Examination of Witnesses (Questions 200-219)|
17 SEPTEMBER 2003
Q200 Stephen Hesford: May I just
continue on that. Could you foresee a circumstance where a person
had a reasonable belief that something should be done that they
did not objectively believe or hold the view that they reasonably
believed? What are the circumstances in which they would not themselves
objectively hold that view?
Mr Broach: We are dealing with
a client group who are born with conditions that will impair capacity
in adult life, and carers of people who are born with a learning
disability or with autism will have been with that person all
the way through their childhood and into their adulthood and I
think that many of those carers will not consider the possibility
where, at 18, suddenly that person will be able to make decisions
for themselves and therefore they believe it is completely reasonable
to say, "I have cared for this person throughout their life
and therefore I will continue to do so and I will continue to
make decisions on their behalf." We would challenge that.
We would not accept that.
Q201 Stephen Hesford: If that were
taken to its logical conclusion, that would not necessarily be
a reasonable belief.
Mr Broach: Yes, indeed, the reasonableness
of it would certainly be challenged, but we are asking for that
problem to be omitted from the Bill.
Q202 Stephen Hesford: In law, the
phrase "reasonable belief", which is used a lot, is
in fact an objective test.
Mr Broach: And, as was described
by our colleagues yesterday, our concern is how the Bill will
be used in practice in that carers may see themselves as being
people such as, "I am a reasonable person and I believe that
what I am doing is perfectly acceptable."
Q203 Stephen Hesford: This is actually
quite a tough test for a carer to undertake.
Mr Broach: Our position is that
we would prefer a slightly tougher one.
Chairman: We will now move on to court
Q204 Lord Pearson of Rannoch: Do
you feel that there are sufficient checks and balances on the
face of the Bill in relation to the powers of court-appointed
Q205 Lord Pearson of Rannoch: Will
the court of protection be sufficiently accessible to those with
Mr Broach: I will take the deputies
question first, if I may. Our colleagues yesterday outlined that
the Bill was in accordance with the court of protection's duty
to investigate conflicts of interest when deputies are appointed.
For example, if a care home manager was already the deputy for
five of his residents and a sixth application was made, we would
want the court of protection to investigate whether that was appropriate.
We also want to see a clear link to the protection of vulnerable
adults registers being established and Criminal Records Bureau
checks. We have said very clearly in our written evidence that
we do not think that deputies should be able to give authorisation
for the withdrawal of artificial food and hydration, unlike our
position on lasting powers of attorney because there the attorney
is at least given that authority by the person when they have
capacity. Those are the points that were made yesterday, but I
would like to make some additional points. Firstly, our experiences
we have seen so far in Scotland suggested that families are being
encouraged perhaps to apply for wider powers than they need because
it is seen to be more convenient for deputies to be appointed
across a very wide set of grounds. The Bill itself precludes that
at 16(4) but we want to make sure it is very clear in guidance
that the deputies should only be appointed with the narrowest
possible remit and indeed for the shortest possible time, if that
is appropriate for the person. An area that was not touched on
yesterday at all was appointeeship and, with the Bill creating
deputies to deal with a person's finances, we then have potentially
the double situation where appointees exist governed by a completely
separate set of regulations to those who are managing a person's
affairs as a deputy. So, we think that appointees should be brought
in to the scope of this Bill. Our final concern around deputies
is that the borderline between the general authority and the occasion
when you would apply to become a deputy is very unclear at the
moment because, with the general authority being so broad, we
do not really see many situations where a family or carer would
feel the need to apply to become a deputy. That is a problem which
is again a reason why the general authority needs to be more circumscribed.
Chairman: We will now move to withdrawal
of treatment. I am sure you will not be surprised to learn that
we have received an enormous amount of evidence and submissions
and letters on the whole subject of withdrawal of treatment, past
directives and past orders etc.
Q206 Baroness Knight of Collingtree:
Up until now, we have been dealing with people in whom you are
interested when they are well and in normal life environment.
Can we move on to the question of when they are ill. As my Lord
Chairman says, we have had an enormous number, almost an unprecedented
number in my experience, of letters expressing concern on this
matter. Do you agree that the definition of "medical treatment"
should include the provision of artificial nutrition and hydration?
