57.Memorandum from Dr Fiona Randall (MIB
Thank you for your e mail of 11 August 2003
asking for some information about the expected impact of this
Bill on my specific area of health care, namely palliative care.
You have asked for clarification of the benefits
of the Bill. However, at the same time Susan Johnson, Head of
the Mental Incapacity Division, has suggested that comments on
the Bill be sent to the Scrutiny Unit at the House of Commons,
and so I have sent a copy of this letter to that office, and have
included in it some comments on the practical difficulties of
implementing the Bill exactly as it stands.
The Association for Palliative Medicine will
also be submitting written evidence on the Bill and could be asked
for oral evidence if necessary, so I have copied this letter to
Dr Mary Neal, current chairman of their working group on ethics,
of which I am a member.
At the outset I would mention that the primary
focus of the Bill appears to be on persons who have long term
learning disability or chronic mental incapacity due to illnesses
such as psychosis or depression or dementia. However, the Bill
will clearly also apply to patients with grave physical illnesses,
which, by reason of vital organ failure and consequent biochemical
disturbances, will cause either confusion or impairment of consciousness.
These states frequently render patients incapacitated in terms
of health care decisions, either temporarily or permanently. In
the context of palliative care this incapacity may be a foreseen
event, but it may also be unexpected and its onset may be sudden.
My comments are based on my experiences as a
consultant in palliative medicine, and also as a teacher on health
care ethics to both undergraduate and postgraduate doctors and
nurses, a role which I undertake partly as a result of undertaking
a philosophy PhD in health care ethics. The comments below relate
to the impact of the Bill on patients, their families, and health
care professionals, particularly but not exclusively in the context
of grave physical illnesses.
I would like to make some general positive points
about the Bill initially, then proceed to more detailed comments
on specific clauses.
In terms of empowerment, health care professionals
already have guidance on decision-specific tests of capacity,
but making the process of assessing capacity more obviously subject
to clear law would be in the interests of patients and health
The General Authority which will protect health
carers provided they act reasonably and in the patients' best
interests will protect patients as well, and the Court of Protection
will hopefully be able to provide a timely response to resolve
difficult issues and protect all parties in the process.
The Bill makes it clear that those making health
care decisions for mentally incapacitated patients must make those
decisions on the basis of the patient's best interests, and the
emphasis on taking account of what can be ascertained of the patient's
wishes will enshrine in law the guidance on consent already issued
by the Department of Health. Unfortunately this guidance is not
always followed, in that attention is not always given to what
can be ascertained of the patient's current wishes, or of what
those wishes might have been in the circumstances. By making it
law to take those wishes into account, I believe that the decision
making process for these patients will be improved, as health
care professionals will be persuaded by the impact of the law
that consideration of what can be known of those wishes is really
important in these difficult circumstances. I am thinking here
particularly of those cases where the professionals' natural instincts
are to carry out life-prolonging measures on incapacitated patients
with a poor prognosis, and they have a tendency not to pay attention
to what the patient might have wanted in the circumstances. The
Bill will tend to correct such partial and rather inadequate assessment
of "best interests". At the same time the Bill allows
life-prolonging treatment to be given pending a more considered
decision, for example by the Court of Protection.
The Bill gives clearer legal force to advance
refusals of treatment (although there are some practical difficulties
arising from its application which I have described below).
Successful implementation of this Bill will
require significant education endeavours for health care professionals
and the public, and some resources will be required to enable
that education to occur.
Since the process of appointing a LPA will be
quite complex, will require following a strict formula, and will
necessarily entail a registration process, I think it is unlikely
that many patients will appoint an LPA, at least in the near future.
Written advance decisions are still relatively uncommon, and they
are rather easier to formulate than the LPA and do not require
There are some items in the clauses of the Bill
which I believe are likely to lead to difficulties in clinical
practice, and in some places a very slight change in wording might
help. I think there are more significant problems with the section
on advance decisions. The following comments are in the order
of the clauses of the Bill.
Clause 2(3) states that "all practicable
steps" must be taken to help a patient decide before he is
treated as unable to make a decision. This is most commendable
and will improve patient care, but it will also have significant
resource implications in terms of the time health care professionals,
in this case fairly senior doctors and nurses, will have to commit
to the assessment of capacity for these patients. There is already
a significant shortage of these experienced health care staff,
so time taken to implement this Bill will be at the expense of
other aspects of patient care and this must be appreciated.
