The X Primary Care Trust v XB & Anor

An advance decision to refuse life-sustaining treatment is effective where the maker had capacity when it was made and the statutory formalities are satisfied. The court may resolve whether it exists, is valid and applies to the treatment under Mental Capacity Act 2005, section 26(4). An advance decision need not follow a prescribed form. Ambiguous wording may be resolved by evidence of the maker’s actual intention and the circumstances in which the document was prepared. A date included for review does not make the decision time-limited unless the maker agreed that it would cease to have effect. Any concern about an advance decision should be investigated urgently so that primary evidence can be obtained and, if necessary, an application made to the Court of Protection.

The applicant Primary Care Trust sought declarations concerning an advance decision made by XB, who suffered from motor neurone disease and had long-term invasive ventilation. The decision stated that ventilation should be removed when he could no longer communicate his needs or control decisions about his care, even if life was at risk. XB subsequently lost capacity to communicate and conduct the proceedings.

The issues were whether XB had made the decision with capacity, whether it was valid and applicable, and whether references to 2 May 2012 made it time-limited. The application was heard urgently after concerns were raised about the circumstances in which the document had been signed.

1. Declaration granted. The advance decision dated 2 November 2011 existed, was valid and was applicable to the specified treatment. It was not time-limited to 2 May 2012.
2. XB had capacity when he made the decision. The evidence showed that the document was read and explained to him collaboratively, and that he communicated his agreement through eye movements. The court accepted the evidence of his general practitioner and supporting witnesses.
3. The document complied with the requirements for refusing life-sustaining treatment under Mental Capacity Act 2005, sections 25 and 26. Although it referred to non-invasive ventilation when XB in fact received invasive ventilation, the evidence established that the reference meant the ventilation device known as Nippy. That ambiguity did not defeat XB’s intention.
4. The references to 2 May 2012 appeared in the context of reviewing the decision. They had not been discussed with or agreed by XB as an expiry date. The decision therefore continued to have effect.
5. There is no prescribed form for an advance decision. Its contents will depend on the person’s wishes and circumstances, but clarity about the treatment refused and the circumstances of refusal is important. An advance decision may refuse artificial nutrition and hydration, but cannot refuse actions required to keep a person comfortable. Concerns about such decisions should be investigated urgently, with an early application to the court where necessary.