The nutrition and hydration is not the artificial part, it is
conveying the nutrition and hydration. Do you see that that should
be medical treatment or not?
Mr Kramer: We are going to repeat
very much what was said yesterday in terms of, is artificial nutrition
and hydration medical treatment or not? The view that was expressed
yesterday and indeed we are giving today is that it is medical
treatment and that you make a distinction between that and basic
care. We also acknowledge that decisions on withdrawing artificial
nutrition and hydration raise very difficult ethical personal
issues and there are points of views and I know that the Committee
have received huge representations. So, decisions on withdrawing
artificial nutrition and hydration in cases where somebody lacks
capacity are decisions that need to be taken very, very carefully
and that, in circumstances where there is a complete inability
for someone to have any physical or emotional experience at all
in terms of their function of the brain where there is no activity
in the cortex, so that their brain is not functioning in terms
of understanding and interacting with their environment, and where
there is no prospect of recovery at all, then the safeguard is
needed in terms of withdrawing artificial nutrition and hydration.
I think the point that has been made by the Scottish Law Society
and by the MDA yesterday is the concern over this issue having
undue prominence in the discussions on this Bill when this Bill
is about principally supporting people to make decisions. In any
event, I think it will strengthen the right of carers to be involved
in medical decision making, strengthen the right of the individual
to do so and make sure that health professionals are more accountable
for the decisions which they are making, which I think is in the
interests of all parties because health professionals not only
expect their decisions to be reviewed but they also want to have
greater certainty in terms of the decisions they do make.
Q207 Baroness Knight of Collingtree:
That is very clear except for one point that you raised. I was
a little surprised that you feel that the decision as to whether
or not a person wished to live was a rather minor decision. I
would have thought it was a major decision.
Mr Kramer: I do not think I have
said that. I accept that these decisions are very, very serious.
We are dealing with decisions on withdrawal of artificial nutrition
and hydration. I think that they are very, very serious decisions
and that they need very serious decision making, but they are
seen by the MDA as a medical decision.
Q208 Baroness Knight of Collingtree:
Yes and that was the question I asked you. Now I would like to
ask whether you think that it should be classified as medical
treatment when a patient is able to take food or water in a normal
way. Should the ordinary business of eating be called medical
Mr Broach: I think we would refer
you back to the answer that was given yesterday.
Q209 Baroness Knight of Collingtree:
I am very interested in what was said yesterday but I am more
interested at the moment in what you say.
Mr Broach: Our position is that
basic care, which includes provision of food and fluids by normal
means if you like, should not be covered by advance directives
and by lasting powers of attorneythat was the position
that was given yesterdayand that therefore that they do
not constitute medical treatment.
Q210 Baroness Knight of Collingtree:
Do you think that the provision of basic care such as foods and
fluid be excluded from the scope of an advance refusal or from
the powers of attorneys or deputies to refuse treatment?
Mr Broach: Yes.
Q211 Baroness Knight of Collingtree:
Finally, I would like to ask you this and this is a very important
question indeed. In what circumstance might you consider that
starving a patient to death through the withdrawal of artificial
nutrition and hydration would be in that patient's best interests?
Mr Kramer: I think I have set
out the criteria in terms of when the decision of withdrawing
artificial nutrition and hydration would be taken in the best
interests where there is complete inability to have any physical
emotional experience whether in the present time or in the future
because there is no activity in the cerebral cortex and there
is no prospect of recovery. Subject to that, the health professional
will have to make that decision and seek second opinion for making
Q212 Baroness Knight of Collingtree:
You will be aware that there are now in production by some groups
cards like donor cards which state perfectly clearly that the
patient, if unconscious, still wishes to be given facility to
live insofar as he or she can. Would you allow credence to be
accepted on a donor card like that?
Mr Broach: Yes and I think that
is a very helpful point to make because we are answering today
for people who were born with incapacity and who cannot plan for
their future incapacity. If you have capacity and you wish to
make a positive advance statement of that sort, much as you are
able to make an advance refusal, then you should be able to do
so and we think that the Bill should include advance statements
such as request for treatment, which is the point that we were
Q213 Baroness Knight of Collingtree:
I can only say that I am grateful for that reply but the question
of best interests is not quite the same as was covered in the
first point. As regards the question of a person being starved
to death or dying from lack of liquid, it is very difficult to
imagine any circumstances when dying of thirst could be actually
in the best interests of the patient concerned.
