Examination of Witnesses (Questions 200
- 221)
THURSDAY 14 OCTOBER 2004
WITNESSES: MRS
PHYLLIS BOWMAN,
MRS CLAIRE
CURTIS-THOMAS
MP, MRS PAMELA
VACK, PROFESSOR
TIMOTHY MAUGHAN
and PROFESSOR ALAN
JOHNSON
Q200 Lord McColl of Dulwich: For
many years I have been involved in palliative care and was part
of setting up the first hospice for people dying of AIDS in Europe
in Hackney. I must say I am rather irritated by constant criticism
that I was a hypocrite in saying that I was relieving symptoms
with heroin and morphine when really I had in mind to kill them.
It seems to be that this criticism was based on an ignorance of
elementary pharmacology, because the dose of heroin to relieve
symptoms is a fraction of the dose required to kill— which
is, after all, the definition of a good drug. My specific question
to Professor Maughan is— could he say something, as he mentioned
something about sedation, about the difference between sedation
and killing?
Professor Maughan: In all good palliative care
and in all good medicine we should be giving the dose of treatment
that accomplishes the relief of the symptom. What we want to do
is provide the minimum effective dose. For most patients that
is very easily achieved without any perturbation of their consciousness,
and so we have patients driving cars around the place on stable
and relatively high doses of morphine because it controls their
pain. There are a few patients where that is not achievable and
where you have to increase the dose gradually to a level where
actually the patient is sedated, because their pain is such that
you cannot get that therapeutic window that we want, that we are
aiming for. That is the situation that we are talking about. The
intent is still the same; the intent is to relieve suffering.
The principle of practice is still the same—you are looking
for the minimum effective dose but the situation is such that
the minimum effective dose is a sedation dose. Although it is
a hard case, it does not alter the principles or the practice
of standard palliative medicine.
Chairman: Does anyone who has not asked
a question yet wish to do so? I am going to ask one or two. Lord
Joffe?
Q201 Lord Joffe: I would like to
ask a number of questions. Mrs Vack, I respect your courage and
your views in respect of your own life. At a previous session
of this Committee a Mr Barclay, who was a retired surgeon who
has Motor-Neurone Disease, gave evidence that he would wish to
end his life before he became totally incapacitated. Clearly,
as a surgeon he knew all about the available options. Would you
respect his views in relation to his life?
Mrs Vack: Yes, I would respect his own personal
view point and the evidence that he would be well aware of. I
have been asked this question on a number of occasions in interview.
When things get worse, which they will, one loses ground quite
quickly with all this and loses movement. When this happens, I
am personally completely confident that I would—even if
I lost all movement, which is quite possible—still retain
my mind with Motor-Neurone, my sight and my hearing. I would say
that those three faculties are precious and they can provide me
with some quality of life. The answer to that question is—No,
at no point would I request assisted suicide.
Q202 Lord Joffe: Your own views are
very clear and your courage is something we would all greatly
respect, but the question related to Mr Barclay.
Mrs Vack: I would accept his views.
Q203 Lord Joffe: Could I then move
to Professor Maughan? Professor, when you were responding to the
question of what could be done for those cases who want assistance
to die and for whom palliative care is not the solution, you said
that they could be sedated. It seemed to me that you were talking
about terminal sedation. Is that right?
Professor Maughan: No. The issue about the patients
where palliative care is not the preferred option is usually not
the pain issue; it is other issues related to a person's view
of the world, their relationships and issues about personal autonomy
and dignity. Those are ones for which sedation and pain relief
of any sort are not relevant issues. It is about dealing with
that person as an individual, relating to them and exploring other
ways. Very often the patients we see in the hospital whose physical
symptoms are most difficult to resolve are the ones where there
is a family or an emotional dimension to their pain which takes
time to uncover and to deal with. As you get to know these people
and your relationship with them, then you are able to explore
and help those dimensions of pain or dimensions of distress which
are not on the physical level. It is as you explore those that
you get to the bottom of what is making people think like this.
In many cases you are able to break through to help people. By
dealing with those underlying family relationships or emotional
stresses you can help them with the angst of the situation that
they are in and those requests can still be resolved, not on the
physical level but on the emotional and other levels.