Adequate assessment of capacity to make decisions
which are complex and require the patient to understand, retain
and consider a large amount of (often distressing) information
will necessarily require considerable time as well as experience
It is of course possible that as some patients
will prove able to make the decision and some of them may decline
treatments. If this proves to be the case then some professionals'
time may be saved by not undertaking treatments which consume
considerable financial and human resources but which the patient
does not actually want to undergo.
Clause 4(1) states that any act done for, or
any decision made on behalf of a person who lacks capacity must
be made in the person's best interests. In practice this would
mean that the patient lacking capacity must receive the best treatment
for him/her, and must receive the care which most accords with
his/her best interests. But the reality in the NHS is that treatment
and personal care are effectively rationedthere are now,
and will be in the future, grossly insufficient resources to give
every patient what is in his/her best interests. My worry about
the impact of this clause in practice is that it may force resources
to be unfairly distributed to the mentally incapacitated, since
by law they must have what is best for them. This would be likely
to be achieved at the expense of patients with capacity who can
be told the NHS does not have the human/financial resources to
do what is best for them.
For example, many patients would ideally like
to be cared for and die at home, providing that 24 hour care could
be provided for them there by the continuous presence of a nurse.
Care in the familiar environment of home might be in the best
interests of the many confused or demented patients. However,
such care is expensive in human and financial terms, and if it
had, by law, to be made available to mentally incapacitated patients
because it was in their best interests, then mentally competent
patients would have to forego it to an unreasonable and unjust
The solution to this problem is to include in
clause 4, and subsequently in the Bill where necessary, the stipulation
that the benefits of treatment and care must be distributed justly
between mentally incapacitated and mentally competent patients,
and the former cannot have their best interests pursued without
consideration of the interests of the latter group.
Clause 4(2)(d) as written appears to give equal
importance to consulting any person engaged in caring for the
patient and those persons who are appointed deputies or registered
as having LPA's. Surely greater legal force should be applied
with regard to consulting deputies and LPA's than to consulting
any person interested in the patient's welfare.
Clause 4(4) reads as though clause 4(1) re best
interests will be complied with "if the person reasonably
believes that what he does or decides is in the best interests
of the person concerned". Unfortunately, this implies that
health care professionals need not pursue the essential steps
outlined in 4(2), whereas following these steps regarding ascertainment
of the patient's wishes is really in patients' interests and needs
to be enshrined in law. Clause 4(4) would seem to provide an undesirable
"let out" clause for health care professionals who for
any reason do not want to consider what the patient would have
Clause 7(1)(b) states that General Authority
does not authorise a person to restrict P's liberty of movement
"unless there is a substantial risk of significant harm to
P". But in the context of health care it is the case that
mentally incapacitated patients' movements can cause a substantial
risk of significant harm to other patients, for example by persistent
wandering in in-patient units, or by causing severe noise disturbance
etc. The free movement of the mentally incapacitated patients
sometimes has to be restricted to protect other patientswho
themselves have a right to protection from harm caused by their
fellow patients. Yet General Authority in this Bill seems to prevent
restriction of movement of the mentally incapacitated, which is
likely to be interpreted as forbidding health care professionals
from restricting the movement of such patients where it is a harm
to other patients.
This problem recurs in clause 10(1)(b) and 10(2)(b)
with reference to the powers of LPA's regarding the movement of
the mentally incapacitated person.
The solution is probably to include in General
Authority the authorisation to restrict the movement of P where
this is necessary to avert substantial risk of significant harm
to P or other persons. Clearly, reasonableness as already mentioned
in the clause is essential here.
Clause 7(2) would seem to mean that General
Authority does not allow health care professionals to "do
an act" which conflicts with a decision made by a doner of
LPA or a deputy appointed for P by the Court of Protection. But
if the LPA or deputy wanted a life-prolonging treatment continued
for a incurable and gravely ill patient, whilst the health care
team were clear that in this particular situation the harms and
burdens of the treatment exceeded its benefits, then this clause
would seem to prevent the health care team from acting to discontinue
the treatment they felt was inappropriate. The most obvious example
relates to the highly emotive issue act of switching of a ventilator.
According to the Bill, because withdrawing ventilation requires
professionals to "do an act" for P, then the professionals
could not do this if the LPA or deputy insisted on the patient
being ventilated. I suspect conflict is more likely to occur where
the patient has appointed an LPA than where a deputy is involved.
