Living Will (Advance Decision) – Re XB  EWHC 1390 (Fam)
This useful case looks at an advance decision. It confirms that the particular document was valid since concerns as to its validity were ill-founded. It also sets out that there is no prescribed form an advance decision must take as each situation will be different but there are statutory requirements which must be satisfied for an advance decision to be valid.
XB, who suffered from Motor Neurone Disease, had a tracheotomy in 2003 so that his breathing could be assisted by an invasive ventilation device. This device consisted of a tube being inserted into his windpipe which meant he was unable to talk. From then on he was only able to communicate using eye movements and a communication board but had recently only been able to use eye movements alone. XB continued to be cared for at home despite the large degree of care that he required. The Primary Care Trust (PCT) commissioned the care which was delivered by XB’s GP and carers from a care agency. XB’s family and particularly his wife were very much involved in this care.
Over a period of some years, XB had indicated that he wished to have life sustaining treatment withdrawn, but his GP considered this wish should be formalised. Therefore, after further discussions with his GP, on 2nd November 2011 XB made an advance decision to refuse such treatment. The advance decision was based on a simple precedent his wife found on the internet and referred to the removal of non- invasive ventilation (although XB’s ventilation was in fact invasive). It also had a box called ‘Review 1’ where the date of 2nd May 2012 was put by the ‘Date of review’ and the same date was put by ‘Valid until’.
This document was carefully gone through by the GP, XB and his wife, who had been involved in agreeing it. A mental capacity co-ordinator was also involved in agreeing the document. All were in attendance on 2nd November 2011. The GP gave detailed evidence of the procedure he followed in ensuring that XB consented to every part of the advance decision. The document was signed by XB’s wife on his behalf.
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An application was made to the court by XB’s PCT as they were concerned about the circumstances in which the advance decision was made. These concerns were raised by one of the carers who said she did not see XB communicate his agreement by moving his eyes.
The court was asked to consider:
- If XB currently had capacity to communicate his decision about life sustaining treatment being withdrawn or continued;
- Whether the advance decision was entered into by XB on 2nd November 2011 and if so whether it was valid and acceptable; and
- Whether the advance decision, if entered into by XB on 2nd November 2011, was intended to be time limited to 2nd May 2012.
s24 of the Mental Capacity Act 2005 (MCA 05) sets out the general position regarding advance decisions while s25 sets out the law on the validity and applicability of them. S26 MCA 05 sets out their effect.
Mrs Justice Theis accepted ‘clear evidence’ that XB no longer had capacity to communicate any views on the withdrawal of life saving treatment and that that lack of capacity was permanent.
The judge was satisfied that XB did have capacity to enter into the advance decision on 2nd November 2011 and that as it complied with the formalities in the MCA 05 it was effective and valid. She was satisfied with detailed evidence from the GP that he was satisfied that XB understood and agreed to the terms of the advance decision. The careful process followed on 2nd November 2011 to ensure XB understood and agreed to the terms was confirmed by the donor’s wife and the mental capacity co-ordinator.
The family and carers used the term ‘Nippy’ for XB’s ventilation device. Although the judge believed this to come from the acronym for a non-invasive positive pressure ventilation device (NIPPV) when XB’s ventilation device was in fact invasive, she viewed the oral evidence as clearly referring to XB’s invasive ventilation device by the name ‘Nippy’. It was ‘Nippy’ that XB was referring to as being removed in the advance decision when the removal of non-invasive ventilation was referred to.
The carer who had raised concerns about the validity of the advance decision with the PCT was found to not actually have been present on the 2nd November 2011. In any event, the carer gave evidence that on the occasion that she had thought was 2nd November 2011, she was not in a position in the room to have seen XB’s eye movements. The carer who had in fact been present on the 2nd November 2011 did not raise any concerns about the process nor the validity of the advance decision.
The judge accepted evidence from the GP, the donor’s wife and the mental capacity co-ordinator that the date of the advance decision would be valid until was not specifically raised with XB, other than generally discussing that the advance decision should be kept under review. She therefore found that the advance decision was not time limited and the dates were intended only as indicating that it should be kept under review.
Mrs Justice Theis went on to make the point that while an advance decision can include refusing life sustaining treatment it cannot refuse basic or essential care such as keeping the patient clean or warm.
She also recommended that organisations who provide pro forma advance decisions review whether a ‘valid until’ date is necessary in the form. Clarity is needed for all concerned as to the terms of the advance decision.
- The judge urged that if an issue is raised about an advance decision, it is crucial that it is looked into by the relevant bodies as a matter of urgency. It is important to gather primary evidence from those present at the earliest opportunity.
- If an issue is raised about an advance decision, an urgent application should be made to the Court of Protection and the judges there are used to dealing with such applications.
- The judge confirmed that “there is no set form for advance decisions, because the contents will inevitably vary, depending on the person’s wishes and situation.” However, the Mental Capacity Code at 9.10 to 9.23 gives guidance on what should be included and the Code should be followed.
- The judge referred to the MCA 05 imposing certain legal requirements if the advance decision included refusing life sustaining treatment. The Mental Capacity Code at 9.24 to 9.28 covers these requirements and they must be followed in such an advance decision.
- If a pro forma advance decision form is being used, its terms should be carefully reviewed prior to completion and a ‘valid until’ date is not a necessity, although it is clearly very important that the advance decision should be kept under review.
- The judge recommended that although it is not compulsory, it is important to discuss advance decisions refusing life sustaining treatment with a healthcare professional.
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