Examination of Witnesses (Questions 379-399)|
9 OCTOBER 2003
Q379 Chairman: I think you heard
all the housekeeping notices that I gave at the beginning. Could
you introduce yourselves, please?
Dr Gardner: I am Gregory Gardner.
I am the vice-chairman of the Medical Ethics Alliance which is
a coalition of doctors representing different faith groups and
Hippocratic tradition doctors. I have with me Dr Gillian Craig,
who is a consultant geriatrician and an expert on issues regarding
hydration of the elderly and Dr Quereschi, a consultant psychiatrist
who is also an expert on suicide and the care of patients who
have depression and suicidal inclinations. I am a GP and so I
would be very happy to take questions on some of the general aspects
of the matter.
Archbishop Smith: My name is Peter
Smith. I am the Roman Catholic Archbishop of Cardiff and chairman
of the Bishops' Conference Department for Christian citizenship
and responsibility. I have brought with me Dr Helen Watt who is
director of the Linacre Centre for Healthcare Ethics.
Lord Habgood: I am John Habgood.
I am a retired Archbishop of York. I have a certain interest in
this as I was a member of the House of Lords Select Committee
on medical ethics which has I think set your agenda. I have brought
with me Claire Foster who is the secretary who deals with these
things for the Church of England.
Dr Howard: I am Dr Philip Howard.
I am here on behalf of the Guild of Catholic Doctors. With me
is Dr Adrian Treloar, also of the Guild, and Mr James Bogle, who
is a representative of the Catholic Union. I am a consultant physician
with a particular interest in patients with swallowing disorders
and feeding problems.
Q380 Chairman: Best interest is a
very important subject. Would the inclusion of a legal definition
of best interests help clarify the legislative intent of the Draft
Bill or would such a definition be unduly static and inflexible
for decision-makers? How should the individual's clinical best
interests be balanced against their wider interests?
Lord Habgood: It is clear from
what was said in the last session that we are in an area where
nothing is certain. Therefore, it seems to me to be very stupid
to define something as vague as best interests. One can have certain
guidelines. For example, one can say the things which are necessary
to do in order to keep a patient comfortable and produce what
improvement might be possible and so on and those are the long
term best interests.
Q381 Chairman: This is central to
Lord Habgood: It is indeed. It
is a Bill that is having to deal with imponderables.
Archbishop Smith: Could I just
add to that, I think one of the elements we would like to seeand
I agree with Lord Habgoodit is going to be very difficult
to get a legal definition that does not hamstring everybody. What
should be included in the understanding of best interests is the
health interest of the person who is incapacitated, because that
is a crucial issue, we heard very much in the previous evidence
from Baroness Finlay. That needs to go in there somewhere and
the essential element of what are the best interests of the person
Q382 Chairman: Under common law a
doctor can meet the problem by showing that he or she is acting
in the patients' best interests. Does this Bill not just add to
that, it does not replace it, does it?
Archbishop Smith: The problem
is that if you have an advanced decision it seems to me that a
lay person, an advocate, or whatever, can override a doctor's
proper professional, clinical decision. That is a crucial difficulty
we would have with the Bill as it is drafted.
Q383 Chairman: I understand that.
Dr Howard: Speaking as a clinician
the definition of best interests must include the clinical needs
of the patient. In making a medical decision we have to decide
what are the circumstances, what is the diagnosis and what is
the range of options available to the patient. In other words
what is their clinical need? The second stage of the process is
deciding what ought to be done for the patient. That is a matter
of patient choice. We must not confuse what the patient needs
in a clinical sense with what the patient chooses. We all know
that sometimes patients do choose not to take proper medical advice.
It is perfectly possible for a patient who is of sound mind not
to act in his own best clinical interests. If that is true of
the competent patient how much more true must it be of an attorney.
They too could act contrary to the clinical best interests of
Q384 Chairman: Would the professional
be protected by this Bill if in fact that patient decided not
to take the medication even though they knew it was in their best
Dr Howard: The wishes of the patient
or the wishes of the attorney, as I understand it, would trump
that. If the patient is competent, yes. I think the issue is if
the patient is not competent.
Dr Gardner: I would agree that
the concept of best interests is open to misinterpretation and
mischief. I would be very concerned that any kind of definition
of best interests that feed away from clinical best interests
could easily be misused. I think the legal definition by Lord
Brandon about clinical best interests is a good working definition
of clinical best interests, "treatment is in the best interests
of the patient only if it is carried out in order to save their
life or to insure improvement or prevent deterioration in their
physical or mental health". We have had cases where it has
been deemed in the best interests of patients to be starved or
dehydrated to death. This can never be in the best interests of
a patient. Leaving this clause of best interests in the Bill in
a vague, ill-defined way is going to be open to abuse and misused
and should be thrown out.
