Leslie Burke does not want to spend the rest of his life imagining a slow death by starvation. He can picture it: lying still, unable to communicate but conscious every second as his doctors let him die.
“That is, in my mind, the most inhumane way possible for someone to die,” said Burke, 45, who suffers from a degenerative brain condition that in 15 to 20 years is expected to incapacitate him, taking away his ability to speak.
Burke has launched a legal battle in Britain that has far-reaching medical and ethical implications, raising questions about patient autonomy, doctor responsibility and use of healthcare resources. He is demanding that the state give him nutrition and water by artificial means once he is no longer able to feed himself, even if the quality of his life might seem poor to an outsider.
The lawsuit plays into the worldwide debate, especially since the Terry Schiavo case in the United States, about when life should be sustained and when it can be allowed to end.
“I think the Leslie Burke case is the most important bioethical lawsuit that I’m aware of in the world today,” said Wesley J. Smith, an anti-euthanasia activist at the Discovery Institute, a conservative think tank in Seattle, who advised Schiavo’s parents before the death of the brain-damaged woman.
Burke went to court last year to object to guidelines issued by the General Medical Council, which oversees medical treatment in Britain. The council says doctors may, even against a patient’s wishes, withhold or withdraw life-prolonging treatment if they deemed a patient’s condition so severe and prognosis so poor that artificial feeding would cause more suffering than benefit.
“They tell me I’m a legally competent person to refuse [life support], but I’m not legally competent to make the decision that I don’t want the end of my life to be hastened,” Burke said. “I find that contradiction very hard to understand.”
Last year, High Court Judge James Munby sided with Burke, ruling that a patient, as long as he is competent to make decisions, should decide. When a patient is incompetent, life-prolonging treatment should be denied only if the treatment would be “intolerable” to the patient were he capable of exercising judgment. The judge ordered the medical council to revise its guidelines.
But the council appealed. And this month, Burke rolled his wheelchair back to court. During a three-day hearing, the two sides laid out their arguments before a panel of three judges in the Court of Appeal. A ruling is expected as early as next month.
In its appeal, the medical council argued that the initial ruling was too broad, saying that the judgment could be interpreted to mean that patients had the right to demand treatment doctors didn’t believe was in the patients’ best interests. Even artificial nutrition and hydration can sometimes do more harm than good, the council said.
Instead of using strict “intolerability” as a test, doctors should be allowed to reach a consensus with people close to the patient on whether withdrawal of sustenance is in a patient’s interest, it argued.
Burke’s lawyer said the guidelines contradicted the European Convention on Human Rights, which protects a person’s right to life. He said Burke did not want doctors deciding that his life was no longer worth living.
A British High Court in 1992 allowed a feeding tube to be withdrawn from Tony Bland, a soccer fan who suffered irreparable brain damage after he was crushed in an overcrowded stadium in a 1989 disaster. Since then, courts have defended the right of families to withdraw artificial nutrition and hydration in some hopeless instances.
But they have stopped short of endorsing any right to assisted suicide or euthanasia. In 2002, Diane Pretty, a terminally ill Briton, lost her battle in the European Court of Human Rights to allow her husband to help her commit suicide. On the Continent, countries such as the Netherlands and Belgium have legalized euthanasia.
For many, Burke’s lawsuit recalls the case of Schiavo, the woman in a persistent vegetative state who died March 31 after a Florida judge ordered her feeding tube removed, despite the intervention of President Bush and the U.S. Congress on behalf of Schiavo’s parents.
The Schiavo case hinged on whether she would have wanted a feeding tube. Her husband maintained that she would not have wanted her life prolonged by artificial means. Her parents said that she would have wanted to be kept alive. Terri Schiavo left no type of living will.
But in the Burke case, the patient’s wish is well known: He wants his life prolonged.
Burke was diagnosed with cerebellar ataxia when he was 23 and working as a postman. His colleagues noticed that Burke walked as if he were drunk and urged him to go to the doctor. Burke went -- taking along his clumsy younger brother -- to find out what was wrong. The two were diagnosed at the same time.
Burke now uses a wheelchair. The disease has progressed even further in Burke’s 44-year-old brother, who requires 24-hour care. In his brother, Burke sees his own future.
Disability and patients’ rights groups presented arguments in support of Burke’s case. The Disability Rights Commission, an independent body established by Parliament, argued in court that the patient should decide his own treatment.
“Our major concern is that doctors make decisions not based on clinical need but on negative, stereotypical assumptions about the quality of life of disabled people,” said Chris Benson, a lawyer for the commission.
Patient Concern, an advocacy group, also backed last year’s ruling. According to Joyce Robins, co-director of the organization, the case boils down to a power struggle.
“This is just a little shift toward patients having more power, and doctors don’t like it,” Robins said.
That’s not the case, said Sharon Burton, policy advisor for the medical council. Doctors and patients have a cooperative relationship, not an adversarial one, she said. As for the commission’s concern about discrimination against the disabled, Burton said the medical council’s guidelines already include prohibitions against discrimination.
The Department of Health, which oversees the government’s National Health Service, joined the medical council in its appeal, raising concerns about resource allocation within the healthcare system.
“The judgment is not clearly limited to artificial nutrition and hydration,” Health Minister Rosie Winterton said in a statement. “It can be read as giving patients the right to demand any life-prolonging treatment they wish, no matter how untested, inappropriate or expensive.”
But some say resources should not be a central issue.
Among the spectators at Burke’s appeal was Michael Hutchinson, who was worried about the future of his 16-year-old brain-damaged daughter. Hutchinson said he feared that someday, doctors would decide his daughter’s life was not worth living and refuse to provide her care.
“It’s the start of a slippery slope, I think, if you say, ‘Well, this particular person’s life is really not that valuable,’ ” he said. “Leslie Burke is very clear in his particular wishes. Why shouldn’t those wishes be listened to?”