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A man who is terminally ill and fears that doctors may allow him to die of thirst said he was “disappointed” after the Court of Appeal overturned an earlier judgment in his favour.

Last July, the British High Court granted a landmark court challenge by Leslie Burke, 45, and declared that key sections of General Medical Council (GMC) guidelines regarding tube feeding, hydration, and withdrawal of life-prolonging treatment were unlawful.

Burke, a wheelchair user with cerebellar ataxia, a degenerative nervous system disorder, had feared that, once he could no longer swallow and communicate, doctors would decide that his “quality of life” was no longer sufficient to warrant his receiving food and fluids through a tube.

High Court Judge Munby agreed with Burke and ordered the GMC to revise its guidelines to indicate that doctors must provide food and fluids to a competent patient who requests them, as well as to an incompetent patient with an advance request for such treatment. []

But 28July05, three appeal judges allowed an appeal by the GMC, backed by the British government, against the ruling, setting aside 6 declarations by the trial judge.

Permission to appeal was refused.

At the time of the appeal hearing, Burke explained that he is not asking for radical treatment to extend his life.

“I just do not want to effectively die of starvation and thirst which may take up to two weeks. I want as far as possible to be able to approach the end of my life with dignity.” [Gulf Daily News 17May05]

Lawyer Philip Sales, representing Health Secretary Patricia Hewitt, told the panel of 3 appellate judges that doctors, not patients, should have the final say on treatment options like tube feeding, otherwise there would be “inefficient use of resources within the NHS (National Health Service).”

It was estimated that providing a patient with artificial nutrition and hydration would cost the NHS 1500 pounds per day. [London Times, 18May05, 19May05]

[ed note: Feeding a patient through a tube is relatively simple, inexpensive, and is not time-consuming. Why this high daily cost was estimated is unknown.]

David Wolfe [Disability Rights Commission (DRC)] told the appeal judges that no one should determine that certain treatment was not in the patient’s best interest based on “resource implications”.

The DRC is concerned that resource allocation issues should not be dressed up as, or confused with, an evaluation of what is in the patients’ best interests,” he said.

Wolfe also charged that the health secretary and the GMC demonstrated negative attitudes toward disabled persons. [Guardian, 19May05; PA News 19May05]

In an unusual move, Lord Phillips, the Master of the Rolls, issued a press release saying that “the fact that the appeal has been allowed does not mean that Mr Burke has lost”.

Mr Burke will need artificial nutrition and hydration – known as ANH – when he loses the ability to swallow. Lord Phillips explained that Mr Burke appeared to fear that ANH would be withdrawn before the final stages of his disease, when it would not be capable of prolonging his life.

“If this is Mr Burke’s fear, there is no reason for him to have it,” Lord Phillips said.

“There are no grounds for thinking that those caring for such a patient would be entitled to or would take a decision to withdraw ANH in such circumstances.”

The GMC’s guidance did not suggest to the contrary, added Lord Phillips, who was sitting with Lords Justice Waller and Wall.

The judges added that, “where a competent patient indicates his or her wish to be kept alive by the provision of 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”.

But they stressed that “in the last stage of life” ANH – far from prolonging life – may even hasten death.

“It is only in this situation that, assuming the patient remains competent, a patient’s expressed wish that ANH be continued might conflict with the doctor’s view that this is not clinically indicated.”

Mr Justice Munby ruled in the High Court that the patient had the right to insist on ANH but the Court of Appeal disagreed.

“A patient cannot demand that a doctor administer a treatment which the doctor considers is adverse to the patient’s clinical needs. That said, we consider the scenario that we have just described is extremely unlikely to arise.”

Some believed Mr Burke might have been persuaded by others to challenge aspects of the GMC guidance that had no relevance to someone in his position.

His solicitor, Paul Conrathe, said the ruling was a “technical victory for the GMC” but a “significant and practical victory for Leslie Burke and those in his situation”.

Prof Sir Graeme Catto, the GMC president, said: “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.”

Prior to the appeal court decision, a Daily Telegraph editorial [17May05] sided with Burke: “The General Medical Council is arguing that doctors should not be forced to provide treatment they consider inappropriate. That seems perverse: a doctor’s medical judgment should come second to the much stronger natural presumption of the right to life.”

[[email protected]; J Rozenberg, Filed: 29July2005; N Valko RN, 29July05; Update, International Task Force, vol 19, no.1, 2005]