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28th July 2005

Dying man loses right to be fed battle

I like Les have a severely progressive disability which could leave me with diminishing abilities to swallow and communicate. When he won his first case in the High Court I, like many others, was overjoyed but after the Appeal. I will be very worried about being in hospital in the latter stages of my disability. Dying of thirst and starvation is horrendous anyway but the fact that doctors have the power to shorten my life when they feel like it goes beyond the limits of any remit of civilised duty of care. The Doctors argued that patients shouldn’t be able to ask for artificial nutrition and hydration because it might be burdensome or futile. Is being left to die in such a way not burdensome? Is turning hospital beds into the most inhospitable desert on earth not futile?

- Gill Gerhardi, Aylesbury, UK

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28/07/05 - Health section

Dying man loses right to be fed battle

The General Medical Council won its appeal today against a court ruling which gave terminally-ill Leslie Burke the power to stop doctors withdrawing food and drink when his illness reaches the final stages.

Mr Burke, 45, who has a degenerative brain condition, won a ruling last year in the High Court to stop doctors withdrawing nutrition.

But today a panel of three judges headed by Master of the Rolls Lord Phillips set aside the decision of Mr Justice Munby, which was hailed as a landmark for terminally-ill patients at the time.

The appeal judges were told at a hearing in May that the High Court ruling could put doctors in "an impossibly difficult position".

Philip Havers QC, representing the medical regulator, said the ruling would oblige a doctor to provide treatment which the patient demands even if the doctor's professional view is that the treatment will not provide any benefit or would be futile.

He said a patient did not have the right to demand any particular form of treatment.

Mr Burke, of Mardale Road, Newton Estate, Lancaster, who suffers from cerebellar ataxia, had feared reaching the point where, unable to communicate, he would be denied food and water and would take two to three weeks to die of starvation or thirst.

Afterwards he said: "Obviously I am disappointed that I have not got all that I wished for. "I have every wish to take it to the House of Lords even though for me personally I should be OK."

He was refused permission to take the case to the Law Lords but can petition the House for a hearing.

Only a 'technical victory'

Lawyers acting for Mr Burke said the appeal court ruling may have been a technical win for the GMC but was a "significant and practical victory" for their client and other patients like him.

Lord Phillips, giving the ruling of the court, said: "Where a patient indicates his or her wish to be kept alive by the provision of artificial nutrition and hydration (ANH), any doctor who deliberately brings that patient's life to an end by discontinuing the supply of ANH will not merely be in breach of duty but guilty of murder."

Where the Court of Appeal disagreed with Mr Justice Munby was over a situation where a patient's request for ANH was against a doctor's judgment that it would cause distress to the patient.

"Ultimately, however, a patient cannot demand that a doctor administer a treatment which the doctor considers is adverse to the patient's clinical needs.

"This said, we consider that the scenario that we have just described is extremely unlikely to arise in practice."

Mr Burke's solicitor Paul Conrathe said: "Today's judgment, whilst a technical victory for the GMC, is a significant and practical victory for Mr Burke and those in his situation.

"Mr Burke brought this case because he wanted to be sure that he would be provided with food and water until he died of natural causes. He was concerned that doctors would deny that request.

"The Court of Appeal have confirmed that patients like Mr Burke who want food and water have to be given it. Failure to do so would constitute murder. This is a significant matter for him."

He added: "Concerns remain that in the final stages of Mr Burke's life, when he has lost the ability to communicate, a doctor may over-ride his wish to receive food and water.

"It is towards those issues that Mr Burke will now consider whether to appeal to the House of Lords."

In a footnote to the judgment, Lord Phillips said that people in the "unhappy position" of Mr Burke "are entitled to have confidence that they will be treated properly and in accordance with good practice, and that they will not be ignored or patronised because of their disability".

He said the GMC's guidance for doctors on whether to withhold or withdraw life-prolonging treatments should be "vigorously promulgated, taught, understood and implemented at every level and in every hospital".

