Two recent press stories have – whether deliberately or not – cast very unhelpful doubt upon the status of advance decisions to refuse life sustaining treatment. In this post, I set out briefly what I would suggest is the true position, after correcting some entirely incorrect statements made by Steve Doughty in the Daily Mail (and in part repeated by Frances Gibb in The Times).
The article by Steve Doughty suggested that that the President, Sir James Munby “issued directions without fanfare” in 2015 ruling that future decisions about the withdrawal of artificial nutrition and hydration should be brought to the court, and that this has now been “disclosed to the public” in a speech by Baker J. This is, frankly, nonsense.
Whilst Practice Direction 9E (which must be what this article is referring to) was re-issued in 2015, this was solely to update it to make reference to the change in the Official Solicitor’s address. It is in substance identical to the Practice Direction issued in 2007. It provides, as it always has, at paragraph 5 that “Cases involving any of the following decisions should be regarded as serious medical treatment for the purpose of the Rules and this practice direction, and should be brought to the court: (a) decisions about the proposed withholding or withdrawal of artificial nutrition and hydration from a person in a permanent vegetative state or a minimally conscious state…”
I have my own views as to whether “should” here reflects a provision of substantive law, or whether it is a statement which reflects a requirement of good practice, but these are not relevant here. It is important to understand, however, that there has been no change in practice in the Court of Protection, nor some secretive attempt to introduce new rules.
Importantly, Practice Direction 9E is, as it has always been, silent as to whether the implementation of an advance decision to refuse life-sustaining treatment (including clinically assisted nutrition or hydration (‘CANH’)) requires the prior approval of the Court of Protection. In his speech ‘A Matter of Life and Death’, Baker J noted that
“some doubt has been expressed as to whether either an advance decision or the power vested in the donee of a LPA extends to decisions concerning a proposal to withhold or withdraw ANH. This is because of the terms of the relevant Practice Direction supplementing the rules governing applications relating to serious medical treatment [the footnote here referring to para 5 of PD9E]. It is to say the least unfortunate that there should be such uncertainty and it is to be hoped that the opportunity will arise soon for the courts to resolve this question. So far as I am aware, there is no instance in this country of a case in which ANH has been withheld or withdrawn from a patient suffering from a disorder of consciousness without reference to the court.”
Baker J was most certainly not “ordering” that “living wills… must no longer be obeyed by the medical profession,” as Steve Doughty’s article suggests. At most, he was pointing out that there was an unfortunate uncertainty in this regard in respect of PVS and MCS only.
ADRTs and life-sustaining treatment – the true position
Whilst I would agree with Baker J that there is an unhelpful tension between the wording of para 5 of PD9E and the provisions relating to ADRTs in the MCA 2005, I would respectfully suggest that it is clear that, where the provision of CANH (or indeed any other medical treatment) is clearly covered by a valid and applicable ADRT, there is in fact no “decision” to be taken. Rather, as the MCA Code of Practice suggests (at para 6.18), “some treatment decisions are so serious the court has to make them—unless the person has previously made a Lasting Power of Attorney appointing an attorney to make such healthcare decisions for them (see chapter 7) or they have made a valid advance decision to refuse the proposed treatment (see chapter 9).” Whilst it is fair to point out that the Code of Practice contains a later passage (at 8.18) about withdrawal of CANH which might on one view be said to contradict this, I would suggest that the former extract captures the true position as regards both LPAs and ADRTs. Indeed, such would seem to have been confirmed by Lady Hale in Aintree v James where she noted (at para 19) that
“[…]It is not lawful to treat a patient who has capacity and refuses that treatment. Nor is it lawful to treat a patient who lacks capacity if he has made a valid and applicable advance decision to refuse it: see 2005 Act, sections 24 to 26. Nor is it lawful to treat such a patient if he has granted a lasting power of attorney (under section 10) or the court has appointed a deputy (under section 16) with the power to give or withhold consent to that treatment and that consent is withheld; but an attorney only has power to give or withhold consent to the carrying out or continuation of life-sustaining treatment if the instrument expressly so provides (section 11(8)) and a deputy cannot refuse consent to such treatment (section 20(5)).” (emphasis added)
There may well be circumstances in which there are legitimate grounds to doubt the validity or applicability of an ADRT. In such a case, it would be entirely right (and indeed in my view necessary) to obtain confirmation from the court under s.26(4) MCA 2005. Otherwise, however, it seems to me that it would be to go against the clear provisions of ss.24-26 to introduce any form of requirement that prior confirmation is sought before the ADRT is implemented. If it takes a court case to decide this (and slightly depressingly I think it now might) I hope that one can be brought sooner rather than later.
 I would respectfully suggest that this may well not be the case. Estimates (based on numbers of patients with PDoC in nursing homes in the UK) range from 4,000-16,000 patients in VS, with three times as many in MCS (see the House of Commons POST Note on Vegetative and Minimally Conscious States. By contrast, a search of Bailii and Westlaw suggests that somewhere around 10 cases have been decided where permission has been sought to withdraw CANH from a person in a PVS or MCS since the Court of Protection came into being in October 2007. There will have been some others which do not result in a judgment, but such cases are supposed to be heard in public and (at least since the President’s transparency guidance was issued in January 2014) judgments published. It seems me to be highly unlikely that given the sheer numbers involved there must not have been a number (and perhaps even a significant number) where the involvement of the court has not been sought prior to withdrawal of CANH.