Restoring balance to “best interests” disputes in children
BMJ 2017; 358 doi: https://doi.org/10.1136/bmj.j3666 (Published 02 August 2017) Cite this as: BMJ 2017;358:j3666
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Personally, setting aside a lot of dubious assertion on social media about things such as 'state control' and 'euthanasia', I think this case made it very clear that the legal situation for arriving at decisions in this type of situation - 'best interests' - is not a description of 'a process of shared decision-making'.
The process requires multi-party discussion, and the hope is always that an agreed-by-all and 'good' decision is arrived at: not 'shared decision-making' to my mind, but informed discussion with at its end the same decision being arrived at by all of the involved parties. When the process does not end in agreement, an appeal for a court ruling removes any suggestion that the decision-making is 'shared' because it becomes the judge's decision: a single decision-maker, who must therefore agree with his or her own decision.
My point: I feel sure I will be reading suggestions about how to improve 'shared decision-making', but in the end we will still need recourse to something which decides when different positions are held by families and clinical teams.
And I think, in our social-media age when parents have realised the power of 'getting our story out there', that there will need to be a change to address this problem the authors pointed at:
'Another possible solution would be to allow (or require) medical professionals to make public the evidence on which they are basing their decisions. That would enormously increase transparency, and help ensure that any wider discussion is based on relevant and verifiable facts. It would, however, breach the child’s confidentiality.'
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Viewed in retrospect, the matter reaching the court and acquiring public attention and debate might be a positive development in resolving bioethical issues of complexity. Understandably the medical team and the treating hospital had to face criticism from uninformed and less knowledgeable parties, tied as their hands were by the requirement to maintain confidentiality. Bioethical dilemmas that confront physicians (who may be less formally trained in this aspect) are indeed complex; shared decision making is the most important component but may fail when expectations and hopes are high defying the clinical reality. It may be crucial that relatives do not develop a feeling of being abandoned. (1) Finally the judiciary may seek information from bioethical experts prior to final consideration and judgment in such complicated matters where developments in science may offer hope but not necessarily a cure.
Prof ME Yeolekar, Mumbai
Reference
1. Yeolekar ME, Mehta S, Yeolekar A. End of life care: issues and challenges. J Postgrad Med. 2008;54:173-5.
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My compliments on a very balanced analysis of the issues involved. In my view, once the family (parents in this case) decide to go public, privacy laws and the principle of medical confidentiality automatically cease to apply. A good deal of acrimony could have been avoided had the Great Ormond Street Hospital elected to go public earlier on in the discourse, though their hesitation in this regard is understandable and their restraint admirable. As for the ill informed, not infrequently publicity mongering 'experts', the less said the better. 'Father forgive them. They know not what they do'.
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In recent days inadequate knowledge gathering through the net and social media may mislead people in many ways regarding the medical management of diseases and looking after terminally ill patients. People may request the treating doctors or the insurance company or the government to prolong the life of their patients as in this case till a newer line of treatment, with or without drugs available.
So a permanent a committee with judicial and medical experts should be formed at district, state, natonal and international levels to make the final concrete decision in cases like this within a specific period of time.
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Perhaps it would be quicker if Judges worked the same hours as Consultants and other doctors rather than their 1000 -1600 hours sittings. This also includes weekends like many of the readers of this comment
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This sort of discussion and decision making is extremely complicated and may be unequivocal. I agree with the statement that awareness of all the clinical detail and understanding the arguments is essential for participation in such kinds of discussion. The balance between privacy and publicity is very important. The child's sake should have first place. I'd say: as much privacy as possible at the same time without limiting the circle of real experts and authorities who may be really helpful.
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In the headline for this excellent piece I would have replaced "surely" with "not". When the court of public opinion's flames are fanned not just by medical professionals who are uninformed, but by high-profile public figures who are not only uninformed but have no experience of the complexity of such cases, it is inevitable that heartbreak will result. Is it too much to ask that political and religious leaders at least acquaint themselves with the facts before making wild promises?
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When Doctors Disagree: How Do Patients Decide?
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
5. https://www.doctors.net.uk/News/Article.aspx?newsid=26753
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