Q385 Chairman: We have had evidence
from the Making Decisions Alliance who represent MIND and the
Alzheimer's Society and others and they welcomed the Bill and
the fact that best interests is included, does that surprise you?
Lord Habgood: May I come at that
again, it seems to me when you are faced with the difficulty of
making a definition quite often you can manage to define the process.
It seems to me that in these difficult cases it is very hard to
expect one person, a doctor, to make a decision. The concept of
team-working involving the people who have care at various levels
of the person in question offers some safeguard against an individual's
notion of what best interests might be.
Q386 Chairman: Are you more concerned
about the process than the principle?
Lord Habgood: The process would
then need to have a clinical team making a decision in these difficult
cases about what should happen rather than a decision made by
an individual on the basis of a clear definition.
Q387 Lord Rix: Would it be possible
in the current draft Bill to ensure that if a clinical decision
was taken by a medical team it could override advance decisions?
If that is not the case, how would you see it being made possible?
In other words, say I have written that I only want to be kept
comfortable and free from pain but I do not want to be kept alive
artificially, could you override that?
Dr Howard: I think the Bill would
mean that you could not override it. One of the problems I think
of having legally binding advance directives is that they are
legal instruments. Providing at the time that it was made the
patient was of sound mind, they were not under undue duresswe
have already heard what the difficulty in establishing that can
beand they knew even in "broad terms not scientific
language", to quote the Bill, what they were about then their
wishes would be frozen in that document and the doctors would
have to abide by it. One of the problems that I would have as
an acute admitting physician is the issue of whether a suicide
note for example would be a valid advance directive. I have looked
at the clauses of the Bill and I have decided that yes it would
be according to the Bill. We all know that many, many hundreds
of young woman in particular, do take drug overdoses. It is a
very common medical emergency. Baroness Finlay mentioned the question
of Paracetamol overdose. Two years ago I had exactly the same
problem, and my patient also went on for a transplant. What is
the doctor to do if the patient is not incapacitated but merely
distressed because of life circumstances? They may have discussed
it with friends and relatives, may have written down their request
in the form of a suicide note and gone on to take the overdose.
We know that the majority of such patients, 19 out of 20, live
but regret having taken the overdose. Any clinician will tell
you, any psychiatrist will tell you that this business of taking
overdoses is part of the very natural history of how distressed
and depressed individuals behave. They want out. They want to
get out of the situation into a different environment and there
are all sorts of feelings of guilt and concern about it. I know
from my clinical experience that the next day many of these patients
are glad to be alive. It would be a tragedy if suicide notes were
deemed valid advance directives. Why do we treat them? For the
reasons I have stated. We know that their views are not fixed.
Indeed this is part and parcel of the way that distressed individuals
behave. They want help, they want a different environment and
they want to be surrounded by people who can help them. We know
that but at the time that they take the overdose on the Friday
or Saturday night their intention may very well have been to kill
themselves and they may have thought about that for two or three
weeks or even months. I think there are dangers in having advance
directives which will freeze in time individuals' so-called wishes
when we know in practice that they change over time. Baroness
Finlay has told us in eloquent detail how when you are ill and
you actually suffer the effects of disease you adapt to your circumstances
. We are all quite clear as clinicians how much individuals respond
to their circumstances. The resilience of our patients is really
quite extraordinary when they are actually faced with difficult
situations. I think there are very great dangers in fossilising
patients' wishes in legally binding advance directives.
Q388 Mr Burstow: Can I go back to
the issue of best interests, that is an issue that we need to
explore in a lot more detail and put to you something that has
been put to us in submissions from the British Psychological Society
about best interests and needing to take into account the importance
of the psycho-social aspect of a person's life. Do you agree with
that contention and if you do are you putting forward an argument
which is there is almost a hierarchy of best interests one works
through and if you are putting forward a hierarchy where do psycho
social factors come in?
Dr Howard: Again I think there
is a danger in answering that kind of question in any fixed way
because we deal with a whole panoply of situations in clinical
medicine. What we can do and what we must do as clinicians is
to give our professional judgments as to what the clinical needs
of the patient are. In deciding whether or not a patient is going
to be able to withstand a particular form of treatment we must
take other considerations into account such as their psychological
profile. Any good physician is also going to take into account
the wishes and the feelings of the relatives and the carers. There
are on the one hand clinical issues that have to be decided. We
have the competence to make those judgments. Often of course there
is not a unitary solution to a particular medical situation. There
is often a range of perfectly proper and appropriate treatments
that can be offered to the patient. Any good clinician is going
to present those to the carers and the family and certainly take
into account the wishes of the carers, the family and even an
attorney. I think that the attorney should certainly be consulted.
