Wednesday, September 05, 2012

Parents who Believe in Miracles are "torturing" Dying Children.

An article published recently in The Journal of Medical Ethics, in the UK, cited over two hundred cases where the parents' religious beliefs adversely affected the care of children in intensive care. In the majority of cases there was some meeting of minds but in 17 cases no accommodation was possible between the parents and the medical staff caring for their dying children. The authors, who included medical staff at Great Ormond Street Hospital along with their chaplaincy department, expressed concern that there was an increasing number of instances where parents required futile and intrusive treatment in the expectation of a miraculous recovery. The ethical issue was whether parents had the right to 'stonewall' the medical judgement of the health professionals and impose their religious beliefs on their children with pointless medical interventions.

'Christian Nurses & Midwives' (CNM) addressed this very problem in the Spring 2007 issue of CNM News, number 17, in an article titled 'Faith in Faith or Faith in God?' I was the author of that article and given the current interest in the media I thought I would revisit this issue here. I will start with a major caveat - I have only read the abstract of the JME article and some of the media comment resulting from it. I am not a subscriber to JME so I can't comment in detail on the piece in question. But given my prior interest in this topic I hope my thoughts will be helpful to the reader.

CNM gave some consideration to the interaction of 'faith' and medical treatment in the light of some cases not dissimilar to the ones cited by JME. Those were instances I had personal knowledge of in my work in Paediatric Intensive Care over twenty years and as a committed Christian I could bring to bear some insight into the predicament the parents of dying children face in the context of their 'faith' position. I too have met parents who wished to continue medical treatment in the hope of divine intervention and wrestled with the ethical dilemma of such demands as well as having to reflect on my own understanding of my own 'faith' position. My article 'Faith in Faith or Faith in God?' arose out of these demanding challenges.

The obvious point to make is that parents who seek medical treatment in the hope of a miraculous outcome are not doing so from a considered conviction borne of their faith as the JME authors intimate. Such a position is self evidently paradoxical and conflicted; why is the hoped for miracle contingent on human effort?! Theologically it is ill-considered. In fact if a belief in miracles was the driving motivation it ought logically to give rise to the opposite problem - of parents refusing reasonable medical treatment. So the dynamic is not the superficially stated position, the true dynamic lay elsewhere.

In 'Faith in Faith or Faith in God?' I set the stated 'faith' in the context of a faith community with a self deluding and self re-enforcing faulty theology. The media reports of the JME article set the parents up as discrete individuals with little social context. However it struck me that these individuals exist in the context of a 'faith' community and one, as a committed evangelical Christian, I would argue has a faulty theology which has triumphalistic expectations and a 'party' line to be adhered to. The sheer paradox I've already alluded to should be a clue that it is faulty on every level. For every miraculous deliverance in the Biblical text there are more accounts of suffering. And while it is entirely appropriate to pray for deliverance it is difficult to reconcile the naive notion that Christians are above the common suffering of humanity with the stories of Job, Jeremiah, Jesus or Paul. The conflict JME points to is not between secular values and Christianity as it implies, it is actually between Christian values and worldly ones defined by which kingdom we seek to belong to; is it a 'this worldly one' or a 'heavenly one'? From that perspective the JME authors have far more in common with the parents they despise than either have with authentic Biblical Christianity!

I am troubled by reports of the JME article which use words like 'torturing' and 'stonewall' (these may not be in the original JME article of course) which are clearly weighted to prejudice the reader and draw them on to a particular side of the debate. The discussion actually comes to centre on 'distributive justice' - a disingenuous term which means 'health care rationing' - ie each individual is entitled to only so much of health care product at the discretion of the health care professional. That is the core issue here. I'm not sure I would want that sort of power or responsibility but that is the end point the JME authors are pointing to.... an ethical debate about whether agents of the state have the power to decide the fate of your children.

'Hard cases make bad law' means that when we make generalities based on relatively rare events we are only creating a future injustice. Even assuming that the JME article is merely attempting to stir up a debate, rather than being a tendentious polemic, the problem is that it is theologically and socially naive. No doctor is compelled to 'torture' a dying child... This is mere journalistic hyperbole! If this is to be a mature discussion then such histrionics need to be set aside.

And before you comment on this article check out the one I did in 2007!

How would I deal with these ethical situations? If I thought that there was no realistic prospect of recovery despite all our efforts in intensive care - I would tell the parents we had come to the end of all that Man can do... an acknowledgement a secular humanist is far more likely to choke on than a believer. Yet such an admission instantly resolves the clash of worldviews and focuses the discussion where it should be both medically and theologically without any contrived phoney war between the two. These parents should be treated as any other parent in a grief state of 'bargaining' or 'denial'.

What these parents most fear is not breaking faith with God, but breaking faith with their dying child.