Examination of Witnesses (Questions 220-239)|
17 SEPTEMBER 2003
Q220 Mr Bercow: It would not be a
scandal if there were!
Mr Kramer: If there is absolutely
no prospect of recovery, where the functional aspect of the brain
is not working, where there is a part in the brain that is pumping
your heart and keeping you alive but there is no awareness of
your outside experiences and where there is no prospect of recovery
and there is an inability to interact with others and have a physical
or emotional experience, then it would be right to make a decision
in terms of withdrawing artificial nutrition and hydration, subject
to all the safeguards in terms of how decisions are made and second
opinions. Hazel's point is that decisions on treatment should
be based on the gravity of the illness and not the degree of the
disability and I think that is a very important issue in terms
of quality of life decisions and ensuring that different standards
or different assumptions are made and ensuring that different
standards of assumptions are made because of someone's disability.
I think that is a very important point that I share with Hazel.
Q221 Jim Dowd: We are in danger of
confusing a number of different elements here. The case of advance
refusals will really only apply to people who have had capacity
at some stage.
Ms Morgan: Absolutely.
Q222 Jim Dowd: Most of the people
you represent today will never have been in that position, so
cannot be regarded in the same way. To pick up my Lord Chairman's
point on what is the difference between artificial or non, is
it not the existence of a degree of choice? If people can take
food and nutrition by traditional means, they equally have the
choice to refuse it.
Mr Kramer: That is right, yes.
Q223 Jim Dowd: It is when that choice
disappears that it becomes artificial.
Mr Broach: And again the point
was made yesterday that basic care includes the ability, if you
can, to take food and water/hydration by natural means. So, we
are following the existing guidelines that the British Medical
Association have published.
Q224 Lord Pearson of Rannoch: I have
been put a problem by a legal friend whose reading of the Bill
is that lasting attorneys and deputies will have no clinical duty
of care under the Bill so long as they act within their given
powers, so they cannot be sued even if their decision could be
clinically negligent if made by a doctor. I do not know if you
would agree with that but, if so, does that put a patient who
suffered damages in those circumstances in a position where he
would have no legal remedy and no compensation in the courts?
Is that your understanding of the Bill?
Mr Broach: I think I may have
to say that we are not competent to answer that question. It would
be a very interesting question that perhaps the Law Society might
like to consider.
Ms Morgan: I could not answer,
but we are saying that these kind of decisions should be outside
the remit of deputies.
Q225 Baroness Fookes: If it is decided
by those who have authority to act on behalf of the incapacitated
person that artificial nutrition and so forth should be withdrawn,
is that not a decision that ought to be taken finally by a court
and only by a court?
Mr Broach: Not if the person in
question has granted the power to make that decision to another
person while they have capacity.
Q226 Baroness McIntosh of Hudnall:
I am very sorry but I am getting extremely confused here because
my understanding is that you are representing as part of the Making
Decisions Alliance people who are born with some lack of capacity.
Mr Broach: Yes.
Q227 Baroness McIntosh of Hudnall:
And indeed many people who were born with no capacity to make
decisions. Am I right?
Mr Broach: We are here representing
organisations who represent people who are born with a condition
that may impair their capacity and, to go back to a comment made
by Jim Dowd, many of the clients we work with will have capacity
to make decisions. So, it is those who are born with conditions
that may affect their ability to make decisions, which is why
we are still able to and have a duty to comment on issues such
as lasting powers of attorney and advance directives.
Baroness McIntosh of Hudnall: In which
case, I will withdraw at this point and come back to it.
Q228 Lord Rix: Can I come back to
what Hazel Morgan had to say about the word "recovery".
What is meant by recovery is open to debate. Would you like to
see a different phrase used rather than the word "recovery",
if a phrase can be found?
Ms Morgan: I am thinking hard
about this one. I am not going to answer your question directly,
but I think that if someone has the capacity to enjoy their life,
that should be respected. That is the right to life and I am again
expressing a personal view. I think that recovery is incredibly
difficult to define.
Mr Kramer: Can I try and answer
and I may regret trying to make a stab at it as I have a few times
today. I think your particular issue is about aspects of quality
of life and perceptions of health professionals about someone's
medical state and, if you are going to apply quality of life criteria,
they really should be applied to a person with a known disability
in the same way as a person without a known disability. People
value and enjoy their lives in different ways and they may enjoy
lives in ways which we would not choose for ourselves, but a consideration
of quality of life is only relevant in terms of thinking of the
gravity of the illness and not concerned with the nature and degree
of disability. So, a decision to withhold treatment on that ground
would be a clinical decision on the grounds that treatment would
lead to pain and suffering which is disproportionate to any benefit.
