Examination of Witnesses (Questions 400-419)|
9 OCTOBER 2003
Q400 Mrs Humble: Would you recommend
to us that rather than have general authority we have the Scottish
system where there is the three different elements, there is the
legal decision-making process, the health decision-making process
and there is a third element, the social care process. Are you
suggesting to us that we should be filling the gap by having a
separate function, a separate way of making those decisions? If
so how would that work in practice? One of the advantages of having
a general authority is that it is not high bound by rules and
regulations and having to seek advice from another authority because
we are often talking about very day-to-day decisions, decisions
that need to be made straightaway and are often not in themselves
hugely important or have huge consequences but are nevertheless
vital to that person's day-to-day existence.
Mr Bogle: I agree. The difficulty
is that the law is rather a blunt instrument. Most of those activities
are carried out currently without any intervention by the law
and relatively rarely anything ends up in front of the court.
In a sense although there is a lacuna and it ought to be filled
one needs to be careful about using the blunt instrument of the
statute to try and set up a framework for decisions that really,
as you say, are day-to-day decisions that nobody is going to challenge.
Q401 Mrs Humble: Except there are
often disagreements with family members and paid carers or statutory
agencies, so it may not go to court but it can go through complaint
procedures and cause a lot of aggravation.
Mr Bogle: Yes, and equally inevitably
when we lawyers and judges get hold of it there will end up being
rulings with wide-ranging consequences.
Lord Habgood: I read this with
some bewilderment, who sets up this authority? Who decides that
B is a suitable person is to do all these things? Who checks that
B does not embezzle the patient's funds? Who decides which person
may do these acts?
Q402 Chairman: It is a functional
approach. If that happened you would decide that I should be the
best friend on the protection order.
Lord Habgood: Who decides?
Q403 Chairman: I volunteered.
Lord Habgood: If I am mentally
incapacitatedwhich I am beginning to feel I amhow
do I tell you I want you to act on my behalf and spend my money?
Q404 Chairman: Then I have the protection
of the law in this Bill.
Lord Habgood: How do I tell you?
If I cannot do it who can?
Q405 Chairman: If are you completely
incapacitated you will have a doctor or indeed a relative.
Lord Habgood: Should it not say
in the Bill how such a person is designated?
Q406 Lord Rix: The draft Bill authorises
unwise decision-making by making it clear that lack of wisdom
does not mean lack of capacity. How do family carers and others
reconcile the duty of care with empowering decisions that are
seriously or consistently unwise. You talked about teeth: Somebody
may well have rotting teeth but they expressed a wish they do
not want to go and have them out. I just want to know how the
Bill could cope with that.
Mr Bogle: Going back to the point
about how things are done in the Scotland, I presume you were
not referring to the Adults with Incapacity (Scotland) Act you
were referring to the general law in Scotland?
Q407 Mrs Humble: I was referring
to the equivalent act in Scotland. We had a presentation from
Scottish lawyers out how that worked and how they did not have
the general authority but they had set up different organisations
to do a similar job to the one that is outlined in the general
authority. Not quite, there were differences and as a non-lawyer
I would not put words into the mouths of the lawyers who sat in
front of us.
Mr Bogle: There are some problems
with the working of that Act in Scotland. I apprehend from reading
some of the evidence that was the feeling among some of the lawyers
from Scotland who gave evidence to you, and also particularly
among the clinicians, non-lawyers, doctors. The problem is not
so much how you protect people from unwise day-to-day decisions
so much as straying into the whole area of medical decision-making.
That is where it starts to get much more confusing and complicated
rather than the kind of decision-making for mentally incapacitated,
disabled or mentally ill persons that I suspect your Lordship
is talking about. That is the area where the problems arise. If
you have a power and give it to a third party or indeed if you
allow a piece of paper, a legal instrument, which is what an advance
decision would be if it were in writing (but of course this Bill
does not require it to be in writing) then you have a situation
where somebody and something can direct a person who is a medical
practitioner, who is qualified in the area and is clinically able
to deal with a particular patient, (it could be a psychiatrist,
but it need not necessarily be), to do something that he knows
is clinically negligent and yet he will be required to do it under
pain of sanction. That is requiring something of a doctor that
we should never really require. That is where the danger in giving
this broad authority backed up through attorneys and advance directives,
begins to create problems. Whilst I would agree with you and with
Mrs Humble there is lacuna that needs to be filled in so filling
it as widely as the Bill does we then run into an area where problems
arise and doctors are then being told by the lasting attorney
or advance directive that if you do not withdraw this treatment,
if you do not stop the treatment, and I have the power to tell
you to stop, because this Bill has given me that power, then you
will be committing a serious disciplinary offence. Ten the doctor
is obliged to do something that may well cause harm to the patient
but which, at the end of the day, if he does not do, will result
in a very severe sanction against him. That is what troubles me.
