Examination of Witnesses (Questions 92-99)|
16 SEPTEMBER 2003
Q92 Chairman: Thank you all for your
written evidence, which was very helpful, and for taking time
to attend. The session is open to the public and it may be recorded
for broadcasting. There is a verbatim transcript of the evidence
which will be published with the Committee's report and you will
be asked to check the text for accuracy, although the unedited
text is put on the parliamentary website. If there is a division,
I will have to adjourn the Committee for about 10 or 12 minutes.
I think there should be a note of the interests of the members
which are relevant to this inquiry. Representatives of the departmental
and Bill team are present as observers. We are not required to
report on the White Paper on mental incapacity; we are asked to
report on the draft Bill and that is why the questions have been
structured around the structure of the Bill. Perhaps you would
like to introduce yourselves and if you wish to make a short,
opening statement you are free to do so.
Dr McCulloch: I am Andrew McCulloch.
I am the chief executive of the Mental Health Foundation which
is a charity working with people of all ages with mental health
problems and also people with learning disabilities. I would like
to say how important this Bill and this issue is for the service
users, carers and donors to our organisation. We are aware of
various issues coming up, including people who are not being cared
for properly, whose wishes are not taken into account in terms
of their practical, daily living and we are also aware of instances
where people are subject to abuse or have had their assets taken
away from them by others. It is a very important issue.
Ms Thompson: I am Pauline Thompson.
I am a policy officer at Age Concern with specific reference to
community care finance. My interest here is about the financial
issue and how we can use this Bill to learn from what has happened
and move on from EPAs where, when they work well, they work tremendously
well but, when they go wrong, they go very wrong; and how to have
the right checks and balances and how people who have lost capacity
can get redress if anything does go wrong.
Mr Goss: My Lords, ladies and
gentlemen, good afternoon. I never thought I would get the chance
to say that. I am Roger Goss, co-director of Patient Concern.
We are about gently nudging clinical culture away from its traditional
mode of "we inform; you consent" towards a more patient
friendly "we advise; you decide", in the case of those
people who want to exercise that judgment. I have been involved
with the subject of advance statements and directives for about
ten years. I made an oral presentation to the then LCD Minister
in response to the Who Decides? Law Commission report. As son
of the manse, I am very conscious of how sensitive the issue of
refusal of treatment is. I would only comment that the only difference
between groups opposed to this legislation and ourselves is that
those groups feel they have a duty to enforce their convictions
on everyone; whereas we believe everyone should have a chance
to make their own decisions. If it would be of any value to you
at some stage, Patient Concern specifically would like to suggest
a couple of amendments that we think would improve the Bill.
Ms Willmington: I am here representing
Help the Aged as a policy officer. We estimate that at least one
million older people are directly affected by issues of incapacity
and you can easily double that when you take into account carers
and other professionals. We strongly support the implementation
of this Bill with certain additional amendments, as suggested.
Mr Foster: My name is Simon Foster.
I am principal solicitor at Mind, the mental health charity, so
I have particular interest in the legal implications. The particular
focus that we have is around people with fluctuating capacity
where there are enormous issues raised for people who have capacity.
If they lose it, they regain it again and the question is how
to balance their own right to autonomy, to make their own decisions
against the need for protection, where required.
Mr Evers: Clive Evers, director
of information and education at the Alzheimer's Society, which
is a leading UK care and research charity for all forms of dementia.
We are a membership organisation with some 25,000 members who
have written to us over the last ten years about many issues around
capacity. It is important to note that there are some 700,000
people with dementia in the UK. Most of them are elderly but 18,500
are below the age of 65. People with dementia are living longer.
People are living for up to 20 years. Carers continue to be the
front line for looking after people with dementia and this Bill
is very important because it will provide justification for the
decisions that they have to take on a daily basis, but also important
protection for people with dementia as well.
Q93 Chairman: I think you have seen
the questions. If there are any questions that we do not reach
or if there are any suggestions you wish to make to us in writing
after the session, you are of course free to do so. Under the
heading "Best Interest", does the proposed check list
on best interest strike a balance between supporting the autonomy
of the person with incapacity and providing them with protection
and is the suggestion from the MDA that the "best interest"
should be replaced with "best personal interest"? Is
that just a question of semantics or is there something much more
important beyond that?
Ms Willmington: One of our concerns
about best interest is the issue that the person reasonably believes
they lack capacity. Anybody can act in somebody's best interest
if they really believe that person lacks capacity. We are concerned
that this tips the balance in the wrong way. We feel it gives
a presumption of incapacity and that goes contrary to the stated
aims and principles of the Bill which have a presumption of capacity.
It gives people the opportunity to say, "We presume that
person . . .", so I think we feel we would like to see that
either removed from the Bill or amended to have sufficient safeguards.
We felt that there should be included a reasonable expectation
about a decision over whether the person is going to recover and
be included in the check list of best interest. That is part of
the decision in terms of safeguarding best interest. Our main
concern about best interest is the conflict. You can get a medical
best interest; you can get a financial best interest or a welfare
best interest. This is why we specifically put in the point about
having the best personal interest as some way of trying to resolve
that debate and steer people when they are trying to resolve those
conflicts about what is somebody's best interest, to be able to
say it is what is best for that particular person, whether their
financial, medical or welfare best interest.