"If the extensive interest generated in this case helps achieve that objective, the proceedings will have served a useful purpose."

Professor Sir Graeme Catto, president of the GMC, said: "Patients should be reassured by this judgment, which emphasises the partnership needed to resolve end of life issues.

"Our guidance makes it clear that patients should never be discriminated against on the grounds of disability.

"And we have always said that causing patients to die from starvation and dehydration is absolutely unacceptable practice and unlawful. Today the Court has reinforced our position on these points.

"In the light of the judgment, we shall look at what further steps we can take to explain and promote good practice in this area."

Dependant on others for survival

Mr Burke knows that in the final stages of his illness, he will be entirely dependent on others for his survival because he will lose the ability to swallow and will need ANH. He will also have insight during the final stages and awareness of the pain, discomfort and extreme distress that would result from malnutrition and dehydration.

Lord Phillips said: "No one contemplating Mr Burke's predicament could fail to feel for him the greatest sympathy and, in our case, that sympathy was augmented by awareness of Mr Burke's dignified presence in court during the hearing of this appeal."

But the judge said there had never been a precise statement about Mr Burke's concerns. The evidence was that Mr Burke would remain competent until the final stage of his disease and so long as ANH was prolonging his life, he would be able to communicate his wish for treatment to continue if that is what he wanted.

When he lost the ability to communicate but was still aware before lapsing into a coma, ANH would not help him, said the judge.

"If Mr Burke fears that ANH will be withdrawn before the final stages of his disease, it is implicit that he fears that those caring for him may decide that his life is not worth living and withdraw ANH to bring it to an end, notwithstanding that he is able to communicate to them that he wishes them to continue to keep him alive.

"We must state at once that, if this is Mr Burke's fear, there is no reason for him to have it." He said the GMC guidance never suggested anyone caring for a patient would be entitled to withdraw ANH in such circumstances.

Lord Phillips said if Mr Burke had been well advised, he could have received assurances from the GMC or from the doctors treating him as to the circumstances when ANH could be withdrawn.

The judge said it appeared Mr Burke was persuaded to advance a claim in court by people who were trying to challenge aspects of the GMC guidance which had no relevance for him.


Meanwhile, a patients' rights group said today's High Court ruling against terminally-ill Leslie Burke was "a huge step backwards".

Joyce Robins, co-director of human rights campaign group Patient Concern, which helped argue Mr Burke should have the right to food and water, said the decision was a disappointment.

She said: "Doctors again have extraordinary power over us, making decisions on how and when we die. This is a huge step backwards for patients.

"The right to food and water is a right to simple basic sustenance but because they are considered treatment, they can now be taken away.

"We feel the judges are completely out of touch with the feelings of people in Leslie's position. Patients are entirely at the mercy of doctors making the decision over whether they live or die, which is obviously an intensely personal decision.

"This is only round one. We will take this all the way to Strasbourg if we have to." She also called for improved monitoring of the system of withdrawing nutrition and hydration from patients.

Patient Concern obtained leave from the courts to intervene in the appeal on behalf of Mr Burke and was present throughout the earlier hearings from May 16 to 19.

The Voluntary Euthanasia Society (VES) said the Government must step in to create a comprehensive framework for end of life decision-making following the Burke case.

Chief executive Deborah Annetts said: "Patients want to be fully involved in end of life decision making, and doctors really do want to know what patients want.

"The Government should step in and create a comprehensive framework for end of life decision-making to create a better partnership between patients and doctors.

"It should not be left to the courts to establish this framework. Without it, there is nothing to stop more challenges to the law.

"In the absence of this framework, we should all consider making a pro-choice living will. Patients want to communicate their wishes. Doctors want to know what patients want.

"Living wills are the most practical way to communicate our wishes, even if that is to be kept alive as long as reasonably possible and consent to all appropriate medical treatment."

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