Parents who await miraculous cures could be “torturing” their dying children, say UK doctors

by Michael Cook

tags: futile care, informed consent, withdrawal of life support

What should doctors do if deeply religious parents want to keep a child alive at any cost, even if the child is suffering and has no chance of survival? In a controversial article in the Journal of Medical Ethics, two paediatricians and the chaplain of Great Ormond Street in London call for changes in the law.

They are worried that deeply held beliefs are leading more parents – especially fundamentalist Christians from sub-Saharan Africa -- to insist on aggressive treatment that ultimately is not in the best interests of the sick child. Of 203 end-of-life decisions over three years, 17 couples stubbornly failed to agree to withdraw aggressive, but ultimately futile, treatment. Of these, 11 gave religious reasons. The authors say that these cited Islam, Judaism and Christianity, but often they refused to heed the advice of their own religious authorities. “All these families were explicit in their expectation of a ‘miraculous cure’ for their child, and as such all felt the medical scientific information was of limited use.”
How should these conflicts be solved?
This is where things get interesting. The authors’ proposal is that the default legal position should be withdrawal of treatment when negotiations between the parents and the doctors have broken down over the expectation of a miraculous cure. The model they propose is the solution for the child of Jehovah Witness parents who needs a blood transfusion: a court order to provide the transfusion because it is in the child’s best interests. Continuing treatment could even breach article three of the European Convention on Human Rights, which prohibits torture.
However, as they acknowledge, the analogy is not exact, because the “best interest” of the Jehovah Witness child is life, while “best interest” of the child of the stubborn fundamentalists is death. This is a bit tricky, so they cast about for other arguments. Citing Richard Dawkins, they argue that a small child is not old enough to have religious beliefs of his own. Then they point out that if the child survives, he will have a low quality of life anyway. Finally, they suggest that supporting the child is a waste of scarce resources.
The responses in the JME are fascinating. Its editor, the Oxford utilitarian Julian Savulescu, argues that the article misses the mark entirely. It is really a question of the allocation of scarce resources.

“While I might want a treatment with a one in a million chance of a cure, society is entitled to say that such a treatment cannot be afforded within a public health system, even if there is a small chance of cure. The chance is just too small.”

Another Oxford ethicist, Mark Sheehan, says that religion is a red herring in the debate.

“Given the cultural and political histories of Islam and Africa in the last 100 years, how is it surprising that the parents who would not come around did not trust the combination of Western medicine, Western religious representatives and the secular view of doctors?”

Steve Clarke, also of Oxford, analyses some of the contested issues. The best interest of the child: “What could be more in the interest of a dying child than being miraculously cured?” Miracles: “They do not demonstrate that miracles are impossible; and indeed this would be very difficult for them to do so given there are significant scholarly arguments for the conclusion that miracles are possible.”
He then suggests that rather declaring a war on the parents’ religious beliefs, it would be better to engage with them on their own terms. God may have already made up his mind and waiting longer will not change it; God could miraculously cure the child after treatment is withdrawn; or God could even restore the child to life.
Finally, Charles Foster, a lawyer whose expertise is the withdrawal of life-sustaining treatment, suggests that the authors are legal ignoramuses who do not understand the notion of “best interests” or the current state of the law. “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,” he writes.

“The authors pose the question: ‘Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?’ It's a curious question. The legal and ethical orthodoxy is that no beliefs, religious or secular, should be allowed to stonewall the best interests of the child.”

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