Examination of Witnesses (Questions 400
- 419)
THURSDAY 21 OCTOBER 2004
DR TERESA
TATE, MR
DONAL GALLAGHER,
MS VICKY
ROBINSON, DR
ROBERT GEORGE
AND DR
DAVID JEFFREY
Q400 Baroness Hayman: I am sure there
is evidence that different people take different times. It is
the causal relationship that I am finding difficult to be certain
about.
Dr George: The causal relationships by and large
that we find, if there are relationships that are known to us,
are usually found out through the family. Dying is a family event
as much as anything, and often the information that comes out
as the process is going on is associated with the processing that
takes place in this organic group, with the patient at the centre
who is dying. The information that we will have around will come
from other family members. That is as far as I can go, I think.
Q401 Baroness Jay of Paddington:
My question follows on from what Lady Hayman has been asking you
about, Dr George, and also I will ask Ms Robinson about this.
I am interested in this concept of self-governance that you both
referred to. Let us assume, just literally following on from what
Lady Hayman has been saying, that you have patients who have resolved
their family issues, have no concerns about the after-life, who
are under your very expert palliative care in terms of their capacity
to withstand physical pain, are not depressed, etc that is, you
are dealing with a clean sheet of paper in so far as you can talk
about it in that way. And yet they are, as you describe them,
controlling personalities, A-type personalities, whatever are
these semi-pejorative words we use about people who, I suspect,
are also characterised as saying they put great value—not
necessarily absolute or total value—on their personal autonomy.
The way you have described your self-governance—and I may
be misrepresenting you—is almost as though this is either
a character failing or a character plus, that you may be able,
if you are a certain character, to recognise that the end is coming,
and whether or not you have all these other characteristics, you
let go. Is it not possible that, human fallibility being what
it is, you could be a controlling personality, all of whose issues,
physical and mental, have been dealt with by your expert palliative
care, and still not let go? Then what happens?
Dr George: I was not suggesting that there were
some people who were good and there were some people who were
bad at this.
Q402 Baroness Jay of Paddington:
I think, if you look at the language you used, you might feel
that that was what you were saying. I see Lady Hayman nodding.
Dr George: In which case I apologise and withdraw
that. If there was any bias in that, I did not intend there to
be at all. In terms of people who have resolved their matters
and are waiting to die or wishing to die, then they can die when
they are ready. If people feel that they want to die, then they
are able to do that. Actually, a lot of the conversations we have
with patients are about the fact that they do have a lot of control
over those last few weeks and days of their life in terms of when
they live or when they die.
Q403 Baroness Jay of Paddington:
What is the empirical or clinical evidence for that on a large
scale?
Dr George: We probably need to get it.
Q404 Baroness Jay of Paddington:
You do not have it now? You are asserting it but you do not have
it now?
Dr George: No. I could give you a series of
cases. I could give you a retrospective.
Q405 Baroness Jay of Paddington:
I am sure we could all produce anecdotes.
Dr George: No, not anecdotes. In terms of prospective
work, that prospective work has not been done. If one looks at
the literature in terms of consensus or in terms of clinical experience,
whilst that does not conform to the criteria of evidence that
one would see in a randomised control trial, the corpus of that
data is sufficiently large for one to say that there must generally
be a truth in this statement. One of the difficulties we have
in palliative care is that it is very hard to get research funding
to do clinical research. 0.18 per cent of the research budget
for cancer service goes to palliative care. We are very short
on the ability and the funding to do this work, and so in a sense
we are left with the things that I have said. That is a failing,
I think, in ourselves for not going out and trying to get the
funding but I would also suggest that some of the funders should
see some value in this kind of research for us to understand these
processes better.
Q406 Lord Taverne: Dr George, as
I understand it, in some ways the nub of your case as you put
it is that, if the Lords change things as the Bill suggests, there
will be a paradigm shift to see death as a good; and you cited
The Netherlands as an example of that?
Dr George: Yes.
Q407 Lord Taverne: We are going to
go to The Netherlands and see what the position is there and try
and assess the evidence. Suppose we find that that is not an accurate
description of what is happening in the Netherlands. Would you
agree that that undermines your case?
Dr George: From my understanding of the data
from The Netherlands, consistently one in five of the euthanasia's—and
the majority of euthanasias are a very small percentage of assisted
suicides—is non-voluntary. That means that the doctors are
considering, in their proper consideration of patients' best interests,
that that is an appropriate course of action. If they are considering
it on the basis of the best interests of the patient and they
have not consulted the patient, presumably the patient is incapable
or in some way is unable to give a view. That means that the doctors
must be seeing this as a generally applicable therapeutic measure
in patients at the end of their lives.
