Examination of Witnesses (Questions 140-150)|
16 SEPTEMBER 2003
Q140 Baroness Knight of Collingtree:
Could I say a couple of words on that last point because I know
of one organisation already which provides people with a card
which they carry, like a donor card, which seems a lot less complicated
than having registers and all the rest of it, which says, "In
the event of my becoming unconscious and being in hospital, I
want to be kept alive". Now, that has got just as much status
as a donor card and I think that is important not to forget.
Mr Goss: Absolutely.
Q141 Baroness Knight of Collingtree:
The questions I really want to ask have been prefaced in the explanatory
text prior to questions, "Following the House of Lords judgment
in the Bland case, medical treatment includes the provision
of artificial nutrition and hydration." Now, I want to make
it absolutely clear for the record that that was the BMA's decision
and it is not legal at this time, but the draft Bill, if enacted,
would give the Bland decision apparently a statutory basis,
and this is a point which is worrying a very great many number
of people, and it is also the point at which my question falls
into two parts. One is not only the provision of artificial nutrition
and hydration through a tube down the nose or a peg in the stomach,
but also even when patients are able to take food and liquids
through the normal way, that also, since the Bland judgment,
has been decided is medical treatment. In other words, when we
all go for a meal, we are actually having medical treatment, which
I am very concerned about, I may tell you. Is it your view that
that definition of medical treatment should (a) include the provision
of artificial nutrition and hydration and (b) the normal intake
Mr Evers: This question is a very
Q142 Baroness Knight of Collingtree:
It is a very important one.
Mr Evers: It is very easily misinterpreted.
The Alzheimer's Society and our counsel believe that it is very
inappropriate for a person with advanced dementia to be given
artificial hydration and nutrition solely for the purposes of
prolonging life. The purpose should undoubtedly be about maximising
the quality of life to the individual at that stage and the BMA,
as you have said, have given guidelines on withholding and withdrawing
treatment. We have serious, ongoing concerns about the frequency
with which people in the terminal stages of dementia continue
to be artificially fed and hydrated. It is important that we know
that there are alternatives to that because when somebody can
no longer eat or take fluids, then there are ways of one-to-one
nursing, providing water, sips of water for the individual, sitting
by the person and giving them basic comfort. These are real practical
alternatives to the invasive approaches of tube feeding, so these
are issues that we think need to be taken into account and there
are options within the Bill to do that.
Q143 Baroness Knight of Collingtree:
Before you finish, Mr Evers, you said "the quality of life".
Now, that is one of the big problems, is it not, because who is
to decide on a person's quality of life? If a person is paralysed,
one doctor may say, "Your quality of life is so bad, you
may just as well die", whereas the person who actually is
paralysed may not think along those lines. Is that not a difficulty
in saying that you decide by the quality of life?
Mr Evers: It is a difficulty,
but we can also define quality of life. There is a lot of discussion
and research into how quality of life is decided and, in addition,
the opportunity for advance directives and statements whereby
an individual can make provision for what they wish during those
circumstances. Thirdly, where there is a close relative, that
relative or partner will undoubtedly know how that individual
would have wanted to be treated in those circumstances.
Q144 Baroness Knight of Collingtree:
I am so sorry, but you are not answering the question I have put.
The question I have put is: would you think it right to call feeding
people or giving them water medically treating them? I did put
it into two separate categories, one, if it is the peg or the
tube and, two, if it is the normal way of eating. I just want
to know whether you think that should be described as medical
treatment or not.
Mr Evers: Medical treatment would
include basic care. That is our understanding and basic care would
include, as I have described, giving sips of water, giving comfort
and that is what we believe should be included and the individual
should have the option to have that made available to them.
Mr Goss: It is difficult to know
where to step in on this one, but I will just offer a few thoughts
that I think may bear on the subject. There is a great danger
of allowing the issue of artificial feeding and hydration to get
blown out of all proportion and hijack the Bill. Very few people,
in our experience from our helpline, letters and e-mails, actually
opt for this form of refusal. In any case, if I have read the
Bill correctly, attorneys will only be able to make this choice
if specifically given the power to do so under clause 10, provided
of course that the BMA's plea for its removal is not accepted.
I stand to be corrected by Baroness Knight because I am not a
lawyer, but we thought that, though we are probably misinformed,
artificial feeding and hydration is treatment and it is certainly
invasive treatment. It has always been recognised that we have
the right to refuse treatment for any reason, for no reason or
an apparently irrational reason, regardless of consequences. Now,
it has been suggested that withholding artificial treatment, feeding,
is euthanasia by neglect, as I think I saw the phrase in the questions.
