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Most people would be aware that members of the Jehovah's Witness faith reject blood transfusions on religious grounds. While it must be distressing for doctors to have to withhold a transfusion when it would save someone's life, we generally allow adults to make decisions which affect their own lives. (I am not talking about voluntary euthanasia here. That is a different matter on both legal and ethical grounds. It is about actively ending a life, not allowing a life to end by doing nothing.) In the case of children, however, we take a different attitude and courts in Australia have ruled as recently as June 2012 that transfusions can be given to the children of Witnesses over the objections of the parents if they are done to save the child's life.
There is a another situation where religion and medical ethics come into conflict. It is where the patient's life is being artificially maintained when there is no hope of recovery. In the vast majority of these cases relatives or carers give permission for intervention to be withdrawn and the patient dies peacefully. On rare occasions families will take court action to force the continuation of treatment, and these cases usually divide the public over issues of religion and the sanctity of life. Sometimes there is the vain hope expressed that a cure might be found but usually the arguments reflect the euthanasia debate, at least when adult patients are concerned.
It is different in the case of children, where the decision makers are parents. In a recent paper in the Journal of Medical Ethics ("Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?") the authors, Joe Brierley, Jim Linthicum and Andy Petros, looked at just over 200 deaths of children in paediatric intensive care where withdrawal or limitation of invasive care had been recommended by the medical staff. As for adult patients, a big majority of parents gave permission to withdraw treatment as this was seen to be in the child's interest. There were religious exceptions where the parents had concerns about sanctity of life and most of these were resolved following discussion with religious leaders, but a small number resisted even when told that there was no religious barrier to allowing the child to die. These parents were convinced that a miracle might occur and their children would be saved. That is, they believed that God would intervene and cure their children provided that he was given the time to do it.
It would be too easy to ridicule these parents for their hopes and expectations but that does nobody any good. I hope that I would never be put in their situation and as an atheist I know that expecting a miracle would probably not occur to me, but I can understand how they could absolutely refuse to give up hope. The question is should society have a formal procedure to overrule parents when they base decisions on faith, particularly when that faith goes beyond the teachings of their religion.
Australia is essentially a secular society, and our Constitution forbids the establishment of any official religion. That doesn't mean that we are a society free of religion and its influences, and the debates about chaplains in schools, religious education periods in state schools, who can marry whom, funding of religious schools (and activities like World Youth Day), tax exemptions for churches and the expected input of religious leaders into debates about abortion and euthanasia attest to this. We do, however, generally leave religion to get on with what it does without interference provide that laws are not broken. We allow some practices but forbid others, an example being that we allow circumcision of young boys for religious reasons but ban the incorrectly-named circumcision of girls. We don't allow polygamy and we keep a close eye on religious slaughter of animals to ensure humane treatment. There are precedents for limiting what religious belief allows people to do, but should we extend these limits to include parents making life-and-death decisions about their children?
Unfortunately there is a precedent here too as we allow parents to withhold vaccination from their children based on religious beliefs, but even the most ardent pro-vaccinator must see that as different to dealing with situations where death is immediately present.
The action of the courts regarding blood transfusions and the children of Jehovah's Witnesses is probably a good model for handling terminal illness, where each case can be judged on its merits. I see no value in giving doctors absolute power to overrule parents' wishes, no matter how irrational those wishes might appear, but some guidelines would be useful.
Ethics is hard. Sometimes I'm glad that I'm a pundit and I don't have to make the laws. Or the decisions.
This article was published as the Naked Skeptic column in the October 2012 edition of Australasian Science
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