Terminally ill man wins his right to live in landmark High Court ruling

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A man with a terminal illness who feared doctors might withdraw food and water from him when he deteriorates has won a landmark ruling requiring medical staff to honour his wish for life-prolonging treatment.

A man with a terminal illness who feared doctors might withdraw food and water from him when he deteriorates has won a landmark ruling requiring medical staff to honour his wish for life-prolonging treatment.

Leslie Burke, 44, who has the degenerative disease cerebral ataxia, launched a "right to life" challenge to guidelines issued by the General Medical Council which spell out when doctors can stop artificial feeding and hydration and let a patient die.

But in a High Court judgement yesterday which will have implications for the treatment of the terminally ill, Mr Justice Mumby ruled that although the bulk of the GMC's guidance was a "compelling piece of work", which should greatly reassure patients and their relatives, parts of it were "unlawful".

Mr Burke, from Lancaster argued that when his condition progressed to the point where he could no longer eat or drink for himself and had lost the mental capacity to take decisions, doctors might decide that his quality of life was so poor he should not be kept alive.

But the judge said that where a patient expressed a wish for life-prolonging treatment, either directly or in a "living will", treatment must be given even if doctors considered it would merely extend their suffering.

In cases where a patient had lost the capacity to decide or had made no living will, treatment should be given unless it would be "intolerable" from the patient's point of view. That would almost only occur, the judge said, when a patient was in a coma and close to death and artificial feeding and hydration would serve "absolutely no purpose other than the very short prolongation of life."

The judgment, which will require a redrafting of the GMC guidelines, was seen as shifting the balance of power from doctor to patient and in favour of prolonging life rather than ending it.

Mr Burke, who is in a wheelchair, said: "I'm just so pleased that it's gone in my favour. It just seems like a great weight lifted off my shoulders."

"In my case, doctors have told me I'm going to deteriorate to the stage where I need to be hospitalised and need artificial nutrition and hydration.

"This could be in 15 or 20 years' time but my communication and speech is already deteriorating and is a problem now. Further down the line, I won't be able to communicate my wishes either way and this could just be withdrawn without my consent. In a civilised society, it can't be right to allow vulnerable people to effectively starve to death.

Bert Massie, chairman of the Disability Rights Commission, said the judgement would give protection to disabled people with serious long-term conditions. "They want health professionals to do as much as possible to preserve life - as they would do for non-disabled people. Instead, numerous cases that have come to our attention show that sometimes they opt for the easy exit."

Under the GMC guidance, doctors must respect the wishes of a patient and their relatives, but may overrule them and withdraw treatment - including artificial feeding and hydration - if they judge that to continue would cause unnecessary suffering or be too burdensome in relation to the benefits.

Mr Justice Mumby said he had no difficulty with the "vast bulk" of the guidance. But the emphasis was on the right of the patient to refuse treatment, not to require it, and this gave a "significantly misleading impression."

Doctors currently made decisions based on what was in the patient's interest. But the judge said doctors were only able to assess the medical quality of life, not its social dimension.

The GMC was granted leave to appeal. Sharon Burton, senior policy adviser, said the case raised important points of principle and there were areas where clarification was needed.