128.Memorandum from Dr I M Jessiman (MIB
The current legal position of those over 18
who lack capacity to give or withhold consent is undoubtedly unsatisfactory.
In its attempt to overcome this problem, however, the present
bill introduces several dangerous concepts particularly with respect
to matters of medical care, most especially at the end of life.
The proposals for advance directives, notwithstanding
the intended clarity of section 24, are far too vague and ill-defined.
On the other hand, at least as far as medical matters are concerned,
the proposals for lasting power of attorney give the attorney
dangerously wide and unrestricted powers over life and death.
3. Presumption against lack of capacity
3(1) It is absolutely right that a persons'
capacity should be assumed unless it is established otherwise,
but (at 3(2)) I am concerned that a lack of capacity is to be
judged only on the balance of probabilities, albeit after "all
practicable steps" have been taken [to help him make a decision].
"All practicable steps" (at 2(3)) is capable of very
loose interpretation and could serve as a cloak for inadequate
enquiry. The "balance of probabilities' test undermines the
proper establishment of lack of capacity: Particularly with regard
to decisions on matters of life and death, incapacity ought to
be established "beyond reasonable doubt". On the other
hand, for the "re-establishment" of capacity the "balance
of probabilities" test should apply.
4. Best interests
4(1), 4(2) The overriding importance of
"best interests" is rightly highlighted early in the
paper. However, medical best interests receive no mention. The
whole ethos, indeed the whole practice, of medicine depends on
the pursuit of the medical best interests of the patient. If this
is not the case medicine is without motive and there are no criteria
by which to measure its value. The recent booklet "A guide
for healthcare professionals" (p 8), from the series "Making
Decisions: Helping people who have difficulty deciding for themselves"
(Lord Chancellor's Dept, 2003) it is noted that "Healthcare
professionals can and should provide treatment without consent
for people who lack capacity to consent, if it is considered to
be clinically necessary and in the "best interests'
of the patient" . . . "Healthcare professionals have
no authority to make any other sorts of decision, such as personal
or welfare decisions." "In relation to medical treatment,
the High Court has ruled that "best interests are not confined
to best medical interests . . ." The underlying assumption
behind these paragraphs is the fundamental importance of medical
If medical best interests are to be subordinated
to the unguided decisions (opinions) of lay people on medical
matters (other than those of the patient himself, eg an attorney
or deputy) then the whole basis of medical practice is undermined
and in effect meaningless. Doctors' and nurses' skills are devalued
and they are prevented from doing their best for the patient.
4(4) It is accepted that a patient may have
good reason, bad reason, or no reason at all, for refusing a particular
treatment, but a third party, whether an attorney or a deputy,
should not have power or authority to make decisions without any
corresponding responsibilityie without having adequate
and explicable reasons. For this reason 4(4) is unacceptable in
medical matters. Doctors and nurses can be held liable for any
failure to give the best possible [ie proper] medical care. The
wide scope of this section ("the person reasonably believes
what he does . . .") is such that no attorney or deputy could
ever be found liable, however gross a violation of "best
interests" they may perpetrate. It would not appear impossible
for doctors and nurses to be held liable for failing to provide
"proper" care for a patient where the attorney or deputy
had flagrantly refused it (and maybe later denied so doing).
6-7. The general authority Restrictions
on the general authority
I do not consider it right for an attorney or
deputy, still less for a person acting under "general authority"
to be able to refuse "life-sustaining treatment". As
mentioned above (at 4 (4)), I believe that such an exercise of
authority, without responsibility or being answerable to anyone,
undermines the whole basis of medical practice.
10. Scope of lasting powers of attorney:
Subject to the comments on "best interests"
at 4 above, 10(3) and 10(4)(b) are acceptable, but no attorney
or deputy should have authority to refuse basic care or to refuse
consent to life-sustaining treatment.
10(4)(a) It is not clear when, or indeed
how, "P's" capacity is to be assessed in this context.
10(4)(a) seems to indicate that if "P" has capacity
at the relevant moment he can exercise it, but Schedule 3, Part
4, 14 (1)(a),(b),(c) and 14(2) clearly indicates otherwise.
Once the power (in the instrument) has been
registered, the paragraphs (in Schedule 3, Part 4) just cited
would appear to leave the donor "incapable" of accepting
or refusing the carrying out or continuation of any treatment
whatsoever, at least until the matter can be reconsidered by the
court? This approach derives, no doubt, from the legal concept
of "presumption of continuance", according to which,
once it has been proved that someone is incompetent, or lacks
capacity, this state is presumed to continue until the contrary
is formally proved. ("Assessment of Mental Capacity",
Law Society/British Medical Association, 1995, p 13). Whilst such
a presumption may have some legal value it is pernicious in situations
of medical care, particularly in cases of serious illness, when
capacity may fluctuate widely over a very short period of time.
In at least one case in America a patient crying out for food
or a drink was refused it on the grounds that she had not regained
(legal) capacity to countermand her earlier advance instructions.
