Bioethics Blogs

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment.

 

Best Interests

The legal decision for Charlie will be based upon an assessment of his best interests. He has a rare genetic disorder affecting his muscles and his brain. He has been on life support since last October and has been progressively deteriorating. A neurologist in the USA has suggested that experimental nucleoside treatment might, in theory, offer some benefit, though it has never previously been tried in this situation.

The central ethical question is whether it would be best to provide the experimental treatment and continue intensive care for Charlie for several months more, or to withdraw treatment and allow him to die. How should we weigh up the risks and benefits of those two alternatives?

We have previously written about this difficult question. In a pair of editorials in the Lancet medical journal, we expressed different points of view. Dominic Wilkinson argued that the proposed course of treatment would do more harm than good. In his view, it is likely that Charlie would experience pain and discomfort from continued treatment; it is also unlikely, given what is known about it, that Charlie would benefit from nucleoside treatment. In contrast, Julian Savulescu argued that it is not clear that continued mechanical ventilation in intensive care is so terrible a life that it would not be worth living.

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.