Q94 Chairman: The intention is to
treat each person as an individual so you would always be thinking
about a best personal interest. Is it not just semantics?
Ms Willmington: It is about particular
decisions where a doctor, for example, says, "I think I know
what this person's best interest is." Somebody else says,
"I think I know what this person's best interest is."
It is about trying to make sure that the focus is shifted away
from other people's interpretation of best interest towards their
interpretation of what they perceive of that person. It is important
that that word be included because of that.
Mr Evers: For example, the importance
of personal best interest would be in relation to somebody with
Alzeheimer's disease in a hospital setting or care home setting,
where they may well be prescribed neuroleptics to control their
behaviour. That may be in the best interests of other residents
in that hospital or care home setting, but it is certainly not
necessarily in the best interests of the patient.
Q95 Lord Rix: Does the draft Bill
provide sufficient protection for the best interests of people
with impaired decision making, people for instance with a learning
disability, who then become more incapacitated by mental illness,
dementia, age? Is there sufficient flexibility for changing capacity
in the Bill at the moment?
Mr Foster: That is a very good
question and quite difficult to answer until it is put into practice.
Like any check list of best interests, the question is of trying
to anticipate, trying to build in all the different factors, starting
from the point of view of supporting the individual to make those
decisions that that person can make, which must be the presumption.
Where somebody has impaired decision making, they are not incapable
of making any decisions. They are capable of making some and it
is a question of trying to help and encourage people to make the
decisions they can and then only looking at substitute decision
making for those areas where the person is not capable. I would
add the word "necessary" on the decision making where
a decision has to be made, at clause 4, paragraph one. The Alliance
is very keen on the whole on the idea of the general authority
but subject to proper safeguards and checks, in order to enable
that flexibility, where somebody's capacity fluctuates, where
somebody is impaired in the first place and becomes additionally
impaired as time goes on, who will have good days and bad days.
Q96 Mr Burstow: Can you give any
examples from other pieces of law or judgments by the court where
best personal interest has been defined? What would be the additional
test that would enable you to distinguish it from best interest?
In relation to the oral evidence we had last week, I was not here
but I have read some of the unamended transcript. There was a
question there about the Scottish experience of having a list
of principles at the beginning of the legislation. I wondered
why that was not something which you had looked at and, if you
have looked at it, why you think that best interest is more preferable
than best personal interest.
Mr Evers: We have looked at the
Scottish legislation quite carefully. Much of it we support. In
particular, we draw attention to the least restrictive option.
That is something that could easily be added, so we are aware
Ms Willmington: We still prefer
the concept of best interest or best personal interest than what
Q97 Baroness Fookes: Could I query
this illustration you gave that maybe the best interests could
be served in the home where the person might make a nuisance of
themselves rather than the person themselves? I would have thought
the Bill made it abundantly clear that the decision must be made
in the person's best interest. How possibly can you substitute
the home for that? It seems to me it is already absolutely clear.
Mr Foster: I used to be a child
care lawyer and the wording of the Children Act is rather different
language. It talks about the welfare of the child being the paramount
consideration. Once you start talking about best interest, it
is very tempting to say it is obviously in the best interest of
that person that there is harmony in the home, that the neighbours
are happy etc. It is very easy to lose the focus on the individual
who is being safeguarded, rather than the smooth running of the
home, which of course is beneficial to the interests of the person
as well. Trying to get that balance and trying to put the focus
very firmly on the individual and how that then squares with the
other residents etc. is the point the Alliance is trying to bring
Baroness Fookes: I am not convinced.
Q98 Baroness McIntosh of Hudnall:
I wanted to go back to the relationship to the Scottish legislation
because it feels to me as though best interest is a volatile concept
and we keep coming back to this issue. The Scottish legislation
provides that there has to be a demonstrable benefit to the individual
flowing from any decision that is taken on his or her behalf.
You presumably considered that as an alternative. Can you tell
us why you continue to believe that best interest, albeit amended,
is the right language, as opposed to any other?
Ms Willmington: It is the devil
and the deep blue sea. I am not sure we felt that there was one
magic solution. We felt this was possibly the best. We were happy
that this did reflect the ideas and underlying principles. I know
there is concern about how paternalistic it sounds and that is
one of the reasons why we felt we should add the best personal
interest as a way of trying to counter that.
Q99 Chairman: Which of the organisations
works on a UK basis as opposed to only in England? Are any of
your organisations experiencing the Scottish Act?
Dr McCulloch: We do work on a
UK basis. I have not had many reports yet of people experiencing
the Scottish Act. Its coverage is not going very far in terms
of depth and therefore one would not necessarily expect that at
this stage. The proposal that we have here would be more all embracing
in terms of day to day practice.
Chairman: As we go through the questions,
if there is anything which occurs to you where the experience
in Scotland would be helpful, perhaps you could tell us.