(Cross-posted from EJIL: Talk!)
For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently. A decent précis is available here; but it’s worth rehearsing.
Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome. By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests. This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH. This was confirmed by the Supreme Court and the European Court of Human Rights. During all this time, Charlie remained ventilated.
In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University. However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment. The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation. On the 24th July, Charlie’s parents dropped their request for continued treatment. The details of Charlie’s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days. The High Court ruled against this on the 27th July. Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th July, a few days before his first birthday.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.