This clause seems at variance with the principle
that neither patients nor those acting on their behalf (eg LPA's)
can require health care professionals to provide a treatment which
they believe is clinically inappropriate.
Resource issues clearly come into play here
also. If an LPA could insist that a ventilator could not be switched
off, then another patient who could gain benefit from that ventilator
and ITU bed might be denied it, since the new law would support
the LPA's request to continue ventilation by preventing the professionals
from `doing an act' to patient P contrary to the LPA's decision.
The Bill might thus inadvertently force diversion of resources
to incapacitated patients at the expense of those with capacity,
or it might rarely impose unachievable requirements on intensive
Clause 7(3) does not solve the problem illustrated
in the above example.
Clause 10(4)(b) makes it clear that a LPA does
not confer authority to refuse to consent to life-prolonging treatment,
unless the LPA "contains express provision to that effect".
I fear this may be confusing to patients appointing a LPA for
welfare decisions, who will naturally conclude that the LPA has
the power to refuse life-prolonging treatment.
Clause 18(1)(h) allows "the court"
to arrange the settlement of P's property. Does this mean that
the relatives of a patient, who is mentally incapacitated by reason
of a terminal illness such as a brain tumour and who has not previously
made a will, can expect the court to determine what should happen
to the patient's estate? Many patients are mentally incapacitated
for a period just prior to death, and a significant number have
not made a will. Can the court really undertake to determine what
should happen to the property of this potentially large group
Clause 24(2)(b) states that an advance decision
is not valid if subsequent to making it the person confers authority
to consent or refuse treatment on a doner of an LPA. This means
that an LPA's decision always overrides or effectively negates
a prior advance decision because the latter is considered invalid.
Patients would need to have a very clear understanding of this
legal position, as they might (reasonably) think that their own
written advance decisions should have more weight than those of
a LPA subsequently appointed by them.
Clause 24(2)(c) states that "an advance
decision is not valid if P has done anything else clearly inconsistent
with the advance decision" previously made. This is a problem,
as it is difficult to judge what is clearly inconsistent with
a particular decision. The problem is important, as this clause
could be used to make an advance decision invalid. For example,
a patient I now know has a "Living Will" refusing life-prolonging
treatment, and indeed he has refused hormone treatment for his
prostate cancer. But recently he bled from a tumour in his tonsil,
and then agreed to a blood transfusion. This decision seems inconsistent
with his advance refusal of life-prolonging treatment and according
to the Bill would invalidate the advance decision. I think the
patient would be surprised and dismayed to have his clearly thought
out and recorded advance decision so easily invalidated!
In practice, patients who are competent often
agree to life-prolonging treatments, for example antibiotics,
whilst at the same time stipulating an advance decision to refuse
life-prolonging treatment when they are mentally incapacitated.
Unfortunately this Bill would mean that a decision by a competent
patient to accept one life-prolonging treatment effectively invalidates
an advance decision, which the patient intended to be respected
when he/she became incapacitated. I think this problem needs much
Clause 24(4)(b) and (c) make it easy for health
care professionals to declare that an advance decision is not
applicable. Indeed, the more specific the circumstances mentioned
in the advance decision the less likely it is to apply in the
exact circumstances which later arise. Unfortunately it is relatively
easy for professionals (and possibly family members) to declare
that some circumstances exist which the patient did not anticipate,
and so to declare that the advance refusal of treatment is not
My most serious concerns about the clauses on
advance refusals of treatment are that the conditions imposed
for establishing validity and applicability make it rather too
easy for others to declare the advance decision invalid or not
applicable. Thus the patient's wishes can be rather easily overridden,
albeit by well-meaning others. I think this problem needs more
Clause 28 makes it clear that the Bill does
not permit anyone to make decisions regarding donating organs
for transplants on behalf of an incapacitated patient. What will
happen if the law changes to one of "presumed consent"
to organ donation? Will no-one then be able to refuse to donate
the organs on the incapacitated patient's behalfeven an
LPA who knew the patient's wishes?
Clause 30(1)(a) to (e) makes it clear that much
will turn on the details contained in the codes of practice the
Lord Chancellor will prepare. Moreover, clause 30(6) will mean
that it will be the duty of every health care professional, enshrined
in law, to know about and have regard to the codes of practice.
Implementing this will require resources for education of at least
all trained nurses and doctors, and probably some other health
care professionals as well.
I hope these detailed comments are helpful.
Sometimes it is difficult to envisage what exactly will be the
effects of changes in the law for patients, their families, health
care professionals and the public.