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When belief leads to “futile” treatment for sick children

Tuesday August 14th, 2012

Some very sick children are being subjected to futile care and needless suffering because their deeply religious parents hope for a “miraculous intervention”, it is claimed today.

A review of current ethics and law is needed because deeply held beliefs are increasingly leading parents to insist on the continuation of aggressive treatment that is not in the best interests of the sick child, according to a report in the Journal of Medical Ethics.

The authors, who comprise children’s intensive care doctors and a hospital chaplain, base their conclusions on a review of 203 cases that involved end of life decisions over three years.

In 186 cases, agreement was reached between the parents and healthcare professionals about withdrawing aggressive, but ultimately futile, treatment.

But in the remaining 17 cases, parents had insisted on continuing full active medical treatment, while doctors had advocated withdrawing or withholding further intensive care on the basis of the overwhelming medical evidence.

Of these, 11 involved directly expressed religious claims from the parents that they expected divine intervention and a complete cure. Their faiths included Christian fundamentalism, Islam, Judaism, and Roman Catholicism.

Five were resolved after meeting with the relevant religious leaders outside the hospital, and intensive care was withdrawn in a further case after a High Court order.

But intensive care was continued for the remaining five children. Four eventually died; one survived with profound neurological disability.

The authors say that religious beliefs provide vital support to many parents whose children are seriously ill, as well as to the staff who care for them, and emphasise that parental reluctance to allow treatment to be withdrawn is “completely understandable as [they] are defenders of their children’s rights, and indeed life.”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 when children are too young to be able to actively subscribe to their parents’ religious beliefs, a default position in which parental religion is not the determining factor might be more appropriate. They cite Article 3 of the Human Rights Act, which aims to ensure that no one is subjected to torture or inhumane or degrading treatment or punishment.

“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 write.

“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.”

In an accompanying commentary, the journal’s editor, Professor Julian Savulescu, says: “Treatment limitation decisions are best made, not in the alleged interests of patients, but on distributive justice grounds.

“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.”

Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children? Petros A, Brierley J, Linthicum J. J Med Ethics. doi 10.1136/medethics-2011-100104

Tags: A&E | Child Health | General Health | UK News

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