However I think he should take the role of a statutory consultee,
a patient advocate, if you like, but not make the decision on
behalf of the patient.
Q389 Mr Burstow: An uncharitable
interpretation of some of the material we have before us that
has been submitted by Dr Howard would be that ultimately the proposition
that you are putting to us is that we should trust the clinician.
Is that a fair summary of the position you are putting forward?
Dr Howard: I think one has to
trust the physician because the physician is going to deal with
the patient, but there must be checks and balances. We have professional
standards which are recognisable. We have limits beyond which
our treatment can be regarded as ineffective or even negligent.
What I am saying is that in medical decision-making it is not
just a question of the clinical situation it also involves other
issues of a non-clinical nature which a good clinician will also
take into account. As a clinician one has to define what the clinical
needs are first and foremost. There must also be a standard of
care below which he should not fall. He must always provide basic
care to the patient.
Archbishop Smith: Could I go back
to this best interests matter, I think that my difficulty is that
the Bill seems to describe best interests in purely subjective
terms and it seems to equate best interests with autonomy. I do
not think that is a proper way of doing it. We can all act freely
but not always in our own best interests. Someone can go and drink
gallons of scotch or whatever their favourite is and say "I
am exercising my autonomy" but I do not think any reasonable
person, certainly not a doctor, would say that you are acting
in your best interests. I think while it is difficult to define
legally what you mean by best interests there must be some element
in that which brings into the equation the whole question of the
person's interest in good health. We know older people very often
refuse treatment initially because they are upset, and that came
out from Baroness Finlay and again from Dr Howard. There is a
classic case in the Old Testament of Elijah, who was being pursued
by Jezebel and we got totally fed up, he was weary and went out
and sat under a tree and said to the Lord, "take me, that
is it, I am finished". He was expressing his wishes and feelings
very clearly but the good Lord sent him angels and two good meals
and off he trundled into the wilderness and restored himself,
so to speak. I think it is a very crucial element but when you
try to look at what do we mean by best interests and not to equate
it simply to the fact that I can choose whatever I want.
Lord Habgood: One factor has been
left out so far is whether the incapacity is permanent or temporary.
It does seem to me that unless there is a clear distinction, insofar
as one can make a clear distinction here, we forget that we are
dealing with two quite different moral situations. Where you have
a case of permanent incapacity then somebody has got to make the
decision and presumably this has to be the clinician or the clinical
team. Where you are dealing with what is believed to be temporary
incapacity then it seems to me that the question of best interests
resolves itself into the question of how can we restore sufficient
capacity so that the person can make decisions about their own
life? It seems to me very odd that Clause 1(2) of the draft Bill
says, "it does not matter whether the impairment or disturbance
is permanent or temporary". To have that rubric right at
the beginning of the Bill presumably categorising all of the rest
of it seems to me to spell confusion from the very start. At the
very least I would like to see that clause taken out and then
specification in other parts of the Bill as to whether the difference
between permanent and temporary incapacity makes a difference.
Q390 Chairman: The Bill is based
on a functional approach of the capacity at the time the decision
has to be taken, it does not matter whether the impairment is
temporary because it is at that point in time.
Lord Habgood: It does, if you
take Clause 23 (1)(b) which actually uses the phrase "at
that time he lacks capacity". Supposing somebody who is temporary
incapacitated has left an advance directive saying that they do
not want treatment, and supposing that person might well recover
and be able to make decisions for themselves, according to the
Bill the advance directive could be brought into operation during
what might turn out to be a temporary phase.
Q391 Baroness McIntosh of Hudnall:
May I just ask Lord Habgood whether he might consider it could
be differently interpreted, that somebody who temporarily lacks
capacity as a result of illness or injury and may recover may
be in need of treatment and it may indeed be proper to give that
person treatment in order to restore capacity. On the whole it
is unlikely that anybody is going to use an advance directive
to direct people not to recover them from temporary incapacity.
I understand the philosophical point that you are making but I
wonder whether in terms of the real implications of the Bill and
how it would be implemented such a situation would ever be likely
Lord Habgood: It could arise if
we had Clause 24(5) in operation, where somebody can specify that
they would refuse a certain type of treatment that might be in
their case lifesaving.
