Views of terminally-ill children should be heard: new UK guidelines

[March 24, 2015]  By Kate Kelland

LONDON (Reuters) - Britain issued new guidance on Tuesday for doctors treating severely or terminally ill children, strongly advising that children's own views on whether they want to live or die should be taken into account.

The guidelines, from Britain's Royal College of Paediatrics and Child health, will be watched carefully around the world, experts said, since Britain is one of the few countries to have a framework to help doctors decide if and when to withdraw life-sustaining treatment from a child.

"This is not an easy area of medicine. Sadly we can't save every child's life," said Joe Brierley, a pediatric and neonatal intensive care consultant at London's Great Ormond Street Hospital. "Other countries are listening to what we're saying and following what we're doing."

The guidance, drawn up by doctors, lawyers and medical ethicists, advises for the first time that sick children as young as nine who have little hope of a fulfilling life should be given more say about whether their treatment should stop.

A child who has had many chemotherapy sessions, or a bone marrow or organ transplant that has not gone well "will have more informed views about continuing treatment than an adult facing such treatment for the first time", the advice says.

Vi Larcher, a former consultant in pediatrics and ethics, and co-author of the guidance, said it sought to address "an underlying concern that we're doing too much for too many for too long".

Advances in medicine mean more and more babies are being born very prematurely -- and some born as early as 22 weeks gestation are able to survive. Older children with conditions such as severe head injuries also have better survival chances thanks to medical progress.

Yet the guidelines urge doctors to consider carefully whether continuing treatment is always the right thing for a very sick child.
 

"For some, continuing life-sustaining treatment is simply prolonging suffering in the face of the inevitable," said Simon Newell, a neonatal consultant at Britain's Leeds General Infirmary.

"For (some) babies, no treatment is going to cure them and their quality of life is non-existent," he told a briefing.

Previous guidance suggested that doctors should not resuscitate or give intensive care to premature babies born at 22 weeks gestation or less, and should only attempt treatment in babies born at 22 to 23 weeks if parents and other carers agree.

(Editing by Crispian Balmer)

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