11 Chapter 11: (Clauses 22-26) Advance
Decisions to Refuse Treatment
188. Clauses 23 to 25 of the draft Bill set out the
circumstances in which persons with capacity, having reached the
age of 18, may express in advance a decision about what treatment
they would wish not to have if they were subsequently to become
189. Clause 23 (1) defines such a decision as being
" so that if -
a) at a later time and in such circumstances
as he may specify, a specified treatment is proposed to be carried
out or continued by a person providing health care for him; and
b) at that time he lacks capacity to consent
to the carrying out or continuation of the treatment, the specified
treatment is not to be carried out or continued."
190. Clause 23 (2) provides that the 'treatment'
concerned in such a decision can be expressed in broad terms and
in non-scientific language. According to Clause 23 (3) the decision
can be withdrawn or altered at any time providing that the person
making it has the capacity to do so.
191. Clause 24 defines the lawfulness of such a decision.
The key points are that to be valid the person making it must
have been capable at the time it was made and that it should be
applicable to the treatment concerned. It would not be valid if
the person making it had subsequently withdrawn it, whilst capable
of doing so, or had subsequently conferred authority under a Lasting
Power of Attorney to a donee to give or refuse consent to that
treatment. Nor would it be valid if the person making it had
"done anything else clearly inconsistent
with the advance decision remaining his fixed decision".
192. If they still had capacity, any wish expressed
at the time of treatment would over-ride any previous advance
193. In Clause 24 (4) the draft Bill makes clear
that any advance decision would not be valid if the treatment
proposed was not what was specified in the advance decision or
if the circumstances specified were absent. Nor would it be valid
in circumstances which could not have been anticipated by the
person at the time of making the advance decision and which would
have affected that decision had they anticipated them. Most importantly,
it makes clear that advance decisions are only applicable to life-sustaining
treatments where they are specified in the decision.
194. Clause 25 sets out the effects of such advance
decisions. It states that a valid advance decision has the same
effect as a statement refusing treatment made by a person who
is capable at the time of making it. This would give statutory
confirmation to existing court rulings
that a treating doctor is obliged to respect a lawfully-made advance
decision about a specified treatment. It follows that it would
be unlawful for a treating doctor to knowingly ignore such a decision.
195. A very considerable number of written submissions
were received expressing grave concern about this aspect of the
draft Bill. Many
argued from a standpoint of moral conviction that it was wrong
to introduce a statute that could enable decisions that would
effectively shorten life.
Others argued that it was wrong to require a doctor not to give
treatment that the doctor believed was in a patient's best clinical
196. A considerable body of written evidence claimed
that the inclusion of advance decisions meant that the Bill was
introducing 'euthanasia by the backdoor'.
We took evidence on this matter and considered the issues at length.
For several faith organisations and the Guild of Catholic Doctors
the omission of treatment that might prolong life even if for
a short period of time was considered unacceptable unless such
treatment was likely in itself to result in undue suffering.
We noted that there was nothing in the Bill that allowed for an
act that had the clear intent to end a person's life. This was
confirmed in oral evidence by the Parliamentary Under-Secretary
of the Department for Constitutional Affairs, Lord Filkin.
197. Allied to these concerns, numerous witnesses
objected to the fact that the draft Bill allows life-sustaining
treatment (e.g. artificial ventilation) to be refused.
They drew attention to the Court ruling in the case of Bland
that the provision of hydration and nutrition by artificial
means amounted to 'treatment'.
They argued that withdrawal of nutrition and hydration would result
in undue suffering and an unpleasant and undignified death.
The BMA in their evidence suggested that, while the use of artificial
means of nutrition and hydration amounted to treatment and could
therefore be refused, the Bill should stipulate that basic care
could not be refused.
