X Primary Care Trust v XB & YB

Judge: Theis J.

Citation: [2012] EWHC 1390 (Fam)

Summary: This is the first reported case upon the validity of advance decisions.

Theis J was asked to consider an application by XPCT for declarations under s.26(4) MCA 2005 as to the validity of an advance decision made by XB on 2 November 2011 that he wished, amongst other things, to have his ventilation removed in certain defined circumstances.

XB suffered from Motor Neurone Disease. In 2003 he had a tracheotomy and was fitted with an invasive ventilation device. He subsequently returned home where his care was delivered through his GP, agency care workers and YB, his wife. Although he was unable to talk, XB could communicate through a variety of means, including through use of a communication board. Latterly, he communicated by moving his eyes to the right to indicate that he agreed with the question being asked. XB’s nutrition was provided via a PEG. The question of what life sustaining treatment XB wished to receive had been discussed with him since 2010 and although at various points in 2010 and 2011 he had indicated a wish to have that treatment withdrawn, he had not expressed that wish in what was considered to be a sufficiently consistent form.

On 2 November 2011, he made an advance decision to refuse treatment. The document, which was based on a pro forma advance decision which had been downloaded from the internet, stated that he would wish to have life sustaining treatment withdrawn in the event that his disease progressed to a stage where he was unable to communicate his needs or have control over decisions as to his care and management. The advance decision included a date for review of 2 May 2012 and the date 2 May 2012 had also been entered in the box marked “valid until.”

The document was agreed to by XB, with his wife YB, his GP (XW) who had been treating him since 1993 and a mental capacity coordinator (AW).

In 2012, concerns were raised by one of XB’s carers as to the circumstances under which the advance decision had been made. In particular, the carer asserted that she had not seen XB expressly consent to the decision by movements of his eyes. It took over a month to convene a meeting to discuss the issues raised by the carer. The meeting eventually took place on 23 April 2012.

In light both of the concern raised by the carer and also the fact that the advance decision appeared potentially to be limited in time, the PCT brought proceedings for declarations under s.26(4) MCA 2005. By the time those proceedings were brought, there was a very great deal of urgency to the matter, the first hearing being on Friday 27 April, and the final hearing before Theis J being on Monday 30 April and Tuesday 1st May so as to cater for the possibility that the advance decision was, in fact, time limited.

In her judgment, Theis J noted that there were three principal issues for determination:

(a) XB’s current capacity to communicate his decision as to the continuation of life saving treatment;
(b) Whether the advance decision of 2 November 2011 was entered in to by XB and if so whether it was valid and applicable; and
(c) Whether the advance decision of 2 November 2011 was intended to be time limited to 2 May 2012.

In respect of the first issue, there was no dispute as between the experts (a neurologist and a speech and language therapist, both of whom had visited over the weekend prior to the hearing to conduct an assessment) or the parties that XB lacked the capacity to communicate. It was also accepted by Theis J on the basis of the evidence before her that this lack of capacity was permanent. This meant, therefore, that (1) the condition that XB had indicated that was to be satisfied for his advance decision to take effect was met; but also (2) XB could no longer make a new advance decision in the event that the November 2011 decision was invalid.

In relation to the second issue (which arose as a consequence of the concerns raised by the carer), detailed statements were submitted to the Court. XW made a statement and gave oral evidence as to the circumstances in which the document came to be drafted and the steps that had been taken to ensure that it correlated to XB’s wishes. In particular, XW gave evidence that each section had been read out to XB who had communicated consent by movements of his eyes. Theis J noted that this evidence revealed three key points:

(a) first, the carer in question had, in fact, not been present on 2 November 2011;
(b) second, the events in question were unlikely to have occurred after the 2 November 2011;
(c) third, the carer accepted that when she had been present she would not have been in a position to see XB’s eye movements as she was on the left hand side of the bed.

On that basis, Theis J accepted XW’s evidence, as supported by the evidence of YB and that of AW. Accordingly, the judge concluded that XB had had capacity to make the decision on 2 November 2011 and that it was validly made.

In relation to the third issue, the evidence from AW was that the time limitation referred to in the document had not been discussed with XB or consented to by him. Theis J accepted this evidence and granted a declaration that the advance direction of 2 November 2011 was not time limited.

Theis J made a number of further comments relevant to advance decisions more generally:

(a) in the event that an issue is raised as to the circumstances in which an advance decision has been made, this should be investigated as a matter of urgency by the PCT;
(b) there is no set form for an advance decision which will necessarily vary in each case. She expressly referred, though, to the guidance in the Mental Capacity Code at paragraphs 9.10 to 9.23 as to what should be included;
(c) there are a number of pro forma advance decisions on the internet. She noted that organisations responsible for producing such pro forma documents might wish to look again at the merits of including a ‘valid until’ date.

Comment: This case stands as a cautionary tale in a number of respects. Through the concatenation of circumstances outlined above, the parties and Theis J were confronted with a situation in which XB’s family and treating team could not act upon XB’s wishes as he had sought to enshrine them in an advance decision, XB could no longer remedy that position because he no longer had the capacity to communicate a fresh decision, and XB would have been aware of the position (there being no suggestion that XB had ceased to be conscious by the time of the final hearing). Alternatively, that advance decision could have been valid but limited in time until only a matter of hours after the parties had finished in Court on 1st May 2012, such that XB’s family would have had to act almost immediately upon it; a prospect that does not bear easy contemplation.

Luckily (if that is the correct word in this tragic situation), the evidence before Theis J allowed her properly to conclude both that the carer’s concerns did not invalidate the decision and that XB had not inadvertently time limited his decision. However, and as Theis J noted, the case stands as a clear warning both that concerns as to the validity of advance decisions need to be aired and – if necessary – resolved before the Court in very good time, and also (and perhaps more importantly) pro forma advance decisions must be scrutinised very carefully so as to ensure that they do not inadvertently serve to frustrate the wishes of those using them.

The case also stands, perhaps more positively, as an example of the Court of Protection acting at its best, from a standing start of a hearing on a Friday (attended, fortunately, by the Official Solicitor, notified the day before) to a two-day hearing on the Monday and Tuesday, with the benefit of expert reports, witness statements, and representation by experienced solicitors and Counsel. It therefore shows what can happen when, as Theis J noted, ‘heaven and earth’ really does need to be moved.

CategoryMedical treatment - Treatment withdrawal, Mental capacity - Medical treatment Date


Sign up to our Mental Capacity Law Newsletter

If you would like to subscribe to our newsletters please click the link below.


Call +44 (0)20 7832 1111 for more information

Barrister portfolio


Click the + icon next to any barrister to add their profile to this portfolio.

Barrister Call CV Email