Tuesday, September 4, 2012

Don't just blame 'religion' when parents refuse to let desperately ill children die

Hospitals often fail to communicate with parents with fervent beliefs such as African Christians over withdrawing treatment
Some weeks ago I wrote about the problem of children being 'tortured' to death in high-tech hospitals because their religious parents won't agree to let them die. This was brought out by a piece in the Journal of Medical Ethics, co-authored by two doctors at Great Ormond Street and the hospital's Anglican chaplain.
These decisions must quite frequently be made: the paper mentions that 70% of the children who die in Great Ormond Street hospital intensive care unit do so as a result of the withdrawal of medical treatment. Only 25% do so while efforts at resuscitation are under way. The cases in which parents object are obviously a very small minority, and those where the objections are both religious and carried to the point of an argument in court are even smaller: six cases in three years, out of a total of 290 deaths.
One thing that stands out is that there is a pretty complete breakdown of relations with specifically African Christian parents: "In the Christian groups who held fervent or fundamentalist views, the parents did not engage in exploration of their religious beliefs with hospital chaplains and no religious community leaders were available to attend meetings to help discuss or reconcile the differences."
So I talked about this with Yemi Adedeji, from the Evangelical Alliance, a Nigerian pentecostalist now ordained into the Church of England, who wanted to explain the African view of spirituality.
African Christianity, he says, is often built on a foundation of traditional African religion, where everything has a spiritual cause, or dimension.
"The typical African is rooted in one world that doesn't separate the spirit, the body and the soul. So, if the weather is good, it's rooted in their spirituality. If the weather is bad, it's rooted in their spirituality. Nothing happens by chance.
"As a Christian, your first point of contact and the first point of belief is that we believe in God who can heal all infirmities and all diseases, and that's what I preach as a pastor, and that's what I believe. What we do is rooted in our faith, and our faith is rooted in our Bible."
But at the same time, people keep dying, and Africans know this as well as anyone else. In Adedeji's own church, the pastor's wife had died of cancer despite everyone in her social circle praying for her. So the central problem is not a belief in miracles but how to interpret this belief in any given circumstances. These are people who take very seriously the old Onion joke "God answers prayers of paralysed little boy: 'No,' says God." Sometimes, they believe, God does say no.
The central question, then, becomes one of discernment. The question of miracles is reframed to become "What does God want? What is God saying?" Once this is treated as a real question, one consequence is that the whole community can answer it. And it seems to be there that the problem arises with hospitals. "Most of the African pentecostal churches operate from a patriarchal mode, and there it is like, whatever the leader says, whether right or wrong, is what the parents will follow. If the leader says 'I think the child will live' that's what the parents will believe."
The obvious answer, then, is for the hospital to link up with the parents' pastors and discuss the matter that way. But what happens when the pastor does not want to talk?
The law is completely clear, and to that extent the question that the JME paper raises is a red herring. In a commentary published alongside the article, the barrister Charles Foster points out:
"The English law in relation to the administration of treatment to children, and the withdrawal of treatment from them, is straightforward: the only lawful treatment is that which is in the child's best interests … Yes, the views of those holding parental responsibility are sought, but those views do not determine where the child's best interests lie. This is often misunderstood. One hears people talk about a parental veto on proposed treatment or a withdrawal of treatment. There is no such veto … The authors object to having, at the instance of religiously motivated parents, to continue 'to cause pain and suffering by insisting on care that will not improve or cure the child's condition'. But they don't have to. Indeed it's unlawful."
But the clarity of the law won't stop these tragedies. What's clear, though, is that simply blaming "religion" is pointless. In most cases, thinking of these ghastly sufferings as part of the will of God helps parents come to terms with them. The part of Job's comforters is sometimes played by smug believers, but nowadays it's just as often played by unbelievers, smugly confident that a child's death demonstrates the indifference of the universe and the random character of other people's anguish.
By Andrew Browm

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