Q408 Lord Taverne: Suppose that it
is then shown, as the figures seem to suggest, that in fact the
non-voluntary euthanasia rate in The Netherlands is much lower
than it is elsewhere. Is that not also undermining your case?
Dr George: I do not think we have evidence from
this country—and we are talking about this country after
all—as to what is actually going on. I feel that the surveys
that refer to what is happening with doctors, what they are doing
or are not doing, have not been looked at in a systematic or even-handed
way. That is research that needs to be done.
Dr Jeffrey: Can I make one comment about The
Netherlands? I too have been over to The Netherlands and spoken
to doctors and interviewed them and taped their interviews. I
have met doctors who have carried out euthanasia. You will be
carrying out these researches yourself. I can only reflect on
the extraordinary distress and effort that it costs these doctors
to undergo this process. It was personally enormously taxing to
them. There were lots of ambiguities. The other concern that I
have, if you are going to talk to people in Holland, is that you
will need to try and find a group of specialists in palliative
care to talk to. You may have to hunt far, because palliative
care services are so less developed in that country as a result
of their policy. In this country we have one specialist palliative
care bed for every 18,000 people. In Holland it is one bed for
30,000 people. It is a big difference. The speciality is not recognised
as a speciality as it is in this country. There are not the same
training programmes; there is not the same thrust as there is
in this country. In some ways I feel sad as a palliative care
physician. We have a speciality in this country that we undoubtedly
and unquestionably lead the world in. Every palliative care specialist
around the world agrees: where do you come to? To the UK. I have
had a team from Maastricht wanting to set up palliative care come
to our hospital team to work. We are in severe danger of throwing
that out and losing it because, make no mistake; this will have
a huge impact on palliative care services if this legislation
goes through.
Q409 Baroness Finlay of Llandaff:
I was going to ask you what you saw as the impact on palliative
services if this legislation went through. One of my concerns
is that there is a clause in here about patients being assessed
by a palliative care specialist, and I would like to ask Ms Robinson
in relation to the nurses, given the small number who have undergone
high level specialist training in nursing as opposed to those
who work in the field and have their salary paid by one of the
charities for a time and are therefore called Macmillan nurses,
which is a separate group, what you feel will happen to developing
specialist competences amongst the nurses, from the doctors and
the nurses who are seeing the patients on a day to day basis.
Ms Robinson: If I can refer back to my evidence,
we are gravely concerned in particular about the level of confidence
and competence that there is in the nursing world. The society
that we are practising in now is very different from the society
that was around in the 1960s, when the hospice movement was first
started by Cicely Saunders. I think it is a real problem for us
in that there are only 15 nurse consultants in England who have
studied a great deal the speciality of palliative care, and it
is our job nationally to raise the issues, amongst our colleagues
both inside and outside the speciality, of the difficulties that
we are facing now with patients who are being a lot more vocal
about what it is they want and what they do not want towards the
end of life and how we can reconcile that with the philosophy
of palliative care. All I can stress is that in 16 years' experience—and,
as I say, we have nearly 200 clinical years of nursing experience—there
is no suffering that cannot be alleviated or relieved if they
are given good care in a context of specialist palliative care
in a multidisciplinary practice.
Dr Jeffrey: If I could answer from a medical
perspective on the impact of palliative care, as I alluded to
in my brief opening statement, part of the core skill of palliative
care is communication skills and listening to people express their
deepest anxieties and distress, and exploring issues of how people
want their lives ended. We perhaps do not do this well enough
yet, and certainly in a general setting we almost definitely do
not do this enough. It is very difficult work. The idea that this
Bill promulgates, that someone could come along and have a chat
for an afternoon or visit a patient and their family and come
away with some sort of realistic assessment of whether this person
wants to live or die, or whether we should go ahead with euthanasia,
just does not bear any relation to clinical practice. I talked
earlier about the difficulty in making a prognosis. One of the
other difficulties doctors face is in recognising depression.
In the BMJ on 16 October there was a review of suicide in the
elderly, and they commented on Breirbart's work, saying that doctors
under-diagnose and badly treat depression. I know this may seem
an old chestnut but it is another impact on palliative care. This
assessment is absolutely crucial and the purpose of the assessment
is crucial. It is part of our work. We do not call it an assessment
for assisted dying. It is part of advance planning for a person's
future. "What sort of death do you want in the future? We
are doing this and this now; the time may come". Palliative
care is all about anticipation of problems and discussing things.
