Leslie Burke knows that one day in the not too distant future he will present his family and his doctors with an impossible dilemma. They will have to decide whether the quality of his life has become so poor that it is no longer worth preserving.
Mr Burke, 44, a former postman from Lancaster is suffering from a degenerative brain condition and has been given less than 20 years to live. But the decision on whether he lives or dies is one that he believes only he should be permitted to make.
In a test case hearing today, he will argue his life is so precious to him that there is no point when it should ever become necessary for the medical profession to intervene and let him die. It is a legal action that could have far-reaching implications for thousands of other people whose lives will eventually become dependent on artificial nutrition.
Mr Burke is being supported by anti-euthanasia campaigners who say it is the first "right-to- life" case of its kind. It follows a succession of high-profile, "right-to-die" cases in which lawyers have argued that doctors should be allowed to do more to help patients die with dignity.
Yesterday, on the eve of his court appearance in the High Court in London he told The Independent why he hoped his action would eventually change the guidance given to doctors.
"What I am frightened of most is that there will come a time when I have lost the capacity to communicate but am aware that the hospital has decided to stop feeding me," he said. "Once they withdraw artificial nutrition it will take between two and three weeks for me to die. I will be lying there in great distress but unable to tell any one that I want to live."
Mr Burke, who was diagnosed with cerebellar ataxia in 1983, is using the Human Rights Act to challenge the criteria upon which doctors decide when to remove artificial nutrition from patients.
His judicial review has also attracted the attention of the Disability Rights Commission (DRC) which has joined the action as an interested party. A DRC spokeswoman said: "We believe the General Medical Council's guidelines on withholding and withdrawing life prolonging treatment must be changed to reflect the view of Mr Burke and other disabled people."
In particular, the DCR wants to remove "quality of life" factors that they say currently influence whether treatment is withdrawn. The spokeswoman added: "The DRC believes these factors are subjective and may reflect a doctor's personal opinion about the quality of life of a disabled person. There should be a much higher threshold in place to be used when a decision is made whether to withdraw treatment from a person. This test is currently applied by the courts, and is known as the 'intolerability test'."
In recent years, Mr Burke's condition has deteriorated, affecting his speech and movement. He is now confined to a wheelchair. His older brother, Robert, has the same condition but is in a much more advanced stage, requiring 24-hour care.
"My brother will experience what I will go through first," said Mr Burke, who lives at home with his brother and his mother. "It will be very difficult if I have to watch him suffer without being able to do anything."
Mr Burke can see no reason why there should ever come a time when doctors need to unnaturally end either his or his brother's lives. "Why should it be that someone needs to decide whether to put me to death? I know that I may only be able to communicate by using by eyebrows, one movement for yes and two for no. After that I may not be impossible for me to communicate."
Under the current law Mr Burke can set out his wishes in a living will or advance statement of which doctors have a duty to take account. But he says: "Why should I have to write out a medical will in order to opt in to medical treatment? It should be the duty of the hospital to provide it."
His lawyers will argue that the right to life under the Human Rights Act means that the guidelines published by the GMC should be redrafted so that doctors consider these cases in terms of a much stronger presumption in favour of life.
The guidelines were published in 2002 after the start of the Diane Pretty case and followed extensive consultation with patient groups and medical, legal, religious, human rights and ethical experts.
Groups such as Alert, which defends vulnerable patients' right to live, believe the pendulum has swung too far in favour of arguments raised by the pro-euthanasia lobby. It says there is a real "danger that some disabled people's lives will be seen by doctors as less tenable than everyone else's."
GMC guidance makes it clear that doctors can only withdraw food and water from patients unable to give their consent. They should receive a second opinion from a senior clinician who is not directly involved in the care and must also consult the patient's family although the doctors will have the ultimate say.
Ruth Evans, Chairman of the GMC's Standards Committee said, "This is an exceptionally difficult area of decision making, and one in which the law is still developing. For this reason, we welcome the forthcoming court case as an opportunity for further clarification of the law."Reuse content