Examination of Witnesses (Questions 520
- 524)
THURSDAY 2 DECEMBER 2004
MS LIZ
SAYCE, MS
JANE CAMPBELL
MBE and MS TARA
FLOOD
Q520 Lord McColl of Dulwich: Can
I take up that theme because in fact I did tell that story here
in the Committee to a Professor of Ethics at Kings College. You
are absolutely right. A man had advanced cancer and it involved
his bones which mobilised his calcium so his calcium rose to dangerous
levels in his blood. Of course, if you take the right tablets
you can keep the calcium level down to a safe level. He came into
the hospice, he asked for euthanasia and was told they did not
do that. After a few days he kept on asking and the doctor suddenly
said, "Wait a minute, those tablets you are having, they
are keeping your calcium down. If you stop the tablets you will
be dead tomorrow. So it's very easy; just don't take them."
He never stopped taking the tablets. When I told the Professor
of Ethics at Kings—who was sitting where you are now sitting—he
dismissed it as just an anecdote. It is not an anecdote; anecdote
means something that is unpublished and this has been published
and there are many places where it has been published, it is well
known. However, could I go back to the business of this Bill?
There is a phrase "hard cases make poor law". Of course
there are occasions when you feel that somebody might benefit
from euthanasia, possibly just occasionally, but to pass a law
to make that possible, hard cases make poor law. I came here as
a professor of surgery 15 years ago; I am not a politician but
I have seen some pretty poor laws. They come in, they are passed
rapidly then they have to be revised and revised again and so
it goes on. I think the problem with this Bill is, as you rightly
said, you are standing on a cliff edge and not a slippery slope.
The law is a great dam, it keeps back the wildest successes of
the wild men but it also holds back that huge potential for evil
inherent in us all and once you pass a law that allows killing
that will continue as indeed it did in Europe. I agree entirely
with what you say and thank you very much for saying it. Would
you agree with that analysis of this Bill?
Ms Campbell: I think I might. I just want you
all to know how wounding and hurtful it is every time I hear or
see in the papers pictures of somebody that looks just like me.
In fact only two weeks ago in the Observer there was a
picture of a person and tubes were coming out in all directions
and the big headline was, "You would want to be dead rather
than like this". In fact, that was me last year; that was
me the year before; that is me at night. It is incredibly disempowering
and I want to empower people like me and people who are in the
last stages of their lives. Actually, that part of life is just
as important as birth. Ten years ago my husband died of AIDS;
he was a haemophiliac who was sadly infected by the Factor 8 cock-up.
He was obviously dying in the last year and we had some very,
very sad and down moments, but that last year of his life I will
remember with great love and attachment because we did all that
we could to make that last year the best one. Yes, he was there
with tubes, he was there with all sorts of horrible things but
because I had the wherewithal to know what kind of independent
living support that I could bring into the house he died at home,
he lived at home and nobody ever got uppity about his tubes. That
made it worthwhile and I think that is what we should be concentrating
on, not on all this dying business.
Q521 Lord Joffe: Coming to the position
which you say about empowerment, you have great courage and strength
and can somehow miraculously cope with the thought of being in
a bed with tubes coming out at all angles from you. However, there
are some people who do not have that courage and do you not think
in your opposition disabled people are being deprived of a choice
and that far from you empowering them by your approach you are
actually deciding what is right for them?
Ms Campbell: No, I do not because the people
I talk with who are expressing exactly those kinds of fears are
the people who have never been near a tube in their lives and
have not got to that stage of experiencing and, believe me, experiencing
is everything. The experience of having a few tubes and being
assisted 24 hours a day, being taken to the loo and all those
things that we all say we could not bear is nothing in comparison
to the pain of losing my husband. Nothing. So I just think that
we have got it wrong; we are placing such an emphasis on how intolerable
these situations are. There are many disabled people who, as you
know, are talking about this being right and they want this legislation.
I do not deny them that but in my own experience of talking to
people who are in those kinds of intolerable situations I would
say 99 per cent would say to me that experiencing is everything
and their experiences are not what I read in the paper.
