A Minnesota family's decision to stop medical treatment of their son has erupted into a public battle over the rights of disabled people in the United States. Jamie Butcher was 17 when a car crash left him unconscious in October 1977. Five years later Ronald Cranford, a neurologist from Minneapolis, diagnosed Jamie as being in a persistent vegetative state.
The Butcher family continued to care for Jamie, first for seven years at home and then in a nursing home. This year, almost 17 years after the accident, his mother, Pattie Butcher, announced that the family had decided that Jamie would never regain consciousness, and they asked doctors to remove his feeding tube.
The family contacted Dr Cranford, an expert in the persistent vegetative state, and went through standard procedures to assess whether this was the best course of action for Jamie. The procedures included a neurological re-evaluation, consultation with an ethics committee, and further family discussions. Unlike many states, Minnesota generally leaves patients, families, and their doctors to decide when to withdraw treatment.
Dr Cranford said that he had no reason to think that Jamie's case would cause a legal problem. But the local prosecutor was concerned about a state law that was designed to protect the rights of so called "vulnerable adults"--those who might be unfairly treated because of some disability. The courts quickly decided that because Jamie was in a persistent vegetative state he could not be classed as vulnerable and that he had loving parents to protect him.
But at the last minute two groups that represent disabled patients asked the courts to reconsider and to appoint an unrelated guardian to represent Jamie's "best interests." The state court may rule this week, and Dr Cranford is confident that the family's wishes will prevail. But he and others fear that the case may be the first of many. "These 'pro-life' advocates have been losing ground in the US Supreme Court on the abortion issue, so what we're seeing is a turn toward more violence, such as the murder of two doctors at a Florida abortion clinic and cases like this one, involving decisions at the other end of life," said Dr Cranford.
Jane Hoyt, the leader of those groups opposing the withdrawal of treatment, says that patients in a persistent vegetative state are vulnerable and that suffering families may not be the best people to decide what is in these patients' best interests.
About 14 000 Americans are believed to exist in a persistent vegetative state. Federal courts have given each state the power to choose its own course regarding these patients, and many have chosen to make it difficult for families to stop medical treatments. It was thus ironic that Minnesota, considered to be one of the most liberal states, found itself in a legal bind over a law meant to protect vulnerable patients (such as those who are mentally ill) and to ensure them "food, shelter, clothing, and health care."
A similar law exists at federal level: the Americans with Disabilities Act, which ensures that disabled people will not be "unfairly discriminated against." Legal experts disagree about definitions, but many say that "disabled" means to have limits, and that a person has to have some awareness of those limits to qualify as being disabled. Patients in a persistent vegetative state have no awareness.
"It is these well-meaning laws that now are being turned around and misapplied in the courts by the 'pro-lifers,'" said Dr Cranford. He said that these patients did not have "interests" to protect since they had no working cerebral cortex.
Most of them had families who were willing to make painful decisions quietly among themselves. "But now they are being thrust into the public and legal arenas by 'pro-life' lawyers and advocates," he said. Although only a handful of cases have arisen similar to Jamie Butcher's, Dr Cranford expects many more.