On that basis, the test should be whether the physical survival
of the person is in their best interests and whether somebody
could make something of their life in the context of their life
within their existence defined by their disability. So, doctors
should compare the condition of the individual before treatment
with the expected condition after treatment and they should be
considered relative to each other, rather than comparing the state
of a non-disabled person to a disabled person. What I am trying
to say is that, in terms of medical decision making, the nature
of the disability or the degree of disability is not a factor,
it is the context of the gravity of the illness. I do not know
if that is answering your question.
Q229 Lord Rix: It is.
Mr Kramer: I am trying to expand
perceptions in terms of quality of life which Hazel was talking
Lord Rix: I hope that has given all of
us food for thought.
Q230 Baroness Barker: I have found
this extremely helpful because this is a subject on which there
is a great deal of emotion which I find quite distressing. It
has been enormously helpful to me to realise that the focus is
on the decision at the point at which it is made and that all
subsequent decisions which are decisions about treatment of any
sort have nothing to do with a person's capacity at all. The question
I want to ask you is, if you look at Clause 23 of the Bill, do
you agree that there should be a presumption that a person has
capacity to make an advance decision and that, once that person
has made an advance decision, that should be treated with the
same regard as anybody else who has made an advance decision?
Mr Broach: We would have to agree
that because otherwise it would undermine the presumption of capacity.
Mr Kramer: Your point that these
issues are not to do with capacity is central and extremely important.
Baroness Barker: That is correct and
I found it very helpful when your colleagues yesterday talked
about advance statements to have treatment as well as the withdrawal
of treatment. I think those have thrown a great deal of light
on the issue we are talking about.
Q231 Baroness McIntosh of Hudnall:
Allowing for the fact that I have been struggling a little with
this and I am a little confused, the questions that I wanted to
ask you are about the issue of human nature which hangs rather
uncomfortably around these questions of advance directive and
withdrawing of treatment. Do you have a view about the concerns
which have been voiced extensively to us by a number of groups
that the provisions in the Bill for lasting powers of attorney
and for an advance directive to refuse treatment do amount or
could amount to the permitting of euthanasia by neglect?
Mr Broach: Yes, we do have a view
which is again the same as the view expressed yesterday, which
is in summary that what the Bill seeks to do is give the same
rights to people who can plan for their incapacity once they are
incapable that they enjoy now. So, euthanasia is something that
only those who have the capacity can do, and what we are talking
about here are people who lack the capacity to make the decisions
for themselves. Really, what it boils down to is that the argument
around euthanasia I feel personally is a bit of a red herring
because really what the argument is about is whether people should
be able to opt out of treatment including withdrawal of food and
hydration and that applies whether you have capacity or you do
not have capacity and that is the argument we were making yesterday.
Q232 Baroness McIntosh of Hudnall:
I am not sure that I entirely understand that because, in order
to opt out of the treatment, you have to have had the capacity
to understand that that is what you are doing.
Mr Broach: Yes and that is what
you are doing by making either a lasting power of attorney and
including those powers or by making an advance refusal.
Q233 Baroness McIntosh of Hudnall:
That is correct. It is my understanding that the issue that is
being put to us is that by allowing people at the point at which
they had capacity the right to make an advance directive of that
kindand this would be particularly true with the vulnerable
group of people where perhaps there might be a greater need to
establish capacity or incapacitythat then subsequently
for that advance directive to be implemented in relation to such
a person could be construed as a form of euthanasia by neglect.
I do not advance this as my view but I simply say that it is
Mr Broach: Our view is very different
in that what we are asking for is a right for people to plan for
their future incapacity and that, if an advance directive is not
appropriate, then it will not be implemented if it is not valid
or applicable. There are various safeguards in the Bill around
advance directives, so they do not have absolute status. For instance,
if a new treatment comes along that was not available when the
person made the advance directive, it would no longer apply and
the MDA supported those safeguards.
Q234 Baroness McIntosh of Hudnall:
That leads me to my second question which directly relates to
that point, which is that medical advances are happening all the
time. It might be thought that it was not wise to enshrine anything
of this kind in legislation when the likelihood of an advance
or indeed simply change, whether one construes this as advance
or not, is very high and it should be left to the courts. Do you
have a view about that?
Mr Broach: We do not as an Alliance
have a view on that but my personal perspective on that issue
is that the legislation does provide a degree of flexibility as
I have just outlined and that actually this issue is of such magnitude
that it would be better dealt with in the statute and I do not
think anyone here will disagree with me. I think these are issues
on which we need to go back with colleagues and perhaps we could
write to you.
