Life-support refusal ‘unusual’

‘The patients have the right to direct treatment, but ultimately the doctor has to do what is in the best interest of the patient, and sometimes these are at odds.’ Medical Association chairman Stephen Child

THE decision to refuse life support to a severely disabled Wellington boy is unusual and premature, a medical legal expert says.

William Burton was just three months old when he was left severely disabled by a bout of meningitis that was twice misdiagnosed by junior doctors at Wellington Hospital in 2013.

Now 2, he is blind, deaf, has no control of his limbs, and has spent his short life in and out of hospital with respiratory infections.

Last month, his family say they were told by Wellington Hospital that the next time William was admitted with a respiratory illness he would not be offered a mechanical ventilator to keep him alive.

He had just recovered from his fifth, and most serious, hospital stint, kept alive for a week with the help of a ventilator.

In a letter supporting the decision, Starship children’s hospital said most children with William’s disabilities died from respiratory failure. The illness would get worse, and keeping him alive mechanically would ‘‘prolong his death and potentially subject him and his family to prolonged suffering’’.

‘‘The burden of treatment outweighs any ephemeral and declining benefits mechanical ventilation offers, and is therefore not appropriate to offer in the future.’’

William’s parents, Derek and Wendy Burton, are not happy with the decision and have vowed to fight it, through legal means if necessary.

It was difficult to comprehend how a treatment option that had saved William’s life was no longer ‘‘appropriate’’, his father said.

‘‘Having that backstop pulled out from underneath us is extremely difficult.’’

Medical legal expert Professor Mark Henaghan, of Otago University, said it was common for families to agree to withdraw life support when a patient had no hope of recovery. But doctors deciding not to offer life support at all, particularly when it had just saved William’s life from a similar ailment, was premature.

‘‘It seems a bit early to be not even considering life support.’’

If the family were unhappy with the decision, they could challenge it through the courts, but the courts rarely compelled doctors to offer treatment, he said.

Medical Association chairman Stephen Child said doctors were obliged to focus on the best possible health outcome for patients, sometimes in defiance of a family’s or patient’s wishes.

‘‘The patients have the right to direct treatment, but ultimately the doctor has to do what is in the best interest of the patient, and sometimes these are at odds.’’

This could extend to refusing to undertake treatments considered ‘‘futile’’ in the face of death, or likely to cause the patient to suffer without hope of recovery. Among these ‘‘futile’’ treatments is life support for patients who had suffered a heart failure after contracting pneumonia, an illness that has stricken William and is most likely eventually to kill him.

However, denying life support to a child in advance, and after previously providing it for the same illness, was a ‘‘slightly more grey zone’’, Child said. ‘‘That is an extremely difficult position. At what point do you draw the line?’’

Children’s Commissioner Russell Wills, a paediatrician, said ‘‘advance care plans’’ for children with ‘‘life-limiting’’ conditions were not unusual. They were about doctors, the child and families planning for an illness from which the child could not recover.

The alternative would be to place a child indefinitely on life support with no hope of recovery, and the parents agonising over whether and when to turn it off. ‘‘That is the worst position in the world.’’