• consciousness
• mitochondrial disease
• palliative care

The case of Charlie Gard, the English boy with mitochondrial DNA depletion syndrome who was at the centre of a high-profile legal case and died days before his first birthday, attracted worldwide attention.1 2 His condition deteriorated when he developed progressive encephalopathy and muscle weakness and he required artificial ventilation. His parents found a doctor in New York who had developed nucleoside therapy, which he had used for patients with a similar disease. However, the doctors taking care of Charlie at the Great Ormond Street Hospital (GOSH) for children in London felt that the new therapy was not suitable for Charlie and argued that he should receive palliative care in a hospice. The case ended up in The High Court of Justice, which covers England and Wales, and the European Court of Human Rights. Both agreed with GOSH that the new therapy was not in the best interests of the patient and stated that Charlie’s life support should be withdrawn.

Hard lessons can be learned from this case, as suggested by Wilkinson and Savulescu.1 They have asked a number of questions and three of these are most important in my view. These are whether we should have lower thresholds for innovative, but untested, treatment …