A number of authors have captured the ethics, emotions and medicine evoked in the Charlie Gard case(1,2,3,4). However much of the narrative centres on the dilemma where parents disagree with doctors on the matter of best interests. However this case really turns on how parents and patients respond when doctors disagree as to what constitutes the best course of action. The parents' stance was predicated almost exclusively on the offer from the American professor of neurology that he may be able to improve their son's quality of life(3,4). Similarly hospitals both in Europe and the USA offered to care for the child, Charlie; further reinforcing the notion that this course of action was not medically futile(3,4). Had the professor advised the family that his techniques were only experimental and the chances of any clinical improvement were from zero to negligible, it is inconceivable that the parents would have pursued a course of action to keep their son alive, with no prospect of amelioration of his condition.
There can be the popular perception that science consists only of incontrovertible truths, when there is disagreement, both sides of the argument must be viable alternatives, rather than one being necessarily inapposite, inferior or incorrect. However doctors disagree on a host of matters; most recently the appropriateness of near global statin therapy for men and women over 60 and 75 respectively or, for example, the need for mandatory immunisation(5,6). There is even no unanimity on traditional medical dogma such as the utility of bisphosphonates(7). Patients will invariably affiliate themselves to one side of a medical argument, and pursue that. If the debate is public, as in this case, eminent political and religious figures will equally align themselves to one side and eschew the other. To suggest that public opinion is only a manifestation of ochlocracy is in some ways a misrepresentation. The debate is only nubile in the public arena as two rival medical prepositions are presented. As a profession we must learn how best to engage with patients where there exists disagreement between doctors and lack of consensus within the profession. The age of paternalism, where patients are excluded from the debate, and effectively told "be quiet sweetie, mummy and daddy are talking"; is dead. The seminal case of Montgomery v Lanakshare Healthcare Board 2015 was the fatal injection for this attitude(8). However intriguingly where there is a dispute in medical opinion, as a profession, is there a tendancy to revert to a Bolamesque paradigm, where the patient has to comply with what the main or most influential body of the profession believes is best?
In 2014 the British Medical Journal published an instructive piece on an analogous case entitled "Lessons from the Ashya King case"(9). In this case, which also attracted significant global interest, doctors in the UK and Europe disagreed on the use of proton beam therapy. Ashya's parents took him from hospital, with a view of submitting him for such treatment in Europe, however this was without notifying his healthcare team. They were ultimately arrested and incarcerated. The general consensus what that this response was disproportionate and the parents were released(9). The child eventually underwent photon therapy. Again the BMJ piece centred entirely on disputes between families and their care teams. However, as in the case of Charlie, this disagreement only had force because there was no consensus amongst clinicians. It would appear that there are still lessons to be learnt from the Ashya King case; not least of all how to involve patients in the decision-making process when doctors disagree. Even further we must introgress some medical method into the legal profession such that it gains a greater appreciation of how to integrate conflicting medical evidence into the deliberative process. As a profession, if we fail to find a formula to address these polemics the courts will increasingly be the arbiter of medical disputes, which has, in the past, resulted in some verdicts which seem somewhat antithetical to our profession(10).
1. Wilkinson D Restoring balance to “best interests” disputes in children BMJ 2017; 358
2. Hurley R. How a fight for Charlie Gard became a fight against the state BMJ 2017; 358
3. Truog RD.The United Kingdom Sets Limits on Experimental Treatments: The Case of Charlie Gard. JAMA. 2017 Jul 20. doi: 10.1001/jama.2017.10410
4. Sokol D. Charlie Gard case: an ethicist in the courtroom. BMJ. 2017 Jul 19;358:j3451
6. Moberly T.UK doctors re-examine case for mandatory vaccination.Wise J.Teenage boys shouldn't be given HPV vaccine, says joint committee. BMJ. 2017 Jul 20;358:j3523 BMJ. 2017 Jul 18;358:j3414.
7. Järvinen TL, Michaëlsson K, Jokihaara J, Collins GS, Perry TL, Mintzes B, Musini V, Erviti J, Gorricho J, Wright JM, Sievänen H.Overdiagnosis of bone fragility in the quest to prevent hip fracture. BMJ. 2015; 350:h2088.
8. Chan SW, Tulloch E, Cooper ES, Smith A, Wojcik W, Norman JE. Montgomery and informed consent: where are we now? BMJ. 2017 May 12;35
9. O'Brien A, Sokol DK. Lessons from the Ashya King case. BMJ. 2014 Sep 10;349:g5563
10. Dyer C. Courts can decide that vaccine has caused harm despite lack of evidence. BMJ. 2017 Jun 26;357:j308
Competing interests: No competing interests