Mr Kramer: Inevitably on these
issues because there are huge ethical, moral and personal interests,
one's personal perspective does come into play and I think that
is why people have different views. In terms of technological
development, it is possible to prolong someone's life indefinitely
through artificial nutrition and hydration, even where there is
no prospect of recovery and even where there is no activity in
the brain. That is why decisions on withdrawal of artificial nutrition
and hydration are important and that is why there need to be important
safeguards, but there is a concern about artificially prolonging
someone's life, prolonging someone's life in an artificial way,
and not allowing people to die naturally. That is my personal
perspective. I know that Hazel will want to give another personal
perspective, but I think it is important to listen to different
Ms Morgan: The issue of safeguards
is of enormous importance. We are talking about people who are
very, very vulnerable, incapacitated and possibly unable to make
decisions. My perspective comes from a personal one because my
son actually received nutrition and hydration through peg-feeding
in the final months of his life, he having been born with learning
disabilities and having had severe strokes. So, I am speaking
personally here. It is of the utmost importance that people with
learning disabilities and people who find themselves in this situation
have sufficient safeguards in order that their lives are not put
at risk, and I do have a very serious concern about this for obvious
reasons. I also would like to make the point that there are quite
a lot of people with severe and profound learning disabilities
who live with peg-feeding and I think there is a danger that we
are thinking about dying rather than about living and I do think
that this is also an important issue. My son was able to live
for another 11 months with this feeding, it was not withdrawn,
and we enjoyed life together during those months. So, I think
there are some enormously important issues and that safeguards
have to be very, very, very, very tough.
Mr Broach: Just to bring us back
to try and give the whole MDA perspective because obviously you
heard the group yesterday and us today. The key answer to the
question, "When would it be in the person's best interests
to have the nutrition and hydration withdrawn?" is, "When
they have expressly wished it to be so when they had capacity."
So, that is an absolute position of the Making Decisions Alliance.
In terms of our group, the issue is far more complicated because
people are unlikely to be able to make those decisions for themselves.
However, having said that, there will be many people within our
groups who can express their wishes or feelings in advance statements
and perhaps potentially even in advance directives and I think
it is really important that we do not lose sight of the need for
positive advance statements on medical but also on other issues
because I think they are a very valuable way of recording a person's
wishes and feelings.
Q214 Chairman: I am a little puzzled
about the distinction that has been made between the artificial
provision of nutrition and hydration and the natural provision.
Is the answer in the answer which your colleague gave of activity
in the brain? Clearly, if you are able to take food and to eat
naturally, there will be activity in the brain presumably. Whereas,
if you are being artificially fed . . . What is the logic behind
the distinction between the artificial provision and the natural
Mr Kramer: As a non-doctor, I
will try and answer that question. My understanding isand,
please, do correct me if I am wrongthat somebody can receive
artificial nutrition and hydration for a short period of time.
They may go into hospital for problems with their stomach and
they need artificial nutrition and hydration for a short period
of time and that may actually benefit the individual. Artificial
nutrition and hydration is not just provided in those end-of-life
situations where somebody cannot function in terms of their brain
and there is no prospect of recovery. It can be used as an intervention
at earlier stages.
Q215 Chairman: I have someone in
my family with motor neurone disease who was fed and drank artificially
for something like a year but his brain was still active.
Mr Kramer: My personal experience
is of somebody who was receiving artificial nutrition and hydration
but chosehe had the capacity to do sonot to do so.
He could have gone home and he would not have died immediately
but his health would have badly deteriorated. He took a decisionit
was his decisionthat he felt that his quality of life and
his meaning in life would have been better if he did not continue
to receive that artificial nutrition and hydration. From my limited
experienceand this is again from very much a personal perspectiveit
is not death that is a fear for people but the process of dying
and the difficult experience through that.
Baroness Knight of Collingtree: Could
I clear up one matter very quickly because it was brought up twice
yesterday and has been brought up today. The House of Lords accepted
last Friday in giving a third reading to a Bill that said any
person who asked not to receive artificial nutrition and hydration
should not have to do it. So, can we move that point out of any
future discussion because that is agreed on every side.