Dr Craig: I would like to support
what Archbishop Habgood is saying about the dangers of people
who have fluctuating capacity who might have written an advanced
directive. There was a very shocking article in the British
Medical Journal last year entitled "When Doctors Might
Kill Their Patients". One of the contributorswho
was a member the Medical Ethics Committee, and I would like to
say I have forgotten his nameshowed an example of an elderly
man who was beginning to lose his hearing and beginning to lose
his vision and he came into hospital confused. The implication
was that here is a situation where if you do not think that it
is worth living under those circumstances the doctor might take
it into his head not to treat that elderly man, with the result
that he dies. I think that scenario could be repeated many times
over in our hospitals who are under pressure, with bed blockers
and some doctors who are not sympathetic to elderly, frail and
disabled people. We live in a society that is very intolerant
of disability, very intolerant of disability, and we must protect
Chairman: We should move on to general
Q392 Baroness Fookes: The general
authority is pretty wide as it stands in relation to medical interventions,
do you think the general authority should be restricted to the
particular categories of medical intervention?
Dr Gardner: I think it should
be restricted to professionals acting within their own field of
expertise. I do not think that it is appropriate for non-clinicians
to be making effectively clinical decisions, it is not appropriate
for proxy decision-makers to be making decisions about what is
in the best medical interests and to be able to override medical
decisions in that way. That is very, very dangerous.
Q393 Baroness Fookes: Is that the
view of all of you?
Mr Bogle: Can I say I am a barrister
practising in this area of medical law specialising in subjects
relating to mental capacity. This was an issue that arose when
the matter was debated by the Scottish Parliament in their equivalent
Bill, Adults with Mental Incapacity (Scotland) Act. In Scotland
the law is slightly different because there was some confusion
or doubt about what general authority there was. In my view here
in England it is much less unclear, to put it in its positive
form, it is clear. I am not quite sure if it is necessary to redefine
the general authority. I note in the evidence given before the
Committee by the Scottish Law Society they were concerned about
the wideness of this particular section. In Section 6(1) it says,
"it is lawful for any person to do an act when providing
care for another person", it is not restricted to medical
practitioners, it seems intended to include those who are running
nursing homes, and so on. More particularly it is a pathway, I
would suggest, as the widening out of best interests under section
four is a pathway to extend best interests beyond clinical best
interests to non-clinical quality of life criteria so that the
framework of advance decisions and lasting attorneys can be made
to work. In our submission lasting attorneys and advance decision,
which we will come on to shortly, go too far in that they require
this broad general authority and they require non-clinical criteria
to be superadded to the existing clinical criteria.
Q394 Chairman: Is this to protect
the situation? At the moment I am serving on a protection order
as a best friend, I help somebody with dementia. I have no legal
protection at all and I am taking decisions on her care. The Bill
is intended to give me legal protection by statute because at
the moment I have to rely on the common law.
Mr Bogle: Indeed but it goes too
far in so doing. In the same way we would say advance decisions
and more particularly lasting attorneys and deputiesbear
in mind that deputies will be appointed by a court not by the
patient and are likely, as in the case of the Scottish Bill, to
be a chief social worker and not a relative or a friend as in
your situation. What, in our submission, would be better and would
answer not only the queries that have been raised by the change
in the law but would probably meet the agreement of most of the
people who have been consulted is to have a framework of statutory
consultees and/or patient advocatesa term which is now
used quite oftenrather than a very precisely defined term
of attorney, and we will come to that in due course, because an
attorney stands in the shoes of a person from whom they have that
power of attorney. That is I would submit and suggest, not quite
what is desired in these circumstances. What is desired is somebody
who will be consulted and if they are not consulted there should
be sanctions. To go beyond that you then have to have this very
wide general authority.
Q395 Chairman: How would I be protected
in the future under this Bill which I am not at the moment?
Mr Bogle: The problem is not the
protection of yourself because you may or may not be protected
under this Bill.
Q396 Chairman: I am, under 6(1).
Mr Bogle: You are taking a sledgehammer
to crack a nut. You can be provided with protection in the circumstances
that you are without having to broaden out the general authority
or the best interests criteria to the extent that has been done
in the current draft of the Bill. The reason that has been done
is because if you are going to have an attorney making a decision
standing in the shoes of a patient (and I have to query to what
extent you can alienate a patient's autonomy to a third party,
but I will come on to that) then in order to achieve that you
have to widen out the general authority. If you restrict the scope
of these proxies being consultees or patient advocates who must
be consulted (on pain of sanctions against the health care workers
failing to do so) but do not actually make the decisions (and
bear in mind they could make clinically negligible decisions for
which they would not then be responsible) then you would not have
to widen out the general authority so far. In the circumstance
that you adumbrate in my submission you would still be protected
but you would not have taken a sledgehammer to crack the nut.
