Examination of Witnesses (Questions 2040
- 2042)
TUESDAY 18 JANUARY 2005
MS MICHELE
WATES, DR
JIM GILBERT,
PROFESSOR JOHN
FINNIS and DR
FIONA RANDALL
Q2040 Baroness Finlay of Llandaff:
The Bill before us requires that the unbearable suffering that
we are referring to is related to the terminal illness that the
patient has. I wonder, based on your own experience of patients
who have been extremely distressed, when you have had these complex
conversations, what the nature of that suffering originated from
and how much it was related to the life experience and how much
it was related to the illness experience.
Dr Gilbert: I can give one illustrative though
not typical example of something which you might want to be uncovered
here of a man whose profound wish was for his life to be over,
a man who described in graphic terms how guilty and worthless
he felt. As a result of sensitive discussions over quite some
period of time it emerged that he felt this guilt as a result
of terrible acts, by his own admission, of child abuse in the
context of terminal illness. He was not alone in reviewing his
life and coming to some sort of summary as to how worthwhile it
had been. That is not a typical example but an illustrative example
of ways in which people reviewing their lives might well be distressed
by previous behaviours or activities or experiences that are producing
apparently unbearable suffering but where the relationship to
the terminal illness is at best a tenuous one.
Dr Randall: To take more every day examples
of this sort of occurrence of patients saying, "I'm fed up
and will be glad when it's all over". I think the clause
in the Bill where you have to decide that the patient is suffering
unbearably as a result of the terminal illness is clinically quite
difficult because you often have one surviving spouse who is ill.
The person who was their source of company and comfort is dead.
When they say they are fed up and they wish it was all over are
they asking to be out of this because of their illness, is it
the loss of their key relationship or are they suffering unbearably
as a result of the terminal illness? What is one meant to judge
out of all of this? I think that clause makes it very, very difficult
to disentangle what counts as being as a result of the terminal
illness and what counts as part of your social circumstances,
your previous life, self-esteem, total life experience. I find
that clause very difficult to imagine working with as a doctor.
Ms Wates: Another example might be an elderly
couple where they still had each other and they had a loving and
romantic relationship and then one of them becomes doubly incontinent
and the thought that her husband will be changing her incontinence
pads every day makes life seem unbearable and so she may actually
seek death. It is not trivial because to that individual it is
huge. For a reason as non-life threatening as that in actual fact
there are things that can be done to preserve the dignity of both
partners and with the right assistance that relationship can go
on thriving and those people can go on supporting each other.
English people have the expression "die of embarrassment".
This is a country where we are prepared to die of embarrassment.
These are things that have to be recognised. They should not be
a cause of death.
Dr Gilbert: Could I add one thing about being
a burden which if I leave the room without having said I shall
be disappointed? If people, as they do, recognise that at times
in their lives they are being a burden then we could respond to
that by agreeing with them and agreeing with them that that is
producing unbearable suffering and then behaving consistently
with that and helping them to end their lives or we could take
the view and express to them that, without denying that they are
being a burden at some stage of life, we are all a burden, most
obviously in infancy, but that it is a burden that collectively
we wish to shoulder, and behave in a way that is consistent with
that, ie not acknowledge that they should end their lives and
help them do so.
Q2041 Baroness Finlay of Llandaff:
I just wonder if Ms Wates would agree that the way that the doctor
responds or the carer or whoever gives the patient very powerful
messages about themselves and where things are going and whether
one of the fundamental tenets of our society as it is at the moment
is to provide care and support to those who are possibly the most
vulnerable. We have heard about the lack of resources that there
are for people and a speculation that resources for palliative
care would follow the enactment of this Bill, although we know
from the Dutch experience that there was no palliative care. The
Bill came in, there was a block of money, but then the Dutch decided
not to recognise specialist palliative care and indeed we heard
in Holland that the flow of money is now drying up. So there was
a peak and then it did not go on. I wonder, based on your discussions
with people who have a disability, how you feel that the resource
allocation would potentially be improved or not and how such decisions
would be made when resources may be used in another area of health.
Ms Wates: I think it was said earlier on that
the Bill is about the end of life. The Bill talks about unbearable
suffering in the context of terminal illness. It does not actually
say that it is focused on the end of life and I think that I and
many other disabled people feel that this Bill would have huge
implications in terms of palliative care and people who need assistance
to live. The whole principle of choice and the promotion of independence
I think would be subtly undermined by the passing of this Bill
and I think that is a very grave fear for a lot of disabled people
in this country as this law is being discussed. I would urge your
Lordships to realise just how much people feel threatened in life
by this potential legislation which, looking to the Dutch experience,
could really erode society's commitment to providing care and
promoting independence. Actually, the gloss is fairly chilling
because what is unbearable suffering? What is terminal illness?
Do I qualify? It really is scary. Please understand that I am
speaking personally. It does need to be addressed and it does
need to be realised that the Bill has huge implications in terms
of the living of disabled and ill people.
Q2042 Chairman: Thank you all very
much for the help you have given us. We are very grateful to you
for the help you have given and the way you have answered our
questions. You will get a chance to review the transcript in due
course. Perhaps in the meantime you would give us these references
because I would personally like to see the situation in relation
to the reports that we have seen. Thank you very much.
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