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Thirteen-year-old British girl allowed to refuse heart transplant

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Tue Nov 11, 1:05 PM

By Jennifer Quinn, The Associated Press

LONDON - A 13-year-old British girl who has undergone nearly a dozen surgeries in her young life has refused a heart transplant operation - a decision that may ultimately lead to her death.

Hannah Jones, who was diagnosed with leukemia and later a heart condition, told her parents and medical authorities that she would rather spend her remaining time at home than in the hospital. Health authorities have ceded to the decision after interviewing the girl.

"I've been in hospital too much - I've had too much trauma," Hannah Jones told Sky News on Tuesday. "I don't want this, and it's my choice not to have it."

Hannah was diagnosed with leukemia when she was four years old. Chemotherapy put her into remission but doctors then discovered she had cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails.

The girl's story surfaced when parents complained about hospital officials who sent a social worker to interview the girl about her choice.

The family received a telephone call saying the hospital would take legal action if they didn't bring Hannah to hospital, said her mother, Kirsty Jones.

"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," she said.

Hospital officials said it is standard procedure to make sure both the child and their parents understand the consequences of any medical 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 added.

Dr. Tony Calland, who chairs the British Medical Association's medical ethics committee, told BBC radio that a 13-year-old like Hannah, supported by her parents, should be "perfectly capable" of making such a decision.

"Decisions to refuse life-prolonging treatment are always extremely difficult and emotive," he said. "What is paramount is that decisions are made in the best interests of the patient. Where consensus cannot be reached between doctors, patients and family, then it is only appropriate that the courts intervene to act in the best interests of the patient."

Dr. John Jenkins, a pediatrician and chairman of Britain's General Medical Council standards and ethics committee, said children who have lengthy illnesses become "experts in their own condition quite early in life."

Heart transplants are risky operations on any patient - and those risks increase with young people who have additional conditions like Hannah's leukemia.

The transplants often require patients to be on lifelong anti-rejection medication to prevent their body from attacking their new heart. The medicines often have side-effects, which make the body more susceptible to dangerous infections.

"I just decided there were too many risks, and even if I took it there might be a bad outcome," Hannah said. "There is a chance that I may be OK, and there's a chance that I may not be as well as I could be, but I'm willing to take that chance."

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Do you think children should have the decision to refuse life saving treatment?

Should parents be able to say enough is enough and decide that ending treatment is the best route even if it will result in death?

[scribble]

There's no yes or no answer to that. I feel she made the right decision for herself, and is competent to make that decision.

In most staes, a pregnant teenager is considered "Emancipated" and able to make her own health decisions without parental consent. I think a teenager who has been chronically ill and has faced death several times already has earned the right to make major decisions.

[BCoFD vollie]

As long as the parents are on board with the decision I have no problems with this. All of our patients have the right to refuse further care as long as they have been informed of the risks of doing so, and it seems that this girl and her parents did exactly that.

[FF/EMTP1317]

I think that her parents should definitely take her feelings into consideration but she's not 18 and therefore not old enough to make her own decisions. I definitely don't agree with the hospital forcing her parents to bring her in.

[strwblue]

First I can not image not supporting my 15 year old daughters choice. That being said I would also make sure that some who was qualified (and outside of the family) help her to be sure of her choice and what the potential result of that choice was. I applaud the hospital for it due dilagence (sp). There are some misguided parents in this world. You can never be to careful when it comes to the welfare of children.

If any of that made sense

[SARPUP]

We all know when we've had enough. If this young lady who has been through and awful lot has said she's done and wants to be at home then thats her decision. As a parent before I would let my child say that I would have them talk to thier pastor and some family so they get everyones side. If they still want to go home and call it quits then I would support that decision. Believe me it would kill me but if that is what my child wants that is what I would give my child, because they ultimately are the one in pain. My pain would be emotional not physical.