Futility of Treatment for Dying Children: Lessons from the Charlie Gard Case.

Abstract

Decision-making about seriously ill and dying children is fraught and distressing for all concerned. The United Kingdom saga involving Charlie Gard and the ruling by four courts hat in his best interests he should not receive experimental therapy overseas provides many lessons for how such controversies should and should not be handled. This editorial places the case in historical and legal context and traces the evolution of the disputation about the treatment to be provided to Charlie, including through the courts and in the media. It argues that it is important for all concerned, including for confidence in clinical guidance and decision-making, that systems be generated which minimise the risk of cases such as that involving Charlie Gard being handled so publicly and in so adversarial a way.