Who Knows Best (Interests)? The Case of Charlie Gard

When baby Charlie Gard was diagnosed with a rare mitochondrial disease, his parents located a Professor of Neurology in the USA willing to provide nucleoside therapy which offered a theoretical chance of improvement and successfully raised £1.3 million through crowd funding. The decision that unproven therapy was contrary to Charlie Gard's best interests and that life-sustaining treatment should be withdrawn was devastating for his parents and difficult for their supporters to comprehend. The decision was upheld at three levels of appeal and Charlie died in July 2017 aged 11 months. This commentary provides a critical analysis of the legal principles surrounding unproven treatment and application of the best interests test in the different contexts of hospital and court. It draws attention to conflicting guidance and explores differences in approach in relation to unproven treatment for adults lacking capacity and children.