127.Memorandum from the Scottish Council
on Human Bioethics Limited (MIB 1029)
The Scottish Council on Human Bioethics is an
independent, non-partisan group of doctors, lawyers, psychologists,
ethicists and other professionals from disciplines associated
with medical ethics. The principles to which we subscribe are
set out in the United Nations Universal Declaration of Human Rights
which was adopted and proclaimed by the UN General Assembly by
resolution 217A (III) on 10 December 1948.
Our aims include the assessment and analysis
of policy proposals from an ethical perspective.
We were involved in commenting on the Adults
with Incapacity (Scotland) Act 2000 during its passage through
the Scottish Parliament. We gave evidence to the Parliament's
Justice and Health Committees and met with Ministers and Civil
Servants to discuss aspects of the Bill.
One point we would make at the outset is that
insufficient time has been allowed for consultation on this Bill.
The consultation has coincided with the holiday period and even
the customary minimum time for responses (in our experience three
months) has not been allowed.
Given the shortage of time, we have restricted
ourselves to commenting only on the legal and medical aspects
of the Bill as they relate to decisions about medical treatment
made on behalf of those with incapacity. Had we had more time,
we would also have liked to comment on the effect of the Scottish
Act on medical practice north of the border.
1.1 One matter which is immediately striking
about this Bill is the extent to which it changes the balance
of power in the healthcare setting. Although we understand from
the accompanying Ministerial Foreward, that the stated aim is
to empower those with incapacity, in practical terms, this Bill
would have the opposite effect.
1.2 Under the Bill the legal protection
currently given to vulnerable incapable people will be substantially
particular, the Bill would allow passive involuntary euthanasia
to be practised on incapable people whose lives are deemed by
doctors or proxy decision-makers not to benefit them. It is imperative
to preserve and, indeed enhance existing legal protection for
incapable people because they are so vulnerable.
1.3 We consider that the Bill "dumbs down"
the protection currently accorded to this vulnerable group in
the following ways. It removes basic protection by redefining
"best interests" to make it a subjective test in clause
4 and by creating proxy decision makers who will have power to
refuse medical treatment on non-medical grounds. The principles
of the Bill upon which patient protection depends (clause 4) are
not capable of being objectively established by reliable evidence
in all cases.
2. Best interests
2.1 In the commentary issued with the Bill,
it is implied that the common law "best interests" principle
is enshrined in the Bill. This appears somewhat disingenuous.
At common law, a doctor can lawfully provide treatment to an adult
incapable of giving consent provided the treatment is in the patient's
best interests. In this context, at common law, "best interests"
means treatment given to save the patient's life, or to improve
or prevent deterioration of the patient's physical or mental health.
2.2 This Bill does not enshrine that principle,
it enshrines something quite different. The "new best interests
test" in Section 4 is a guiding principle which doctors and
proxies must use in deciding whether to give or authorise medical
treatment (including tube feeding and fluids) under the Bill.
Doctors must use it in deciding whether to give or withhold treatment
under clause 6. Proxies must use it in deciding whether to refuse
treatment under clause 8(1)(a) or 17(1)(d) (they have no power
to compel treatment, only to refuse it). The Court of Protection
must use it in resolving any disputes about whether "treatment"
should be provided.
2.3 At common law, it is relatively simple to
establish whether a given treatment is appropriate in terms of
saving life, preventing deterioration etc. This can be proved
reasonably objectively on the basis of evidence of physical examination
of the patient and expert testimony as to the treatment proposed.
However, the new "best interests"
test proposed introduces factors which are much more subjective
such as alleged oral expressions of past wishes and feelings;
views of carers and others as to what factors the person would
consider if he were capable etc. As explained below, research
in America appears to show that the possibility of a proxy actually
choosing as the patient would have done is little better than
chance. The effect of introducing a vague and subjective test
is to remove such protection as currently exists. This leaves
the law open to abuse by the unscrupulous.
3. Proxy decision makerspower without
3.1 This Bill fails to safeguard people
with incapacity from passive euthanasia and perverse decisions
and abuses of power by proxy decision makers.
3.2 The proxy decision makers created by
the Bill can take decisions in relation to healthcare and also
financial and property matters on behalf of adults with incapacity.
It is likely that some proxy decision makers who have powers in
both areas will face conflicts of interest. For example, the proxy
may be a prospective beneficiary in the adult's estate and may
be called upon to decide whether or not the adult should receive
life sustaining medical treatment. It is possible that such a
treatment decision may be taken in circumstances where, if life
sustaining treatment is refused or withdrawn, there will be more
money available for beneficiaries because nursing or care home
fees will be saved.
3.3 In its memorandum to the Justice and
Home Affairs Committee of the Scottish Parliament during the passage
of the Adults with Incapacity (Scotland) Act 2000 dated 11 November
1999 the Scottish Neurological Consultants' Forum said "a
. . . difficulty arises when close relatives appear not to be
acting in the best interests of the patient; this is not common
but neither is it rare". [Note that they are referring here
to clinical best interests and not to the new test proposed.]
