Examination of Witnesses (Questions 1560
- 1579)
FRIDAY 17 DECEMBER 2004
MR JACOB
KOHNSTAMM and DR
ROB JONQUIERE
Q1560 Chairman: The written statement
to which Lord Carlile refers, of which you have given an example
here, is one which may be signed a considerable time before that
situation develops. If I have understood the structure right,
it replaces the need for mental competence at the time that the
euthanasia decision is made—which would ordinarily be required
if there was no advance statement. Is that right?
Dr Jonquiere: The law talks about there being
a well-considered and voluntary request. It does not state that
the request has to be written down, or whatever. There should
be a request. During the legalisation process, people discovered
that sometimes patients reach a situation where, at the moment
the request would be made or discussed, they are no longer able
orally to say what they want. The law then says that this statement
must be considered as being a request—only a request, which
is the first point in our criteria.
Q1561 Chairman: I think that is what
we understand.
Mr Kohnstamm: So that, in the situation you
speak of, there might be a request; but if someone is able to
communicate by whatever means, that communication counts. Second,
there is a doctor, who then has to look at it and decide whether
this person is suffering hopelessly. There is therefore no need
to fill in this request. You may or may not do it; but, if you
are still able to communicate—not necessarily to speak but
to communicate, and there are many ways of communicating besides
speaking and writing—that communication counts, and not
the fact that you have written it down, at whatever time in your
life.
Q1562 Chairman: If you do not have
the capacity to communicate later, the advance statement may suffice—to
comply with the law so far as request is concerned?
Mr Kohnstamm: Like, for example, the declaration
that I do not give consent to doctors to operate on me, for whatever
reason. Even if I can no longer communicate, it is full stop after
that. Like, for example, when you go to a notary to make a will.
It is something which is taken as your decision regarding what
will happen to your property, or whatever—even if you did
it when you were 25 years old.
Q1563 Lord Patel: If I sign this
advance wish, or whatever you call it, and if I become unconscious,
as Lord Carlile has said, this would remain valid. If I cannot
communicate, this will be valid?
Mr Kohnstamm: That is correct.
Chairman: As a communication.
Lord Patel: And the law allows that.
Chairman: But the law still requires—and
it is quite important—that, at the time the actual injection
is to be given, you must then have the suffering that comes up
to the standard that the law requires.
Q1564 Lord Patel: Yes, but if I have
signed this, according to what is written here, will that be accepted
in law as unbearable suffering?
Dr Jonquiere: No, as a request.
Mr Kohnstamm: It will only be considered a request.
Q1565 Chairman: It also operates
if your mental capacity has been damaged between times. As I have
understood it anyway, a fully considered request is thought to
be based on the idea that the person making it has mental capacity
to make that decision. So, in this way of looking at it, the advance
directive—and this complicates the issue a little, because
the two are a little separate—replaces the need for a consent
or request at the time of the euthanasia by a person of competent
mental capacity, but it does not in any way affect the condition
of unbearable and hopeless suffering, which the law requires before
the doctor can actually perform euthanasia. Is that correct?
Mr Kohnstamm: That is correct.
Lord Patel: But this request could be
granted?
Q1566 Chairman: Yes, it could.
Mr Kohnstamm: Perhaps I might ask Rob, the doctor,
to give an example of when the unbearableness of the situation,
which has been signed in an advance directive, could possibly
end that person's life, because the doctor decides it is hopeless
illness. What sort of a situation are we in then?
Dr Jonquiere: For example, in terms of mental
capacity, if a patient signs a declaration or a statement saying
that there are certain conditions in which he would consider his
suffering to be unbearable, and if that person gets Alzheimer's
disease, but at the same time develops a cancer process somewhere
which obviously is causing a lot of suffering, then if that person
has not written an advance directive, there is no request. No
doctor in The Netherlands—even if the whole family asks
for it and everyone sees that there is hopeless and unbearable
suffering—will ever terminate a life, because there is no
request. We tell our members that if they make this statement,
they have a guarantee—not to have euthanasia but that there
is a request, in case something like that develops. For example,
paragraph 9(d) which talks about Alzheimer's disease—almost
all our members fill in paragraph 9(d). Actually, in the last
10 years in The Netherlands, euthanasia has perhaps taken place
four times in an Alzheimer's patient. It has happened at an earlier
stage, where the patient was still capable of communicating with
the doctor, and the statement was not necessary—because
the patient could ask for it at a certain stage. That is perhaps
the best proof that this considers only the request and the opinion
of the patient, and the doctor has to agree—or whatever
you would call it—before anything can happen.
