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.