Teaching medical jurisprudence and medical ethics after Charlie Gard

By Agomoni Ganguli-Mitra
 
When I started working at the JK Mason Institute, back in 2014, it was immediately clear to me that colleagues were dedicated to keeping the legacy of Professor JK Mason alive, both in the academic and social fabrics of the institute. Even those of us who had never had the good fortune of meeting him in person recognised that Professor Mason’s vision was alive and thriving, both in the research and teaching community at the School of Law. Early in my appointment I became involved in teaching on the Medical Jurisprudence courses offered by the Mason Institute. This was an exciting beginning for me, having had very little training in law. At the same time it was considerably intimidating, given that colleagues who co-taught on the course had either trained, or had worked for many years with the illustrious pioneer of medical jurisprudence. My fears of course were entirely unfounded, given that in keeping with Professor Mason’s understanding of the crucial and difficult relationship between law and ethics, I was very much encouraged and supported in developing the ethical aspects of the course. Medical Jurisprudence, as its title suggests, is a course that attempts to capture the symbiotic nature of teaching medical law and bioethics together, blending theory and practice across the range of issues arising from modern medicine.

Earlier this summer, as I thought about the teaching year ahead and considered the lessons learned, I closely followed the developments surrounding the heart-breaking case of Charlie Gard. I will not offer yet another professional ethicist’s opinion on the case here, not only because commentators have done so far more eloquently throughout the case, but also because the ethicist and the parent in me violently clash on aspects of Charlie’s story and are yet to come to an agreement. Although cases like Charlie’s are not as rare as one might think, the manner in which the case became an issue of public opinion and campaign (parts of which were frankly deplorable) was striking. So was the fact that it was at times strangely co-opted by politics and the media, who often seemed to wilfully ignore facts—and, in keeping with the times, experts. Among the cacophony of popular opinions and twitter storm – which could not possibly have helped Charlie’s parents in these testing times—we might easily forget that behind such cases are not only devastated parents, but dedicated, conscientious professionals, and courts that are asked to make very difficult decisions. Self-evidently, a variety of interests are at play. The case highlighted the complexity behind terms much used in medical law and medical ethics: best interests and harm; the crucial role of the courts in medical decision-making and the rights of parents; the very difficult area of experimental interventions, medical tourism (and the associated questions related to jurisdiction), as well as hidden (financial and professional) interests behind such interventions. The case also further problematized the role of trust, evidence and expert opinion in matters that nevertheless affect human lives and deeply-held values. Importantly also, an aspect that was often less discussed (probably rightly so) while the case was ongoing, is the difficult relationship between autonomy, interest and justice in access to care and the distribution of scarce medical resources.

Unfortunately, Professor Mason passed away earlier this year and I am not sure of how he would have interpreted what seems to be a change in the profile of medical ethics, accelerated by social media, towards a reality where public, medical and legal sensitivities clash into a public forum. I understand from my colleagues that Professor Mason was not only a deeply empathetic man, but also a self-confessed communitarian. As such, I wager he would have strived to reconcile both the public and private interests in play to support a just outcome; he would have been very aware of the long line of precedents laid down in such cases, on which he himself wrote 25 years ago. He would not have wished Charlie’s case to be seen as an isolated incident.

Much as we might like to let Charlie’s case rest in peace, students taking medical jurisprudence this year may well have questions and opinions about it, and we should be prepared. Beyond pointing them to a wealth of resources on the case, there are certainly a few things that I would like to clarify to students: that while differing values must be acknowledged in a pluralistic society, ethics is not a matter of opinion; that there are such things as good and bad arguments, better or worse reasons; that rigour in conceptual analysis is crucial to both ethical and legal debates; that experimental interventions perfectly illustrate the need to understand both research and medical ethics, as well their core values; that while we might agree on the procedural aspects of the law, we might still disagree about its ethical underpinnings, and while legal decisions may appear to be purely procedural and neutral, they are almost inevitably and invariably based on substantive ethical positions (i.e. that while we might speak of thresholds and chances, we still have to decide what an acceptable threshold or chance might be); that the clash between personal moral intuition and professional moral deliberation is itself a site of learning for students of ethics and law. Ultimately, our aim as teachers is to help students become thoughtful citizens and professionals. The medical jurisprudence course goes to the heart of our core values and emotions, and is therefore a delicate but fulfilling platform from which to do just that.