Q216 Mr Bercow: I think I am clear
about Mr Kramer's answer to Baroness Knight, but I would like
to do more than think, I would like to be certain, so let us establish
this for the avoidance of doubt. If someone gives advance notification
that he or she definitely wishes to have his or her life prolonged
by artificial hydration or if someone gives no indication either
way, he or she, as far as you are concerned, should receive absolute
protection. Certainly that would be my instinctive view, am I
clear that that is yours?
Mr Kramer: That is a good question.
If the advance directive is not clear and does not mention artificial
nutrition and hydration, then the decision will be best interest
and involvement of the individual or those close to him. The harder
point to your question is this, if it is specifically mentioned
in an advance directive and whether it has to be followed in all
circumstances. I thinkand this is my personal viewthat
it would be possible for a doctor to review that decision where
the alternative is artificially prolonging one's life when there
is no prospect of recovery in the terms I have suggested.
Q217 Mr Bercow: I must say that,
having felt momentarily uplifted by your previous replies, I am
really very anxious now. That is not your fault but it seems to
me that we are in danger of moving away from the primacy of the
ethical principle towards the triumph of administrative convenience
and, dare I say it, even considerations of the money men at the
Treasury. That is what worries me about this. What I am getting,
Mr Kramer, is that, first of all, advance notification you fear
. . . Perhaps I should not use that evaluative term. Point one,
advance notification you suggest will not be an absolute protection.
Point two, since you referred to considerations of family members,
can I put it to you that the person who is the most vulnerable
of all is a person who might well have given advance notification
but who has no close family relatives and whose earlier judgment
is likely to play very much second fiddle to the current view
of a particular doctor.
Mr Kramer: Yes. If it is in someone's
advance directive, it will have to be taken into account. What
I am saying is not that a doctor will see the decision to say,
"I want artificial nutrition and hydration in any event"
and the health professional says, "I am going to go back
on that" because that cannot be done, but there needs to
be a time of review of that decision and, if those safeguards
are met where there is no prospect of recovery and there is no
activity in the brain, then I think that, in those circumstances,
it would be permissible to say that the right to artificial nutrition
and hydration on an indefinite basis is not absolute.
Q218 Mr Bercow: You would be content
Mr Kramer: This is again my personal
view so, please, do correct me. I would not want you to think
otherwise. The power at consideration is to give respect to that
individual's views and, if that is reflected in advance, that
should be reflected in practice. However, there has to be a decision
in terms of what is in that best interests and whether it is in
the best interests of a person to keep someone artificially alive
in circumstances that I have suggested where there is no prospect
of recovery etc. I think these things are very difficult and do
need to be resolved in a proper way in terms of a second opinion
and maybe a decision of the court of protection, but I would not
be uncomfortable in saying that there should be a right to keep
people alive indefinitely when there is no prospect of recovery
and there is no activity in the brain.
Mr Broach: I think we need to
clarify what the Bill says because the Bill at the moment only
provides for advance refusal to the treatment which are absolute
statements unless they are undermined
Q219 Chairman: We are coming on to
Mr Broach: We would argue that
there does need to be provision for positive advance statements
on the face of the Bill, but the defence is that you cannot select
treatment, you can only consent to treatment that is offered to
you. That is the argument that has been put to me as to why advance
statements cannot have the same level of authority in the Bill
as advance refusals have, and that is a legal point which I do
not have the answer to but that is the argument that has been
Ms Morgan: The MDA has said it
is generally applied. It is so difficult to get a common view
because it is such an emotive and difficult issue. For people
who are judged to lack capacity, there is a real, real danger
here that decisions are going to be made and it comes back to
the best interests point and to think very much of the best interests
of that person/individual in that situation. Where there is no
hope of recovery is a very broad phrase. There can be limited
recovery and sometimes there can be recovery so that the artificial
nutrition and hydration is not necessary. Sometimes, people with
profound learning disabilities who receive artificial hydration
and nutrition can live for many years.
Mr Kramer: Yes, but we need to
be very specific in terms of the safeguards. I take your point.
You are not bound to detect a difference of opinion.
Ms Morgan: No, but I just wanted
to clarify it.