Potentially inappropriate treatment as opposed to futility and other ethical issues in the Charlie Gard case

Abstract

In the first 6 months of 2017, there was a heated debate about the case of an English child with a rare and serious illness. Charlie Gard spent 9 months in an Intensive Care Unit paralyzed, undergoing mechanical ventilation and with a deteriorating neurological function. Meanwhile, a debate took place in the specialized press and general media about who had to make the decision to withdraw or continue with life support treatments, and on the criteria necessary to make that decision. In this article, we analyze these and other ethical problems, and suggest that in order to make the best decisions, attempts to define futility, and determine who decides has evolved into the concept of potentially inappropriate treatments and shared decision-making strategies.