RELIGIOUS parents of seriously ill children who expect miraculous intervention are challenging the withdrawal of therapies that medical professionals consider to be “aggressive”, “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 and discomfort, it would be better to have a “default position” whereby 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, reviewed 203 cases at the unit over a three-year period, where withdrawal or limitation of invasive care was recommended by the medical team.
While in the majority of 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Jewish, and Roman Catholic parents – were resolved after meeting religious leaders; one child had intensive care withdrawn after a High Court Order; and in the remaining five, all involving Christian parents, most from “Christian fundamentalist churches with African evangelical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of 17 cases where there difficulties with finding a resolution, 14 of the children died soon after intensive care was withdrawn; one died within a week of withdrawal; and two survived with “profound residual neurodisability”.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”, citing “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 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.
Professor Julian Savulescu, the journal’s editor, argues that: “Treatment limitation decisions are best made, not in the alleged interests of patients, but on distributive justice grounds.”
He suggests that, while it is difficult to say when a human being’s life is worse than death for that individual, “it is much more tractable to decide when one life is better than another and when one life is more worth saving.” 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 Steve Clarke of the Institute for Science and Ethics 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 cites “significant scholarly arguments for the conclusion that miracles are possible”, and suggests that doctors should engage with devout parents on their own terms.
“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,” Dr Clarke writes.
Dr Mark Sheehan, an Ethics Fellow at the University of Oxford, 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, from Green Templeton College at the University of Oxford, suggests that English law, in which the child’s best interests are paramount, is already adequate to the challenge posed by the cases described in the paper. He also argues that these interests cannot be judged only according to medical criteria, but as a “holistic exercise”.
He is critical of the assumption that “there is some sort of democratically ordained mandate to impose secular values on everyone.” He suggests that a parent’s refusal to withdraw treatment from a child is something that “a truly secular society, rejoicing in diversity, should be keen to respect, as long as it is consistent with the best interests of the child, as broadly viewed.”
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