The Charlie Gard case and 'best interests assessment'
Dr Mary Neal
14 July 2017
The High Court in London is considering the fate of baby Charlie Gard again this week. Charlie’s parents want to try an experimental procedure in the hope it might lead to an improvement in his condition. Great Ormond Street Hospital oppose this, insisting that Charlie’s condition is hopeless and that keeping him alive, and attempting further treatment, will cause him suffering with no hope of benefit. They argue that his life support should be disconnected, allowing him to die.
Three courts in the UK have already agreed with the hospital, and the European Court of Human Rights has not overturned the UK courts’ decision, meaning that as things stand – and unless the new evidence currently under consideration persuades the High Court – the hospital is authorised to withdraw Charlie’s life support against his parents’ wishes.
To some onlookers it may seem incomprehensible that two loving parents who are in agreement about what is best for their child, and who are willing and able to fund it by themselves, should have to contend with opposition from the medical profession and the judiciary. In law, however, where parents and doctors disagree, a court must decide, and must base its decision on a ‘best interests assessment’ – a balancing of projected burdens and benefits for the child.
In this case, both sides of the balance – burdens and benefits – are unknowable. The procedure Charlie’s parents want to try has shown some promise in mice and humans with a similar condition to Charlie’s, but no-one can be sure whether it might help Charlie himself.
In terms of burdens, the hospital has acknowledged that ‘no-one can be certain whether or not Charlie feels pain’. Nevertheless, they claim that it is harmful to keep him alive. Is the prospect of Charlie surviving with significant disabilities being regarded, by hospitals and courts, as a harm-in-itself? If so, what message does this send to those living with significant disabilities, and those who love them?
In any case, Charlie’s parents do not ask that he be kept alive indefinitely without prospect of benefit. Rather, they ask for long enough to see whether the proposed procedure might be beneficial – probably a few months – and then reassess. Their position does not appear to be ‘life at all costs’.
The consequences of upholding the hospital’s view are momentous and irrevocable: a high threshold of confidence in the best interests assessment should be necessary. Where burdens and benefits are as uncertain as they are in Charlie’s case, however, there can be no single, clear answer to ‘best interests’. The court could conclude, perfectly reasonably, that either course of action (treatment or non-treatment) could be consistent with Charlie's best interests, and leave it to his loving parents to decide.