Well, we would only comment that withholding such treatment at
the express request of the person involved can no more be classed
as euthanasia by neglect than not amputating both legs of a patient
with circulatory disease in order to preserve life.
Q145 Baroness Knight of Collingtree:
That I fully understand, if anyone does not wish to be fed in
that way, but I am still wanting an answer to the question because
it is also the case that withholding food and liquid when anyone
can take it normally is classified as medical treatment. Do you
think that is correct or not?
Mr Goss: I can only speak directly
for Patient Concern. We think that what one might term "normal
feeding" is not medical treatment, but artificial feeding
is medical treatment on the grounds that it is invasive and we
have in fact in our organisation, sadly, either individuals themselves
or more usually their nearest and dearest who have said that the
individual has told us that if they had known what was involved
with invasive, artificial treatment, they would have declined
Ms Willmington: My understanding
of basic care is that it is about making sure that that person
is comfortable and that everybody should always have access to
basic care, so they should always be made comfortable and they
should always have what we are talking about in terms of moistening
of the lips and sips of water if that is appropriate, so our definition
of basic care is anything that I would in my non-medical way term
as good, palliative care really and that is about quality of care.
Mr Goss: Can I just add one further
thought on the concept of basic care. It may be for consideration
that this ought to be defined in the Bill and if that were the
case, we would suggest that it has three elements. It consists
of feeding those people who are able to accept food and liquids
in the normal manner rather than by invasive treatment, it would
include basic hygiene because, after all, that is in the individual's
best interests, for the benefit of staff and other patients, and,
lastly, pain relief. There is a difference of opinion on the question
of pain relief. Some people take the view that it is an integral
part of palliative care and, therefore, should not be optional.
On the other hand, we find people who take the view that they
would rather remain conscious as far as possible and, therefore,
do not necessarily want full pain care. Lastly, one has to remark
that there are some people who believe in the redemptive power
Q146 Baroness Knight of Collingtree:
I do not think we are so much concerned about that. There are
two other points and both of them, oddly enough, touch on something
which has been said previously this afternoon. First of all, do
you think that the provision of basic care, and I am grateful
for Ms Willmington's description of that, such as food and liquid,
should that be excluded from the scope of an advance refusal or
even perhaps the powers of attorney to refuse treatment?
Mr Goss: It looks like I have
been put on the spot again! We would take the view at Patient
Concern that basic care should cover normal feeding, ie, without
any technical things involved and you should not be allowed to
refuse that per se, but when it comes to invasive treatment,
well, you should have the right on that the same as anything else.
Ms Willmington: My understanding
is that we made a clear distinction between medical treatment
and basic care and that medical treatment is something that you
can refuse, but everybody should have access to basic care.
Q147 Mr Burstow: I just wanted to
pick up on a thread from a previous question, if I may, which
was the point that Mr Goss was making about an anxiety that he
and possibly others might have that this question of artificial
feeding and hydration and so on could somehow hijack the Bill.
One of the things that I understand the Making Decisions Alliance
was established to do was to enter into dialogue with other organisations
that might have such concerns. I would be very interested to hear
how successful that dialogue has been and how many other organisations
have responded to that.
Mr Goss: I have been invited to
a meeting of these groups tomorrow and I will make a point of
attending to hear their views.
Ms Willmington: I think the other
point is that the joint chairs of the Making Decisions Alliance
will actually be present at tomorrow's session, so they are probably
in a slightly better position to answer that one.
Q148 Baroness Knight of Collingtree:
So we watch this space! Finally, could I ask you this: in what
circumstances might starving a patient to death through the withdrawal
of artificial nutrition and hydration be in that person's best
Mr Goss: The answer is, I think,
that it is only in the best interests of a patient who has clearly
and specifically opted for this rather than enduring a long, drawn
out, living death. In effect, it is the least worst option or,
alternatively, if the patient has given the choice to their clinician
because they do not want to make it themselves, that is what the
clinician decides is in the best interests of the patient.
Mr Foster: I cannot speak from
the Mind perspective, it is in an entirely personal capacity,
but my father was in intensive care and was artificially ventilated
for some weeks and was artificially fed. There was a point when
he was rallying but there was a point at which his systems began
breaking down completely, at which point I do not think the family,
who loved him very much, wanted him to return. There was a point
at which we felt, "This cannot be right. We are artificially
prolonging his life when there is no prospect of his recovery".
