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Neon Roberts

Most of you should have read about the case of Neon Roberts who has a brain tumour [medulloblastoma]. He had surgery in October and was due to have chemotherapy and radiotherapy. However his mother went missing with Neon after his initial surgery because she did not want him to have radiotherapy. She said that this would ‘fry his brain’ and that she was told that it would be likely to have a permanent effect on his IQ. She instead wished to try alternative therapies. She and Neon were found and Neon had a further scan that seems to indicate re growth of the tumour and it was been advised that he has an immediate operation. Again Neon Robert’s mother refused so the case went to court.   The Judge on listening to all the evidence presented by both sides ruled that Neon should receive the operation.

Children and consent;This case raises ethical issues of consent and autonomy. Adults have autonomy and the right to make bad decisions for themselves. Steve Jobs of Apple refused to have surgery for his pancreatic cancer when it was first diagnosed, preferring macrobiotics and positive thinking despite the pleas from his doctors and family to have the standard conventional treatment [he later fully embraced what ever medicine could offer him and underwent two liver transplants]. Seven year old children do not have autonomy so usually their parents are regarded as being guardians of their best interests. However when this seems not to be the case, doctors/hospitals can apply to court and the child can be made a ‘ward of court’ and decide what is in the child’s best interest. The court has to decide what would be in the child’s best general interest not necessarily the child’s medical best interest.  So this is usually only done for severe life threatening illnesses. For example I know of a case of a Jehovah‘s witness boy who was recommended a blood transfusion but whose parents refused it. The boy was instead given iron injections [which are notoriously painful] over several months  because although a transfusion was in the boy’s medical best interest it was thought that this would endanger how his parents felt about him and injections would be in his overall best interest.

Medical uncertainty.Patients always want clear facts when weighing up the pros and cons of treatment. However this is extremely hard to do. Doctors try and talk about percentage risks but what that means for the individual patient is something they do not know and it is hard to explain that to parents. In this case doctors stated that it was thought that further surgery carried a 10 – 25% chance that Neon would be left so brain damaged that he would be unable to speak. There was an average drop of 15 IQ points after radiotherapy – but that is average; some would be better off, some worse off. What the treatments actually mean for Neon is uncertain. Mrs Roberts also pointed out that some of the figures used are also based on extrapolation from research in the 1940’s  and surgery and radiotherapy have advanced since then. At the end of the case the judge summed up saying

 Putting all those risks in the balance against the expected gains, in the unhappy position he now finds himself, I am quite satisfied that surgery is in his best interests.’    

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