Q522 Lord Joffe: Why do you think
it is then that in the surveys that have been taken the majority
of disabled people support this Bill: the British Attitudes Survey,
the survey by at Oxford University, a survey which has just been
undertaken by YouGov which will be distributed which shows that
of a baseline of 2000 people and of the disabled people who were
part of that group 79 per cent would support the Bill. There is
not a survey that I have come across—including one which
the Commission itself undertook—which shows that disabled
people (as opposed to disabled movements) actually oppose this
Bill.
Ms Campbell: If I say to you that every survey
that has been undertaken by organisations that are not run or
controlled by disabled people have very different outcomes to
those that are, that might give you an idea of what I think about
statistics. I was in intensive care at the time, but what about
the public debate?
Ms Sayce: Yes, I think that first of all one
obviously has to look at how questions were asked and options
people were given and so on; we do not have time to go through
all the details of that. One thing that is notable about some
of the evidence that we see is that when you ask people who are
young, relatively fit—even if they might be classified as
disabled under the DDA, they might have had a slight mental health
difficulty or might have a bit of diabetes or something—their
attitudes may still be more similar to the non-disabled public
and I think you have to disaggregate in some respects because
what the evidence does clearly show is that when you are young
and you are not disabled you may think you would rather be dead
if you could not play sport, but at least you would rather be
dead than using a wheelchair. Once you are using a wheelchair
you adapt to that but you think you could not be able to cope
with life if you had a condition whereby, in addition to using
a wheelchair, you had difficulty breathing and needed a ventilator.
Do you know what I mean? People do adapt to each stage and this
explains the apparent discrepancy with the figures in the survey.
I think it is something like 90 per cent of people with quadriplegia
say they are glad to be alive whereas only five per cent of the
doctors treating them imagine they would be glad to be alive if
they were in their position. There are all these kinds of differences
of perspective depending where you sit. There is also the interesting
question of how questions are asked and what people think they
are answering. We had a debate with very, very powerful speakers
on both sides of the debate and a mixed audience of disabled people
and other interested parties. At the beginning there were fairly
evenly divided views in terms of should there be legalisation
of assisted suicide. This was a much more deliberative approach
to how you gather public opinion. Opinion did shift in favour
of the position that this was too dangerous at the moment. There
were a lot of things people had not thought of or fully considered.
It is the same as polling public opinion on things like capital
punishment. When you do a citizen's jury you expose people to
the arguments on all sides and there is often a shift in view.
This is complex territory but I do not think we can take too much
from polls of the wider public's views or even only of the position
of disabled people in general. I think the people whose views
really matter are those people who are in the sorts of positions
who are facing these kinds of difficult decisions about possible
death, about very significant and long-term impairment. We need
to know what they think. Personally I have not seen research which
has really given the answers on that.
Ms Campbell: I bet you, if you came to our 60
CILs around the country—where they have had the opportunity
to really think about this and have a good informed debate with
others, people like me—you would not get that outcome. I
think a lot of it is about informed debate, it is about self-awareness,
it is about empowerment. When I met other disabled people in the
Disabled People's Movement I was so turned around in my own self
image it was almost phenomenal. That was getting to understand
the social level. I believe that that is the same here and that
is why we need far more debates and far more awareness about the
possibility of living with very complex and severe impairments
in this world before we go down this road.
Q523 Lord Carlile of Berriew: Those
who have drafted this Bill place a high degree of responsibility
in the hands of the medical profession. I have a two-part question
about that. First, do you feel that the group of people about
whom we are talking in this Bill, at that terminal stage of their
life about which we are talking, are sufficiently autonomous vis-a"-vis
their doctors to be able to exercise true autonomy? Secondly,
do you have any comments to make about the robustness or effectiveness
of the ethical disciplinary procedures applied by the medical
profession in this country to prevent inappropriate deaths?
