Care home briefing 118 – The validity of advance decisions
The Mental Capacity Act 2005 provided a proper statutory basis for advance decisions to refuse medical treatment.
The Court of Protection has now had to consider issues regarding the validity of an advance decision and the case report provides useful guidance (see X Primary Care Trust v XB and YB  EWHC 1390 (FAM)).
In the XB case, the patient suffered from motor neurone disease. He had a tracheotomy and was fitted with an invasive ventilator. He was however cared for at home with support from care workers, his GP and his family. He was unable to talk but he could communicate using initially a communication board and more latterly by moving his eyes. Nutrition was provided via a PEG tube.
In November 2011, XB made an advance decision to refuse treatment. The advance decision was based on a downloaded pro forma document which had been obtained from the internet. It stated that XB would wish to have life sustaining treatment withdrawn in the event that his disease progressed to a stage where he was unable to communicate his needs or have control over decisions as to his care and management.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 pro forma document included a provision for a review date in May 2012 and also had a box marked “valid until” in which the same May 2012 date had been inserted.
Concerns were subsequently raised by one of XB’s carers as to whether the advance decision was valid. The concern was whether XB had properly consented to this as the carer said she had not seen him expressly do this by moving his eyes.
As these concerns had been raised about the validity of the advance decision, the PCT thought it was appropriate to ask the Court to review this.
Accordingly, the PCT brought proceedings seeking declarations under Section 26(4) of the Mental Capacity Act.
The key issues that the Court needed to address where:
1. XB’s current capacity
2. Whether the advance decision was valid
3. Whether the advance decision was intended to be time limited to May 2012
The Court decided that XB did indeed lack capacity. He had by that time lost capacity to communicate and was therefore unable to make treatment decisions. The Judge held that this lack of capacity was permanent and therefore he could no longer make any further advance decisions.
In respect of the second issue, namely whether the advance decision was valid, the Court heard evidence that each section of the advance decision had been read out to XB who had consented to this by moving his eyes. The Judge therefore accepted that the advance decision had been validly made.
In respect of the third issue, namely whether the advance decision was time limited, the Court heard evidence that this part of the advance decision document had not been discussed with XB. Accordingly, the Judge held that the advance decision was not time limited.
In addition to dealing with the specific issues raised by the XB case, the Judge took the opportunity to make a few additional comments relevant to advance decisions generally. She commented:
1. Where there is doubt as to the circumstances of an advance decision, these should be investigated urgently.
2. There is no set form for an advance decision although the guidance in paragraphs 9.10 to 9.23 of the Code to the Mental Capacity Act indicates what should be included.
3. There are a number of pro forma advance decisions available, but the Judge invited those drafting such documents to reconsider the merits of including a “valid until” date.
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This briefing is for guidance purposes only. RadcliffesLeBrasseur accepts no responsibility or liability whatsoever for any action taken or not taken in relation to this note and recommends that appropriate legal advice be taken having regard to a client's own particular circumstances.