Examination of Witnesses (Questions 60-79)|
10 SEPTEMBER 2003
Q60 Stephen Hesford: To save time
it was the global balance issue. For my part I could not see that
you could split it up, so it is the whole thing really.
Dr Lyons: You can split it up.
Personally I would not want to work under this Bill. If this became
an Act I would not want to work under it; I would have grave reservations
Q61 Stephen Hesford: As a practitioner?
Dr Lyons: But I do like the definition
of "incapacity" in the Act with the provisos that I
have laid down.
Q62 Chairman: Your colleagues agree?
Dr Bowden: Yes, on the Act as
a whole as it stands I very much prefer the Scottish version.
I think there are particular issues around general authority to
treat. In terms of the specific aspect of definition it does come
down to the detail about how that is operated in practice.
Q63 Lord Rix: I am coming from Mencap's
point of view. We find that the title of the Bill and to a certain
extent the Scottish Bill is slightly demeaning and slightly threatening.
"Incapacity" indicates something whereas capacity is
more positive. I notice in Canada in the equivalent Bill, which
comes back to what you were saying just now, is called Substitute
Decision and Advocacy Act, which is what you were saying a moment
ago. I findand I know this is Mencap's view, but it is
my personal view as wellthe use of the word "mental"
and " incapacity" has a threatening tone to it and covers
a whole belief in the Bill. You are looking always on the negative
side right throughout whereas if it is a more positive title you
can have a more positive and friendly view of the Bill.
Professor McMillan: It is not
clear to me there is an advantage in having the word "mental"
in the title of this Act.
Dr Lyons: I agree.
Dr Bowden: Yes.
Dr Lyons: Yes, and I like the
"Substitute Decision Bill". It is an excellent idea.
Q64 Huw Irranca-Davies: To return
to 2(1) and the definition of "mental incapacity" your
comments contrasted this aspect of the Code of Practice, and your
position is that you feel quite content working what is laid down
here with your provisos. In the way that legislation is drafted
do you feel there is any suitable combination that would refer
to Codes of Practice that could flesh out and add more detail
and so on. Do you feel that this should be on the face of our
Dr Bowden: I think one example
might be in terms of the use of the term "unless all practicable
steps have been taken." What in fact does that mean? For
a GP who has perhaps seven minutes to see an individual, what
practicable steps has that GP to take in order to make a decision
about capacity? Under the Scottish Act that GP should be ensuring
that he or she is communicating well with the individual, that
he is taking the wishes of the individual into account, that he
is consulting with relevant others including the family and other
carers who may be involved with that individual. How far that
actually operates in practice is unclear. Our suspicion would
be that some GPs, or indeed other medical practitioners, do so
very thoroughly following all of the principles of the Act. Other
GPs will take the view that it is not reasonable or practicable
(which is the term in the Scottish Act) for them to spend all
of that time to do it. They know their patients and will say,
"I have made my decision under the principles of the Act",
whereas I, as someone involved in supporting that individual,
would argue to the contrary, so detail about what "practicable"
means in the Code of Practice would be of great benefit.
Q65 Huw Irranca-Davies: On the face
of the Bill?
Dr Bowden: I think Codes of Practice
would probably be where it would sit better.
Dr Lyons: In all the Codes of
Practice it has got a very clear step-by-step guide as to the
best ways and the best environments to assess somebody's capacitymaking
sure we do it in an environment familiar with the person, supportive
for them, comfortable for them and in a way that is best for them.
The Committee suspended for a division.
Chairman: I am informed that we are quorate.
Q66 Baroness Knight of Collingtree:
I am going to try and roll a few questions up. I think the first
one I want to ask is in what ways would the inclusion or perhaps
a more explicit emphasis of these general principles in our draft
Bill actually assist practitioners working with people with incapacity?
We have heard a good deal which has helped us very much on this
particular principle, but I thought I should give you the opportunity
to answer that question. I want to go on to say could you tell
us the relative merits of the concept of "benefit" and
"best interests" in this particular context. Is the
proposed "best interest" check-list likely to be useful
to clinicians working with people with incapacity? Would it, for
instance, enable a balance to be struck between supporting the
autonomy of the person with incapacity and providing them with
protection? Finally I would like to say I was rather alarmed to
hear Dr Lyons say that if a person was not consistent then he
Dr Bowden: Touché.
Q67 Baroness Knight of Collingtree:
I must admit that rather alarmed me. In the sphere of what we
are talking about I was particularly thinking of someone who had
one of those mental illnesses which they come and if the person
takes their medication they go, so that you could be inconsistent
at one moment and fairly consistent the next. I was a little bit
concerned about that. I am sorry to have rolled all those up but
there they are.