No legal presumption should be permitted to
interfere with a contemporaneous ability of the patient to change
his mind and to revoke the contents of a living will or the power
of an attorney (at least in matters of health care) with respect
to the immediate questions of treatment. 20(1) seems to envisage
the possibility of sudden change affecting the power of deputies
and the same should apply equally to attorneys.
10(4)("d"?) For the protection
of the patient, and indeed that of the doctors and nurses involved,
a restriction should be added to this section to the effect that
no attorney would have the power to give "a direction that
a person responsible for P's health care allow a different person
to take over that responsibility" (as specified for a deputy,
at 17 (1)(e)). Otherwise, where there is a disagreement over P's
best interests, the possibility arises of repetitive "shopping
around" until a sufficiently compliant doctor is found.
12. Revocation of lasting powers of
12(2). The same difficulty (as for 10 (4)(a))
applies in this section. Whereas 12(2) seems to suggest it would
be comparatively easy to revoke a power previously given, Schedule
3, Part 4, 14(1)(a) and (c) indicates it would be extremely difficult,
whether in whole or in part, and certainly not at all quick. In
medical matters it must be possible to withdraw any power previously
granted at very short notice.
17. Section 16 powers: personal welfare
No court, attorney, or deputy should be permitted
to refuse "basic care" (see, for example, the very minimal
list in Law Commission document "Mental Incapacity"
(Law Com No 231) 1995)). Basic care should include not only bodily
cleanliness, the alleviation of pain and distress and the offering
of direct oral nutrition and hydration, but also the continuation
of ordinary treatment (eg insulin for a diabetic and, in most
cases, the assisted giving of flood and fluid for one who cannot
swallow). See also at 24 (5).
23. Advance decisions to refuse treatment:
There is no specification in the Bill of what,
if any, formalities are required to establish the legal validity
of an advance decision, [written signature, actual date, witnesses'
confirmation of patients' capacity at the time, confirmation that
they have fully understood what it entails, etc] nor of how it
should be formally registered or how long it should be deemed
to remain valid. The requirements for advance directives, givingas
they dopower over life and death, should be no less stringent
than those for the making of a will.
23(1)(a) Whereas the specific refusal of a particular
treatment may be considered acceptable, "blanket" refusals
of all (or multiple) medical treatments [even in various "postulated"
circumstances] are not. This is because such a refusal is inevitably
cast too widely for the patient to have been able to envisage
all the possibilities for future situations or for future possible
treatments (see 24(4)(c)). Such refusals fall far short of any
semblance of properly informed consentas required (and
expected) for the capable: why should the incapable be any less
23(2) The phrase "in broad terms and
non-scientific language" is derived from the requirements
of obtaining proper consent to the acceptance of medical treatment.
However, this is quite inadequate as an expression of sufficient
understanding when it comes to refusals of treatment, particularly
where these may well be life saving and a refusal may lead to
death or serious handicap.
23(3) It is highly desirable that the patient
should be able to withdraw an advance directive at any time and
with the least possible formality. This should allow for the "resumption"
(sic) of capacity on the balance of probabilities (as opposed
to "beyond reasonable doubt" for the establishment of
incapacity)and in the face of any "presumption of
continuance". In other words the retraction of an advance
directive must be made easier than the implementation (execution)
of one. Otherwise the possibility exists of a patient who has
recovered competence being overruled by a blind insistence on
the implementation of such a directive (by the law, by a deputy
or by an attorney (acting under lasting powers of attorney)).
24. Validity and applicability of advance
24(2)(b) I believe it would be wrong for
a donee (attorney) to be able to be given power to override a
properly established advance decision (see section 23)unless,
of course, the advance decision has been withdrawn.
24(2)(c) It is hard to see how an action
could be inconsistent with an advance directive, still less how
evidence of it would be adduced (by whom?) or proven at the time
of implementing the relevant "instruction".
24(4)(a-c) These requirements are very important
in any case of advance decisions. Otherwise wide and vague interpretations,
that could be lethally dangerous, might be possible.
24(5) No advance directive should be allowed
to refuse basic care (see at 10 and 17). If an advance directive
is to be allowed to refuse life-sustaining treatment it must specify
in precise terms which such treatment is being refused and not
seek to encompass "life-sustaining" treatments in general.
25(3) This clause should be reworded to
mean (as I assume it intends) that any claim of "reasonable
doubt" applies to the applicability or otherwise of the terms
of an advance directive in a particular case and not to the speculative
existence, or otherwise, of an unseen advance directive. If the
latter were permissible it could be very easily subject to abuse.
26-29 Excluded decisions
The Bill does not seem to address the issue
of consent to sterilisation, to termination of pregnancy or to
taking part in a research project (most particularly non-therapeutic
research which by definition does not benefit the patient). I
believe the latter should never be permitted, but all these matters
should at least be reserved to a court and not lie within the
powers of deputies or attorneys. It would also be totally inappropriate
for a court, deputy or attorney to be given power to make an "advance
directive" for the patient.