Terminally sick children are undergoing “needless” suffering because their deeply religious parents believe a miracle cure will come, say doctors.
A controversial new study by intensive care medics and a hospital chaplain concludes that a small but growing number of fervently religious families is refusing to accept medical advice and instead insisting their desperately ill children will be “saved” by divine intervention.
As a result, these children are made to undergo further aggressive, yet futile, treatment despite doctors’ guidance that there is no hope of survival.
[Related article: All children to be offered annual flu vaccine]
The report from Great Ormond Street Hospital, published today in the Journal of Medical Ethics, argues a need to review the legal and ethical guidelines surrounding such cases to prevent them from happening in the future.
Citing Article 3 of the Human Rights Act, which aims to ensure no one is subjected to torture or inhumane or degrading treatment, the doctors insist: “Spending a lifetime attached to a mechanical ventilator, having every bodily function supervised and sanitised by a carer or relative, leaving no dignity or privacy to the child and then adult, has been argued as inhumane.”
They add: “We suggest it is time to reconsider current ethical and legal structures and facilitate rapid default access to courts in such situations when the best interests of the child are compromised in expectation of the miraculous.”
While the study emphasises that religious beliefs provide vital support to parents whose children are seriously ill, as well as to the staff who care for them, they say some deeply held beliefs are resulting in decisions contrary to the best interests of the child.
They reviewed 203 cases that involved “end of life decisions” over a three-year period. In 186 of those cases, agreement was reached between doctors and families about withdrawing aggressive but futile treatment.
But in 17 cases difference of opinion had not been resolved, despite extended discussions. And in 11 of those cases there were directly expressed religious claims that intensive care should not be stopped because of the “expectation of divine intervention and a complete cure” as well as the belief that medical opinion was wrong.
[Related article: Psychological child abuse ‘as damaging as physical abuse’]
A range of faiths was represented, including Christian fundamentalism, Islam, Judaism and Roman Catholicism.
Five of the 11 were resolved after meetings with the relevant religious leaders outside the hospital and, in one case, intensive care was withdrawn following a High Court decision.
But five cases were not resolved, and intensive care continued. Four of these children eventually died, while one survived with profound neurological disability.
The authors concede that parental reluctance to allow treatment to be withdrawn is “completely understandable as [they] are defenders of their children’s rights, and indeed life”.
But they insist that when children are too young to be able to actively subscribe to their parents’ religious beliefs, a legal position in which parental religion is “not the determining factor” might be more appropriate.
In an accompanying piece, the journal’s editor, Professor Julian Savulescu, said that tough decisions had to be made in a publicly funded system with limited resources – favouring those whose lives could be saved.
“Faced with the choice between providing an intensive care bed to a [severely brain damaged] child and one who has been at school and was hit by a cricket ball and will return to normal life, we should provide the bed to the child hit by the cricket ball,” he said.
[Related article: Bereavement or break up during pregnancy can damage health of child]
Dr Steve Clarke of the Institute for Science and Ethics said he believed proper communications between doctors and families could help resolve many such cases: “Devout parents, who are hoping for a miracle, may be able to be persuaded, by the lights of their own personal...religious beliefs, that waiting indefinite periods of time for a miracle to occur while a child is suffering, and while scarce medical equipment is being denied to other children, is not the right thing to do.”
But leading ethicist Dr Mark Sheehan described as unproductive and a “red herring” the study’s polarisation of medicine versus religion.
Charles Foster, an Oxford University legal expert, said there was a place for religion in life and death decisions: “They seem to think that because we are becoming an increasingly 'secular society’ there is some sort of democratically ordained mandate to impose secular values on everyone.”