DOCTORS caring for a terminally ill boy have told his parents that they may refuse him as a patient if a court denies them the right to switch off his life support.

The care required to keep the 18-month-old alive is unethical and should never have been offered, said one consultant.

The warning has intensified fears among parents of similarly ill children that doctors will use the case as an excuse to refuse treatment in the future.

The boy, identified only as “MB”, has the most severe form of spinal muscular atrophy and is expected to die if his ventilator is turned off.

He has been kept alive with artificial ventilation since he was three months old and for the past six months has been attached to a life-support machine. He has needed emergency treatment at least eight times. The boy, whose parents pleaded with a court this week to ensure that his life support continues, is almost completely paralysed and unable to communicate with doctors and nurses.

Doctors believe that the pain, discomfort and distress caused by his treatment, including frequent suction-cleaning of his air passage, significantly outweigh any pleasure he may gain from the company of his parents or from television.

The judge assessing the application by the hospital for permission to switch off the ventilator has been told that doctors are so convinced it is wrong to keep the child alive that they may refuse him as a patient.

Such a move would have to be taken by each doctor and nurse as a personal decision and, according to the General Medical Council’s guidelines, they would have to ensure suitable staff could stand in.

The judge is expected to make a decision on Wednesday. One of the doctors treating the boy said he doubted that he could continue treating him if the judge ordered the life support to be kept on. “I think there’s a consensus that children (like this) shouldn’t be ventilated and life shouldn’t be prolonged,” he said.

Anita Macaulay, chief executive of the Jennifer Trust for Spinal Muscular Atrophy, whose daughter died from the condition, said the case had sent a chill through its membership.

“If the MB case goes the wrong way and the parents lose, then the next time they or their child are rushed into hospital with pneumonia, are they going to get switched off too?” She regretted that the hospital’s name and location cannot be named, to protect the identity of the child.

Ms Macaulay added: “The saddest thing is that after this is all over, the lawyers, judges and doctors will all return to their normal lives whilst the parents of baby MB will have to live with whatever the outcome for the rest of theirs.”

MEDICAL OPINION

Michael Wilks, chairman of the BMA’s Medical Ethics Committee:

Withdrawing treatment would be the best outcome. If your treatment is of no marginal benefit, you have a duty to ask: “Should we do it?” It’s not the doctor killing the child, it’s the child’s medical condition killing the child. It would be ridiculous for clinical judgment to be fettered by the notion that parental wishes should override the doctors’ opinion.

Andrew Whitelaw, Professor of Neonatal Medicine, Bristol University:

You have to give the child a chance. If I were the judge, I would focus on going to see the child to observe its quality of life for myself.

The paediatricians have to get over to the parents the fact that this is a condition that never gets better, so that they can start to say goodbye.

If you are just prolonging the inevitable death by using uncomfortable and stressful measures, most people would say you are doing the baby a favour by stopping ventilation.

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