The Uses of Alfie Evans

The Uses of Alfie Evans April 27, 2018

There are, in this world, two ways in which the tragedy of Alfie Evans is approached.

The first is to ask “What is the best way Alfie Evans can be helped in the remaining days of his life on earth?”  That is, I believe, the only question that matters and the guiding principle that should be at work in giving him care.  Those with expertise and responsibility for that care should busy themselves with it.  Those who know nothing about him, his condition, his family, medicine, or anything else should be praying for him (assuming they pray) or doing whatever it is you do if you have no God to pray to.

The second is, in one way or other, to sublimate or ignore that question in the service of some other thing that you want or in defense against some other thing that you fear.  If you choose this second route, be aware that, whatever you say, you are, in fact, using Alfie Evans, not caring about him.

And the overwhelming percentage of the commentary I have seen on Alfie Evans is firmly in this second camp. Alfie has become a tool for attacking culture war enemies, a totem invoked by libertarians who want to attack the state, a litmus test for Moral Prolife Purity, a stick to beat heretics with, and a thermometer for taking the spiritual temperature of those vehemently suspected of Liberal Cooties.  He is even, dementedly enough, a talisman for the Gun Cult:

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The lunatic vision of somebody shooting their way through an airport and mowing down hundreds so they can board a hijacked plane in pursuit of a “prolife” culture war victory is a fitting emblem of the madness of the Christianist stampede and panic that has overtaken this tragedy.  For most of the commentariat, Alfie’s good don’t enter into it.  It’s about venting their hatred at somebody or something else.

F’rinstance:

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This is in response to my brief discussion yesterday, where I described the weird refusal to just accept the fact that I had no view of the case at the time since I had no knowledge of it, nor expertise in the fields necessary to have anything like a worthwhile opinion.

My point was this: if you come to me and ask my view about why your car is making a weird noise and I tell you, “I don’t know.  Ask somebody who knows about cars” and you persist in asking me and then start accusing me of being wilfully ignorant about cars and suggest that I am morally culpable for refusing to help you fix your car, I quickly get the impression that you aren’t really asking because you want to get your car fixed. You are asking because you are are a weirdo who dislikes me and are seeking some way to attack me for some bizarre reason.

Same here.  The discussion I chronicled yesterday was clearly not focused on “What is the best way to help Alfie Evans?” because when I said “I don’t know.  Ask somebody with the relevant knowledge of the case and the medical know how to discuss his course of treatment” that was not good enough.  It very quickly turned into a trial and the rhetorical goal of the conversation was to find me guilty of approving of euthanasia.  Alfie, in short, was being weaponized.

Here is another sample of the weaponization of Alfie, by perhaps the single worst and most weaponizing “prolife” Christianist it has ever been my misfortune to encounter:

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Note how remote this is from the question “What is the best way to help Alfie Evans?”  This is simply and solely about assuming that anybody who is hesitant about what to do, or does not join in screaming that his caregivers are devils in human form is “complicit” in murdering him–as though it is self-evident that these claims are true.

But none of these things are self-evident.  What is self-evident, and a matter of loooooong record for the Right Wing Noise Machine and the discernment-free subculture of Christianism, is the continual use of Panics du Jour to stampede the right wing base and compel conformity.  So over the past few years we have seen:

In fact, this is a tiny sample of the  Moral Stampedes and Panics du Jour to which Christianism is perpetually prey.  It is how Christianist moral navigation is normatively done.  Everybody in the Right Wing Noise Machine screams in unison about something–whether it is the Goodness of Going to War in Iraq, the moral acceptability of torture in order to save us from the imaginary ticking time bomb, or (as in this case) the Undeniable Truth that Alfie Evans caregivers have all suddenly become moral monsters after struggling to keep him alive for 14 months.  Then groupthink hivemind rage, not information, facts, or evidence become all that matters.  And those who are reluctant to join the Panic are not to be educated, but denounced as, in my case, a Land Whale (because fat insults are super-relevant) and a “heartless ghoul” (because I don’t have facts or expertise and therefore keep silent till I have some idea what is going on).

Still and all, Paul says we are not to be “infants, tossed back and forth by the waves, and blown here and there by every wind of teaching and by the cunning and craftiness of people in their deceitful scheming” (Ephesians 4:14).  And nothing strikes me as more infantile than Christianism’s impenitent habit of being stampeded and panicked, and its impatience with those of us who want to know what is happening before we make up our minds about it.

So, given that I would rather have one expert with actual knowledge than ten thousand hysterics calling me a baby-killer if I didn’t fall in line with their moral panic, I turned to Dr. Jacqueline Abernathy, Catholic prolife bioethicist and doctor with anti-euthanasia credentials as long as your arm.