Dr Lyons: Can I take that last
point firstly. I said that was in relation to a very specific
instance given where somebody makes the decision and then given
the same information says, "No, I do not want that at all."
If that is done within a very short space of time you have doubts
about that person's capacity. Somebody's capacity may fluctuate,
somebody may be incapable for a short time. That is a very important
point to makethe capacity can either be temporary or permanent.
There may be instances where you have to temporarily intervene
to help somebody when they are incapable for a short period of
time until they regain capacity, and then they are capable.
Q68 Baroness Knight of Collingtree:
So there can be a time limit on incapacity?
Dr Lyons: Absolutely, absolutely,
yes. It is not an all and nothing, it is not start and then continue.
You only intervene using the Scottish Act for example for as long
as that person is incapable and when that person retains capacity
the Act no longer applies to them.
Q69 Baroness Knight of Collingtree:
Do you think that would also apply to our draft Bill?
Dr Lyons: It might be worth making
it a little bit clearer in the draft Bill that the capacity can
either be temporary or permanent. Not having the Scottish Act
in front of me I cannot remember but I think the Scottish Act
says that; the Codes of Practice definitely do. If I come back
to the other question you rolled up and particularly if I compare
the best interests test within the draft Bill with the five principles
in the Scottish Act, the very first thing the Scottish Act says
is that there shall be no intervention in the affairs of an adult
with incapacity unless that intervention will benefit the adult.
That is the very first thing the Act says and that really sets
the tone for the whole Act. I do not see that tone in this Bill.
Q70 Baroness Knight of Collingtree:
The trouble with that is that people's opinion of what is beneficial
for a certain person can vary greatly.
Dr Lyons: And I would argue that
the benefit has to be evidence based. You have to be able to say
at the outset, "Is what I am going to do likely to be of
benefit to this person?" What is the evidence for that? I
say that particularly with regard to medical treatment because
that is my forte. If I can give you an example of that. One of
the concerns that you will hear in this Committee is the use of
sedative medication in people with dementia in nursing homes.
What benefit is that having for that person? One might come along
and judge it is in their best interests to be sedated, but where
is the evidence base for the benefit of that intervention? And
in Scotland that is what you would have to test it against, and
that is why I like the idea of "benefit", which I think
is a more defined concept than "best interests", which
I do not think is defined even in this.
Q71 Baroness Knight of Collingtree:
But might it not be? Certainly there have been instances of this
where some doctors have felt it was in a person's best interest
to end their life.
Dr Lyons: I do not think any doctor
in this country thinks it is the best interests of somebody to
take active steps to end their life, no. We will probably go on
to talk about issues to do with advance statements and withdrawing
and withholding treatment. I want to say one thing on what Mr
Ward said, for every one Tony Bland case, for every one
Law Hospital case, there are hundreds of thousands of people
with advanced cancer, with advanced dementia, with advanced stroke
disease and we have to make decisions on whether or not to intervene
day in day out. The Law Hospital case and the Tony Bland
case were high profile, but those are not cases that should dominate
our thinking in this area.
Q72 Chairman: Almost all the cases
you have just mentioned would have capacity. Is it right that
if you have got advanced cancer you still have capacity.
Dr Lyons: No, in advanced cancer
you may have brain secondaries, you may have lost capacity, if
you have advanced dementia you may very well have lost capacity.
Dr Bowden: A person with a learning
disability and cancer.
Q73 Lord Rix: There is a question
here which flows on from that. To what extent can scrutiny by
research ethics committees provide the necessary safeguards to
protect people from exploitation for the purposes of research?
I personally do not like the word "research" at all
because I think, like "mental incapacity", it has a
certain threat behind it, so I would rather they found some other
word, like "treatment".
Dr Lyons: May I outline first
of all what the Scottish Act says about research and my colleagues
may like to come in, as I am not a researcher by trade. The Scottish
Act does permit research involving people with incapacity under
certain restrictions. It must be research into the care, treatment,
causes, et cetera, of the incapacity itself. It must be research
that cannot be performed in people who are capable. It says in
the Act that the research must be likely to be of real and direct
benefit to the adult. We all know that if what we were going to
do was going to be of real and direct benefit, we would be doing
it, we would not be researching it. That is not what research
is about. The Act has to say that because of the general principle
in the Scottish Act about benefit. Then it gives you a clause
which says if it is not going to benefit the adult it must be
likely, through greater understanding of the condition, to provide
real and direct benefit to others who suffer incapacity. It is
then up to the research ethics committee to decide what that link
might be. Then it must involve no or minimal foreseeable risk
or discomfort and must have a consent from a proxy with authority
to give consent, or failing that the nearest relative, and that
has caused some difficulty in undertaking research where there
may not be a nearest relative or where the research may be into
actions involving the nearest relative, perhaps even allegations
of potential abuse where the nearest relative is not the appropriate
person to get consent from. That has been highlighted as an issue
for the Scottish Act. Maybe colleagues with research backgrounds
might like to add to that.