Q204 Lord Joffe: So what you would
do with one of these patients who was insisting that they really
were suffering terribly and their suffering was not pain but really
a question of dependence, of lack of control, of lack of quality
of life, and they wanted assistance to die. My understanding of
what you said is that you would refer them to the psychiatrists.
Professor Maughan: I think there is a psychiatric
dimension to it and that you need to have your eyes open to that.
Remember that depression (a) is very common and (b) is very under-diagnosed
by most of us doctors. We are not very good at it and so we need
help. What is required here is the holistic approach to the individual,
which is what palliative medicine has been all about really; it
is not just about pain and symptom relief, it is about the holistic
approach to the whole person with the resolution of the whole
raft of issues. In the vast majority of patients, everybody in
my situation—and in the case of many of us—these issues
can be resolved. Obviously there are cases which come to the public
attention and I do not know to what extent those issues have been
delved into. I know that in my experience usually these things
can be resolved with patient work and assistance.
Lord Joffe: With the leave of the Chair
I just want to ask you one more question and one question to Mrs
Vack.
Chairman: I think your quota must be
coming near to an end Lord Joffe. I think one more question. Lord
Taverne wants to ask another question and I, on the whole, would
like the advantage of asking a question or two before twelve-thirty.
Please bear that in mind.
Q205 Lord Joffe: Yes. In your evidence
you said that the dividing line between the cases of end of life
decision, such as withdrawal or withholding of treatment and acceding
to the patient's request to be allowed to die, you said that the
line was very thin and you would be crossing over it if this Bill
were to be introduced. Can you tell me the difference between
the case of Miss B—who was kept alive on a ventilator by
doctors, who refused her request to turn off the ventilator and
eventually the ventilator was turned off by doctors—where
the doctor turned off a ventilator and the case of assisted dying?
Professor Maughan: The issue here is that she
is subjected to an intensive treatment and that there was a judgment
to be made about the burden and futility of that treatment. Those
are difficult judgments and maybe there were differences of opinion.
The decision to switch off the ventilator was one that was taken
and which, I think, as a principle is not something that I would
oppose. However, in withdrawing interventions your intention is
to reduce the futility and burdensome treatment and also, because
the intention is different, the outcome is not entirely predictable.
There are stories that abound about people where the ventilator
has been switched off and the patient has carried on breathing.
The outcome is in doubt when you withdraw intervention. You do
not know that it will lead to death. What you are doing is primarily
withdrawal of burdensome and futile treatment. When you come very
close to that line, I acknowledge that there are areas of very
grave difficulty where situations are grey. But to have that clear
line which says that we do not kill is extremely helpful. If this
Bill goes through, that line will be moved.
Q206 Lord Taverne: I want to ask
a fundamental moral question of Mrs Bowman. Am I right in thinking
that your view is that it can never be morally right to help someone
to die who asks for help?
Mrs Bowman: My sister was helped to die. She
was in a hospice. If you mean the statement about killing, then
yes, we are morally opposed to that.
Q207 Lord Taverne: In the first hearing
we had the case was put to us from America where a lorry driver
was trapped in a lorry and the lorry caught fire. There was a
policeman on the scene. There was no way of freeing the driver
and he was going to be burned to death. He asked the policeman
to shoot him and the policeman did. Was that policeman morally
wrong to save him from being burned to death?
Mrs Bowman: I do not think literally that is
the kind of medicine that we are dealing with, doctors deciding
whether or not patients are being burned to death in their beds.
Q208 Lord Taverne: But it is unbearable
suffering, is it not?
Professor Johnson: I really think that to argue
from an example like that is just extraordinary. You might argue
that because in one particular case it was right to lie to save
a person's life—and that is a classic dilemma of philosophy
that goes back a long time—therefore lying becomes the right
thing in all sorts of situations. We are not talking about somebody
who is burning to death in a lorry; we are talking about people
who are alert and being cared for.
Q209 Lord Taverne: Suppose it is
unbearable suffering, which is what the lorry driver was afraid
of?
Professor Johnson: The person who gave that
example concluded that society had no objection in principle to
euthanasia. That was the argument from that individual case, and
I do not think that is a logical argument.
