Examination of Witnesses (Questions 120
- 139)
THURSDAY 16 SEPTEMBER 2004
The Lord Joffe
Q120 Chairman: That is right. I am
not doing more than raising this issue.
Lord Joffe: That is very helpful.
Chairman: Lady Finlay, do you want to add something,
because I am going to stop for a while, and I have a number of
questions on this sort of line that I want to ask so that we understand
fully the provisions of the Bill.
Q121 Baroness Finlay of Llandaff:
Thank you, my Lord Chairman. You say much about the autonomy of
the patient being paramount and you did say in your initial opening
remarks that you saw this as the beginning of a stage which would
extend in incremental stages.
Lord Joffe: At the beginning of the legislation.
Q122 Baroness Finlay of Llandaff:
Yes.
Lord Joffe: It was a first stage and possibly
the final stage but there could be subsequent stages.
Q123 Baroness Finlay of Llandaff:
The previous Bill did not restrict the euthanasia or physician-assisted
suicide to the terminally ill. I wondered why you felt that those
people who deem themselves to be suffering unbearably but have
a long prognosis are not eligible, whereas those people who will
be dying anyway in the foreseeable future would then be eligible
to be killed?
Lord Joffe: May I first say that to use emotive
language, "to be killed", actually sounds almost pejorative.
I think it is "being assisted to die that" I would prefer,
for myself, but obviously it is a matter of personal preference.
Q124 Baroness Finlay of Llandaff:
Perhaps we should stick with "having their life ended"?
Lord Joffe: Yes, "having their life ended"
would be fine. When we considered the opposition to the previous
Bill, we felt that there was such strength of feeling in the debate
about extending it to younger people who had a long lifetime ahead
of them, that we thought it wise, coming back to my point about
moving in incremental stages, to limit it to terminally ill patients
who were already suffering terribly and had a very short time
to live. But I can assure you that I would prefer that the law
did apply to patients who were younger and who were not terminally
ill but who were suffering unbearably, and if there is a move
to insert that into the Bill I would certainly support it.
Q125 Baroness Finlay of Llandaff:
Could you tell me just a little bit about the cost background
to your Bill, the costing of the implementation of your Bill?
Lord Joffe: We have no adequate information
at the moment on costing. I think with a Private Member's Bill
one is concerned, I am told, to deal with the principles of the
Bill. You come to it without any real resources as a Private Member
and you raise what you think is an important and ethical matter
which will hopefully subsequently be taken up by government, who
will then consult widely and will address matters such as cost.
Q126 Baroness Finlay of Llandaff:
The reason I come to cost is that I am not sure in your safeguards
quite where you will safeguard against a perception by a patient,
which may not be said to them by any one individual, that they
are costing their family or the NHS a large amount of money by
their ongoing care, and that therefore their death should be expedited
out of some sense of duty to prevent this ongoing expenditure.
Lord Joffe: In talking about the expenseand
it is admirable to think that any patients would be bothered about
the expense to the NHSit is important to appreciate that
the patient has only a short time to live, so the amount of expense
is limited by the time period that they will survive. The question
of expense, on the experience, as I understand it, in Oregon and
The Netherlands, has not been a major issue with almost any patient,
although I could think of circumstances in which it would influence
a decision. But if when the consultant speaks to the patient about
their unbearable suffering, they say they are suffering about
the cost to them, I do not think that would be sufficient reason
by itself to persuade anyone that that justified their being assisted
to die. It might be a factor, together with a number of other
related factors.
Q127 Baroness Finlay of Llandaff:
You say in the Bill that the patient must be informed of the process
of being assisted to die. Could you take me through exactly what
information they should have to fulfil the conditions within the
Bill?
Lord Joffe: At that stage they have been taken
through all the other processes already, but it comes up early
in what the doctor is saying, so the doctor would tell the patient
about all the safeguards in the Bill and then would say at the
end of it, "If you still insist on dying, you will be provided
with drugs which you may or may not take."
Q128 Baroness Finlay of Llandaff:
I think there is a little bit more, with all due respect, to the
process of being assisted to die, in terms of the need to inform
the patient that if they take the drugs orally they may fail.
Lord Joffe: It would depend on the statistical
evidence, but there is a very remote chance that it would fail.
If you refer to the evidence in Oregon, it has never failed so
far, although it did take one patient 48 hours to die: he was
in a coma all the time, and the doctor had explained this to the
family that it could happenand the family, as it happened,
were quite satisfied with what eventually happened and the patient
was unaware of it.
Q129 Baroness Finlay of Llandaff:
Given the concerns about the doctor having to be convinced that
there is unbearable sufferingwhich is a subjective judgment
at the end of the day, and therefore he would be obliged to take
the patient's word for their perception of their suffering being
unbearableI had wondered why in fact you had not suggested
taking the whole thing outside medicine and having a completely
separate service. Because you are talking about a single lethal
dose which would be vastly higher than any therapeutic dose, and
if you are going to give barbiturates and curareand curare
certainly is not used in the community, I would have thought,
almost neverso that it would be a drug solely limited to
the process of assistance in dying?
Lord Joffe: I am not sure what the question
is. I am sorry. It might be because I am not medically educated.
Q130 Baroness Finlay of Llandaff:
I am wondering why not take it completely outside medicine, so
that you do not change the tenor of clinical care and you have
a completely separate serviceyou could call it thanatology
service.
