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1           RIGHT TO LIVE — L. Burke, 44, is terminally ill. He has asked a court for the right to live. 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. Burke was a postman, diagnosed with cerebellar ataxia in 1983, a degenerative brain condition; he has been given less than 20 years to live. But whether he lives or dies is a decision he believes only he should be permitted to make. He argued that 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. Burke is being supported by anti-euthanasia groups who say it is the first “right-to-life” case of its kind. He hopes his action will 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 2 & 3 weeks for me to die. I will be lying there in great distress but unable to tell any one that I want to live.” He 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 attracted the attention of the Disability Rights Commission (DRC) which joined 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In particular, the DCR wants to remove “quality of life” factors that they say currently influence whether treatment is withdrawn. In recent years, Burke’s condition has deteriorated, affecting his speech and movement. He is now confined to a wheelchair. His older brother has the same condition but requires 24-hour care. 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. His lawyers will argue that the right to life under the Human Rights Act means that the guidelines published by the GMC in 2002 should be redrafted so that doctors consider these cases
in terms of a much stronger presumption in favor of life. Bill Leach, 82, of Langley, a WW II veteran and former Slough factory worker, also suffers from cerebral ataxia which follows a course similar to multiple sclerosis. He has given his full support to Burke. [26Feb04  Independent Digital (UK) Ltd]