Examination of Witnesses (Questions 360
- 379)
THURSDAY 21 OCTOBER 2004
DR TERESA
TATE, MR
DONAL GALLAGHER,
MS VICKY
ROBINSON, DR
ROBERT GEORGE
AND DR
DAVID JEFFREY
Q360 Chairman: Can I understand that,
Mr Gallagher. Are you saying that you have experience of people
actually suffering as a result of the attitude that they know
of from their relatives who wish to hasten their death?
Mr Gallagher: Not to hasten their death; but
they feel a burden at times. I think that is the more prominent
feeling: they feel a burden to their families.
Q361 Chairman: So long as they are
alive?
Mr Gallagher: Whilst they are alive, because
they are going to become more dependent. Certainly there was one
case I have worked with, where he did want to die before he would
have done otherwise because he felt he would be a burden and become
more dependent upon his family and affect their lives.
Q362 Lord Taverne: The other question
I want to ask is of Dr Tate. She said that she was not happy that
the "unbearable suffering" is left to be subjective
criteria. Is it not inevitable that "unbearable suffering"
is subjective? We have, for example, evidence from one person
with Motor Neurone Disease who said that, however terrible the
suffering might be that she was going to go through, she did not
wish to have her death assisted; and we greatly admire and respect
her courage. We had evidence from another person with Motor Neurone
Disease, who knew exactly what was going to happen to him, who
said that he was extremely concerned that he should not go through
suffering which he would regard as unbearable. This would seem
to contradict the evidence that it is up to the patient and there
is no patient who need suffer unbearable suffering because they
can always let go. Taking those two cases, is it not inevitable
that this, which a very important consideration, should be subjective?
It cannot be defined any more, can it?
Dr Tate: Absolutely. There is no doubt that
suffering is what the patient expresses as suffering. My concern,
the concern from the Hospice Council in its evidence is—
Q363 Baroness Thomas of Walliswood:
I am afraid I cannot hear you.
Dr Tate: I am sorry, is that better?
Q364 Chairman: Yes, that is better?
Dr Tate: The concern of the National Council
was about the definitions that were included in the Bill and the
requirement for the doctors to make a judgment about the unbearable
suffering of the patient; and the point was exactly that, that
they would have no measure to use except by hearing what the patient
may say to them; and if the doctor, particular a palliative care
physician, is being asked to do that in the very short time that
may be allocated for a palliative care assessment, the supposition
is that that is not going to be an adequate assessment of the
patient's suffering but that may take a week or more of knowing
the patient and the situation before it can be effectively and
properly judged.
Ms Robinson: Perhaps I could refer back to Lord
Carlile's question as well. I want to really emphasise the point
that every suffering is unique, and it is in the context of a
life lived that the whole root of the hospice movement is based
on the management and the alleviation of suffering. Our job as
palliative care clinicians is to build up a relationship of trust
and, indeed, to help our colleagues who are working in our general
hospitals and general practices to help people to discuss what
the future might hold in terms of their symptom burden, what effect
that might be on their family, and also to begin and to excavate
what strategies they might want to put in place at a future date.
In my experience a lot of people do change their mind once that
therapeutic relationship is in place and people have the knowledge
and the tools with which to manage each day as it comes.
Q365 Lord Taverne: A lot of people
may change their mind. What about those who do not?
Ms Robinson: In my experience of 16 years and
many thousands of patients, I can count on one hand the number
of patients who have not changed their minds and have gone ahead
and either taken their own lives or have gone abroad for assisted
dying.
Dr George: Could I make a comment about the
assessment of "unbearable suffering"? Doctors really
are not the best people to look at global assessment. This is
why we have multi-disciplinary teams and why it takes quite long
time to assess all the shades and components of that which involve
the family and all these things. Often patients reflect family
suffering; the family reflect patient suffering. It is a very
complicated area and it requires much more than just one doctor
to assess that.
Dr Jeffrey: Lord Taverne, you were asking about
experience abroad. It is interesting that in the studies from
Holland doctors themselves decided that 35 per cent of patients
requests for euthanasia had to be turned down because they were
not suffering enough. I think one other thing that is at the back
of my mind is that we talk in this debate as though it is all
suffering and, if you have euthanasia and physician-assisted suicide,
there is no suffering. But let's not forget Groenewood's work
that shows that between 3 and 16 per cent of patients who have
physician-assisted suicide or euthanasia have distressing deaths:
failure of the process to work, myoclonic spasms and vomiting—a
distressing time[9].
So it is not a question of either/or; suffering can be accompanied
on both sides of this.