"What would happen if this happened?" "What would
you like to have happen here?" "If the time comes, do
you want a drip with fluids? Do you want that sort of thing or
do you not want to do that?" This is the sort of direction
that we would like to be going. The sad thing for me is that,
because this is tied in this legislation in this way, palliative
care physicians and a lot of my colleagues, nurses too, that I
talk to are very worried about carrying out this assessment because
they think "Will people think I am in the euthanasia bit?"
because they certainly do not want to be in that. It is logically,
completely contrary to the philosophy and ethos by which we practise.
We cannot be involved in euthanasia and assisted suicide, it is
just not part of our ethos and our way of working. That in itself
might be enough to take palliative care physicians out of this
valuable assessment work because they would be worried about being
implicated in it. I think the other area which is of huge concern
is in the implementation. There is very little said about this
in the Bill. Is this going to take place in hospices? Is this
going to take place in people's homes? Is it going to take place
in an acute ward? Because let us remember that most patients now
are dying in acute medical and surgical units in this country,
so this is something that may have to occur in an acute ward in
a Trust. I think these are reflections that we need to think about.
We have a lot of concerns about the practicalities of the mechanics
of this Bill. Are people going to be left with lethal medications
in their home? Who is this fantasy "attending physician"?
If you try and register with a general practitioner now, you register
with a practice, it is a team approach to care. If you call at
night you will get a different doctor, you will not get your own
doctor coming to see you. Again, the Bill puts forward this fantasy
that somehow a doctor will come who will know you and your family
but this is becoming less and less likely given the pressures
of general practice nowadays. It may still pertain in Holland,
I do not know, but it does not pertain here. Your own personal
experience may reflect that you may see that when you go to make
an appointment with your particular GP and it may take three weeks
to get in. You will see a doctor but you will not see the doctor
that you are used to. I think there are these sorts of practical
implications. Again, I alluded to what do we do when the process
fails, as it can do, and fails to complete and the family are
left struggling with that? The attending physician is not going
to be hanging around the house or wherever this lethal medication
is given. There are numerous clinical situations that I can allude
to that raise problems in this, but I think particularly the assessment
and the implementation of this Bill give us deep concerns.
Q410 Lord Carlile of Berriew: I have
just one question that arises from what Dr Jeffrey has just said.
Clause 3 of the Bill, and we are concerned here with an ethical
principle, places a specialist in palliative care in the position
of an advocate in effect, it interposes a specialist in palliative
care to discuss the option, as it says in the clause, of palliative
care. In fact, as I understand it, what that means is that a decision
in principle having been taken that the patient wishes to have
assisted suicide, a specialist in palliative care is then placed
into the equation to argue against assisted suicide and in favour
of palliative care. Is that a role which you recognise as part
of the current disciplines of palliative care specialists?
Dr Jeffrey: Certainly not.
Q411 Lord Carlile of Berriew: Can
you explain why?
Dr Jeffrey: I tried to allude to it before.
We are coming to this with a view to trying to make the most of
a patient's ability, with whatever life they have left to them,
to allow them to make choices they can make to lead the life they
can, to be free of pain and to express themselves as they wish.
The idea of acting as some sort of gatekeeper role for euthanasia
is quite contrary, and it is that very issue which worries palliative
care physicians about being involved in any sort of assessment
at all, that it might be misinterpreted as a gatekeeping role.
We are looking at patients in this advanced planning role in terms
of caring and trying to find out, tease out, what they want and
it is difficult. Patients, like all of us, are inconsistent and
what they say one day will change on another day. It varies even
as to what discipline the specialist is who comes. I have done
joint work with oncologists and been to see a patient with advanced
cancer who on one day might say to the oncologist, "I
definitely want more chemotherapy" and the next afternoon
will say to me, "I am really fed up with all of this, is
there no way that we could just stop the chemo?" People say
different things and it is a very, very difficult area to sort
out. Certainly we do not want to be gatekeepers for euthanasia.
