Dr Jeremy Groves reflects on one implication that the case of Charlie Gard has in adult critical care.
The Charlie Gard case has been the dominant medical story over the last few months. One cannot but have extreme sympathy for Charlie’s parents who fought valiantly to give their son a chance in life. It was a personal tragedy, played out on social media and in the press, where the pope, presidents, politicians and pundits all had a view and expressed it, informed or otherwise.
..the pope, presidents, politicians and pundits all had a view and expressed it, informed or otherwise
The images of Charlie posted on the web engendered enormous sympathy. He looked like a healthy child, bar the endotracheal (ET) and nasogastric tubes, and this captures a conundrum that intensive care, both adult and paediatric, poses to society. Namely how can someone who simply looks asleep have no meaningful prospect of an independent existence, or even life, once the machines are taken away?
In adult critical care we see this in young individuals with catastrophic brain injury. I know, from my anaesthetic experience, that the presence of an ET tube in a young patient with no sedation would make them cough and gag. However I still struggle to come to terms with the finality of brain stem death tests, despite having seen the injury on the CT scan and performed the tests myself. The patient looks as if they’re asleep; it seems a gentle prod might wake them. Yet I know this is not the case. How much harder it must be for a family, with no medical knowledge, to accept that their loved one’s brain is dead. Yet most of the time they do; mainly as they trust the clinicians managing their loved one.
If that trust never takes root, perhaps through poor communication, perhaps because there are internal barriers within the family that make trust difficult to establish, or if trust is lost through a reliance on ill-informed information based on opinion rather than science, then we have a problem. A lay view of the implications of a lack of trust in experts in relation to Charlie Gard is well articulated by Gaby Hinsliff in an article in the Guardian.1
In an age of information where much of it is dubious, and an expert is someone with a twitter account, we need to hone our communication skills.
Perhaps this is the lesson we in adult critical care need to learn from little Charlie. In an age of information where much of it is dubious, and an expert is someone with a twitter account, we need to hone our communication skills. By and large we’re very good at it. None the less it’s vital we establish trust with a family early in an individual’s admission. All parties need to be clear that, while the internet can instantly gratify a thirst for information, the patient’s medical team and the expertise they can call on, working in conjunction with the family, are most likely to serve the patient’s best interest.