High Court Judgement Rules Doctors can Withdraw Life Support from Baby Against Parents Wishes Due to Best Interests

Wednesday 12th April 2017

After a hearing in the Family Division of the High Court, Judge Justice Francis ruled today that it is in the best interests of a baby with a rare genetic condition and suffering from brain damage to be moved to a palliative care regime and have life supporting treatment withdrawn, bringing fresh debate into the decision about a child’s life and death facing an unknowable amount of pain, in a case filled with emotion, tragedy and an incredibly difficult choice.

The case concerns the case of Charlie Gard, 8 months old and suffering from an incredibly rare genetic disorder known as mitochondrial depletion syndrome, which affects the energy delivered to cells to develop and causes muscle weakness and brain damage, both of which Charlie was suffering.

The case centred on providing Charlie with a pioneering treatment called nucleoside therapy in America, which had managed to help people with a similar condition but was untested for hers. Her parents, Connie and Chris Gard wanted to take this chance of treatment while the staff of Great Ormond Street Hospital, not believing this treatment would be of benefit, wanted the legal right to provide only palliative care and give Charlie a dignified death.

In a moved judgement, Justice Francis praised the efforts of the medical professionals, the legal staff and the parents for their work on behalf of Charlie, and said with the “heaviest of hearts” that removing life support would be in the best interest of the child, which devastated the Gard family to the point that it was reported that Chris screamed “No!” in response to the judgement. In a later statement, the family were said to be “devastated” and planned to appeal.

The case highlights a continued issue in medical ethics about the legal right to remove treatment in such a case that treatment would ultimately cause pain and had a negligible chance of restoring life. The American doctor ultimately agreed that “any attempt at therapy would be futile” and noted a precedent in the United States that would allow futile care to take place providing it was paid for (it must be noted however that money is not a factor in Gard’s case). Indeed, there are notable examples of cases in America of futile care treatments being used despite causing no change of survival chances and causing pain and invasive treatment, most notably the legal case surrounding Joseph Maraachli.

The case is heartbreaking, not least for the parents and doctors and medical staff directly involved with Charlie, and as with many Best Interests cases involving persons and children unable to possess capacity for the decisions regarding their own health, this comes down to the awful choice between a life artificially lengthened and the potential for pain this can cause to someone unable to consent to making a choice that condemns a child to death. In this case, it was decided that the potential risk of pain for Charlie would not outweigh the negligible chance this will improve his health, not counting the complexities of travel to the United States for treatment.