Right-to-life boy 'has an intolerable existence'

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The Independent Online

A 17-month-old boy at the heart of a landmark right-to-life case has an intolerable existence and should be allowed to die, the High Court was told.

Doctors treating the boy want the right to switch off the ventilator that is keeping him alive, arguing that he is being subjected to "a wealth of discomfort and pain". But the child's parents have refused to agree to the withdrawal of treatment, claiming that their son derives enjoyment from their visits and should undergo surgery that could prolong his life. They are due to give evidence today.

The case is believed to be the first time that doctors have asked for permission to withdraw ventilation from a patient who is not in a persistent vegetative state.

The boy, known only as MB for legal reasons, was born with spinal muscular atrophy, an incurable and degenerative muscle-wasting condition which eventually causes paralysis. He cannot speak, chew, swallow or breathe on his own, and is fed through a tube. He is not believed to be mentally impaired, but can move his eyebrows, feet and fingers only slightly.

Giving evidence before Mr Justice Holman yesterday, one of the boy's doctors, known only as Dr S to protect his identity, said that MB would soon not even be able to open his eyelids.

Dr S said: "One has to consider his inability to move and his inability to communicate effectively, his inability to express his wishes, his inability to show if he is in any pain or distress or, if he is, what is causing that. The cumulative effect of all of that is that he has an intolerable life." He added that it was impossible to know whether the pain relief given to the boy was sufficient unless he was almost permanently sedated, which the doctor considered unethical.

Another doctor, known only as S, said he did not believe MB had normal cognitive functions but that was impossible to assess because of the boy's inability to respond. The expert said: "For me, the worst possible scenario in the situation our patient is in would be if his cognitive function was completely normal." It would be "quite horrible", he said, to think that M B was aware of all that was happening.

He added: "I have to ask myself, are the potential good things, the potential benefits, are they strong enough, do they outweigh the potential problems, the potential pain and potential discomfort of what we or I am causing with my actions?

"I have come to the conclusion that they probably do not, because there is such a wealth of discomfort and potential pain we are causing him." The doctor said that the boy would die within minutes of ventilation being withdrawn.

Asked by the judge how he would feel about ventilation continuing, the doctor said: "If you ask me personally whether I could continue it ... I would find it difficult, because I have been feeling that what I have been doing as a doctor has been wrong for many months."