Q1567 Baroness Finlay of Llandaff:
I want to work through an example, if I may, because I am finding
it quite difficult to follow. Say we take a 54 year-old lady with
carcinoma of the breast, who has completed one of these statements.
She has widespread bone metastases, and she becomes confused.
She is already on opioids, various drugs, for symptom control.
What is the doctor's obligation then, when she is confused, having
signed this? She would fulfil the criteria of needing to be confined,
because she may go wandering. What does the doctor do? She has
now metastatic breast cancer; she will not be cured; she has signed
one of these. Can you talk me through the physician's role?
Dr Jonquiere: First of all, you talk about "obligation".
There is no obligation on the doctor. The law does not say that
you are obligated to give euthanasia, and this statement never
creates an obligation on the other side. That is one thing. Second,
the case that you are describing means that that patient has been
in treatment with a doctor or doctors, with family doctors, for
a long period of time.
Q1568 Baroness Finlay of Llandaff:
Yes.
Dr Jonquiere: I would like to emphasise at this
point that the decision for euthanasia is not a decision which
comes out of the blue. It is the result of a long discussion.
Q1569 Baroness Finlay of Llandaff:
I understand all that, and that the doctor knows that the patient
has said that her nightmare is to become paralysed or to become
confused and be dependent.
Dr Jonquiere: I think that discussion would
have already occurred between the doctor and the patient, before
the patient was confused. So the doctor will probably know about
the wish of the patient. You could say that, legally, when he
is going to comply with the request for euthanasia—at a
certain moment when the patient is incompetent—then he would
refer to the request. But I would consider the possibility that,
if he got this request early enough, with good communication you
do not even need this statement.
Q1570 Baroness Finlay of Llandaff:
So it would be the doctor's decision whether to investigate or
not.
Dr Jonquiere: Yes.
Q1571 Baroness Finlay of Llandaff:
The problem is that the patient may not have realised that that
confusion may be reversible. In the discussion with the patient
you cannot cover every eventuality of the whole textbook of oncology.
Dr Jonquiere: I agree completely.
Q1572 Baroness Finlay of Llandaff:
Supposing then she has hypercalcaemia. The doctor treats her,
her confusion clears, and she says, "I did not want to be
treated, because I have this piece of paper. You have now treated
me".
Dr Jonquiere: This is not what this paper says—"I
don't want to be treated".
Q1573 Baroness Finlay of Llandaff:
So this has no force in law?
Mr Kohnstamm: It has no force in law, that is
correct.
Q1574 Baroness Finlay of Llandaff:
So this is just an expression of wishes?
Mr Kohnstamm: Yes, exactly.
Q1575 Baroness Finlay of Llandaff:
So the doctor treats. Let us move on. Six weeks later, she says,
"My metastases have spread. I think that I would want to
end my life". She had leg weakness and spinal cord compression.
So she now also fits the criteria of a permanent paralysis. It
has been there for days, so she will not improve with radiotherapy.
She has already spoken about it and had that discussion. Would
the doctor then say, if he is agreeing with the patient for euthanasia,
"At this point we will go ahead and proceed", and may
go ahead with euthanasia the next day?
Dr Jonquiere: Yes. The essential thing is that
the doctor talks with the patient. The law tells you about the
suffering situation. The reason for the suffering is only secondary.
The core point is the suffering of the patient. So the reason
for the euthanasia at the stage you describe is not a paralysis;
the reason is the fact that the patient tells the doctor, "For
me, this is unacceptable suffering", and the doctor agrees
that he cannot do anything about it. That is the reason to make
a decision—not a paralysis.
Q1576 Baroness Finlay of Llandaff:
Where I have a difficulty is that I have had many patients like
that. Then, as Lord Carlile says, we will go through rehabilitation
with them, and I have had many patients say, "I never believed
I could have such quality of life".
Dr Jonquiere: My patient maybe knows and I can
tell her, "I can put you through rehabilitation and you may
. . ." and so on, but—
Q1577 Baroness Finlay of Llandaff:
But you do not believe it at the time, when you are devastated.
Dr Jonquiere: But says, "I don't want it".
I have heard a patient say to me—and do not be offended
by this—"I don't want to be cuddled to death".
That is the personal choice of that person. I know that sometimes
patients, making that choice, cause a lot of difficulties for
the doctor who knows that he has possibilities. If the doctor
finds that the possibilities are serious, the doctor should say
no to the request and should argue.
Q1578 Baroness Finlay of Llandaff:
But is it not easier for the doctor than to give in to the request—
Dr Jonquiere: No, never.
Q1579 Baroness Finlay of Llandaff:
. . .because it is such hard work to look after these patients?
Mr Kohnstamm: Would you ever want to terminate
the life of your patient, as a doctor? Would you?
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