British Teenager Wins Right To Refuse Heart Transplant

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Main Category: Pediatrics / Children's Health
Also Included In: Medical Malpractice / Litigation;  Primary Care / General Practice;  Cardiovascular / Cardiology
Article Date: 11 Nov 2008 - 10:00 PST

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Hannah Jones, a terminally ill 13-year old British schoolgirl who has a hole in her heart, has won the right to refuse treatment after Herefordshire Primary Care Trust (PCT) dropped a High Court case to force her to have a heart transplant. Hannah, who lives with her parents in Marden near Hereford, said she had had enough of medical treatment and wanted to die at home, with dignity.

The PCT dropped the case after a child protection officer who interviewed Hannah said she was adamant about her decision to refuse surgery. Her parents Andrew, a 43-year old auditor, and Kirsty, a 42-year old intensive care nurse, said they supported Hannah's decision and were very upset by the PCT's decision in February to pursue a court case, said a report in the Daily Mail on Tuesday.

Hannah's hole in the heart was caused by the strong drugs she had to take from the age of five to treat a rare form of leukemia, said the newspaper report.

The teenager was fitted with a pacemaker last year when she spent seven months in hospital. She is also on a range of drugs.

Her father told the media that a child protection team from Hereford County Hospital had contacted the family last week threatening forcibly to remove Hannah if they did not take her to the hospital to have the operation. He told the BBC that:

"The threat that somebody could come and forcibly remove your daughter from you against her wishes, against our wishes, was quite upsetting really."

Hannah said she was willing to take the chance that she might or might not be OK. She said she "didn't want to go through any more operations" and understood that her decision may result in her death.

Her doctors had insisted she have the operation, even though there was risk that it might kill her. But Hannah said she would refuse to let them operate.

Jones said his daughter was offered a transplant in July 2007 but after talking to her consultants at Great Ormond Street Hospital in London and Birmingham Children's Hospital, she said she did not want it: it might work or it might not, and if it did she would be on medication all the time. She had been in and out of hospital all her life and had had enough.

Hannah decided she would rather go back home and be with her mother and father, her 11-year old brother Oliver and her two sisters, Lucy, ten and Phoebe, four. She would be cared for by her mother.

Her father said she had made the decision on her own, like a grown up, although she was only 12 at the time, and she has stuck to it. He said he greatly admired his daughter and could not imagine what was going through her mind as she considered her decision. He said he and his wife fully supported their daughter's decision.

Hannah told the BBC that hospitals held bad memories for her and she didn't want any more treatment.

The family were given a holiday in Disneyland in the US by the by the charity Caudwell Children, but they had to cancel it because they couldn't get insurance.

Chris Bull, the Chief Executive of Herefordshire Primary Care Trust, wrote to the Jones family explaining that the Trust had decided not to pursue a court order because it was "not appropriate". He wrote that Hannah appeared to understand the seriousness of her condition and that she was aware she could die.

The chairman of the British Medical Association's ethics committee, Dr Tony Calland, told the BBC that children of Hannah's age were able to make informed decisions about whether to refuse treatment. A ruling in the House of Lords in the 1980s said that a child who understood the issues and consequences was considered legally competent.

Hannah's head teacher, Clive Lambert of St Mary's High School in Lugwardine, said Hannah was intelligent and capable of deciding for herself. She had many friends at school and her courage and dignity was an inspiration to everyone there, he said.

Sources: BBC News, Daily Mail.

Written by: Catharine Paddock, PhD
Copyright: Medical News Today
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