198. Witnesses from the medical profession
also put it to us that: a) people when capable could not foresee
how they might wish to act if they were to become incapable and
therefore should not commit themselves to a course of action from
which they could not withdraw having become incapable; b) unforeseen
circumstances, such as the development of a new treatment the
use of which would be in their best interests, could arise after
the advance decision had been made; and c) the course of action
specified in the advance decision might prolong suffering rather
than relieving it. We heard evidence from Professor the Baroness
Finlay of the difficulties she and her medical and nursing colleagues
faced working in palliative care services. She told us that her
personal choice would be that Advance Decisions should always
be advisory "but case law seems to have taken us beyond that
199. Those who believed that advance decisions should
be included arguedthat
this was a logical and appropriate continuation of respect for
a patient's individual autonomy in matters of medical treatment.
The law already recognises that a capable person can refuse treatment
even if that refusal might end their life. But for a doctor to
proceed with treatment under such circumstances would be unlawful.
Thus it was argued that the draft Bill only proposed to regularise
the existing status quo and that it was a logical extension of
the established principle of autonomy.
For these reasons the Making Decisions Alliance, for example,
strongly supported the inclusion of advance decisions to refuse
treatment in the Bill.
200. Several witnesses regretted that the draft Bill
did not require advance decisions to be made in writing, witnessed
or made with the benefit of professional advice.
Others feared that people might make advance decisions while in
a state of despair or depression that they would not have made
under more normal circumstances.
The risk of advance decisions being made under coercion was
201. We have considered the proposal put forward
by several witnesses
that the specific provisions relating to advance refusals of medical
treatment should be excluded from the Bill. This would leave in
place the common law provisions which have made valid and applicable
refusals effective. But this would create undesirable uncertainty
over how advance decisions might fit into the Bill's proposed
statutory decision-making hierarchy. In particular, the proposed
powers of donees, deputies and the Court to make healthcare decisions
would have no common law equivalent.
202. Moreover, if the Bill contains no mention of
advance decisions to refuse treatment, the Court of Protection
cannot be given a statutory power to decide whether an advance
decision has been validly made, including any question of the
person's capacity to make it or whether it is applicable in particular
circumstances. That would mean that the High Court would continue
to resort to its inherent jurisdiction in relation to adults who
lack capacity (a jurisdiction which will otherwise have become
largely redundant) to resolve such matters. In our view, this
would leave a very significant and undesirable gap in the Bill's
provisions. This would be contrary to the draft Bill's intention,
which we support, to create a comprehensive and accessible framework
of statutory legislation.
203. We recommend that the Bill should permit
the making of advance decisions to refuse treatment. We recognise
the genuine and deeply-felt concern of those who have moral objections
to any decision being taken that could end life, but that right
is recognised in law for those who are capable of making such
decisions and we think it is right that the Bill should provide
for those who wish to do so to have the legal means to have that
decision respected should they become incapable. In doing so,
the Bill should aim to set standards for good practice and ensure
a means of challenge under circumstances where there were disagreements
that could not be resolved.
204. Many of the fears which have been raised
with us about possible connections between the draft Bill and
euthanasia appear to be misplaced. Nevertheless, in acknowledgment
of the strength of feeling that clearly exists on this issue and
in the hope that such misplaced fears do not detract attention
from the many worthwhile aspects of the draft Bill, we recommend
that additional assurance should be offered by the inclusion of
a paragraph in the Statement of Principles we have recommended,
or by an additional clause in the Bill, to make clear that nothing
in the Bill permits euthanasia or alters the law relating to it.
205. In most circumstances we believe that it
would be reasonable for the Bill to require that advance decisions
to refuse treatment should be recorded in writing and witnessed
by two independent persons having no financial interest in that
person's estate. An exception might, however, be made where the
decision was taken during ongoing medical treatment in which case
it should be recorded by the doctor in charge of the treatment
in the patients notes and independently witnessed. We believe
that all individuals should be encouraged to register their advance
decision with their doctors.
206. We recognise that advance decisions which
they may not otherwise wish to make may be made by those suffering
from depression, stress or other conditions that would affect
their judgment. We also fully appreciate the potential for coercion
or other malevolent actions on the part of others to secure advance
decisions from vulnerable people. We therefore recommend that
the Codes of Practice should require doctors to satisfy themselves
that any advance refusal of treatment is valid and applicable.
