Monday, May 28, 2018

Bioethics culture wars – 2018 edition: Alfie Evans

Here's my current Editorial in Bioethics

When health‐related tragedy befalls newborns, bioethical culture warriors are never far behind. The sad case of Alfie Evans1 seemingly opened up renewed campaign opportunities, and every opportunist, from the leader of the Roman Catholic Church to the Italian government, as well as a line‐up of minor academics, newspaper columnists and social media warriors, chimed in to score political points.
Publication cover imageAlfie Evans was as 23‐month‐old toddler suffering from a degenerative brain disease that led tragically to him eventually being in a semi‐vegetative state extending over more than a year. The specialists caring for him at the UK's Alder Hey Children's Hospital concluded that the boy suffered a ‘catastrophic degradation of his brain tissue’, and they asked for court permission to withdraw ventilator support, because in their considered judgement continuing ventilator support was not in the child's best interest. The parents fought the clinical judgement, both in the courts, and on social media. They travelled to Rome to meet the leader of, presumably, their church, the Pope. The Pope duly tweeted his support for the family, in line with his organization's categorical stance on the maintenance of human life, regardless of its quality. Among others, senior Brazilian staff members of the same organization issued a video message demanding that the UK government pay for the continuing futile care of Alfie Evans.2 Obviously Brazil's religious warriors had little else to do in their own backyard. Assuntina Morresi, a biochemistry professor and a member of the Italian government's National Bioethics Committee, posted a photo of the entrance to a German Nazi concentration camp with the accompanying headline: ‘Gran Bretagna oggi’ (Great Britain today).3 Professor Morresi is not alone: in a commentary, Charles Camosy, a theologian at a Catholic college in New York City, also tried to put the case in historical perspective by raising the spectre of the Catholic Church objecting to the Nazi euthanasia program for the disabled.4 Unsurprisingly these kinds of ahistorical missives are published in media aimed squarely at ideological fellow travellers, they are ideological echo chamber activities designed to mobilize one's troops. There is invariably much talk about disrespect of the disabled, as if there is no difference between a disabled child living a life worth living and a child whose brain has been irreversibly catastrophically damaged. Add to that a liberal amount of second guessing and questioning of the clinical judgement made by clinicians involved first‐hand in the care of the toddler by academics, activists and religious lobbyists with no clinical qualifications and no first‐hand knowledge of the facts of the matter.

Enter stage right: Ted Cruz. Not unexpectedly the United States’ best‐known culture warrior, Texas Senator Ted Cruz stepped into the fray with his own press release, likely less directed at Britain and more directed at his donors. He wrote (inter alia), that what was happening in the UK was a ‘grim reminder that systems of socialized medicine like the NHS vest the state with power over human lives, transforming citizens into subjects.’ This is utter nonsense, and, even if it were true, it's unclear how Cruz's preferred private healthcare system would change that situation, given that in a private healthcare system a for‐profit entity would decide how much money would be made available for the care of particular patients. Futile care typically is justifiably not funded ad infinitum by for‐profit health insurance companies either. Still, this minor detail got lost in the agitation and propaganda efforts by conservative U.S. politicians weighing in on this case.5

Remarkably, the government of Italy issued a citizenship certificate for the toddler to enable him to be treated in a Catholic hospital. Sensing how inappropriate this action was, the Italian Embassy in the UK stressed that the citizenship was merely meant as a signal to the court that the country would be willing to take him in should the UK court let him be transferred. That, of course, was denied by the court, precisely because nothing would have been gained for the boy by this activity.

A predictable consequence of the flurry of activism across the globe was that a sufficiently large number of activists was motivated to try to storm the hospital where the boy was cared for. Yes, they tried to storm the hospital! They even, for a brief period, managed to block an ambulance from entering the hospital. Without any sense of proportion, they call(ed) themselves Alfie's Army. No, I'm not kidding, army! Not terribly surprising: if you genuinely think that you are fighting a crime akin to the holocaust you will think about it in fairly militant terms. Agitation and propaganda have consequences.

I appreciate that well‐meaning people can hold different views on cases like this. One could, for instance, argue that if parents – or their supporters – are willing to pay for futile care provided to patients like Alfie Evans, the state should leave it to parents to decide what is in their children's best interest. It is not a view I would support, because I would be concerned that parents in such situations are vulnerable to making choices that satisfy their own psychological needs, potentially at great cost to the children whose best interest takes a backseat. If futile care is joined by additional suffering visited upon the patient (it is unlikely this was the case with this patient), such decisions should not be left to parents alone to decide. It is arguably unfair to leave grieving and distressed parents with the burden that such decisions entail. However, this certainly is a legitimate question to ask and it is one where well‐meaning, well‐informed people can agree to disagree.

What is unacceptable for anyone who wishes to engage in these debates, is to abuse such catastrophically ill children for their own ideological conquests and culture wars. Nothing of what happened in Britain (and other countries like it) has anything at all to do with what happened in Nazi Germany. Such ahistorical comparisons are deeply offensive to the victims of the holocaust.

UK bioethicist Iain Brassington, to my mind, hit the nail on its head when he wrote in a commentary, ‘what we see here is a child being bounced around to satisfy the desires of a number of adults.’6 Politicians, leaders of global religious organizations, and academics ideologically aligned with the latter have reason to reflect on the morality of their own actions, that is the abuse of tragedies like Alfie Evans to promote their own ideological agendas.


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