RELIGIOUS parents of seriously ill children who expect miraculous intervention are challenging the withdrawal of therapies that medical professionals consider to be "aggressive" and "futile and burden­some", a paper published in the current issue of the Journal of Medical Ethics suggests.

The authors of the article "Should religious beliefs be allowed to stone­wall a secular approach to with­drawing and witholding treatment in children?" argue that, in place of protracted dialogue between parents and professionals, during which a child might be subject to pain, it would be better to have a "default position"in which the case is taken to court.

Dr Joe Brierley and Dr Andy Petros, both consultants at the Paediatric and Neonatal Intensive Care Unit at Great Ormond Street Hospital for Children, and the chaplain of the hospital, the Revd Jim Linthicum, wrote the article after reviewing, over a three-year period, 203 cases at the unit where with­drawal or limitation of invasive care was recommended by the medical team.

While in most cases parents agreed to withdrawal or limitation, in 17 cases "extended discussions" between parents and medical teams did not lead to a resolution. Of these, 11 involved "explicit religious claims that intensive care should not be stopped due to the expectation of divine intervention and complete cure together with the conviction that overly pessimistic medical predictions were wrong".

Of the 11 cases, five - involving Muslim, Jewish, and Roman Catholic parents - were resolved after meet­ing religious leaders; one child's intensive care was withdrawn after a High Court Order; and, in the remaining five cases, all involving Chri­stian parents, mostly from "Christian fundamentalist churches with African evangelical origins", no resolution was possible, owing to "expressed expectations that a 'miracle' would happen".

The authors report that the Christian parents who "held fervent or fundamentalist views" did not engage in exploration of their religious beliefs with hospital chap­lains, and that no religious com­munity leaders were available to attend discussions.

Of the total number of 17 cases where there were difficulties with finding a resolution, 14 of the chil­dren died soon after intensive care was withdrawn; one died within a week of withdrawal; and two sur­vived with "profound residual neurodisability".

While the authors acknowledge that it is "completely understandable" that some parents oppose withdrawal of support, they call for a "different approach", and speak of "considerable stress, tension and conflict" for parents and staff.

The paper argues that, while "any solution should allow due deference to a family's beliefs and shared involvement in decision-making", the religion of parents "should not influence the management of their child". It cites the example of giving the children of Jehovah's Witnesses blood transfusions, and also Article 3 of the Human Rights Act, which states that "no one shall be subjected to torture or to inhumane or degrading treatment or punishment."

The argument of the paper is challenged in four commentaries, also published in the Journal of Medical Ethics. They were com­missioned by the journal, and appear alongside the article.

The journal's editor, Professor Julian Savulescu, argues that "Treat­ment limitation decisions are best made, not in the alleged interests of patients, but on distributive justice grounds."

In a publicly funded system with limited resources, these should be given to those whose lives could be saved rather than to those who are very unlikely to survive, he argues.

Dr Stephen Clark, of the Institute for Science and Ethics at the University of Oxford, argues that the comparison with Jehovah's Witnesses' opposing blood tranfusions does not stand up: belief in miracles is widespread, and opposing withdrawal of treatment in the hope of a miracle cannot be said to be against a child's best interests. He refers to "significant scholarly arguments for the con­clusion that miracles are possible", and suggests that doctors should engage with devout parents on their own terms.

Dr Mark Sheehan, an Ethics Fellow at the Institute, describes religion as discussed in the paper as a "red herring". There are, he argues, "other things going on in these cases", and they would be better resolved by being interpreted accord­ingly, with a focus on "the well-articulated ethical reasons that apply to all".

Charles Foster, a Fellow of Green Templeton College, Oxford, suggests that English law, in which the child's best interests are paramount, is already equal to the challenge posed by the cases described in the paper.
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