Re: Alfie Evans and Charlie Gard—should the law change?
Identifying futility can only happen in relation to something else: for the parent it may be that life preserved, with no clear evidence the child is suffering, is not futile. It may be for wider society that expending limited resources with no clear end point is futility epitomised. What is striking in the Alfie Evans case is that resources were not mentioned as a factor, so one assumes the judge was left deciding between two descriptions of suffering and coming to a contrived conclusion about why it may be in someone’s best interest to be allowed to die. Surely, when the patient has never been in a position to voice their views and beliefs, any assessment of best interests and futility has to be coloured by one’s own view and preferences. It is striking to see how much the judge commented on the father’s emotional state and learning; how much did these factors draw or detract the judge from the parent’s view of quality and acceptability?
Of course it would be best to have relationships that foster trust so that these situations do not arise, and look at ways to mitigate the situation so as to avoid court. But if court is inevitable then it seems imperative that parents should have recourse to advocates to represent them. And maybe the role of the judge is to decide, not between competing descriptions of quality of life, but instead, whether the individual right to medical intervention in order to exist or the wider societal right to fair use of resources takes priority. Resources are limited and they do matter. This should not be the primary concern when we treat patients but when there is an impasse, it is usually resources that become the limiting factor. Why can there not be more honesty about this? Of course it could mean that if the family had resources to go elsewhere there is no reason not to allow them to go.
Competing interests: No competing interests