Sky News
Hannah Jones with her family.

British Court Allows Terminally Ill Teen to Refuse Heart Transplant

November 12, 2008 01:04 PM
by Emily Coakley
A 13-year-old girl has refused a heart transplant in England, raising questions about the role of children in their own medical care.

Refusal Led to Legal Intervention

Hannah Jones, 13, has chosen a course that doctors fear will leave her with little time to live, but she and her family insist that it’s her choice.

Hannah’s heart was weakened by medication she took to fight an infection. She was diagnosed with leukemia at age 4 and has spent much of her life undergoing medical treatments.

In February the Primary Care Trust told her parents that their daughter could be removed from her home if they didn’t “bring her to hospital for the operation,” the BBC reported. The PCT also went to court for an order to require the surgery.

Hannah was able to convince a child protection officer that she should be allowed to refuse treatment.

In an interview with Sky News, Hannah explained why she refused the transplant.

“I’ve been in hospital too much. I’ve had too much trauma. There’s not a month or year that goes by where I have not had medical treatment. I didn’t want to go through any more operations. I didn’t want this and it’s not my choice to have it. There’s a chance I may be well and there’s a chance I may not be as well as I could be. That’s a chance I’m willing to take.”

Her options are bleak: surgery carries a risk of death, and the medications she would have to take after a transplant could allow her leukemia to return, Sky News said. But not having the surgery could mean she has less than a year to live.

Related Topic: Refusing cancer treatment

Other places have taken steps aimed to prevent some teens from facing situations similar to Hannah’s. Last year, Virginia enacted “Abraham’s Law,” allowing children 14 years and older and their parents to refuse medical care, reported the Associated Press. The law was named for Starchild Abraham Cherrix, who in 2006 went to court over his refusal of chemotherapy for his lymphoma.

Cherrix turned 18 in June, and told The Virginian-Pilot newspaper that his latest test results showed no signs of cancer. After a court battle, Cherrix and his family agreed to be treated by a Mississippi doctor who used a combination of radiation therapy and “immunotherapy, in which supplements and medicines are used to bolster the immune system,” the paper said.

Opinion & Analysis: Children making impossible decisions

Hannah’s decision has led to a great deal of discussion over the ethics of allowing a minor to refuse life-saving treatment. Many have said that the decision was Hannah’s to make, and that children facing such a choice are better equipped to deal with it than might be expected.  

“Children who have had years of medical treatment have grown up much more quickly than a lot of children. Often adults don’t understand those children’s level of understanding,” said Anne Harris of Rainbow Trust, an organization that helps seriously ill kids, in an interview with The Guardian.

Priscilla Alderson, who studies children who deal with health problems, pointed out another facet of the transplant question. She called it “pointless” when so many people are waiting for transplants, to force someone to have one, The Guardian said.

The chairman of the British Medical Association’s ethics committee said it was understandable, though, that the doctors got the courts involved in this case.

Tony Calland told the BBC: “They would have wanted to make sure that the child was making the decision for her own reasons and not just influenced by the parents. Once that had been established, I don’t think any consideration would have been given to taking the case to court with both the child and parents not wanting the treatment. Heart transplants can be successful, but do carry risks.”

According to the BBC, in the 1980s, a court case over a woman who didn’t want her daughters to receive contraception set a precedent that children had a say in how the National Health Service cares for them.

Reference: Leukemia Web Guide


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