Ms Campbell: The answer to your first question
is no, I don't. I have plenty of experience and anecdotes to give
you that would substantiate that. Secondly, when I went back to
the hospital that, quite frankly, tried to kill me and tried to
take disciplinary procedure against the two consultants, they
closed ranks. It is almost impossible to bring doctors to book
around their behaviour or their clinical judgment. You have to
be extremely energetic and extraordinarily clever. I remember
being in the room with the Chair of the Trust and the lawyer and
they were phasing me with all these legal terms. I am pretty clever
and it completely did my head in and I thought no, there are some
things you can pass on, Jane, and I passed.
Ms Sayce: We have certainly done consultations
and research and looked at research as well on disabled people's
experience of health services generally and it is clear that many
people have absolutely excellent relationships with their doctors
and other health professionals but clearly not in all cases. As
I think doctors themselves at the BMA recently said, doctors have
some of the same prejudices as the rest of the population and
therefore disabled people do experience prejudiced attitudes from
the medical profession and that makes disabled people nervous
and aware of how the odds are stacked in the negotiations and
the discussions, if you like.
Ms Campbell: I think it would be right to say
that that is why we are conducting a formal investigation into
the primary care services experienced by people with mental health
and learning difficulties. I think that probably answers your
question. There are three really good doctors in this country—two
of them are in this room—and that is not a lot, is it?
Q524 Baroness Thomas of Walliswood:
We have heard some moving and impressive evidence. I would like
to approach this from a slightly different point of view. We have
heard a lot of evidence in previous sessions about how rare it
is for people who are approaching death and in particular if they
are getting good treatment to ask for suicide. It is not a common
thing that happens in people's experience. However, what interests
me is that people are, in fact, allowed to commit suicide; it
is not an offence, it is not a crime to commit suicide. If, as
a clinician, you do come across that rare person who does quite
clearly wish—not because he or she has been pressurised
or for any of these reasons—to commit suicide, is it right
that the doctor should be pressurised by the fear of 14 years'
imprisonment if he assists in that suicide? That actually is what
this Bill is about; it is about the penalties and proper behaviour
of doctors just as much as it is about anything else. It is written
in fact in terms rather similar to the Abortion Bill.
Ms Sayce: I think that firstly there has obviously
been a lot of discussion in the past in relation to these issues
about so-called double-effect although I understand that the evidence
for double-effect has been questioned more recently. I think the
first point is clearly where doctors prescribe medication that
is primarily for pain relief, if it did have the effect of shortening
life that doctors would not be held to blame in any way for that.
That would be the first point. I think though that it is very
interesting that the major medical bodies have not come out making
the point that you are raising. There is clearly a very large
number of doctors who would not want to participate in assisted
suicide and therefore the representative bodies of the medical
profession have raised some very significant concerns about assisted
suicide so rather than wanting to be able to do this in order
to meet the requests of patients, doctors are actually rather
more anxious that they will not have to do this and that it will
not be left—as I think Tara was saying—with patients
shopping around to find one of the minority of doctors who are
prepared to do this. In terms of whether doctors should be placed
in that position, I suppose that what I am arguing is that the
majority view of the medical profession is that the medical profession
does not want to be in the position of administering death and
therefore I think that what doctors are in the business of doing
is alleviating suffering, providing treatment and that is what
they can continue to do if the law stays as it is.
Ms Campbell: Can I also say something about
committing suicide because although people can take their own
lives without being in fear of legal redress, we would do, as
a society, everything that we could to stop a person committing
suicide, including grabbing them if they are about to jump off
the bridge. I want the same for disabled people; I want the same
for people at the end time of their life or in the time of their
life where they are at that particular stage where they would
want to take their life. I would want you all, if I said to you
that I want to end my life now, to stop me one hundred per cent
and I do not think we feel that way about people in that state.
Baroness Thomas of Walliswood: I think
there was a rather wide discussion as to whether or not those
who attempt suicide actually want to commit suicide. I think in
some cases they definitely do and they get extremely angry if
they are resuscitated in hospital. We are going a long way beyond
the remit of this discussion so I will stop it there.
Chairman: Thank you very much indeed
for coming along to help us with your evidence. We greatly appreciate
your attendance.
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