Q408 Lord Rix: How do you protect
the carer? Suppose an unwise decision was taken by a person who
was deemed to have capacity but, nevertheless, an unwise decision
was taken and the carer says no and stops that decision being
fulfilled. What protection is there for the carer so that he or
she is not taken to court by a relative who thinks that the unwise
decision should have been allowed?
Mr Bogle: My immediate response
to that would be general law in relation to necessity. I imagine
you are thinking of a circumstance where there is an argument
over whether necessity applies.
Q409 Lord Rix: Yes.
Mr Bogle: That would be a matter
ultimately for the court to determine of course and any doctor
or carer exercising good faith as the law stands at the moment
taking an action and exercising such discretion as they have in
the clinical best interests of the patient so to act, as well
as the general best interest. I do not think there will be any
sanction against a person in the way that you envisage. There
would however be such a sanction against the doctor if you put
the very strong powers that are envisaged under this Bill into
the hands of a person who is not clinically qualified.
Q410 Chairman: In the examples that
you give of a doctor surely if the doctor had a moral or religious
belief that said that he would not do that then you are protected,
they will not be told to do something which is against their moral
or religious belief.
Mr Bogle: I am glad you asked
that question. I apprehend we have some members of the Muslim
Doctors Federation. Yes, doctors would be obliged under this Bill
as it stands. There is no "conscience" clause in the
Bill. But equally one has to ask oneself, to what extent would
the average doctor say I have a conscientious objection to delivering
clinically negligent services to my patient? I am not sure that
is necessarily a matter of value systems ,belief-systems or faith
so much as simply a matter of good clinical practice. All doctors
whether they be Muslims, Jews, Christians or have no faith at
all are going to say surely, are they not, that they do not want
to deliver a clinically negligent service.
Q411 Baroness McIntosh of Hudnall:
I am very confused by this argument for one reason, if I as a
competent person decides that I am faced with the treatment which
it would be clinical negligent of my medical adviser not to give
me but nonetheless I decline to take it the medical adviser in
that case is at no risk whatsoever of being held to account for
not delivering that treatment. As I understand it, and I defer
to our witness who is a lawyer, if somebody is given a power of
attorney that power is given by the person who originally had
the power and the donee therefore acts as if he or she were that
person. I cannot see why a doctor is at any greater risk in that
situation than they would be if the patient were making the decision
on his or her own behalf.
Mr Bogle: You have hit the nail
on the head. The problem is that the original person making the
decision has a perfect right to say, because of the principle
of autonomy, I do not want this treatment but they will suffer
the consequence, not the third party. In the case of exercising
a power of attorney albeit appointed by the patient if the decision
is clinically negligent the attorney will not suffer consequences,
only the patient.
Q412 Baroness McIntosh of Hudnall:
With great respect that is not the point that is being advanced
to us, what is being advanced to us is that the doctor will suffer
the consequences, which is a different matter.
Mr Bogle: The doctor will suffer
the consequences for the following reasons. If the third party,
the attorney, makes or requires a decision which he in good faith
believes is right for the patient (and he will believe it is in
the patient's best interests, or else, presumably, he would not
be advancing it) and the decision is clinically negligent then
the doctor is faced with a problem which is very different than
if the patient himself asks. This is because a person who is not
going to suffer the consequences and has no duty of care is requiring
the doctor to do what is clinically negligent. In those circumstances
if the doctor decides not do that he will legally be deemed to
oppose the consent of the patient exercised by an attorney. Consent
having been withdrawn, the doctor in giving treatment he believes
clinically necessary will then not only be committing what potentially
is a disciplinary offence but technically what is also a criminal
Chairman: We now move on to new decision-making
Q413 Jim Dowd: Before I move to questions
four and five apropos of what was said earlier about best interests
and people not knowing necessarily themselves, when my mother
was in the latter stages of the breast cancer, to which she eventually
succumbed, she was offered chemotherapy and backed by her medical
advisers at Kings College Hospital to undertake the course. She
was completely sane and competent and she declined. She did that
in the full knowledge of the consequences because she did not
think it was worth it, are you saying that she did not do that
in her best interests? Is that the submission that was made earlier?
Certainly Lord Habgood mentioned it.
