117.Memorandum from the General Medical
Council (MIB 949)
The GMC supports the general aims
and key principles.
Some proposals need clarification
and some important issues are not covered. So it's difficult to
assess the overall effectiveness and practicability.
Guidance on the practicalities of
assessing capacity should accompany the Bill.
Clarity is needed on who can make
decisions for people aged 16 and less than 18 years. Can their
decision be overruled by someone with parental responsibility?
Under the general authority to act
reasonably, for healthcare decisions, can a doctor proceed if
a carer without Lasting Power of Attorney (LPA) disagrees with
the proposed course of action?
There should be restrictions on the
type of medical procedures/treatments which could be authorised
under the general authority and the LPA. For example contraceptive
sterilisation. These might be set out in Regulations.
Reservations about the exception
to the rule against the use or threat of force or restrictions
on the movements of an incapacitated person.
Where LPAs give power to make decisions
about life-sustaining treatments, they should set out the circumstances
in which the donee could exercise such authority.
It should be clear whether decisions
about withdrawing life support from patients in a permanent vegetative
state (PVS), or withholding or withdrawing artificial nutrition
and hydration from patients nearing the end of their life, should
be referred to court for a ruling.
There should be legal protection
for those who make healthcare decisions in good faith, in the
belief that a valid LPA existed or that the person lacked capacity
to make their own decision.
Where an adult is incapacitated and
has not previously made a LPA, it should be possible for a relative
or other carer to be appointed a deputy for healthcare decisions
with similar powers to those which might have been granted under
Advance decisions about refusal of
treatment should specify the circumstances in which the refusal
would apply as well as the particular treatment(s). Should advance
refusals be held by the Public Guardian along with any LPA?
More clarity is needed on the power
of Medical Visitors to access confidential medical records and
The Bill should also make clear whether
participation in medical research can be authorised under the
general authority of LPA.
Key issues to be covered in accompanying
Regulations or Codes of Practice should be outlined with the Bill.
Suggestions for areas to be covered include: explaining how the
role of Medical Visitor will work in practice; encouraging processes
for local informal dispute resolution.
1. The GMC is the statutory regulatory body
for the medical profession in the UK. Our core role is to protect
the public by maintaining a register of doctors who are competent
and fit to practise medicine. We do this by:
Setting standards of good medical
practice which reflect what society and the profession expects
Assuring the quality of basic medical
education in the UK and co-ordinating all stages of medical education.
Setting and administering fair systems
for entry to and retention on the medical register.
Dealing firmly and fairly with doctors
whose fitness to practise is questioned.
2. We have an interest in the proposals
in the Bill and accompanying explanatory memorandum, as they have
implications for doctors' ability to meet the standards of conduct
and care expected of doctors in their day-to-day relationships
with patients and their carers. Copies of our principal guidance
booklets, setting out these good practice standards, are enclosed
Good Medical Practice, 2001 edition.
Seeking Patients' Consent: the ethical
Confidentiality: Protecting and Providing
Information, 2000 edition.
Q1 Adequacy of consultation preceding the
3. We participated in a consultative forum
set up by the Lord Chancellor's Department. The forum had only
limited information about the likely content of the draft Bill.
Some key aspects were not made known to us before publication,
for example the limited restrictions on the scope of powers under
the general authority and lasting power of attorney (LPA). Some
healthcare issues, which we suggested should be covered in the
Bill, or proposed Code(s) of Practice, have not yet been addressed.
This is unfortunate since, for healthcare decisions, creating
LPAs will be a major new development with significant implications
for doctors, patients and their carers.
Q2 Clarity of aims and objectives?
4. We support the general aims of the draft
Bill, to improve and clarify the decision-making process for people
aged 16 and over when they are unable to make decisions for themselves.
We agree with the key principles, focusing on a person's decision-making
capacity and making judgements based on their best interests.
Q3 Are the objectives adequately met?
5. In our view, the detailed proposals only
go part of the way towards clarifying the legal position in relation
to healthcare decisions, and may not provide adequate protection
for vulnerable adults. We have concerns about how some of the
decision- making mechanisms in the draft Bill might work in practice.
And we believe there are important omissions, which should be
covered in the Bill, accompanying Regulations or Code(s) of Practice.
These points are expanded on in the comments below.
Q4 Are the proposals workable and sufficient?
6. It is difficult to assess this, without
the further information sought in our comments on the Clauses
of the draft Bill.
CLAUSES 2-3: PERSONS
7. The principles set out in these clauses
are well established in current medical practice and reflected
in the standards we set for doctors. To ensure they can be followed,
it's particularly important to provide clear guidance on how to
approach assessments of capacity and who should carry out this
role. For example, a "prescribed person" must sign a
statement about the capacity of the person granting a LPA, but
there is nothing to indicate who might fill this role. This might
be addressed in a Code of Practice, published with the draft Bill
so that some consensus on good practice can be established at
the same time. The Code might draw on current joint guidance from
the BMA and Law Society which is well regarded.
