Why children have a say over care

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By Nick Triggle Health reporter, BBC News Patients have a right to decide over their treatmentShe may only be 13, but terminally-ill Hannah Jones still has the right to have a say over her treatment.

The Herefordshire teenager turned down a potentially life-saving heart transplant after deciding she had had enough of medical help after spending the previous eight years in-and-out of hospital battling leukaemia and heart problems.

It has been reported the decision led to doctors raising the alarm and authorities getting involved to see if she should be taken into care so she could undergo the transplant.

But after speaking to her and her family, it was ruled her decision should be respected.

While it has been dubbed a right-to-die case, it is in fact more to do with the right to refuse treatment.

Parents

Dr Tony Calland, chairman of the British Medical Association's ethics committee, said: "It is a long established principle that patients can decide over their treatment.

"Obviously, it gets more complicated when a child is involved so it is perfectly understandable that the authorities got involved.

"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."

When it comes to children, the Victoria Gillick case from the mid 1980s is often cited.

In this case it seems it is a perfectly reasonable judgement to have a look into it Tony Calland, of the British Medical Association

It involved a legal challenge by a mother-of-10 who fought against health rules saying children under 16 could get sex advice and be prescribed contraception by doctors.

This set a precedent that children could have a say over their treatment at the hands of the NHS.

And since then doctors have generally worked on the principle that the closer a child gets to 16, the more the wishes of children should be taken into account alongside those of the parents.

However, that does vary depending on the circumstances.

For example, if it was a simple case of whether to have stitches or not the child's wishes would carry more weight than whether it was more complex treatment.

Official guidance from the General Medical Council reflects this.

John Jenkins, who is a paediatrician and chairman of the GMC's standards and ethics committee, said doctors can face "real dilemmas" in such cases.

"We say to doctors that you have to make a judgement about whether they have the ability and maturity to weigh up the risks and understand what is happening.

"What we find is that children, when they have been having treatment for many years, are often experts in their own condition.

"And with complex cases, where the treatment outcomes are uncertain, the doctor is much more willing to listen."