Professor McMillan: I agree with
what you say. The other category that I would mention is of course
acute cases which may be presenting at accident and emergency
where of course you cannot get consent, but where we do want to
improve care and treatment. We want to understand about symptom
persistence and psychological issues in these cases. At the present
time it is quite difficult to do research in that category of
case, although I note there is a comment in the draft Bill about
Dr Bowden: One further point on
it. The Scottish Act as it stands, however, can act as a disincentive
to local research which may be small pilot projects that would
lead to a more established research programme because of the fact
that that then has to go to the national ethics committee for
approval. It can discourage the low level of research and we need
to be careful about that.
Q74 Laura Moffatt: Gentlemen, I need
to return to the issue of benefit. You heard the question that
I asked previous witnesses but of course I cannot ask that because
you have not got withdrawal of treatment as part of the Scottish
Act so therefore my question is going to change. Firstly, as practitioners
are you glad about that? Are you glad that you do not have to
include that decision-making as part of the Act? Secondly, I was
so pleased to hear you say, Dr Lyons, that you should not really
concentrate on the high profile cases because as a nurse for 25
years I know very many more decisions are having to be made that
are not high profile and it is going on from day-to-day and it
is quite difficult. Could you first of all tell me if there are
any advantages to decoupling that issue? When you see the weight
of evidence that has come to the Committee on that particular
subject then I am beginning to see it too, to be honest.
Dr Lyons: I absolutely understand
the anxieties people have about this whole question of withdrawing
or withholding life saving treatment. I have a couple of things
to say about that. First of all, can I be clear with the Committee
that in the eyes of the Ethical Department of the British Medical
Association there is no difference legally and ethically between
withdrawing treatment and withholding treatment in the first place.
I know it might look different and it feels different when you
are doing it, but the end result in either case is the person
is going to die.
Q75 Laura Moffatt: Is that a benefit
Dr Lyons: Mr Ward saidand
I completely agree with himis it the intervention you have
to decide on, not the non-intervention, okay, so if I am in a
situation where a person has lost the ability to eat and drink
and lost the ability to swallow, has an advanced illness, an advanced
degree of dementia, I have to make a decision as to whether it
is going to benefit that person to intervene. That is the decision
I have to make. I do not decide is it going to benefit them if
I do not intervene, I say is it going to benefit them if I intervene.
That is the test. That is where it goes back to the evidence because
the evidence base in the population that I deal with is that if
you do try and intervene a) it does not benefit and b) using an
artificial feeding apparatus causes distress to the person, it
is uncomfortable for them, and does not prolong that person's
life. That is the evidence and that is what I mean by evidence
Q76 Laura Moffatt: I hear absolutely
what you say but you have almost persuaded me that "best
interest" is the best wording here then.
Dr Lyons: I disagree. I think
the evidence-based test of benefit is the best way to look at
Professor McMillan: Could I just
raise a little bit of a flag for the high profile cases not because
they are high profile but because the category of case that we
are talking about here. In the Law Hospital case and Tony
Bland case we are talking about people with severe physical
incapacity and in those cases extremely severe mental incapacity.
I would like to emphasise some of the points Mr Ward made. There
is an important issue in terms of having robust assessment where
there is any doubt whatsoever that the person is unable to communicate
and where essentially you may have somebody who is locked in but
who has been adequately assessed, and it may be felt that the
decision is that feeding intervention should be withdrawn. I want
to raise a little flag for those cases where there is a communication
difficulty and serious physical handicap.
Q77 Baroness Fookes: I cannot myself
see the difference between "best interest" and "benefit"
taken at face value. Is the problem for you that "benefit"
is a more modern term in relation to the legislation and "best
interest" carries, what shall we say, a history, it carries
Professor McMillan: Can I make
a comment here. I liked Mr Ward's hierarchy where he had best
interest at the bottom because the other steps you go through
are evidence based and I think that is the crucial element. You
are looking at evidence and by the time you get to best interest
you are more concerned with opinion.
Q78 Baroness Fookes: But why should
you not look at evidence or tie it in with best interest?
Professor McMillan: It may be
an issue to do with semantics which I think somebody raised earlier
on, but with benefit you are looking at something which you assume
is going to improve the lot of the person and there is specific
evidence for that.
Q79 Baroness McIntosh of Hudnall:
Can I just pin this one down because this is a really tricky bit
of ethical unpacking that we are doing here. I think, Dr Lyons,
you said earlier on that there would be no doctor in this countryand
I am not quoting you but this is what I heardwho would
see being dead as a benefit or dying as a benefit.
Dr Lyons: I think you are misquoting