Lord Joffe: I think that is an interesting thought
which deserves further considerations. We have thought about it
and we have learned that in The Netherlands doctors really worry
about assisting patients to dieit is not something they
move into enthusiastically and it causes considerable concern.
But on the surveys which have been taken in The Netherlands, and
certainly in Oregon, the sense is that doctors often feel that
actually that is part of their treatment of a patient whom they
have known for a considerable time (if they have known them for
a considerable time), and they feel that they have done the right
thing by their patient. Some doctors might feel that actually
they want to be involved; it is part of the treatment for the
patient of whom they are very fond and want to assist. That said,
there would be some doctors who did not feel that, and I think
that further consideration should be given to the point that you
make.
Q131 Baroness Finlay of Llandaff:
If you view physician-assisted suicide and euthanasia as a therapeutic
option, do you accept then that every doctor has a duty to inform
the patient of the therapeutic options available in their situation?
Lord Joffe: I have thought about that very carefully
and have taken medical advice on that subject from an expert in
this field, and they say that, in the stages of an illness, at
the beginning one would not raise it. Gradually the patient might
become worse and worse, and they would have the benefit of palliative
care hopefully, and they may then feel that they really wanted
to ask for assistance to dieand of course if at any stage
the patient raises the matter, then there is a duty on the doctor
to discuss it openly with him or her. If, on the other hand, the
patient does not raise it and is suffering unbearably towards
the end stages of their life, then I think there would be a duty
on the doctor to raise this as one of the other optionsnot
the preferred option, but an option that exists. It is interesting
to see the way they do it in Oregon. In Oregon everybody who enters
into a hospice is given a form. Over here, if you are undergoing
treatment your doctor will give you a description of what is involved
and the side effects, and in Oregon there is a form, which is
prepared by the Hospice Association, which goes to the patient
which sets out in, I think, the most compassionate way the various
options, including the option to die. I would be very happy to
distribute this standard form which they use in Oregon to the
members of the Committee.
Q132 Baroness Finlay of Llandaff:
I have a slight difficulty with "option to die" because,
sadly, all the patients who are terminally ill automatically have
that option.
Lord Joffe: I am sorry, I was endeavouring to
be briefer than I normally am: "all the patients who are
asking for assistance to die" if that covers the point that
you wish to make.
Q133 Baroness Finlay of Llandaff:
The last point I would like to come to is the assessment of competence
and the recognition in the Mental Capacity Bill that the competence
required to take a decision relates to the size of the decision
taken. I wondered, therefore, what safeguards you would have in
for the clinician, where the family have not been informed and
not been involved in the process, whereby after the event they
would come and challenge that the patient was not actually fully
competent to take such an enormous decision, even though they
may have been perfectly competent to decide where they want to
go, what they want to wear and what they want to eat, and, indeed,
to be informed about their symptoms and the effective symptom
control that they have?
Lord Joffe: I think that is a point that we
have been considering. I think that it is implicit in the Bill
that, at the time the patient is assisted to die, and certainly
actively being provided with the drugs, they should be competent
and that the doctor should give attention to that, because they
are given the option to revoke their declaration at any stage
and in order to revoke it they have to be competent. I think that
is an area which does need attention and which we might feel should
be included in the Bill. Might I add, again, let us compare it
with the lack of safeguards in all the other end-of-life decisions,
where competence apparently is not something which is raised continuouslyalthough
the case might be that it ought to be.
Baroness Finlay of Llandaff: I think it will
be.
Q134 Chairman: Lord Joffe, I have
a number of questions of the same type, as I was asking earlier.
Could we go back to clauses 1 and 2. The consulting physician
is said to be required to be independent of the attending physician,
and you gave the illustration of not being a partner or anything
like that. What else? One of the ideas that I think this is dealing
with is the sort of idea of two who have very much the same ideayou
know, that if the attending physician thinks the suggestion should
be in favour of assisted dying, then he knows the consulting physician
to get who would support that. You want really to strike at that,
I imagine, and suggest that they should be utterly independent,
one from the other?
Lord Joffe: It is a question of balance. I think
it might be difficult to get the right consultant and in that
event you should be able to use someone who is known to you as
the attending physician regardless of the fact that you have used
them before. But I think independence seems to mean that there
is no financial relationship certainly between the two. I would
hope that the GMC/BMA in preparing the guidelines would give attention
to this question of what in the real world does this mean, and
give guidance to doctors.
Q135 Chairman: Basically, it is the
absence of any financial connection anyway?
Lord Joffe: Yes.
Q136 Chairman: That is essential?
Lord Joffe: I think that is right.
Q137 Chairman: Could we come on to
the definition of terminal illness, please, which is quite fundamental
to what you wish to have in this Bill. You say "inevitably
progressive"?
Lord Joffe: Yes.
Q138 Chairman: ". . . the effects
of which cannot be reversed by treatment (although treatment may
be successful in relieving symptoms temporarily) . . ." I
have the impression that some of these illnesses anyway can have
considerable, what is described as, "remission". Is
that intended to be covered by "relieving symptoms temporarily"
by treatment?
Lord Joffe: That was the intention, yes.
Q139 Chairman: The next point is
immediately following, and it is the point to which Lady Finlay
referredthe "unbearable suffering" definition
depends on the patient's subjective view of the matter?
Lord Joffe: It does.
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