Joint Committee on the Draft Mental Incapacity Bill First Report

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 incapable.

189. Clause 23 (1) defines such a decision as being intended:

" 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 According to Clause 23 (3) the decision can be withdrawn or altered at any time providing that the person making it has the capacity to do so.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 It would not be valid if the person making it had subsequently withdrawn it, whilst capable of doing so, or had subsequently conferred authority under a Lasting Power of Attorney to a donee to give or refuse consent to that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 decision.

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[220] 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.[221] 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.[222] 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 interests.[223]

196. A considerable body of written evidence claimed that the inclusion of advance decisions meant that the Bill was introducing 'euthanasia by the backdoor'.[224] We took evidence on this matter and considered the issues at length. For several faith organisations and the Guild of Catholic Doctors[225] 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.[226] 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.[227]

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.[228] They drew attention to the Court ruling in the case of Bland[229] that the provision of hydration and nutrition by artificial means amounted to 'treatment'.[230] They argued that withdrawal of nutrition and hydration would result in undue suffering and an unpleasant and undignified death.[231] 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.[232]

198. Witnesses from the medical profession[233] 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 point already".[234]

199. Those who believed that advance decisions should be included argued[235]that 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.[236] For these reasons the Making Decisions Alliance, for example, strongly supported the inclusion of advance decisions to refuse treatment in the Bill.[237]

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.[238] 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.[239] The risk of advance decisions being made under coercion was also raised.[240]

201. We have considered the proposal put forward by several witnesses[241] 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 developments.

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) [1991] 3 All ER 866 and Re T (Adult: Refusal of Treatment) [1993] Fam 95; [1992] 4 All ER 649 Back

221   See for example Ev 138-140 MIB 781, Ev 143 MIB 1191 Back

222   See for example Ev 145 MIB 1187 and Ev 140 MIB 679 Back

223   Ev 135-140 MIB 781, Ev 309 MIB 403 Back

224   See for example Ev 292 MIB 20, Ev 307 MIB 403  Back

225   MIB 352 Ev 425, Ev 313 MIB 457, Ev 135 MIB 781, Ev 455 MIB 969 and Ev 133 MIB 1001 Back

226   Ev 135 MIB 781 Back

227   Q739 (Lord Filkin) Back

228   Ev 308 MIB 110 Back

229   Airedale NHS Trust v Bland [1993] AC 789 Back

230   Q421 (Archbishop Smith)  Back

231   Ev 165 para 7 Back

232   Ev 96 Q266 (Dr Wilks, Dr Nathanson)  Back

233   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

234   Q362 (Professor the Baroness Finlay of Llandaff) Back

235   Ev 39 MIB 950 para 4.8 Back

236   Ev 333 MIB 742 para 12 (Appendix 36)  Back

237   Ev 30 MIB 950 Back

238   Ev 162 MIB 1203 para 9, Ev 166 Q9 Back

239   Ev 148 MIB 1187 Back

240   Ev 200-201 MIB 1210 Back

241   Ev 151 Q387 (Dr Howard) Back

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