Analysis
XB, who for years had been suffering from a progressive illness (motor neurone disease), required an invasive ventilation device in order to breathe and, being unable to talk, could only communicate latterly by the movement of his eyes. The question of life-sustaining treatment had been discussed on a number of occasions with his general practitioner and a draft advance decision to refuse treatment was prepared at his behest by a mental capacity coordinator. After considering the draft, in order to explain it to XB, a further simpler document was prepared using a template found by his wife, YB. In its final form, the advance decision expressed XB’s wish to have his ventilation device removed in the event that his disease progressed to a stage where he was unable to communicate his needs and lose the ability to have any control over decisions as to his care and management – it was read out to him and questions were asked in such a way as to ascertain whether he consented, which consent was communicated by the movement of his eyes. The document was signed on his behalf by YB and witnessed by both his general practitioner and the mental capacity coordinator on 2 November 2011. One of the carers was also present though another, who in the event was not present, later raised concerns as to the circumstances in which the advance decision was made. This led to the present application by the X Primary Care Trust. Declarations were sought as to XB’s current capacity to communicate a decision as to the continuation of life sustaining treatment, whether the advance decision was valid and applicable, and whether it was intended to be time limited.
Held (making the declarations sought):
- (1) There was no doubt on the evidence that by the time of the hearing XB had permanently lost the capacity to communicate decisions as to the continuation of life support and the conduct of the present litigation.
- (2) Although the terms of the advance decision were in places not entirely clear, it was more likely than not on the evidence that this did not undermine XB’s intention and that he had the necessary capacity at the relevant time and that it complied with all the necessary formalities to be an effective advance decision.
- (3) As to the question whether the advance decision was time limited, since a date six months after its making had been inserted at the end of the document where there was a box for a date of review and cesser of validity, this had not been discussed with or agreed to by XB. The dates had been inserted for the purpose of keeping the advance decision under review; not by way of limiting the time of its validity.
Obiter:
- (1) Whenever an issue was raised about an advance decision, the relevant health authority should investigate it as a matter of urgency so as to enable the relevant primary evidence to be gathered and, if required, an application made to the court;
- (2) There was no set form for advance decisions because the contents would inevitably vary depending on the maker’s wishes and circumstances, though guidance as to what should be included was set out in the Mental Capacity Code;
- (3) The desirability or otherwise of permitting the insertion of a ‘valid until’ date in those pro forma advance decisions available on the internet ought to be reviewed as it was clearly in the interests of the maker, his family and those responsible for the provision of treatment that there was clarity as to the terms of the advance decision.
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