Q366 Lord Taverne: The other question
I want to ask is on the question of pain relief and that there
might be difficulties in that case. Is it not true that since
the Shipman case there has been less willingness of doctors to
give as much pain relief as they were willing to do before? There
was some work done by a research company called Medics UK. It
found that a number of doctors have reduced their pain-relief-prescribing
since the Shipman case; so that in many cases patients were not
given the pain relief which they wished?
Dr Tate: Perhaps I can start with that. I would
suggest that that absolutely reinforces the need for an extension
of palliative care education to the health care practitioners
in order that we can understand that the appropriate use of strong
pain killers is absolutely safe, that is fixing the dose according
to the individual needs of the patient and continuing to reassess
and to judge that, and that there is absolutely no evidence that
by doing that one will shorten the life of a patient. Indeed,
there was a paper very recently published from Israel which reconfirmed
again that that was the case.
Q367 Bishop of St Albans: My Lord
Chairman, I address this question to Dr Jeffrey. I particularly
enjoyed the paper that was produced by your Ethics Committee,
not least the series of definitions that is provided. And, following
the definition, you came to section 4 which was, I think, very,
very carefully worded, I suspect, and it is about the wording
that I would like to ask a question. You refer under 4(1) in your
paper to arguments derived from "the appropriate scope of
respect for autonomy". Clearly the rest of it is very carefully
worded, but I suspect that was as well. My question is: did you
phrase that sentence in that way because you have doubts or concerns
about autonomy being the sole definition of human purpose, etcetera?
Dr Jeffrey: Certainly I think there is a time
now for a debate on the prominence of autonomy. Ethics, and particularly
medical ethics, in this country have imported from Beauchamp and
Childress in the States an American view of autonomy as having
absolute primacy in any ethical debate. I think we are now beginning
to realise that "no man is an island"; that we relate
to a community and we have duties and responsibilities as citizens
as part of autonomy. I think even Kant would not have wanted to
look at autonomy as just striding oneness and choosing exactly
what you want; it is also thinking about the effect of one's choices
on others; we want here to reflect this and we think there is
a debate here to see. Let us look at this carefully. We all want
patients to have choice. Palliative care is all about maximising
patients' choice and trying to maximise their autonomy but within
the construct of how that affects other patients. Certainly that
is the reason for phrasing it. It is about balancing between individual,
private autonomy and a public morality and duty to others.
Dr George: Can I make an additional comment
on autonomy? If you go back to Kant and from Kant onwards, there
is a distinction between autonomy as, if you like, self-determination,
which is what is the prime element or component of autonomy that
now it is proposed. But there is a second component, which is
the matter of self-government: because for freedom to exist in
communities necessarily we all have to restrict our autonomy.
There are zillions of examples of that. It is the appropriate
balance of self-government as well as self-determination that
makes it a healthy and appropriate society. If we are looking
at these situations—I give this example of letting go and
people, as it were, taking the word "autonomy" as self-government—people
can let go of life; people do let go of life. There is very good
evidence from Oregon, for example, of patients electing to stop
food and fluids. Their deaths are rated as eight out of 10, with
10 being excellent, and they die within about two weeks. The interesting
thing, if one talks to somebody about letting go, a component
of that is stopping eating and drinking as you withdraw from the
world. All of these kinds of things are achievable, and actually
they are respecting the autonomy of the individual as self-government
rather than purely self-determination.
Q368 Bishop of St Albans: Really
a sort of statement, which is that I was once asked by a friend
who is a lecturer at the University of Birmingham if I would give
him an instant and gut-reaction to his question: what is the most
important thing you know? I can assure you my response was not
that I have personal autonomy. In other words, it related to other
people, and I was therefore very grateful indeed to the comments
that he made?
Dr George: The cases I referred to earlier on
that I have given you in this submission from today give you number
of examples of this kind of management.
Q369 Baroness Thomas of Walliswood:
Dr George, I think you said—I was taking notes rather rapidly,
but I think you made two statements. The first one was that, "An
Act based on the Bill would not be defensible in court".
I am not quite sure what you meant by that. The other one was,
I think you said, "How many people are we willing to have
killed in order for the benefit of the Bill to be given to a few
people"?
Dr George: Yes.
Q370 Baroness Thomas of Walliswood:
That is, I think, the slippery slope argument?
Dr George: No, it is not the slippery slope
argument.
Q371 Baroness Thomas of Walliswood:
That is what I want to ask. If you could expand on those two,
rather roughly?