207. We also recommend that the Department should
issue sensitive public guidance designed to promote better understanding
of what is involved in making advance decisions. This should explicitly
state that any advance decision to refuse treatment should be
made voluntarily. It should also include encouragement to seek
appropriate professional advice before making such decisions,
aimed at ensuring that they were made in the full knowledge and
understanding of any relevant medical factors and written in an
appropriate form. The Departmental guidance might include a suitable
specimen pro-forma. It should also encourage them to update such
decisions regularly, especially in the light of relevant medical
208. We also recommend that the Codes of Practice
should set out what should be considered by any doctor, when treating
a person who is incapacitated and who is known to have made an
advance decision, in determining whether such an advance decision
is valid and appropriate. The Code should also state that, under
these circumstances, any reasons why such an advance decision
was considered valid, invalid or inappropriate must be recorded
in that person's health records.
209. We believe that clause 24(4) in the draft
Bill is sufficient to address the specific concern about new and
unanticipated treatments becoming available which might have a
bearing on an advanced decision. We recommend that specific guidance
on this be given in the Codes of Practice.
210. We believe that people, whether incapable
or not, have the right to expect that they will be cared for to
the highest standards. We recommend that the Codes of Practice
should explicitly state that the duties and responsibilities placed
on health professionals must apply equally to capable and incapacitated
people. No assumption should be made that life has less value
for the latter.
211. We recommend that the Bill should seek to
draw a distinction between basic care (which would include the
giving of nutrition and hydration by normal means as well as actions
to assist general hygiene and comfort), and the use of artificial
means of nutrition and hydration, such as drips or naso-gastric
tubes. We support the view that the former falls outside what
is normally considered to be treatment and should always be available
to people whereas the latter should be regarded as treatment in
that the decision to use such artificial means is a clinical one
to be made in accordance with best professional practice, and
in the best interests of the patient concerned, and having consulted
those specified in Clause 4 (2)(d).
212. We further recommend that the use of such
artificial means should be determined by the doctors concerned
in consultation where possible with the patient's family, friends
or recognised representatives, on the basis of that patient's
best interests and having due regard to previously expressed wishes
given in any advance decision. If a valid and clearly expressed
wish not to have artificial means of nutrition and hydration is
expressed, and the advance decision is otherwise valid, then that
wish should be respected.
220 See, for example, re C (a patient)  3 All
ER 866 and Re T (Adult: Refusal of Treatment)  Fam 95; 
4 All ER 649 Back
See for example Ev 138-140 MIB 781, Ev 143 MIB 1191 Back
See for example Ev 145 MIB 1187 and Ev 140 MIB 679 Back
Ev 135-140 MIB 781, Ev 309 MIB 403 Back
See for example Ev 292 MIB 20, Ev 307 MIB 403 Back
MIB 352 Ev 425, Ev 313 MIB 457, Ev 135 MIB 781, Ev 455 MIB 969
and Ev 133 MIB 1001 Back
Ev 135 MIB 781 Back
Q739 (Lord Filkin) Back
Ev 308 MIB 110 Back
Airedale NHS Trust v Bland  AC 789 Back
Q421 (Archbishop Smith) Back
Ev 165 para 7 Back
Ev 96 Q266 (Dr Wilks, Dr Nathanson) Back
Ev 103 MIB 817 para 7, Ev 104 MIB 824, Ev 162 MIB 1203 para 12
(Ev 141 MIB 183, Ev 135 MIB 781, Ev 487 MIB 1164, Q384 (Dr Gardner),
Q387 (Dr Howard) Q414 (Dr Treloar) Q420 (Dr Craig) Back
Q362 (Professor the Baroness Finlay of Llandaff) Back
Ev 39 MIB 950 para 4.8 Back
Ev 333 MIB 742 para 12 (Appendix 36) Back
Ev 30 MIB 950 Back
Ev 162 MIB 1203 para 9, Ev 166 Q9 Back
Ev 148 MIB 1187 Back
Ev 200-201 MIB 1210 Back
Ev 151 Q387 (Dr Howard) Back