A man with a degenerative brain condition has launched an unprecedented human rights challenge to guidance for doctors which he believes could allow them to end his life by legally sanctioned euthanasia.
Leslie Burke, who has cerebellar ataxia, is mounting a right-to-life challenge to General Medical Council guidelines on withholding and withdrawing life-prolonging treatment which spell out when doctors can stop artificial feeding and let a patient die.
In the case, due to be heard at the high court in London at the end of February, he will argue that the guidelines, published last year after extensive consultation with patient groups and with medical, legal, religious, human rights and ethical experts, are unlawful.
In 1993 the House of Lords ruled, in the case of Hillsborough football ground disaster survivor Tony Bland, that doctors should seek court approval before discontinuing artificial feeding from patients in a permanent vegetative state (PVS). But the guidance allows doctors to halt artificial feeding without going to court for patients with other conditions.
Mr Burke, 43, from Lancaster, is still mentally competent but fears that when his illness reaches the stage where he can no longer take decisions, doctors will decide his quality of life is so poor he should not be kept alive.
The law lords ruled in the Bland case that artificial feeding counts as medical treatment and therefore can be withdrawn from mentally incompetent patients if doctors deem it not to be in the patients' best interests.
Mr Burke argues that the guidance is unlawful under domestic and European human rights law because it will allow doctors to stop feeding him without knowing what he would have wanted at the time and without going to court.
"I don't believe in euthanasia," he said. "I feel very strongly that if I ever end up in hospital in the position where my life is in the balance, doctors should not be able to make the final decision on whether my life is worth living or not.
"Doctors and medical staff are very skilled, but I don't think they have any full understanding of the quality of life you can have if you're disabled in some way."
The GMC guidance covers the situation where a patient's death is not imminent but doctors judge that his condition is so severe and the prognosis so poor that providing artificial feeding or hydration - giving water - may cause suffering or be too burdensome in relation to the benefits.
A decision to withhold or withdraw feeding or hydration may be made only after a full assessment of the patient's requirements and the possible means of providing nutrition and hydration; after a full consultation with the healthcare team and those close to the patient (although under current law, while relatives should be consulted, doctors have the ultimate say); and a second opinion from a senior clinician who is not already directly involved in the patient's care.
Mr Burke's solicitor, Paul Conrathe, also represents Joanna Jepson, the curate challenging the decision not to prosecute a doctor who approved the abortion of a foetus with cleft palate. "This case raises fundamental issues concerning the protection of the rights of the most vulnerable in our society," he said. "Mr Burke has a progressive degenerative condition and is frightened that his life will be ended by doctors who consider it no longer has value. The guidance issued by the General Medical Council relating to the withdrawal of artificial nutrition and hydration does not place an obligation on a doctor to seek the court's approval before withdrawing such support.
"It envisages the possibility of withdrawal of the basic necessities of life (food and water) in conditions where a patient's death is not imminent. We are concerned that Mr Burke's right to life under the European convention on human rights could be violated without the protection of due legal process."
The official solicitor, who looks after the interests of mentally incompetent adults, has been joined in the case to advise the court. The Disability Rights Commission has intervened in the case and will be putting forward legal arguments on behalf of disabled people.
"At the moment we have very clear authority from the Bland case that in the extreme cases of PVS you need to go to court," said the official solicitor, Laurence Oates. "And yet if you're comatose and unaware for other reasons there is no legal authority to say doctors must go to court."
A spokeswoman for the GMC said: "It's the first time this area of our work has been subject to judicial review. We consider, after the consultation process we have been through, that the guidance is consistent with the law."