CLAUSE 5: ADULTS
8. For people aged 16 and under 18 years
old, paragraph 32 of the EM warns that there is overlap between
the draft Bill and other areas of law affecting their decision-making
rights (eg Children Act 1989). However it does not explain how
these laws might interact. In addition, there is no discussion
of what effect (if any) provisions in the draft Bill would have
on the current position where, for someone in this age group,
a competently made refusal of treatment can be overridden by a
person with parental responsibility or the court. In the absence
of clarification on these points, doctors and others would be
left with greater uncertainty about who can legitimately make
decisions for this group of people.
CLAUSES 6-7: GENERAL
9. It will be helpful to healthcare practitioners,
patients and their carers, to have clear legal authority to make
welfare decisions on behalf of an incapacitated adult. However,
we see two major concerns with the current proposal for the new
general authority to act reasonably.
10. Someone relying on the general authority
is expected to consult others, where practicable and appropriate,
about whether a proposed course of action is in the best interests
of the incapacitated person. For healthcare decisions, we need
to clarify what should happen if anyone consulted disagrees, but
that person does not hold any formal decision-making power (LPA
or court appointment). Would a doctor be able to proceed with
treatment, at least until someone with a welfare LPA or a court
appointed deputy raised objections, or a court ruling was made?
11. There are no restrictions on the type
of healthcare decisions which might be made under the general
authority. This is except for matters regulated by the Human Fertilisation
and Embryology Act, Organ Transplant Act and Mental Health Act
(see Clauses 26-28). It's not obvious why these exclusions are
proposed. But some other controversial treatments/procedures are
not excluded so that, as it stands, the scope of the general authority
would offer less protection to vulnerable adults than under current
law. At present non-therapeutic or controversial medical interventions,
such as contraceptive sterilisation and withdrawal of life support
from patients in a permanent vegetative state, should be referred
to court for a ruling. If it is the intention that issues of this
kind should no longer go to court, this should be made clear so
that the impact of such a change can be debated.
12. In our experience, those involved in
providing care to an incapacitated adult want clarity not only
about who has authority to make particular decisions, but also
about the circumstances in which it is preferable or necessary
to seek a view from the court. It's our view that the draft Bill
should include provision for certain procedures, to be set out
from time to time in Regulations, to be excluded from the scope
of the general authority and LPAs, and to require court approval.
Initial proposals for Regulations should accompany the Bill. This
approach would be similar to that in current mental health legislation,
and in the Adults with Incapacity (Scotland) Act 2000.
13. We also comment on issues raised by
the use, or threat, of force (Clause 7) in the section on LPAs
at paragraphs 16-17.
CLAUSE 8: LASTING
14. No explanation is offered why 18 is
the minimum age at which someone can grant a LPA, when the provisions
of the draft Bill are intended to apply to those aged 16 and over.
We would expect capacity rather than age to be the deciding factor
in making a valid LPA. Then it would be open to a parent (or other
party) to challenge the validity of the LPA, or the acceptability
of a particular donee, through the registration process.
15. Perhaps a difficulty arises from the
present position where, although we generally treat the wishes
of a person of 16+ who has capacity to decide in the same way
as an adult, those wishes could be overruled by someone with parental
responsibility or the court. If it is proposed that this situation
should continue (in contrast to the position in Scotland), then
it will be necessary to set out clearly how decisions should be
made for people in this age group.
CLAUSE 10: SCOPE
16. We support the general principle that
LPAs (and the general authority) cannot authorise the use or threat
of force, or restrictions on freedom of movement, where an incapacitated
person is resisting doing or having something done to them.
17. However, we have strong reservations
about the exception to this general rule - where there is a "substantial
risk of significant harm" to the incapacitated person. We
consider that the use of force or restrictions on movement might
be permitted only in an emergency (similar to the Scottish Incapacity
Act), where it is immediately necessary to save the person's life
or prevent significant deterioration in the person's health. It
should not be permitted over the longer term, or in non-emergencies,
unless authorised by the court. We do not see how the threat of
force could be justified. Would it not leave doctors and other
carers open to criminal charges of ill treatment (Clause 31)?
18. In subsection 10 (4) (b), it's clear
that LPAs can make express provision for the donee to make decisions
to refuse life-sustaining treatments. Given the sensitivities
and the often contentious nature of such decisions, we believe
that in granting such authority the donor should be required to
outline the type of treatment(s) and the circumstances in which
the donee would exercise authority to decide. This would be similar
to, and consistent with, the elements required in making a valid
advance refusal. It would also help, where both an advance refusal
and a LPA relating to life-sustaining treatment existed, in resolving
any doubts or conflicts over what course of action would be consistent
with the wishes of the incapacitated person.
19. In our experience, producing guidance
on withholding and withdrawing life- prolonging treatment, doctors
and others involved in making these decisions want as much clarity
as possible about what decisions may reasonably be made without
referral to a court. There are two particularly contentious issues
where it would be helpful if the draft Bill made clear whether
they would be covered by the LPA, or in what circumstances they
should be referred to the court:
Withdrawal of life support from a
patient in a Permanent Vegetative State (PVS) or near PVS.?
Withholding or withdrawing artificial
nutrition and hydration from patients nearing the end-of-life.
