Girl wins right to refuse heart
A terminally ill girl has won the right to refuse treatment after a hospital ended its bid to force her to have a heart transplant.
Herefordshire Primary Care Trust (PCT) dropped a High Court case after a child protection officer said Hannah Jones was adamant she did not want surgery.
Hannah, 13, of Marden, near Hereford, said she wanted to die with dignity.
Her father Andrew said he and his wife supported her decision but they had been upset by the PCT's actions.
He said Hereford County Hospital's child protection team had contacted them in February threatening to remove Hannah from their care if they did not bring her to hospital for the operation.
The threat that somebody could come and forcibly remove your daughter from you... was quite upsetting really
Hannah, who has a hole in her heart, had been offered a transplant in July 2007 but said she did not want to go through with it after taking advice from doctors, Mr Jones said.
She said the operation might not work, and if it did work, it would be followed by constant medication.
Hannah was interviewed by the child protection officer after the trust applied for a court order in February to force the transplant.
She said she wanted to stop treatment and spend the rest of her life at home and the PCT subsequently withdrew its legal action.
Mr Jones said: "The threat that somebody could come and forcibly remove your daughter from you against her wishes, against our wishes, was quite upsetting really."
Hannah Jones decided she did not want a heart transplant
He added: "We didn't get too involved in (Hannah's) decision.
"Hannah made that decision consciously on her own, a bit like a grown up, even though she was only 12 at the time and she has maintained that decision.
"How she coped with it, what her mind was thinking at the time, I've got great admiration for her in that and, as I said, we have to support her and her decision."
Hannah previously suffered from leukaemia and her heart has been weakened by drugs she was required to take from the age of five.
Last week her father was forced to cancel plans to take her to Disneyland because he could not get insurance for her.
The family had been given the holiday to the US by the charity Caudwell Children.
Sally Stucke, a consultant paediatrician at Herefordshire Primary Care Trust, said it had been "an extremely complex case".
She added: "No one can be forced to have a heart transplant.
"We understand that the child and the family's views in relation to care and treatment might change over time as the child's condition changes.
"Any individual has the right to change their mind at any time.
"When considering whether a child is able to make a decision we would consider the age and the maturity of the child as well as the views of the family and others as appropriate.
"A child has the right to change their mind and all professionals providing support to the child and the family have to be sensitive to that."
Dr Tony Calland, chairman of the British Medical Association's ethics committee, said a child of Hannah's age was able to make an informed decision to refuse treatment.
He said the House of Lords had ruled in the 1980s that a child who understood the issues and consequences could be considered legally competent.
It followed the case of Victoria Gillick who took her health authority to court claiming she should be informed if her daughters were prescribed contraception.
It was reported that in Hannah's case, the trust intervened after a locum GP raised concerns over her with the child protection team.
Dr Calland said he understood why a doctor might have taken this action.
He said: "I think some doctors take the view that they must intervene and they are making that decision in what they see as the best interests of the patient.
"But of course best interests of patients is not just the best medical interests - it's the overall holistic interests of the person in general."
He added: "I think obviously a child of 13 with these circumstances should be perfectly capable of making the decision and particularly when supported by the parents."
Clive Lambert, headteacher at Hannah's school, St Mary's High School, in Lugwardine, said she was an intelligent girl, capable of making her own decisions.
"She has many friends at school and her presence is a source of inspiration to us all through the courage and dignity that she displays," he said.