Dr George: Could I just comment how difficult
it is to manage patients who are late referrals to palliative
care. If we have people who are referred early in their disease
journey, then we can establish a relationship and all of the advanced
planning that we are speaking of, and many of the things that
I did not communicate adequately to you, Lady Hayman, start to
shake down and we have a much clearer view of how things are going
to go for that individual and how they want those things to go;
and the advanced planning becomes much easier because it is not
in the heat of the moment on a bad day or a good day, or whatever
else is going on. Irene Higginson's work shows very, very clearly,
over several studies that I was involved in a lot in the early
1990s, the great difficulty of patients coming late to palliative
care referrals. They have a heavy burden of symptoms, they have
major psychosocial conflicts, and referrals in the last two to
four weeks of life are a nightmare to manage because everything
is moving simultaneously and often things are out of control for
them, so the ability to help them to make sense and get things
in order becomes that much more pressurised and difficult for
them. Seeing ourselves within a process that has a timescale attached
to it is going to put an enormous pressure on us as clinicians
as well as the patients not that I would refuse to see a patient
who requests or needs palliative care regardless of what was happening
to them, I would be entirely happy to see them
Q412 Chairman: I wonder if you can
help me. This really follows on from what you have just been saying,
Dr George. If one was going to discuss with a patient the question
of assisted dying, presumably one would need to give some picture
to the patient of what the future would be for him or her if that
particular course of action was not followed. Does that take time
to evaluate?
Dr George: Yes. If you take a person with any
clinical illness, regardless, then the variants and varieties
of problems that may arise can be quite broad. In certain patients,
as you get to know them and you get to know the way the disease
is manifesting, then one has more certainty in talking about the
likely situations that will arise, the ways in which they may
want them managed, the areas that they would not want managed,
and so on and so forth. That is very much individualised and it
is one of the reasons why it is so difficult to do research in
these areas, because individual patients have high levels of variability
and, of course, the time at which people want to talk about this
stuff varies and their intentions and views as time passes vary
as well.
Q413 Chairman: Dr Jeffrey, you referred
to some research that has been carried out into the success rate
of prognosis. Can you give us a reference to that?
Dr Jeffrey: I can do. I will supply that reference[10].
Q414 Chairman: Obviously, in the
past at least, you will have signed some forms with an estimate
of how long a patient was going to live on these forms.
Dr Jeffrey: Yes. The underlying idea of these
Attendance Allowance forms is that it allows for the speedy payment
of benefit to families so that they do not have to wait in a situation
that is terminal. By signing that form you are indicating that
you feel the patient has less than six months to live.
Q415 Chairman: How do you go about
that? Having a particular patient to consider, how do you go about
estimating how long they may live yet?
Dr Jeffrey: I alluded to the difficulty of it.
Q416 Chairman: I am just wondering,
could you enlighten us at all on the process by which one goes
about it?
Dr Jeffrey: I think the process is that one
first of all listens to the patient and you try to get an idea
from the patient as to the pace of the illness, the pace of the
disease: "How were you last year? How were you six months
ago? How were you three months ago? If I had met you a month ago,
how would you have been?" Overall there is a drift, and this
is only a very rough guide because you cannot be certain with
an individual patient, and that is what is so difficult and that
is something that we need to acknowledge with each individual
patient. You cannot sit opposite a patient and say "I know
this is what is going to happen to you"; you can make a professional
judgment on it. I think one gets an idea from the pace. Nearer
the time of death there are signs that patients are dying when
they become increasingly bed-bound, when their vital signs reduce,
when they stop wanting to eat and drink and they take to their
beds. Those are the sorts of clinical signs nearer the time that
someone is approaching death and very close to death, but around
six months it is much more difficult.
Q417 Chairman: Is there some research
that shows how long people may live after they stop taking substantial
food or drink?
Dr Jeffrey: Yes, and Dr George has alluded to
some of that already.
Q418 Chairman: You mentioned this
question of a paradigm shift. I am not sure I absolutely understand
what is meant by a paradigm shift, but perhaps that does not matter.
What I do want to understand is what the basis of your evidence
on this is. Hitherto, in the medical profession in our country,
acting within the law, death has been seen as something that would
not be brought about by the deliberate act of a doctor?
Dr George: Yes.
Q419 Chairman: Putting it very simply,
that would mean from the point of view of medical practice that
death was regarded as bad and something not to be brought about
willingly. If this Bill were to become law here, death would be
seen as something that in some circumstances would be a medical
good because it is a course of action that would be taken to improve,
as it is thought, the position of the patient?
Dr George: Correct.
10 Note by witness: Glare P, Christakis N, Predicting
survival in patients with advanced disease Oxford Textbook of
Palliative Medicine, edited by Doyle D Hanks GW, Chernyl, Calman
K Oxford University Press 2004 pp 29-40. Back
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