Patient with motor neurone disease can be allowed to die, court rules

BMJ 2012; 344 doi: (Published 03 May 2012) Cite this as: BMJ 2012;344:e3183
  1. Clare Dyer
  1. 1BMJ

An advance decision to refuse treatment made by a man with motor neurone disease, who communicated only through eye movements, is valid and his life can “peacefully end,” a judge has ruled at the Court of Protection in London.

Mrs Justice Theis said she was “entirely satisfied” that he had the capacity to take the decision after hearing evidence from doctors, carers, and the man’s wife.

His wife had downloaded an advance decision template from the internet, and the document was read to him last November in the presence of a doctor, his wife, and a social worker. The man, referred to in court as XB, consented by means of eye movements and made it clear that he wanted the artificial ventilation keeping him alive switched off once he became unable to communicate.

That point had now been reached, and “doctors are talking about the care pathway with the family,” the family’s solicitor, Yogi Amin, told the BMJ.

Amin said he believed that the case was the first to be brought that determined the validity of an advance decision since the Mental Capacity Act 2005, which spells out the requirements for a valid decision, came into force in April 2007.

The case came to the Court of Protection—part of the High Court—after a carer raised concerns about whether the man had “communicated his agreement.” The carer’s employers, an NHS trust, applied to the court to ask for clarification on the matter.

The judge said lawyers had established that the carer was not present when XB, a 67 year old father of two from the south of England who was diagnosed 10 years ago with motor neurone disease, had consented to the document.

During a two day hearing, XB’s wife said that the question of what life sustaining treatment he would want was discussed with him on several occasions in 2010, and in 2011 he had indicated that he wanted the treatment withdrawn. He “wanted to be allowed to peacefully end his life,” she told the judge.

“I hope the next stage proceeds as well as can be expected,” the judge told the man’s family. The judge highlighted the importance of clarity when advance decisions are drawn up and called on health authorities to investigate any issues about their validity “as a matter of urgency.”

An adult who has capacity to decide may refuse any medical treatment, even if death is the certain result. Advance decisions or so called living wills allow a person to spell out such a refusal in advance, to take effect if or when he or she loses capacity.

Under the Mental Capacity Act, decisions to refuse life saving treatment must be in writing and signed, but another person may write and sign on behalf of a decision maker who is unable to write.


Cite this as: BMJ 2012;344:e3183

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