally, my understanding is that the number
of euthanasia deaths in nursing homes are less than in the rest
of the country?
Dr Dijkman: That is true. My explanation is—and
it is not evidence-based but based on experience—that patients
who suffer from terminal illnesses make the request for euthanasia
before they go to the nursing home. In principle, the patients
who ask for euthanasia have a vision of dying and losing their
dignity. Then the pain is relieved. That is my opinion.
Q1743 Lord Carlile of Berriew: But
you do provide dignified deaths in this establishment, presumably?
Very dignified deaths.
Dr Dijkman: Yes. We have to define "dignified".
Q1744 Lord Joffe: Presumably the
physicians in the country also provide similarly dignified deaths?
Dr Dijkman: Yes.
Q1745 Baroness Finlay of Llandaff:
My question is addressed to the nurses, because you have these
close conversations which you were talking about. I wondered how
often you see amongst the patients you look after an ambivalence
towards dying, in that they would like to be living but then they
feel that their lives are coming to an end. So they swing between
wanting to live and accepting that their death is coming. Is that
the sort of conversation that you are having with them, or that
they are telling you about when they discuss their feelings, their
worries and their concerns with you?
Ms Houthuyse: Not everyone is open to talk about
it. If you have a special closeness with somebody, then you talk
about it. You talk about fear and about acceptance; you talk about
pain, when somebody is still not so ill that they are lying in
bed all the time. When it is getting worse, or they are getting
closer to death, sometimes you see that there is more fear; but
sometimes you see that there is more acceptance. I have never
had the question put to me directly, "I want euthanasia".
They just want to talk about their feelings, and that is okay.
Q1746 Baroness Finlay of Llandaff:
It is good that they can talk to you. How much training do you
have as nurses in having these discussions with patients, within
your nursing training as an undergraduate and then as a postgraduate—ongoing
education?
Ms Houthuyse: I have had different training
from the rest of the people in our team. I was a hospital nurse
for 10 years and I worked in the department of cancer, lung cancer.
I did not get special training but while I was working in hospital
I did alternative training for two years. The lessons were one
whole day a month, where we learned about dying—dying in
all different kinds of cultures—to talk, and to know yourself
in different ways.
Q1747 Baroness Finlay of Llandaff:
How much care is given by trained nurses and how much care is
given by care assistants, who have a small amount of training?
Ms Houthuyse: I do not understand.
Q1748 Baroness Finlay of Llandaff:
In the UK, we have nurses who have done three-year or four-year
training, and then we have care assistants who help the nurses
and who have done a course, but it is of variable length. They
are not qualified as nurses.
Ms Houthuyse: One nurse and one—
Dr van der Schalk: We have slightly different
names for it. I do not know the name "care assistant".
Muriël is our nurse. She is our only nurse on these wards;
then we have—perhaps you would say care assistants—they
have done special training of about two years, and we call them
"illness nurses". This is a lower level than a nurse.
I think that they have done half the training. I would say that
there are 10 persons on our team. We have one nurse and about
eight qualified care nurses[1].
Q1749 Baroness Finlay of Llandaff:
Those are halfway. They have done two years of training and they
are halfway already?
Dr van der Schalk: Yes. They have done some
special training. Muriël has been working with us for a year,
and the rest of the team has done training which is organised
by the cancer centre for Amsterdam. They did special training
for our whole team, which focuses especially on care nurses—however
you call it.
Q1750 Baroness Finlay of Llandaff:
In that two-year training or your four-year training, do nurses
now have training in talking to patients or listening to their
fears about dying, or is that not yet in the curriculum?
Ms Houthuyse: When I was at school I had this
training, so I think that they still have it.
Q1751 Chairman: Coming back to the
nurses, you said that there is one senior nurse—a fully
trained and qualified nurse—and then there may be a number
of less qualified nurses in the same team. Generally speaking,
are your nurses full-time in Sint Jacob, or are they sometimes
people who give a part-time service?
