Baby's case fuels medical treatment debate in Britain

LONDON -- Born prematurely at 26 weeks, weighing just one pound, 11-month-old Charlotte Wyatt has never left the hospital. She suffers from chronic respiratory and heart problems and severe brain damage. A feeding tube and a constant supply of oxygen help keep her alive.

She has been resuscitated three times by doctors at the Portsmouth Hospital Trust, who believe she feels nothing but pain and who have asked a judge to prevent further attempts to save her life. The court agreed this month, despite arguments from her parents, devout Christians, that their daughter should be given every opportunity to survive.

The highly publicized case of Baby Charlotte is fueling debate in Britain over the rights of patients and their families to decide on medical treatment, after a judge found that "any further aggressive treatment, even if necessary to prolong life," was not in the baby's best interests.

The decision inspired immediate backlash. Newspaper columnist Tom Utley wrote in the Daily Telegraph: "I see great dangers in the judge's decision to overrule Charlotte's parents and allow her doctors to let her die. Rightly or wrongly, it will be seen to have established the principle in English law that some lives are worth saving, and others aren't."

But many members of Britain's medical community say that prolonging life is not always in the best interests of patients. "Medical technologies have enabled doctors to prolong life," says Franca Tranza, spokeswoman for the British Medical Association. But "the role of medicine is not simply to keep people alive, but to work for their benefit."

A number of cases like Charlotte's, as well as legislative proposals in Parliament, are forcing Britons to grapple with how the country's government-run National Health Service should treat the terminally ill at the end of life and severely ill patients like Charlotte at the beginning.

The Liverpool Hospital Trust announced last week that a disagreement with the mother of 9-month-old Luke Winston-Jones over future treatment will require judicial intervention. Luke was born with the rare genetic disease Edwards Syndrome and three holes in his heart. While his mother wishes to continue treatment, the hospital argues that further aggressive therapy would not be in Luke's best interest.

Meanwhile, a court ruling last July regarding the future care of 44-year-old Leslie Burke found in favor of continued treatment, further complicating the issue in Britain. Burke suffers from the degenerative brain disease cerebellar ataxia and will eventually lose the ability to swallow and communicate, requiring artificial nutrition and hydration.

Fearing that doctors would withhold those life-saving treatments -- General Medical Council guidelines state that artificial nutrition or hydration may be withdrawn if doctors feel they are "too burdensome in relation to the possible benefits" -- Burke went to the High Court for the right to determine his future treatment.

The presiding judge ruled that doctors cannot withhold artificial nutrition or hydration from any patient who requests it or leaves instructions asking for it. The judge said: "The choice of medical treatment -- the choice of how we are to live and how we are to die -- should be left to the individual. . . . [Burke] does not want a decision to be taken by doctors that his life is no longer worth living."

Julia Millington, political director of Britain's Pro-Life Alliance, agrees. Withholding artificial nutrition, she said, is "euthanasia by omission."

"The intention is to kill the patient through starvation," she said.

The medical community has reacted with dismay to the Burke ruling. Dr. Michael Wilks, head of the ethics committee of the British Medical Association, told the Independent newspaper that "this has huge and worrying implications for how we weigh clinical judgment against the wishes of the patient."

"Doctors shouldn't continue treatment past the point where it is beneficial," he said. The Council has appealed the decision.

Medical specialists deny there is any connection between end-of-life treatment decisions and the scarce resources of an over-burdened national health system, and thus far there has been no political backlash against Prime Minister Tony Blair's government.

Yet the spate of cases suggest an emerging desire in Britain for patient control over treatment. While doctors in Britain can withhold or withdraw treatment if they feel it's in the patient's best interests, patients are lobbying for legislation and guidelines that increase their power over medical treatment. The Mental Capacity Bill, introduced in Parliament in June, would allow for advance directives like living wills -- which let individuals express their wishes for future medical treatment, -- and the designation of decision-making proxies.

Jane O'Brien, head of standards for Britain's General Medical Council, said there is no framework for deciding what "best interests" means. The proposed legislation, which Parliament is expected to pass, would be the first comprehensive legislation in Britain on advance directives after decades of piecemeal regulations.

In contrast, all 50 states in the United States have adopted some form of advance directive legislation. In 1991, Congress enacted the Patient Self-Determination Act, which required all hospitals receiving Medicaid or Medicare funds to determine whether patients had or desired such directives.

More controversial in Britain is the Assisted Dying for the Terminally Ill bill, currently in a House of Lords select committee. The bill would allow physicians to help terminally ill patients who are "suffering unbearably" to commit suicide.

While the Church of England believes that treatment can be withheld or withdrawn from a dying patient if it is too painful or intrusive, it draws the line at assisted suicide. In September, Anglican and Catholic bishops sent a joint letter to the House of Lords in which they argued that euthanasia "would risk a gradual erosion of values in which, over time, the cold calculation of costs of caring properly for the ill and the old would loom large."

"As a result many who are ill or dying would feel a burden to others," the letter said. "The right to die would become the duty to die."

Other European countries have grappled with euthanasia. In 2001, the Netherlands became the first country in the world to legalize voluntary assisted suicide for the terminally ill. Belgium did so in 2002.

"Patients are becoming less meek," O'Brien said. "We understand that some members of the public are concerned about having treatment withdrawn, but there are another group of people who are worried about being treated right up to the end."