When is an advance decision to refuse treatment not binding?

In a case that appeared on Baillii this morning, Keehan J came tantalisingly close to giving the answer to a question that has been exercising me for some time in relation to advance decisions to refuse treatment, namely: under what circumstances can the actions you take after you lose the relevant capacity mean that medical professionals are not bound to follow it?

Section 25(2)(c) MCA 2005 is ambiguous.   It provides that an advance decision is not valid if P “has done anything else [i.e. other than withdrawing it at the time they had capacity or granted an LPA subsequently which contains ‘overriding’ powers’] clearly inconsistent with the advance decision remaining his fixed decision.”

Section 25(2)(c) raises two real questions:

1. Does it only cover actions carried out prior to the onset of incapacity, or can it also cover the position where a person no longer has capacity to alter or withdraw their advance decision (and as a corollary whether to accept or refuse medical treatment)? In other words, is it apt to cover the situation envisaged by Munby J in HE v A Hospitals NHS Trust [2003] 2 FLR 408 where a person still has the ability (to a greater or lesser extent) to express his wishes and feelings whilst not retaining the capacity to alter or revoke his advance decision; and

2. What exactly does ‘do’ mean for purposes of s.25(2)(c)? Does it require that a person has taken a positive action (such as, in HE’s case, convert to Islam and thereby abandon the central tenet of the value structure upon which the decision was based, or, perhaps more commonly, accepting treatment offered by a medical professional), or can it extend to words (instance demanding or indicating that they would accept treatment)?

I discussed some of the issues involved here in an article written several years ago, noting that there had yet to be specific judicial consideration of the meaning of s.25(2)(c). We still do not have authoritative determination of the point, but in Re QQ [2016] EWCOP 22 Keehan J gave some passing (obiter) consideration to the term in the context of a decision was to whether a woman with mental health difficulties should be administered anti-coagulation medication.   He accepted that, throughout she had been under the care of her Responsible Clinician, she lacked the capacity to make decisions in relation to the medication.

It follows [he held] that I do not accept that when QQ made an advance decision in August 2015 in relation to her treatment that she was capacitous and therefore that it is a valid or lawful advance decision. If I were to be wrong on that issue, I accept Mr Wenban-Smith’s submission that the contrary views that QQ has recently and fleetingly expressed from time to time, namely that she would accept treatment, would not of themselves invalidate, pursuant to s 25 (2) (c) of the Mental Capacity Act 2005, what would otherwise have been a valid advance decision.”

Keehan J’s judgment is – for these purposes – frustratingly brief.   However, he undoubtedly left open the possibility that a person can render invalid an advance decisions that they have made to refuse treatment after the point that they have lost capacity both to withdraw it and to make decisions as to medical treatment (and hence it is prima facie applicable), for instance by making sustained (incapacitous) indications that they either wished or would accept medication that they had previously sought to refuse in their advance decision.

On one view, this must be right, and indeed, as noted in the article, it seems to me that in reality it is all but inconceivable that both clinicians and the courts would stand by and decline to treat a patient who (albeit from the other side of capacity) was seeking to undo an ADRT that they had previously made.   It also acknowledges the reality that (in most cases) it is not actually possible to anticipate precisely how you might feel at the point when you are deemed to lack capacity to make decisions as to your own medical treatment, and what at that point you might or might not want.

On another view, both as a matter of strict construction of the Act and from a purely philosophical perspective, we might question whether this is correct.   The very point of an advance decision to refuse treatment is that you are seeking – in advance of incapacity – to lay down your refusal to consent to that treatment, which you intend to be binding as if you were capacitously refusing at the point it is being offered it. It is, viewed from this perspective, a remarkably stark example of the ‘self-binding’ or Ulysses directive, and you should (arguably) be held to the consequences of your decision even at the point when, by definition, you are not in a position to make it.

In due course, it may well be that there will need to be a decision (or possibly statutory reform) which will assist us calibrate ADRTs in such a way as to ensure that they serve as a tool to exercise legal capacity without (inadvertently) binding those who make them into irreversible and (properly) unconscionable situations.   In our recent Essex Autonomy Project Three Jurisdictions Project report, we touched upon this dilemma by reference to Article 12 CPRD (see pp.33) , and it is one that will only become more prevalent as – is to be hoped – the use of ADRTs become more widespread.


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One Reply to “When is an advance decision to refuse treatment not binding?”

  1. People are already trying to “future proof” their advance decisions against the risk, highlighted here, that doctors may decide to give treatment on the grounds that the non-capacitious self is content to receive treatment specifically rejected, in advance, by the capacitious self. In our work with the charity, Advance Decisions Assistance ( (http://adassistance.org.uk)) we regularly discuss whether or not people wish to do this (there are of course ethical arguments both ways). It would be helpful for people who DO want to be bound by an advance decision (irrespective of the views of their future non-capacitious self) to take a look at Raanan Gillon’s advance decision, published as supplementary material to an article on advance decisions. The key relevant sentence is this:

    I require this Advance Decision To Refuse Life Prolonging Treatment to be followed even if, in a state of such incapacity or lack of ability to communicate, I appear to be content with my lot, and or to have no preferences or opinions, and or in which my current views are unknown or unclear, and even if anyone caring for me believes that I would wish to revoke any part of this ADRLPT (http://jme.bmj.com/content/early/2016/04/26/medethics-2016-103538/DC1/embed/inline-supplementary-material-1.pdf)

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