No new heart
LONDON — Hannah Jones, 13, is not afraid of dying — she is afraid of spending her remaining days in a hospital bed.
In a case that raises a host of medical and ethical issues, the British teenager from a small town northwest of London has won a battle to refuse a heart transplant operation.
That decision by British medical authorities has ignited a debate over whether children should have the right to refuse potentially lifesaving medical treatments or if health authorities have an obligation to intervene.
Hannah, from Marden, was diagnosed with leukemia at age 4. Doctors later found a heart defect. In eight years, she has had chemotherapy and nearly a dozen operations.
"I've been in hospital too much — I've had too much trauma," she told Sky News on Tuesday. Hannah's story surfaced when her parents complained about medical officials who threatened to force her into a hospital.
"They phoned us on a Friday evening and said that if we didn't take her in they'd come and take her. We still refused to take her," said her mother, Kirsty Jones.
A social worker was then sent to interview the teenager about her refusal to have a heart transplant to treat her cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails. The social worker backed Hannah's decision.
Hospital officials said it is standard procedure to make sure both the child and the parents understand the consequences of any decision.
"Clearly the welfare of the child is paramount," said Sally Stucke, a pediatrician with the Herefordshire Primary Care Trust where Hannah was receiving treatment. "Pediatricians will always consider the child's best interests at all times and this would include the child's medical, emotional and psychological well-being."
"No one can be forced to have a heart transplant," she said. In Britain, children younger than 16 aren't automatically considered legally competent to make decisions about their health care. Still, British courts have said that a child's decision can be valid if they have "sufficient understanding and intelligence to enable him or her to understand fully what is proposed."