Q210 Chairman: There are not many
countries that have an actual law dealing with that situation.
Obviously, if it arose it would have to be dealt with ex post
facto. I wonder if I could ask the doctors to help me about
the way in which the amount of time a patient still has left in
life is estimated. Do you follow me? How do you go about it?
Professor Maughan: I have this conversation
with people very, very often and it is very difficult to prognosticate.
We can quote people survival data. There is a lot of clinical
trial data where you can plot the line but you have no idea where
that person will come on the line. Although you can say that your
cancer is at such-and-such a level and this is expected, unexpected
things happen all the time. There are negative things, like sudden
pulmonary embolism, which lead to early death, and sometimes there
is the reverse where people live very much longer. The longer
I practise, the less good I am at this and the less I do it. I
try to avoid it. I will talk in terms of days or weeks or months
or years, but I reiterate very clearly how bad we are at this.
Professor Johnson: I agree with that. We are
talking about an average and there is a wide range around that
average, and you do not know where on that range that person is.
Q211 Chairman: What is the scientific
approach to doing it? How do you go about it? If it is on the
basis of an average, it is an analysis of cases past, I suppose,
by reference to conditions at a particular time?
Professor Johnson: But, of course, everybody
is an individual and you have to try to see if there are extra
factors in that person that affect the average. Often these averages
have quite a wide range and it is very difficult to say where
on that range they are. We may tell a patient there is a range
but I do not know any doctor who will say to a patient, "You've
got three months to live" or "You've got two months
to live".
Q212 Chairman: To be very precise
about it would be difficult, as you have explained. But is it
possible to say, "You're going to die within the next year
certainly".
Professor Maughan: The situation with patients
with lung cancer is that 10 per cent of those presenting with
inoperable lung cancer are alive at one year, so you can say to
a patient that from past data we know that nine out of 10 people
will have died with a year. But we do not know which patient is
going to be one of the nine or the one.
Q213 Chairman: I follow that. Is
that the best that can be done?
Professor Maughan: That is the best that can
be done. There is no way of predicting an individual's prognosis
because that individual is unique.
Q214 Chairman: From the point of
view on oncology is it possible to identify even the make-up that
may give rise to particular troubles—cancer, for example?
Professor Maughan: You can dissect out prognostic
factors, but all that does is provide you with an indication as
to whether this person has a 50 per cent chance of being alive
in five years or a 20 per cent chance or a 5 per cent chance.
But you still do not know whether they are going to be one of
those 5 per cent or not at the end of the day. You cannot tell.
Q215 Chairman: The other question
I wanted to ask you. The name of the organisation, Mrs Bowman,
of which you are the Executive Director, is Right to Life?
Mrs Bowman: That is right.
Q216 Chairman: Who has the right
to life?
Mrs Bowman: All of us have the right to life.
Q217 Chairman: The individual?
Mrs Bowman: Yes.
Q218 Chairman: Then the question
is— if a person has a right, normally they are entitled
to give it up?
Mrs Bowman: That was not the decision of the
European Court of Human Rights. They said that the right to life
did not equate with the right to die. They pointed out that the
right to die undermined the rights of vulnerable people. I would
mention that the Disability Rights Commission have pointed out
repeatedly that in the present day atmosphere disabled people
are becoming more and more frightened of being admitted to hospital
because of what could happen to them.
Q219 Chairman: I am anxious to get
the idea of the name. When you speak of a right to life, you mean
a right that belongs to the individual who has it and it cannot
be terminated by anyone else?
Mrs Bowman: No, that is correct. Not deliberately.
Q220 Chairman: Or by themselves?
Mrs Bowman: We have not legalised suicide and
you cannot necessarily control what people are going to do personally.
You can control what other people are going to do to them, and
that is the point.
Q221 Chairman: You mean that the
title is intended to imply that no-one else has a right or a power
to interfere with the life of the person who has the right. Is
that what you mean?
Mrs Bowman: Yes, that is correct.
Chairman: I see. Well, it is twelve thirty-one,
which is not too bad. We have to thank you very much indeed for
coming and, as I said at the beginning, you will get a chance
to look at the record taken of your evidence and a chance to correct
it if the record is wrong. Thank you very much indeed.
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