Ms Houthuyse: Most of them are part-time. I
think that two of us work full-time.
Dr Dijkman: What is the reason for the question?
Q1752 Chairman: To see the extent
to which patients are able to get a reasonably close relation
of confidence with the nurses. I am conscious that, in some places,
the nurse who is looking after you today will be off tomorrow
and the next day, when you perhaps feel down and rather sad. Then
she may be back on a day when you are feeling better again. I
am wondering about the extent to which that kind of variation
in the individual who is looking after an individual patient may
be present here.
Ms Houthuyse: The part-time workers work 32
hours a week, and a few part-time workers work 24 hours a week.
So we call it "part-time" when you work 32 hours. It
is almost full-time.
Q1753 Chairman: So far as the other
nursing homes are concerned, with which you have been dealing
for example, are the statistics much the same as in Sint Jacob
or is there a difference?
Dr Veldjuijzen van Zanten-Hyllner: I think that
we must differentiate between palliative units and the general
wards in nursing homes. The palliative units are usually better
staffed, with better-trained personnel; they have a specific training.
However, the general wards are generally understaffed, and I think
that the risk in those wards would be as you have described. There
would possibly be discontinuity.
Q1754 Chairman: Lord Carlile asked
about the death here—just one in the period you cover. Is
that consistent with your experience in the other nursing homes
that you deal with?
Dr Veldjuijzen van Zanten-Hyllner: Yes, it is
an exceptional occurrence in a nursing home. Also, I think because
of the selection of the population. People who can anticipate
what is going to happen to them might very well say, "I don't
want to get to the stage that I have to go to a nursing home.
I want to make my decision before that happens".
Q1755 Chairman: Perhaps I could come
back to the SCEN doctor. You presumably are sometimes asked by
a doctor whose patient is in their own home?
Dr de Graas: Yes.
Q1756 Chairman: Do you notice any
difference in the situation as between patients who are in their
own homes when they make these requests, and patients who are,
for example, in Sint Jacob?
Dr de Graas: A difference in what
way?
Q1757 Chairman: I was thinking of
the frequency. Are you able to judge that? You may not have sufficient
information to be enabled to judge that. In your own experience,
however, from what you think, do you think that people who are
in an institution like this are less likely to ask for euthanasia
than people who ask for it in their own homes?
Dr de Graas: I do not know if they are less
likely to ask it. What I do see is that it has a lot to do with
age. I do see people at home but, as has been said, it is a population
bias. The people we see at home are younger than the people who
live in a nursing home. I think that is the most important difference.
It is a difference in the way the patient is being taken care
of, because in the situation at home there is almost always a
partner or a family who are very good carers. So I think that
age is the most important factor.
Chairman: It only remains for me to thank
you very much indeed for the presentations and the answers that
you have given to our queries. As I said at the beginning, I am
particularly glad that we have been able to come to hear what
you have to say, because you are more directly involved in day-to-day
work of this kind than most of the people whom we have seen. It
is a particular privilege therefore to have had a chance to discuss
these very important issues with you. I am sure that there are
few more important issues than those of life and death, and to
have a chance to hear about how you deal with these is of particular
importance to all of us and to our inquiry. The help you have
given us has been noted by the shorthand writer and, in due course,
we would hope to publish, as part of our report, the responses
you have given. In order to ensure that what you think you have
said is what the shorthand writer has noted, you will get a chance
to look at the transcript before we finalise it. Thank you all
very much indeed. It is a great privilege to be here.
1 Note by witness: Following the evidence session,
Dr van der Schalk asked that we clarify this point. The hospice
has nurses who have trained for three and a half years. There
are also "ziekenverzorgenden" who have trained for two
and a half years. In addition the hospice has "verpleeghulpen"
and "assistant ziekenverzorgenden" who have less training,
but who will normally do the full ziekenverzorgenden training.
The team currently consists of one nurse, seven ziekerverzorgenden
and one verpleeghulp. Back
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