The Mental Capacity Act 2005 contains detailed provision for advance decisions – otherwise known as advance directives: see ss 24, 25 and 26. These are statements made by a person when capacitous, which may apply when the person loses capacity. If they are “valid and applicable” they have the same effect as if made by that person capacitously. A competent patient has the right to refuse even life-sustaining treatment.
An advance decision in relation to the withdrawal of life-sustaining treatment will not be “applicable” to the relevant treatment unless it complies with certain formalities: see s 25(5).
There has been little judicial consideration of ss 24-26. That makes the decision of Theis J in Re XB (Court of Protection: judgment 1 May 2012), particularly welcome.
The patient, XB, suffered from Motor Neurone Disease. He was cared for at home. He had a tracheotomy and a PEG tube. These made him less likely than other MND patients to die from aspiration or other respiratory complications.
When he was still able to communicate by way of eye movements he made an advance decision indicating that ventilation and artificial feeding should be stopped when he lost mental capacity. It complied with the s 25 formalities. It provided for review on 2 May 2012, and a box headed “Valid Until” was filled in with “2 May”. This raised the possibility that it was intended to be, or should be regarded as, a time-limited decision.
He lost all ability to communicate, and thus became legally incapacitous. Expert evidence indicated that the incapacity was permanent.
What should be done? Was the decision binding on the clinicians? And what, in particular, was the status of the “Valid Until” box?
The case turned on the evidence from the XB’s GP and the MHS co-ordinator, both of whom had witnessed the making of the advance decision and were clear that he had not changed his mind. The review, they said, was the GP’s, the MHS co-ordinator’s and the wife’s idea. The “Review” and “Valid Until” boxes had been filled in after the patient’s decision had been made. They were clear that XB himself did not intend the decision to lapse on 2 May.
The judge found that the decision was valid and applicable. The references to 2 May did not form part of it.
This case breaks no new legal ground, but the care with which the court examined the validity and applicability of the advance decision should give some comfort to those who worry that advance decisions will be waved blithely and followed with slavish and deadly literalism.
The judge also made two incidental but important practical points.
First: if there’s an actual or possible dispute about an advance decision, all relevant matters should be raised and investigated as soon as possible to avoid, if at all possible, last minute recourse to the court.
Second: the documentation used to record advance decisions is extremely important. Organisations (and there are many), which provide pro forma advance decisions, might want to review those pro formas. Lord Rix, in the Second Reading of the Mental Capacity Bill, 10 January 2005: Hansard Col. 50), suggested that a detailed pro forma should be inserted into the Code of Practice which accompanies the Act. The suggestion hasn’t yet been adopted. The comments of Theis J may cause the suggestion to be revisited.
[Many thanks to Mark Mullins, also of Outer Temple Chambers, for his helpful comments on the case].