Religious beliefs may adversely affect care of very sick children

By Helen Albert, Senior MedWire Reporter

Deeply held religious beliefs of parents can prevent very sick children from receiving appropriate removal of care, say researchers.

The authors of the paper, published in the Journal of Medical Ethics, recognize the value of religious beliefs in pediatric intensive care and acknowledge that they can provide valuable support for families and staff.

However, they express concern that some deeply held parental beliefs "can lead to children being potentially subjected to burdensome care in expectation of 'miraculous' intervention."

Joe Brierley (Great Ormond Street Hospital for Children, London, UK) and colleagues reviewed 203 cases of very sick children for whom doctors had recommended withdrawal or limitation of invasive therapy due to overwhelming medical evidence over a 3-year period.

In 186 of these cases, an agreement with parents or guardians to withdraw treatment was achieved. In the 17 remaining cases, resolution was not achieved even after extended talks with medical teams or with the help of local support mechanisms.

Of the 17 cases, 11 (65%) involved challenging protracted discussions due to the parents or guardians refusing withdrawal of intensive or aggressive treatment citing beliefs that "intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong."

Five of the 11 cases were resolved following consultation with the relevant religious community leaders (Protestant, Muslim, Jewish, or Roman Catholic).

Of the remaining six cases, one child had intensive care withdrawn after a High Court order was obtained, but no resolution occurred in the remaining five (Christian) cases due to continued parental belief that a "miracle" would occur. Of these children, four died and one survived with profound neurological disability.

"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," conclude Brierley et al.

In a commentary accompanying the article, Julian Savulescu (The Oxford Uehiro Centre for Practical Ethics, UK) argues that distributive justice should be taken into account in such cases.

"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 writes.

In another commentary, Steven Clarke (University of Oxford, UK) suggests that "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."

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