80.Memorandum from the Association for
Palliative Medicine of Great Britain and Ireland (APM) and the
National Council for Hospice and Specialist Palliative Care Services
1. This response is focussed on the clauses
dealing with advance decisions, these being our area of expertise
both as medical practitioners in specialist palliative care and
2. Overall we welcome the principles which
underlie the proposals in these clauses. In particular, we are
pleased that the draft Bill addresses the problems which arise
when health care professionals have to make decisions on behalf
of those who lack capacity; that it allows for an LPA for health
and welfare matters; that it addresses the status of advance decisions
to refuse treatment; and that it provides a potential legal framework
within which advance decisions can be operated.
3. However, we are concerned that, in their
present form, the actual proposals are bland and undefined and
unlikely to serve truly the best interests either of patients
or of health care practitioners. In particular, the clauses are
so widely drawn that, if they were to come into force without
supporting codes of practice or guidance, they would in practice
be almost unworkable.
4. The important areas here relate to those
who have never had capacity and to those who have, for whatever
reason, not made an advance decision.
5. More guidance is required for those who
will make treatment-related decisions on behalf of those without
capacity. These individuals include those who act under a lasting
power of attorney, those who are designated by the Court as an
appointed deputy and those clinicians who may meet the person
without capacity for the first time when such a decision is required.
6. We note that clause 4 of the draft Bill
sets out some guidance for clinicians (and others) when assessing
a person's best interests. We would suggest that the views of
donees of LPAs should take precedence over those who might have
cared for a person in some minor respect, but whom the individual
in question had chosen not to appoint as an attorney.
7. It should be recognised that there cannot
be a single pro forma for these decisions which can never entirely
encompass what are highly personal judgements.
8. Our particular concern, in this context,
is to protect the interests of patients who have a long-term,
or regular but intermittent lack of capacity. Although the primary
focus of the draft Bill appears to be on persons with chronic
incapacity, it will clearly also apply to persons with physical
illness(es) which may cause either confusion or impairment of
consciousness. Such situations frequently render patients incapacitated
in making health care decisions, either temporarily or permanently.
In the context of palliative care such incapacity may be a predictive
event, but it may also be unexpected with a sudden onset.
9. The draft Bill requires decision-makers
to form an assessment about an individual's best interests. That
assessment will inevitably involve judgements surrounding the
individual's quality of life, in particular the question whether
or not, when reviewing all the circumstances and potential outcomes
that the individual faces, that life would be considered by the
patient to be worth living in the future.
10. An individual's view of disability and
quality of life changes as he progresses along the disease or
disability journey. Individuals are able to adjust to living with
conditions and outcomes which, to a healthy individual, would
make life intolerable. It is essential that decision-makers form
perspectives which take account of that.
11. This is relevant to advance decisions
as well. We would hope that any code of practice would include
a proposal that an individual should regularly revisit his advance
decision to keep it up to date and ensure that it reflects any
evolution in his attitudes as he progresses along the disease
12. General guidance for establishing advance
decisions has already existed for some time. It clearly states
the requirement that the individual must have capacity at the
time of making the decision
We note that the draft Bill reflects that position.
13. It is welcome that the draft Bill establishes
the means by which a framework to operate advance decisions can
be created. However, we note that there is currently very little
detail about how advance decisions would work in practice.
14. We suggest that either more detail is
included in the draft Bill concerning the proper drafting of and
interpretation of oral or written advance decisions or that a
Code of Practice is issued as soon as possible to guide professionals,
carers and appointed proxies. This should be considered alongside
the draft Bill before it is presented to Parliament, remembering
that the Code of Practice for the Mental Health Act 1983 was not
issued until 1990hardly helpful in the interim for patients
or those charged with caring for them. We would not welcome such
a delay applying to this draft Bill.
15. We note that, unlike some of the other
issues covered by the draft Bill, there is no requirement for
a code of practice to be issued in relation to advance decisions.
That is a significant flaw; the current proposals need further
detail and guidance before they would be workable. A code of practice
is essential before the clauses dealing with advance decisions
come into force. As the draft Bill currently stands it would be
possible to bring the clauses providing for advance decisions
into force without any supporting code of practice. That would
cause us great concern.
16. Given that so much about the detailed
operation of advance decisions has been left to a future code
of practice, we believe that, if Parliament is to be able to scrutinise
effectively the practical impact of this legislation, the codes
of practice should be considered alongside the draft bill.
17. We also note that members of the Mental
Incapacity Consultative Forum were told
that lessons had been learned from the Scottish experience, in
particular about the difficulties which arise when the publication
of codes of practice is left until after the passage of the primary
legislation. That experience should not be repeated here.
18. In particular, the following issues
need to be addressed, either in the primary legislation, or in
a code of practice:
(a) What form should advance decisions take,
both in terms of their recording or reporting, and any subsequent
amendments or withdrawals, as well as in terms of the required
detail or clarity? For example, how would an oral amendment to
a written decision work? As specialist palliative care practitioners,
we frequently work with oral advance decisions, recording these
in the patient's case noteswe would not wish to endorse
the implication that incapacitated people will be expected to
have drafted written advance decisionsas is the case in
the Scottish legislation.
(b) What level of detail will be needed to
enable a clinician to give effect to an advance decision?
(c) Should oral and written advance decisions
be witnessed and, if so, by whom, and by how many people, and
from what disciplines?
19. There should also be clear reference
to the fact that no advance decision can request any illegal act
such as euthanasia or physician assisted suicide and also that
physicians are not obliged to offer treatments which they believe
to be clinically inappropriate.
20. The emphasis of the draft Bill is on
decisions to refuse specific treatments. However, the sense of
advance decisions is often to exclude life-sustaining or life-prolonging
treatment more generallynot to focus on specific clinical
procedures. It is difficult, almost impossible, for a patient
to draw up a "shopping list" of treatments that he would
wish to refuse, before knowing what might be relevant to the conditions
that befall him.
21. The solution might be to distinguish
between specified treatments and treatment more generally, and
in particular to define what the Bill means by "life-sustaining
treatment". We note that in the Scottish legislation "medical
treatment and life-sustaining treatment" includes:
(a) surgical, medical, optical or dental
procedures or treatment;
(b) ventilation, nutrition and hydration
by artificial measures;
(c) any other procedure or treatment designed
to safeguard or promote physical or mental health.
Advance decisions should only relate to (b)
above if the individual specifically states that is to be the
22. We would be willing to offer oral evidence
to the Committee should that body consider this appropriate.
5 Harrison MAM Advance Directives: a critical examination
PhD thesis, University of Keele 1997. Back
BMA Advance Statements about Medical Treatment BMA 1995, reprinted
Meeting 14 May 2003. Back
Mental Health (Care and Treatment) (Scotland) Act 2003. Back