Charlie Gard and the Ethics Commentator

Guest Post: Daniel Sokol

‘Best interest’ cases, such as the Charlie Gard case, are fundamentally about medical ethics, although they are determined by a single judge in a court of law.

At the hearing last week, there were at least 4 express references to medical ethics.

The first appeared in the hospital’s “position statement”, drafted by Leading Counsel, Katie Gollop QC:

As to the disagreements [between the parents and the hospital], one is a difference of opinion about the risks, benefits and ethics of providing our compound nucleoside treatment for Charlie after a time when his brain had become profoundly affected by his genetic disease.”

The second was a reference to the Hippocratic Oath: Counsel for the parents stated that the decision to offer the proposed experimental treatment would be consistent with the Hippocratic Oath.  I discuss this – and my current view on the case – in an article for the British Medical Journal.

The third was the mention by the parents’ barrister of a bioethicist, whose article was included in the family’s file of evidence to the Court.

The fourth was the decision to appoint a clinical ethicist to chair a Multidisciplinary Team meeting on Monday 17th July 2017.

It is no surprise, therefore, that ethicists have commented on the case.  As the court is not expected to make a decision until 25th July, and as we enter a quiet season for the media, many more commentaries will follow.

I attended part of the hearing in the High Court last week.  The room was packed with journalists, and the parties were well aware of this.  At one point in the proceedings, one barrister interrupted another and suggested that his submissions were misleading and an attempt to manipulate the press.  The judge agreed.  The hospital’s ‘position statement’, which a press officer handed to journalists at the lunch break, was drafted with the press at the forefront of the writer’s mind.  It would be naïve to think that the hospital, so reliant on donations, is immune from concerns about its reputation.

The most private of decisions about the future of a desperately ill baby has become more public that any other case.  So much so that that parties have become concerned about how their actions, decisions and submissions will be perceived by the wider public.  The parties are seeking to persuade the High Court, of course, but they also have an eye on the court of public opinion.

We, as ethicists, form an influential part of this court of public opinion, and parents’ decision to include a supportive article from an ethicist in their evidence can be seen as an attempt to bridge the two courts.

Unless practising as lawyers or doctors, medical ethicists have no professional code of ethics.  We nonetheless have a moral duty to act professionally in giving our opinions on cases such as this.

My experience of the hearing differed significantly from most of the press accounts, which focused on events such as the parents “storming out” of court or the judge’s frustration at the variable measurements of Charlie’s head circumference.  My professional gaze as an ethicist was directed at different features of the evidence than the gaze of the journalist.

Yet, we are often asked as ethicists to comment on cases based only on press reports.

Ideally, the ethicist should attend court himself to hear the totality of the evidence, but this is time-consuming and impractical.  In some cases, the hearing may be in Chambers and so not open to the public.

Second best is reading the court transcript, but again this is rarely available.

Next is reading the court judgment but the case may not be reported, or unavailable to members of the public.  Even when published, judgments contain only a fraction of the evidence presented at court.

Last, but probably most common, is reading press reports.

Our level of caution in giving opinions about a court case should reflect this evidential hierarchy.  Like spectators in a magic show, all may not be what it seems.

Daniel Sokol is a medical ethicist and barrister at 12 King’s Bench Walk.


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