James Mumford

What we must learn from the tragic case of Charlie Gard

I teach bioethics, and the abiding temptation is always to design classes around rare, fiendishly complex cases. That’s how you grab the attention of bored undergraduates; the fodder you throw to budding lawyers. You jump from Tony Bland to Terry Schiavo to Karen Ann Quinlan. You ask your students to put themselves in the shoes of the respective decision-makers. What would you have done? What factors would you have considered? How would you have applied the relevant principles?

It seems hasty, callous even, to reflect upon the shadow that will be cast by the Charlie Gard case. But the scale of the public outcry, the pitch of the debate, means we must think now about the future. What might the fall-out be? What consequences can we envisage? What ramifications are possible? And what must we prevent from happening?

First, who will trust their doctors again? When paediatricians at Great Ormond Street Hospital (GOSH) next inform parents that nothing more can be done, who will believe them? Communications broke down between GOSH and Charlie’s parents; can it be restored for the rest of us? Patients will inevitably be more suspicious: what are the medics not telling me? Who is making the decision about rationing of certain treatments, and why? Why is NICE (National Institute for Health and Care Excellence) not approving a particular treatment I’m holding out hope for? Why not wait for more positive doctors to come out of the woodwork from America?

Distrust of doctors could be compounded by distrust of judges. I live between the U.S. and the U.K, and the aspect of the Charlie Gard case that most shocked people in America was the spectre of the state infringing upon decisions that belong properly to the family. Why shouldn’t Chris Gard and Connie Yates have been given the chance to chase a miracle? Given the devastating prognosis, why should parents not be free to fail? Why should it not be for them to decide the best interests of the child?

If there is a spectrum between parental rights on one side and state intervention on the other, what will happen when there is a more serious case concerning competent parents where the courts do have to weigh in on the best interests? We have to beware of the massive counter-reactions that occur in policy because extreme cases can make for bad policy. 

An even greater risk is that we exacerbate a culture of ‘vitalism’ – a commitment to maintaining life at all costs, to strain officiously to keep alive, as the Victorian Arthur Clough put it.

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Written by
James Mumford
James Mumford is a London-based writer and fellow at the University of Virginia's Institute for Advanced Studies in Culture. His most recent book, Vexed: Ethics Beyond Political Tribes, is out with Bloomsbury Continuum.

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