I think that is a relevant factor. That was the situation but
it was very difficult because it was put by the medics on that
occasion, we were asked for our views but we could not possibly
give a view whether it was in his best interests or not. The doctor
very helpfully said, "I should really make the decision,
I just wanted to know what you thought based on your knowledge
of him. You are quite right, he would not have wanted to be kept
alive like that." I do not know if that helps.
Chairman: Thank you. There is an important
point on the Human Rights Act.
Q149 Jim Dowd: Yes, the Human Rights
Act, Article 2, Schedule 1. Committee members have received various
views on this. To some degree with most lawyers you pay your money
and take your choice, but it depends who you pay, and never ask
the question until you know the answer. The Joint Committee has
said this is compatible, we have had other submissions it is not.
What is your view on the compatibility of the provisions in the
Mr Goss: My understanding, and
I am not a lawyer and I say that again, is that the Human Rights
Act is concerned with right to life which is not about specifying
an individual obligation to life. The obligation to life is essentially
assumed by some religious faiths which we are all at liberty to
accept or reject. We feel in the end the law should not allow
a minority set of such views to prevail over the majority and
be enforced on them. I am sorry if that is provocative but we
are, as my good friend said, into emotional territory here.
Mr Foster: May I approach this
from a slightly different angle, again a lawyer's angle. I am
pleased to say all advice of mine is free of charge.
Q150 Jim Dowd: In which case it may
be worth what we pay for it!
Mr Foster: We discussed this before
coming before this Committee. I think the problem is arising because
Article 2 of the European Convention, which is as you say in Schedule
1 of the Act, talks about right to life, there is nothing to say
you have an obligation to keep yourself alive whether you like
it or not. The problem comes because in the Human Rights Act itself
there is a duty placed upon public authorities to uphold and enforce
the Convention rights. I can only speak again from a personal
point of view, I would say there is no incompatibility between
the draft Bill and the European Convention, the reason being that
the duty upon a public authority is to uphold a person's right
to life. If an individual said, "I actually do not wish to
be kept alive in these circumstances"and Mind hears
from a lot of people who say, "I cannot tolerate this any
more, I have been through this, they have pulled me back and back
and frankly I am fed up with it"at that point I think
the individual is saying, "I do not wish to uphold my right
to life". Then, of course, there is an issue about how much
reliance we put upon that and what their state of mind was when
they said those things, which of course must be looked at. But
ultimately I would say that has let the public authority off the
hook from their duty to keep the person alive when they have made
it clear they do not wish to be. That is the best I can do.
Jim Dowd: I am very grateful for that.
I am fairly certain we have not heard the last of that.
Chairman: We did have a question about
education, Question 18. If you would like to write to us on that,
that would be helpful. We have touched on the question of advocacy
but if there is anything else you would like to say about it,
that would be helpful too.
Baroness Barker: Can I ask, when you
answer that question, there is just one particular question I
would like you to address, and it is whether the advocacy services
established for the purposes of this Bill need to be separate
from other advocacy services. A number of us around this table
have dealt with a variety of different Bills in which the issue
of advocacy has come up. It is really whether it is possible to
have a multiple advocacy service. If you could address that, that
would be helpful.
Mrs Humble: I was going to raise that
and ask you a series of questions on advocacy as President of
Blackpool Advocacy. Much of the funding for advocacy services
now is short-term funding to develop specific services. Where
is the money going to come from? Should there be national funding
for a national service? Should it be national funding given to
the local councils to develop local services responsive to their
needs? Should it be ring-fenced funding and therefore on-going
funding? Then of course there is the issue about the quality of
the service, monitoring it and also letting people know about
the service and what it means. This is picking up in a way on
Jim Dowd's point, because simply using the word "advocate",
a lot of people think "lawyer", and it is not a lawyer,
so a lot of people do not understand what advocacy services do.
How best could people out there who could benefit from the services
know they are out there. If you could address those issues, that
would be helpful.
Chairman: Another extremely important
question is Question 21. We would like your views in writing on
what you think the effects would be if your proposals are not
Mr Burstow: Allied to that, it would
be useful if you could give us as part of the response to Question
21 some indication as to what the minimum requirement would be,
ie what your sense of priorities would be amongst the things you
have put forward to us for any additional resources which might
Chairman: Thank you very much indeed.
It has been very helpful, a most stimulating session, and we have
some more to come, as you know.