Q235 Chairman: Are your views affected
at all by the evidence we have had which is strongly felt by people
who have a deep moral and religious belief that even if in fact
somebody wants to have advance refusal of treatment, they should
not be allowed to do so because it is morally wrong?
Mr Broach: I would argue that.
As an Alliance, we support the right of people to plan for their
incapacity and to make those decisions. I would also like to point
out that over 7,800 postcards were sent to the Lord Chancellor
by supporters of the Making Decisions Alliance in favour of our
position on mental incapacity legislation. So, there is a substantial
body of support for our line on this Bill as well as a body of
Chairman: Do not suggest that they send
a thousand to us!
Q236 Jim Dowd: Probably as contentious
as withdrawal of treatment in past directives, would you give
your view on the Bill's status vis-a"-vis the Human
Rights Act and Article 2 of Schedule 1.
Mr Broach: As again stated yesterday,
we see Article 2 as a right to life and we acknowledge the duty
that public authorities have to preserve that right and protect
that right, but we feel we should be able to choose not to take
up that right and therefore, in that context, we feel that advance
refusals are not contradictory to the Human Rights Act.
Ms Morgan: I would like to be
very sure that the right to life of people who lack capacity is
not threatened, undermined and damaged by this Bill.
Q237 Jim Dowd: Do you think it will
Ms Morgan: I think, for example,
if deputies can make a decision regarding withdrawal of treatment,
the decisions need to go to court and be very, very seriously
considered. I think the withdrawal of nutrition and hydration
is a very painful experience and that, if people choose to in
their advance directive, that is one thing, but to assume that
for someone who does not have the capacity undermines their right
Mr Broach: That is right and,
in our written evidence, we have said that deputies should not
be able to make that decision. There is another point in the Human
Rights Act which we would like to make note of in relation to
a different article: Article 8 and the right to respect for a
private life. I think this goes back to the very first point I
made at the beginning of this submission that our concern is that
powers in the Bill may become applicable to people whose capacity
has not been actively assessed. An assessment is not defined in
the Bill; it is not in the list of definitions. Obviously, how
someone is incapable of making decisions is set out as a test,
but there is no mechanism in the Bill for that test to be actually
applied. There is provision for a code of practice on assessment
which is one step forward, but there is a real concern that if
powers in the Bill did apply to people with the ability to make
their own decisions or to make some decisions but not others,
then that could well, in our view, contravene the spirit if not
the letter of Article 8.
Q238 Jim Dowd: But that would be
entirely subjective and would depend on the circumstances of the
Mr Broach: It would indeed.
Q239 Jim Dowd: It would not be an
integral part of the Bill.
Mr Broach: That is correct, but
to not at least define assessment within the Bill and give some
indication of how the test of capacity should be applied we think
is a mistake and omission, and in fact I think Hazel did come
up with some words that might serve as a definition of assessment
in the context of the Bill.
Ms Morgan: Yes. Assessment is
clearly in the Bill and yet it is not defined very closely and
I suggest that maybe this could be a possible definition, "A
process whereby an individual's ability to make a decision in
a specific area at a material time is determined and recorded
by appropriate people/professionals who know the person, professionals
from a range of background, so that the medical and social models
are acknowledged, depending on the area of decision making, with
the person who is judged to lack capacity also involved along
with their supporters or advocates."
Ms Clipson: If we could make the
point about advocacy now, we think it is very important and I
think we have raised in our submission the issue about how advocacy
in many of these things we have discussed today could be very
useful in preserving the rights of people in this position and
helping with the empowering and presumption of capacity issue
by clarifying whether people have capacity. So, for example, in
the assessment process, having access to an advocate would be
very helpful because most of the people I talked about at the
beginning who might have problems with communication and making
it clear that they have such capacity and in fact, in some of
the issues we talked about in terms of major life-changing decisions,
we recommended that there should be an access to advocacy in those
instances because they are such an important part of people's
Baroness Knight of Collingtree: Do you
recognise that one of the grave concerns about this matter springs
from the fact that, within living memory, other governments in
other countries have decided that mentally handicapped people
ought not really to be here at all and that something must be
done about that? Do you recognise the danger that there is so
frequently, particularly in the elderly who can easily be made
to think that they themselves are a burden to their relatives
and ought to asked quietly to be got rid of? Do you recognise
that that is a very real worry which undermines many of the letters
that we are receiving?