Alert regarding Advance Decisions - clinical commissioners should be aware of this case

Clinical commissioners should be aware of the recent court judgment in respect of a groundbreaking right to die case X PCT v XB and others in which Mills & Reeve acted for the PCT. The case concerned XB a patient in the final stages of Motor Neurone Disease. XB had made an Advance Decision (sometimes called a living will) last year setting out that he wanted all treatment (including artificial ventilation) withdrawn if he lost the ability to communicate. He was already paralysed at this point and communicated his wishes for this Advance Decision by moving his eyes. XB's ability to communicate then deteriorated further. The question arose whether the time had come to implement the advance decision and withdraw his treatment. One of his private sector carers then questioned whether the Advance Decision was valid. By the time of the hearing the patient had lost all ability to communicate even with his eyes and was completely locked in.

The way the advance decision was drafted suggested that it had a cut-off date after which it might not apply. That date was imminent so the Court of Protection therefore made a number of orders at an urgent hearing on a Friday requiring a huge amount of preparation to be done for a two day hearing on Monday and Tuesday. Mills & Reeve lawyers worked throughout the weekend drafting witness statements instructing experts liaising with lawyers for other parties and preparing court documents to ensure that the case was ready for Monday.

The Court ruled that the Advance Decision was valid deciding on the evidence that XB had clearly had the mental capacity to enter into the Advance Decision. The court also ruled that the document did not have a cut-off date. XB's carer had downloaded a pro-forma Advance Decision from a charity's website. That document had included boxes labelled Date of Review and Valid Until. These sections had been filled in without being discussed with XB so in effect did not form part of the Advance Decision. The judge stressed the importance of such documents being drafted with absolute clarity. The inclusion of the valid until on the document could have resulted in it being declared invalid and XB being denied the right to choose to have his treatment withdrawn.

PCTs and clinical commissioners should particularly note the court's guidance that health bodies should investigate any issues about the validity of advance decisions as a matter of urgency. It is the responsibility of commissioners to bring these cases to the court's attention. Failure to do so could lead to severe criticism if a patient's wishes are not or cannot be respected or if treatment is withdrawn and questions are later asked perhaps by a Coroner as to whether this was appropriate.

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