Jane McCredie: Miracle impasse

IN most Western countries it is generally accepted both legally and by the community that parents do not have the right to refuse potentially life-saving treatment for their children because of their own religious or other beliefs.

The best known example relates to Jehovah’s Witness where parents cannot refuse a necessary blood transfusion for their child.

But the ethical questions become a lot murkier when the clash between parents and clinicians is not about the provision of treatment, but its withdrawal in a terminally ill child.

The decision to stop treating a child is always going to be an agonisingly difficult one for doctors and parents, especially when the two sides are unable to agree on the best course.

Earlier this year two paediatric intensivists and a chaplain from London’s Great Ormond Street Hospital wrote about their increasing concern that “deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of ‘miraculous’ intervention”.

They reviewed 203 end-of-life cases at their hospital in which clinicians had recommended withdrawal or limitation of invasive therapy. In 17 cases, agreement was not able to be reached with parents despite extended discussions.

Eleven cases “involved explicit religious claims 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”.

The Great Ormond Street authors argued for a new approach to such cases, one modelled on the Jehovah’s Witness scenario, where strongly held parental beliefs should be ignored on the basis that it is in the child’s best interest to withdraw futile life-sustaining therapy that is causing pain and discomfort.

When religion and medicine come into conflict, things tend to get heated so it’s hardly surprising the proposal sparked lively debate. Commentaries published last week in the Journal of Medical Ethics contest the authors’ conclusions — and on quite different grounds.

Australian philospher Dr Steve Clarke, now at the University of Oxford, is uncomfortable with the authors’ implicit assumption that “miracle cures will never take place”. Rather than seeking to override the wishes of parents waiting for a miracle, it might be better to engage them on their own terms, he suggests.

“One point to put to the parents is that God, who is usually regarded as all-knowing, will be aware that they are very distraught and will have heard their prayers. God will already have made a decision about whether to intervene or not. It is very hard to see why waiting longer will lead to a change of decision.”

Such a point could perhaps be made by a faith leader but I’m not sure how many health professionals would be comfortable engaging on that level with a faith they did not share — or how many parents would welcome that kind of commentary on their beliefs from an outsider..

Another Oxford ethicist, Dr Mark Sheehan, makes almost the opposite argument, describing religion as a “red herring” that should be ignored in formulating the response to such cases.

“Clinicians do need help and, in many cases, society’s support in resolving these conflicts, but this support should not involve reference to religion … The focus should remain on the well-articulated ethical reasons that apply to all, not on whether the parents claim a specific kind of religious reason.”

Perhaps the most thought-provoking commentary comes from another Australian expatriate, bioethicist Professor Julian Savulescu, now also at Oxford.

He argues the core issue is not the interests of the child but distributive justice, something he describes as “the elephant in the intensive care room”.

Pain or discomfort associated with futile treatment can be managed with, for example, sedation, and it is wrong to claim that parents who cling to even a minuscule chance of survival are acting against their child’s interest, he writes.

“A better ethical ground for withholding or withdrawing life-prolonging treatment is not that it is in the interests of the patient to die, but rather on grounds of the limitation of resources … Put simply, not all treatment that might be in a person’s interests must ethically be provided.”

The patient’s interest argument is a “convenient fiction”, he says, allowing clinicians to avoid acknowledging that a publicly funded health system cannot afford to continue treatment in cases with a very poor prognosis.

Professor Savulescu’s approach does have a certain ethical purity, and it neatly removes religion from the argument, but I wonder how it would go in the real world.

Perhaps there’s a gentler way of putting it, for it seems a big ask to suggest doctors tell parents treatment should be withdrawn from a dying child because the funds would be better directed at others with a greater chance of survival.

Jane McCredie is a Sydney-based science and medicine writer.

Posted 20 August 2012