CLAUSE 13: PROTECTION
20. This seems to offer protection only
in relation to property and financial transactions done in good
faith, where it later turns out that no valid LPA existed. Doctors
and others making healthcare decisions would need similar protection.
21. In addition, a welfare LPA can only
be used by the donee when the donor lacks capacity to make a particular
healthcare decision. So where capacity fluctuates, decision-making
presumably would alternate between the donor and donee. It can
be difficult with some conditions to make a clear assessment of
the person's capacity. Some protection is needed for those exercising
authority under a LPA in the reasonable belief that the donee
lacked capacity to make the decision for his/herself.
CLAUSES 16-17 AND
19-20: APPOINTMENT OF
22. There is confusion about the role of
court appointed deputies. On the face of the Bill their role seems
limited to financial and property affairs. The EM states (paragraphs
67-70) they could be appointed to take welfare decisions, while
suggesting that this will happen only rarely and their power will
be very limited in scope and duration. In our view, the court
should be able to appoint a deputy to take healthcare decisions
for an incapacitated adult who has not executed a welfare LPA.
Some adults will not have had the capacity to execute a LPA, and
some may simply have failed to do so before becoming incapacitated.
Unless it is intended that, in these cases, most of the person's
healthcare would be provided under the general authority, appointing
a welfare deputy would seem to be a necessity.
23. If healthcare decisions for people who
have not made a welfare LPA are expected to be made under the
general authority, this would seem to put these adults (and their
carers) at a disadvantage. For example, some people are severely
mentally incapacitated long before reaching adulthood so that
many welfare decisions are made by their parents (or other carer).
Their carers would expect to continue to be the principal decision-maker
on their behalf, and would want this to be clearly recognised
24. We would support a change to the proposals
in the draft Bill so that, where an incapacitated adult has not
previously executed a LPA, a relative or carer could apply to
court to be appointed a deputy for welfare decisions, with similar
powers to those which might be granted under a LPA. This would
follow the approach taken in the Scottish Incapacity Act where
the court can appoint a "guardian".
CLAUSES 23-25: ADVANCE
25. We welcome the proposal to give statutory
force to advance refusals of treatment, along the lines established
in current case law. However, we are concerned that the descriptions
given in the Bill and the EM weaken some of the current protection,
by allowing a treatment to be refused without specifying the circumstances
in which the refusal would apply. Currently doctors are only obliged
to act on an advance refusal if it is validly made and clearly
applicable to the patient's present circumstances. We support
continuation of this requirement, which seems especially important
where life-sustaining treatment is being refused. This would still
leave scope for the circumstances to be described in broad terms
only and without using scientific language.
26. We also welcome the reassurance that
a person who withdraws or withholds treatment, in the reasonable
belief that a valid and applicable advance refusal exists, will
not be liable. However, it would put the matter beyond doubt,
if it were clear whether that person would have been expected
to take steps to check the position before proceeding.
CLAUSES 26-29: EXCLUDED
27. In addition to points raised at paragraphs
12 and 19 above, it would be helpful if the EM could set out the
rationale for these particular exclusions.
CLAUSE 39: POWER
28. Medical Visitors instructed by the court
of protection are given statutory power to access confidential
medical records and make a report (39(2)). There is a complementary
duty to allow medical visitors access for this purpose (39(6)).
However, similar powers (and a duty to comply)
have not been given to medical visitors instructed by the Public
Guardian, who will be involved in the day-to-day monitoring of
the use of LPAs (48(1)d,f,h). In the absence of a statutory requirement,
doctors would disclose confidential records to medical visitors,
only where the patient or the person holding LPA has given consent,
or where they judge that disclosure would be in the public interest.
(Guidance is in our booklet Confidentiality: Protecting and Providing
Information.) This may have practical implications for the work
of medical visitors.
Q5 Relevant issues not covered by the draft
29. Nothing is said about whether LPAs or
the general authority can be used to authorise the participation
of an incapacitated person in medical research. This is an important
and contentious area, which should be addressed in the Bill. We
would support an approach similar to that in the Scottish Incapacity
30. We would like to see specific proposals
on how and where advance refusals should be recorded. This is
important given that the draft Bill would create a new criminal
offence of deliberately concealing or destroying an advance refusal.
Would it be possible for these to be registered with the Public
Guardian, alongside any LPA?
Q6 How else might the draft Bill be improved?
31. To assess the overall effectiveness
of the legislation, it would be helpful to outline the key issues
expected to be covered in the proposed Regulations and Codes of
32. We have two further suggestions for
inclusion in a Code. Medical visitors. It is difficult to envisage
how the new role of Medical Visitor, responsible for monitoring
the use of welfare LPAs, will work in practice in settings such
as hospitals, GP practices, care homes. Will they follow a similar
approach to the system of visits under current mental health legislation,
or the Scottish Incapacity Act? Without more information, it's
difficult to assess how effective an arrangement this might be
for protecting the interests of incapacitated adults.
33. Dispute resolution. It would be helpful
if decision-makers were encouraged to use local informal processes
to try to resolve a disagreement about a patient's best interests,
before approaching the court for a ruling.