Dr George: Yes. Thank you very much for that
point. I am not happy with the slippery slope argument because
it requires a causal initiator and it requires a gradient, and
usually moral turpitude amongst medical colleagues is not something
that I would consider. I consider my Dutch colleagues to be every
bit as moral and decent practitioners as I am, I would hope, and
my experience of them suggests that. Therefore, there must be
another reason why the extension of euthanasia is from voluntary
assisted suicide euthanasia, and so on, to non-voluntary or even
involuntary euthanasia. It seems to me to be because there is
a paradigm shift and that, once you redefine death as a moral
good or a medical treatment, which is what it is here, then it
changes its classification at a stroke. It becomes a moral good
and therefore it becomes, under the rubric of our entitlement
to heath care, an entitlement potentially for anybody. For example,
why should we subject psychiatrically distressed patients, or
children, or demented patients, or patients who have just had
enough, or patients who are so miserable with the consequence
of having lost a child with suicide and want to die because of
their depression—what entitles us to restrict those patients,
whom we would define as incapable, to have an assisted death,
or what I would call, because it is a medical killing, a therapeutic
killing? There is no position for that. If you look at Dutch case
law, Dutch case law shows that demonstrably. And it is not that
there is a slippery slope, it is that there is a paradigm shift
from death, if you like, being seen as a harm to death being seen
as a good. Once it is defined as a good, then it becomes a good
that is reasonably available to everybody else under the grounds
of justice; and anybody going to a court of law, even were this
statute in place, under case law, I am sure, would make those
arguments far more effectively than I have just made them; and
we can see that in the development of case law in Holland over
the last 15 years. I will give you the references, and there is
a diagram that I have drawn which shows it a little bit more graphically
and clearly. I do not think this is a slippery slope argument.
I think it is a paradigm shift with an adjustment into a new medical
paradigm. And, interestingly, the Dutch have hit a bottom-line
on that paradigm, in that they rejected the wishes of a gentleman
who is, I think, 83 or something, who was just tired of life,
and the court said, "No, being tired of life is not a justification
to die". But 16 per cent in the UNWE Tickler(?) paper of
2003, Dutch doctors are now saying they are concerned about the
economic pressure that is coming upon them as a result of assisted
dying, and that is expected because it is a utility now. It is
no longer a harm; it comes into the balance of utilities. And,
if you have a resource problem, why waste it on the dying when
you can use the resource elsewhere? Any economist could say that
to you in the hard-nosed world we live in today.
Q372 Earl of Arran: Two quick questions
to Dr Tate. Would you accept that it is very unlikely that palliative
care will be rolled out across the NHS at any time?
Dr Tate: No, absolutely not. I think it is a
requirement of the new NICE guidance, which was published earlier
this year, the guidance on supportive and palliative care for
adults, and there are already plans in place in order that the
skills of general practitioners, nursing staff and non-experts
can be increased and improved so that palliative care will be
much more available.
Q373 Earl of Arran: So you are really
optimistic that it could happen in the years to come, that it
could be throughout the NHS?
Dr Tate: I would certainly expect so, yes.
Q374 Earl of Arran: Expectation is
slightly different?
Dr Tate: I am not responsible for the total
roll-out, but my ambition would certainly be to contribute to
that happening and to contribute to the education of all my generalist
colleagues in order to improve the care.
Q375 Chairman: Can I just get it
right. NICE is the Institute of Clinical Excellence?
Dr Tate: I am sorry; absolutely.
Q376 Earl of Arran: The second question
is perhaps slightly unfair, because they are not here to talk
on behalf of themselves, but my understanding is that Macmillan
nurses, very close to you, are neutral on this subject. Is that
correct?
Dr Tate: I am afraid I do not know the answer
and I would defer to my colleague, who may be able to help.
Ms Robinson: As far as I am aware, Macmillan
nurses have not been surveyed, and all the methods that have been
adopted to elicit any nurses' views who care for people at the
end of life need to be strengthened, because at the moment all
we have are straw polls, telephone questionnaires and postal questionnaires.
Q377 Earl of Arran: But, of course,
you are very close indeed to Macmillan nurses, not quite the same
thing but very nearly. Marie Curie I am talking about naturally?
Dr Tate: Marie Curie Cancer Care I am not here
immediately to speak of, but all of those who are involved in
the delivery of specialist palliative care would be included,
I think, in what Vicky Robinson was talking about, that we would
need to do robust surveys of their opinions in order to be able
to give you that evidence. We do not believe that such surveys
exist at the moment.
Q378 Lord Joffe: If I could start
by asking a question of Miss Robinson. You are appearing on behalf
of the National Group of Palliative Care Nursing Consultants?
Ms Robinson: Yes.
Q379 Lord Joffe: How many members
are there of that?
Ms Robinson: We have just got our fifteenth
member
9 Note by witness: Groenewood JH et al Clinical
problems with the performance of euthanasia and physician-assisted
suicide in the Netherlands New England J Medicine 2000; 342:551-6. Back
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