3.4 It is very important to recognise that
while the majority of proxy decision makers can be presumed to
be acting in good faith in what they believe to be the best interests
of the incapable person, there are those who would not do so.
(Almost all of our medical members questioned about this can relate
such instances from their own experience).
No duty of Care
3.5 Incapable people are currently protected
at least to some extent because doctors have a duty of care in
relation to medical decisions taken on their behalf and can be
prosecuted, sued or disciplined for breaching their duties to
patients (depending on the gravity of the breach). However, proxies
are not subject to the same duties or standards of care and they
cannot therefore be prosecuted or sued for breaching or falling
3.6 This means is that if proxies refuse
say tube-feeding or insulin on behalf of the patient and thus
cause the patient's death, they cannot be held liable. All they
need claim is that the patient once expressed a wish not to have
the treatment in these circumstances (section 4(2)(c)(I)) or that
they thought the treatment was `not in their best interests' under
section 4(1). Alternatively, where the patient had an advance
directive or was even believed to have one, this would be binding.
Even if the patient was alleged to have made a past remark, this
would be taken as evidence of past wishes and feelings about treatment
under clause 4 and treatment would be denied. The evidential problems
are obvious. Since the Bill entitles a proxy to refuse treatment
subject only to the guiding principles, then provided he can bring
himself within these as suggested above, neither the criminal
law nor the civil law can touch him. The doctor could not be prosecuted
either because she would have no authority to treat in the face
of a refusal by a proxy. Although she has the option of appealing
against this refusal to the Court of Protection, she has no obligation
to do so.
3.7 A closer examination of the Bill's guiding
principles and the common law makes it clear that if the Bill
were enacted in its present form it would be almost impossible
to successfully prosecute a proxy or doctor who caused the death
of a person with incapacity by withholding or refusing treatment.
3.8 As Professor McLean said "I am
not sure on what basis you could challenge them because a proxy
decision maker could always say they that they had acted in good
the Scottish Parliament's Justice Committee Meeting on 17 November
Ben Wallace MSP asked Professor McLean
"Are you saying there is no way of putting a safeguard on
the actions of a proxy?" She replied " I cannot think
of any way that would do more than allow us to make the presumption
that the person is acting in good faith." She went on to
describe research in the USA which suggested that the possibility
of a proxy making the same decision as the patient himself would
have made is little better than chance.
3.9 If this research is correct, it suggests
that this Bill removes vital protection from vulnerable people
without conferring any benefit on them in terms of increased autonomy.
In practical terms it is difficult to see any justification or
ethical benefit from the medical aspects of this Bill. Some of
the financial aspects of the Scottish Act were actually necessary
but the medical sections have caused confusion and an increased
burden of bureaucracy on doctors without improving the healthcare
of adults with incapacity to any marked extent.
4. Advance refusals of treatment
4.1 In the green paper which preceded the Scottish
Act, the Scottish Executive made the following statement:
"We have examined carefully a
number of other proposals made by the Scottish Law commission,
by the Alliance for the Promotion of the Incapable Adults Bill,
and by others. Such proposals have included legislation to give
clear legal force to Advance statements ("Living Wills")
and to provide for the withholding or withdrawal of treatment
from patients who may be in . . . PVS. Although such proposals
have the sincere support of particular interest groups, we do
not consider that they command general support. Attempts to legislate
in this area will not adequately cover all situations which might
arise, and could produce unintended and undesirable results in
individual cases." 
We share the Executive's concern in relation
to Advance Directives or refusals of treatment for the following
They are open to abuse, particularly
where, as here, it is proposed that they may be oral. Patients
may have been coerced into making them or may have simply made
them because they feared being a burden on relatives. They may
have been depressed or have been experiencing feelings of low
It may be difficult to establish
retrospectively whether the person had capacity at the time of
making the advance refusal. It is unclear what level of capacity
is required in order to revoke a refusal, once made.
If a person makes such a decision
in advance it is unlikely that they will have access to medical
advice and to all the relevant clinical considerations needed
to make a good decision. Such decisions may be made in ignorance
of important factors. They may increasingly be made on the basis
of unreliable medical information downloaded from dubious web
sites. This may also become a problem in relation to proxies who
may be tempted to act as "amateur clinicians".
It may be very difficult to prove
what circumstances were or were not anticipated by the patient
at the time of the advance decision for the purposes of challenging
validity under clause 24(4)(c).
Advance refusals of treatment will
mean that some patients will receive sub-optimal care. This will
inevitably mean that patients who might otherwise have been rehabilitated
will not receive treatment they need and may then require hospital
care on a long term basis with consequent implications for allocation
130 As Professor McLean pointed out in her evidence
to the Justice and Home Affairs Committee during the passage of
the Scottish Act, it will amount to no more than an assumption
that a proxy decision maker will act in good faith. Official Report
-Scottish Parliament JHAC 17 November 1999. Back
Re F 1990 2 AC 1. Back
Col 395 17 November. Back
Justice Cttee transcript 17.11.99 at para 400. Back
Making the Right Moves published by the Scottish Executive
1999 http//:www.scotland.gov.uk/rightmoves/docs Back