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Sometimes, squares just don’t fit
‘He’s doing it again’—what a cryptic way to launch into what should be a gentle, easily digestible wind down as the year draws to a close. Perhaps though, not as knight’s move as it first appears: let’s go back a step or two.
Without over generalising, school days (and I’m including university) are largely about facts. Not just the accumulation and retention of ‘facts’ but the nurturing of the ‘fact as truth’ myth. Harsh maybe, but (think of the pre-Copernican view of the galaxy) while science opens doors, its bluntness (or at least lack of precision) as a tool is exposed in situations inherently insoluble from an empirical standpoint. There’s an expression in Swedish, ‘kantig’, derived from ‘fyr kantig’ meaning 4-sided or, literally square/literal/inflexible: the sorts of examples to which I’m referring are those where being ‘kantig’ (an advantage in many fora) simply doesn’t cut the mustard.
‘Expand your thesis’ you rightly demand, and I can think of no better way of doing so than referring to the poignant scenarios in this issue. They are very different but share a thread in that resolution was achieved in each by doing least harm to the each of the (excuse the lapse into tautology) competing protagonists. Solutions to each situation of equipoise was unanswerable by standard randomised controlled trials, but resolved by listening, discussion and weighing with scales uncalibrated in standard units. In short, the way forward depended on a collective human spirit.
Extrapolating this theme, I’ve spent a sizeable chunk of my life physically in or involved in work in urban and peri-urban slums in Asia, Oceania and North Africa. For reasons I can’t fully explain, I feel very alive, very happy and very at home here. These are settings in which there is a dearth of tangible solutions to many of the inherent problems, but in which, somehow, human spirit and resilience overrides the obstacles, a lesson to those of who ‘kantig- esquely’ curse the 5 minute delay in departure of the usual homebound evening train or equally trivial disruption to routine.
We’re all familiar with the scenario: a leukaemic child with an encouraging initial response to standard chemotherapy; the reappearance of blasts a year later; the subsequent bone marrow transplant; the (other than suppressant side effect) trouble free hiatus which uncannily marked by a family anniversary is abruptly book ended by the reappearance of the now all too familiar petechiae. Palliation is discussed but the parents cannot countenance not exploring curative options and alternative opinions are sought. This is often the stage at which medical tourism, the search for treatment unavailable in the NHS/state/provincial service is pursued. Sometimes (and I’m leaving cost out of this discussion, though of course it is part of the equation) what’s on offer appears attractive: sometimes (and I suspect this applies to most cases) it is blatantly not. Apart from lack of licensing, evidence, there are usually reasons for non-provision in mainstream services.
Should the family choose to explore this option, however ‘snubbed’ one might feel, we can’t absolve ourselves of the responsibility of helping them make a well informed choice (and this sea is full of sharks) once the decision is made to explore alternative options.
Giles Birchley and the RCPCH ethics group put the issue, realistically, one that is only going to expand, into perspective. See page 1143
Viability: part 1
The ethical ‘tightropery’ doesn’t end there. Rob Wheeler’s latest legal labyrinth poignantly recalls the, still relevant, painfully debated issues around a pair of conjoined twins, of which one did not have the circulatory capacity to survive more than a few months and the other, in the face of no intervention bound to succumb immediately afterwards. See page 1158
Viability: part 2
Finally, John Lantos’ wonderful editorial dissects the old arguments around care for sub 23-week gestation deliveries. In Sweden and Japan, this has for a long time involved an active approach and the refreshing recent stance in the BAPM guidance on the issue is a real sign of moving forward with this debate. Populations, of course, differ in response to interventions, but medical science has also moved forward. See page 1155
That’s all for now.
Hope you can reflect on 2021 with fondness.
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Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Commissioned; internally peer reviewed.