Q397 Baroness Fookes: I am far from
clear on this, there are a whole range of medical interventions
from the very minor to the very major are you suggesting that
somebody who acts under general authority should not be permitted
to allow a tooth to be taken out which is hurting the person who
does not have capacity, or some other very minor intervention
as opposed to something of very major significant like a heart
transplant. I am not clear where you think the line should be
Mr Bogle: In my submission the
line is drawn adequately by the current law save that there must
be or needs to be certain improvements to address the kind of
problems that Lord Chairman has adumbrated and also other problems,
for example those adumbrated by someone who has given evidence
to this Committee who had the care of a mentally ill patient.
I think particularly parents who are not consulted adequately
who are overridden by carers in a way that carers do not necessarily
intend but because the parent have been insufficiently empowered
and feel they have been left out. That is a very area different
scenario to the one that I have pointed to. The feeling is that
deputies under this Billand the power of the appointment
deputies will exercised by the courtwill be parents with
mentally disabled or mentally handicapped children or adults under
their care. Whereas the scope of Bill, particularly if we look
at the Scottish experience, would appear to indicate that they
are more likely to appoint social workers in those sort of circumstances,
which may or may not be common, rather than parents or relatives.
I would suggest this may be rather common in some circumstances.
That is a very different scenario from one that those parents
envisage. Again you are using a sledgehammer to crack a nut. You
have under the existing law in the scenario you adumbrated, sufficient
power, empowerment and protection so that the patients that you
are concerned about will receive the treatment that they require
because the doctor is required, whilst they are incapacitated
under the existing law to treat that patient in their clinical
best interest until, if it ever happens, they return to capacity.
When they return to capacity they then have the general common
law right that every patient has to refuse treatment for a good
reason or for any reason. When they are incapacitated as the current
law stands they must be treated in their best interests. In the
scenario you adumbrated there is sufficient protection under existing
laws. The position that has not been provided for is the one that
the Lord Chairman points to and some organisations point to, that
is where they have a mentally disabled or a mentally ill person
in their care and they are not medically qualifiedthey
are a relative or a parentand they would like to feel they
have more participation in the decision-making process. In my
submission that could be done adequately with a system of statutory
consultees and patient advocates. To use the system of attorneys
is to go too far, it is going to give them the power to require
treatments to be withdrawn by doctors. You then put doctors in
an invidious position They go into their wards and there, perhaps,
sitting at the end of the bed is a person with power of attorney
who can order them to withdraw treatment even though it could
be clinically negligent to do. That is why I say this is taking
sledgehammer to crack a nut.
Chairman: We have your submission but
we only received it today, we have not had a chance to read it.
Q398 Mrs Humble: All of your answers
have been concentrating on a medical model and references to the
individual concerned in this Bill as being patients. The point
surely is that there will be many circumstances where they are
not patients and we are not talking about the medical model. The
general authority applies to people who are making decisions on
behalf of those who are deemed to lack capacity in settings other
than a medical setting. For example I am not even talk about nursing
homes, there are many people with very profound learning disabilities
and indeed physical disabilities who are in their own homes, in
the community, often in a supportive setting with carers going
into look after them. The points that have been made to us about
the general authority is that it is necessary to broaden it out
to include all of those people because they are the people who
are making day-to-day decisions, not to do with operations or
tooth extraction but to do with basis decisions about the personal
circumstances of that individual, about their social care needs,
and also financial needs. Surely the general authority should
be there to cover those very, very large numbers of individuals
who are providing that support and making decisions for people
who lack capacity to do it themselves?
Mr Bogle: At the risk of hogging
the evidence, under the Enduring Powers of Attorney Act 1985 you
already have the possibility for power to be given to somebody
to act on behalf of the incapacitated person to make financial
Q399 Mrs Humble: Not social care
Mr Bogle: That is right. That
is where the lacuna is. That is where the gap needs to be filled
is. But this goes very much further than that and moves into the
whole area of medical attorneys and medical proxy decision-makers
rather than the situation you outline where I agree there is a
lacuna and where very usefully there could be some change in the
law to give a little bit more authority to those who currently
act on behalf of a mentally incapacitated person other than making
medical decisions. This goes very much further than that. My concern
is, and I suspect some of the medical practitioners here are concerned
about this too, is how that will impact on clinical practice and
the delivery of health care services to patients and individuals
in this country. It is taking a sledgehammer to crack a nut, as
I have said. There needs to be a filling in of the gap, if you
like, the lacuna without having to go to this extent. The whole
ambit should be drawn in so that we do not end up with the unintended
consequence that doctors are being obliged on pain of severe sanction
to withdraw treatments that they know for clinical reasons should
be given to their patients.