Dr Watt: I think the Act was talking
about the fact that best interests had to be given due weight.
It is not that you always have to do what is in someone's clinical
best interest, moreover sometimes the treatment would actually
be burdensome. All we are asking is that clinical best interests
be basically acknowledged so that when someone is trying to make
somebody die by denying them treatment that that should be a criminal
offence, and that they give them due weight. We are not saying
that clinical best interests is negligible.
Q414 Jim Dowd: I do not share that.
I am convinced, because we discussed it at the time, that she
made that decision in her own best interests. You are trying to
say there is another best interest that should have applied in
making that decision.
Dr Watt: None of us are saying
that decisions about something like chemotherapy, which is not
suicidally motivated, made by a competent person should not hold.
It is a different scenario if the patient is suicidally motivated
and if they are refusing something in advance without being given
the opportunity of being given information on that treatment which
a competent person had and if they are refusing basic help, if
they are refusing advanced pain relief and feeding, even by a
tube, we would see that as different from refusing something with
full medical knowledge and without a suicidal intervention.
Dr Treloar: I think it is undoubtedly
the case that in the best interests of your mother in her judgment
meant that she should not have treatment. There is no question
that it is clinically right or in the clinical best interest at
time you withhold treatment like that, I do not think any of us
have a problem with that. If I might give you a slightly different
example of a gentlemen I looked after three years ago with severe
dementia, he was very distressed, very agitated, very confused,
dreadfully incapacitated and one would imagine, although he did
not know this, that had he written an advance directive he would
have said "I only want treatment to alleviate my mental condition
and my distress", indeed that is what his son said to us.
He said, "no medical treatment, treatment of a mental health
nature to alleviate my father's distress, that is what I want".
The point about good clinical care is that in that circumstance
the reason he was like that was because he had a heart rhythm
disturbance. I had to go back and talk to the son, who we gave,
in effect, powers of attorney, to say, "we want to treat
this person with cardiac medicine, simple oral medicine".
Interestingly he was just flying out of the United Kingdom, he
was going through passport control so if I had rung him fifteen
minutes later he would have been on a plane and I could not have
spoken to then. In this case where it was clear we had been giving
good medical clinical care which led to the improvement and the
alleviation of that person's symptoms which could not have been
achieved otherwise. In best interests there really should be consideration
of what is good care and what will help. The second and third
are when we get into these complicated decisions, when we get
into things like advance directives of course it is terribly helpful,
as Baroness Finlay said, if draft directives give you guidance
and it be can helpful. If they prevented me from treating that
person as I think under current legislation they would the effect
of that would not have been a problem for me but it would have
been that the patient who would have suffered. I come across a
lot of examples in my work with severely demented people in the
later stages of dementia where those kind of things occur. Happily
we negotiated with the son and explained it to him and he said,
"of course, please, go ahead". I would have to say that
in our work with attorneys, particularly under the enduring powers
of attorney which we currently have you know, as we do, that ten
to fifteen per cent of those are subject to fraud. I can tell
you as a clinician it is extraordinary difficult to get that sorted
out when a decision-maker is not acting in the interests of a
person, it is very difficult, you can sometimes manage it if they
turnout to be bankrupt, beyond that it is very, very difficult.
I think therefore with these decision making mechanisms we need
very good safeguards and we need the ability to negotiate. As
has been said repeatedly this afternoon, I know, advance directives
which are absolutely binding would be disastrous for patients;
we need to be able to negotiate around them.
Chairman: We have a problem of time because
we should finish at 6 o'clock or soon after. What I would suggest
is that Questions 4 to 7 deal with decision making and I think
you could answer those in writing, because I am anxious to have
your views on Questions 8 to 12 which are about advance decisions
to refuse treatment which I know you wish to talk to us about.
Q415 Baroness McIntosh of Hudnall:
There are two questions relating to advance decisions which I
would like to ask. Firstly, whether advance refusals if they are
built into statute, in your view, risk the welfare of patients,
and I think you have already given us some indication of your
views about that. If so, can you suggest how the draft Bill might
be amended to avoid this? Can you also tell us whether you believe
advance directives should be given in writing?
Lord Habgood: I see the Bill talks
about advance decisions, whereas most of the members of the Committee
have talked about advance directions which indeed was the phrase
used by the original House of Lords Committee. I think it is a
better phrase because "decisions" seems to imply, "This
is the last stage of the process. You make your decision and that
is it." A directive is a piece of advice given in circumstances
which no doubt are quite different from those when it actually
comes into effect, and that forms general advice as part of that
material which the clinical team uses to make its decisions about
the suitability of treatment. That seems to be the proper function
of a directive. If it was made legally binding, it would take
away from the clinical team the power of final decision and almost
certainly result in patient harm. It seems to me important also
that the advance directive should be in writing. It need not necessarily
be in a very strict legal form, it is simply an expression of
Q416 Baroness McIntosh of Hudnall:
Since the language of the Bill currently does refer to advance
decisions, can I take it then that you would recommend the language
of the Bill be changed to refer to "directive", which
would in your view have the effect of removing the absolute quality
of that statement made in advance?
Lord Habgood: I would prefer directive
because a directive is simply an instruction, it is not a final
Dr Howard: I would agree with
that. I think they should be advisory rather than mandatory and
I do not think we should freeze somebody's views in time. I have
given the example of the suicide note which would be a very common
problem. In reaching a decision, very often with regard to difficult
decisions, it is a process over time rather than an event. Yet
hered we are almost treating a decision by a patient as something
which is absolutely fixed. It is only fixed if the patient dies,
they have the treatment or they become incapacitated. Very often
patients will decide but will wish to discuss decisions and may
even change their views many times over. In ordinary clinical
practice, if for example you are going into hospital for a hip
replacement, the surgeon is going to be very keen to make sure
your consent is up-to-date. There is an argument to discuss the
operation with the patient in out-patients. But that may be months
beforehand, so always get contemporaneous consent.
Q417 Baroness McIntosh of Hudnall:
But in people who lack capacity, by definition, that is not going
to be possible.
Dr Howard: No, but the decision
could be made months or even years in advance. I had a patient
who, curiously enough, I had known before, who had made an advance
decision unbeknown to me. it was actually stuck in his notes to
the effect that if he became incapacitated and confused and was
suffering from a terminal illness he would not want to be treated.
I treated him, not knowing he had made that. His wife said I should
not have treated him. It was clear he had quite advanced lung
cancer but when I had treated him I asked him, "Did I do
the right thing?" He said yes. What was curious in that case
was when I came to talk to him about his lung cancer, it was quite
clear both from what he said and from what his wife said, he had
not really faced up to the possibility of his developing a malignant
disease at all. In other words, he was just like any other patient.
That decision was madeand his wife made an advance decision
as well not to be treated under similar circumstancesI
think as a result of a television programme when both of them
were fit and well. They both decided hypotheticallyin practice
it was hypotheticalthis is what they would want. But when
it actually came to facing up to the reality of having lung cancer,
he and his wife were just as anybody else. They had not really
thought about the actual implications. They had not understood
what it would mean to have a terminal illness.
Dr Craig: Can I give two examples
Q418 Mr Burstow: Can I ask my question
and then it might be usefully illustrated by the examples about
to be given. It is really to try and understand the nature of
the concern and whether or not in fact on reading of the draft
Bill the concern is being answered. In Clause 24(4) it lists (a)
through (c) a series of circumstances in which the advance decision
is not applicable. My reading of that, and I am not a lawyer,
would suggest in almost all circumstances unless the person has
had the ability to act as a time machine and go to the future
and take detailed notes of every aspect of the circumstances surrounding
their loss of capacity and the condition they are in, that an
advance statement is not likely to be valid or, if not, entirely
valid, and therefore is a material factor in the decision making
process which would not be binding in that situation. I wonder
if the witnesses we have here have looked at this and why, having
considered it, you still come with the views you have been putting
to us so far about this particular drafting of the Bill?
Dr Howard: Because they can be
expressed in very broad terms and they may appear to be rather
specific. For example, if I can give you another case, I think
it was an American one. A gentleman stated that in the event of
his becoming incapacitated and suffering a cardiac arrest, he
would not want CPR (cardiopulmonary resuscitation). He had an
inguinal hernia repair under general anaesthetic, he suffered
a cardiac arrest. Question: should he be resuscitated?
Q419 Mr Burstow: Then (4)(c) under
Clause 24 says, "An advance decision is not applicable to
the treatment in question if circumstances exist which were not
anticipated by P at the time of the advance decision and which
would have affected his decision had he anticipated them."
Surely that scenario is directly addressed by that drafting?
Dr Howard: No, because it was
a very broad one. He was incapacitated by virtue of being under
anaesthetic and he had suffered a cardiac arrest. We, of course,
in this country would resuscitate him immediately. But there is
always a risk that he may suffer anoxic brain damage and therefore
he was not resuscitated.