Here’s what she says about the case:

Everybody is right to be suspicious because the UK has a reputation with this sort of thing. They do deny feeding tubes. I can give you names of children that they denied ordinary care to including just antibiotics. They also created the Liverpool pathway which is just a way of overdosing ill people on barbiturates to hasten their demise.

That’s just not what’s going on here. This is not a difference of opinion between experts that think there is hope and those that don’t because if that was the case those that don’t would just transfer care to them that do. In this case all the experts agree that there is no treatment they can propose that offers benefit. Those that can’t propose any treatment but want to subject Alfie to transport want to add two minor surgical procedures for that purpose (trach and PEG tube). So they want to subject him to more treatment that does not increase his comfort nor help him recover. There’s also doubt about whether or not he is suffering in the meantime from seizures. So the dispute is between the doctors responsible for his care not being comfortable turning Alfie over to doctors that can’t offer anything beneficial but more potential suffering.

This is actual information, informed by both medical expertise *and* by Catholic ethics.  Jacqueline goes on to add:

I actually support a transfer! I feel like there’s enough pain control that maintaining the status quo long enough for the parents to come to this decision on their own is the right thing to do.

My problem was how grossly misrepresented this entire affair has been. I was trying to explain why the doctors have the position they have and why it is a completely reasonable position. I agree with them and there would not have been a dispute if it were my child.

Because I agree with them on an individual case basis here does not mean I agree with them refusing to transfer care. I understand why but I don’t agree with that. I’ve also condemned the NHS tooth and nail on just about every other case.

Jacqueline explains elsewhere that we need to navigate between a Scylla of Euthanasia and a Charybdis of Dysthanasia in this case.

Euthanasia means actively killing somebody, not letting nature take its course.  So if somebody is dying it is not euthanasia to take them off a ventilator and let them breathe on their own for as long as they can.  It is euthanasia to smother them with a pillow or strangle them to death.   In the same way, she notes that, for instance, when somebody can no longer take water or nutrients (as for instance, my mother in law could not as she was dying) it is not required by Catholic moral teaching to force-feed them.  The point is that there is a difference between letting nature take its course and making people die.

So Catholic teaching does not and never has said that medical science is bound to use any means necessary to prolong life, no matter how painful and inconvenient to the dying person. The panic to do just that is what results in dysthanasia: pointless, artificial prolongation of life when it is better and more respectful to the person to let nature take its course.

Now, as has been pointed out, the course of treatment that was proposed by the Italians was not something that is going to change or improve things for Alfie. It was simply going to punch a hole in his trachea and another one in his abdomen.  There is no course of treatment that will improve things for him.  He is not going to get better.

At this point, two things come up: the Pope’s intervention and the wishes of the parents.

Regarding the pope’s intervention, as I mentioned yesterday, I revere the man and think it is obvious he is doing the Christian thing in offering to help in any way he can. What is not clear to me is that taking the child to Italy accomplishes that.

The irony of the situation is that, for the sin of thinking that, I was sarcastically denounced by one of the Litmus Testers in my comboxes yesterday, and it is worth paying attention to it because it illustrates perfectly my point here that most of the discussion has no interest in the only thing that matters–what is best for Alfie–but is instead focused on using Alfie for the culture war obsessions of “prolife” Christianists.  The reader began by quoting me (in italics):

“When I tell you I don’t know enough about something to have an opinion, believe me.

And for the love of God, *stop* using a dying child as a tool to attack somebody you think needs to be charged with heresy. You make crystal clear you don’t give a shit about the child except insofar as he is a useful stick to beat a heretic with. Employ yourself praying for the child, his parents, and all those seeking his welfare, not with sniffing out imaginary impurities in my soul.
Comprende?”

Good advice. Now please apply it to yourself vis-a-vis the gun debate.

Be more pro-life, not less. Why are you fighting the Pope on this, Mark?

***

When Catholics make perfectly legitimate criticisms of the Pope’s statements on capital punishment, Mark lashes out and accuses them of “opposing the pope.” In this case, the Pope has come out clearly in favor of the parents’ rights to seek additional care for Alfie, and Mark is saying that he doesn’t know if the Pope “is right”.

And you’re correct, the gun control issue is not equivalent to this issue. The Church has clearly defined teaching in regards to the appropriate methods of end of life care and the rights of parents (see Rerum Novarum), but has no such teaching in regards to gun rights.

Note the tactic: no interest in Alfie’s welfare, but lots of interest in snarky culture war gotchas via fallacious argument.  That is the norm for this whole moral stampede.

In reply, I say the following.

First, the issue is what is best for Alfie.  Period.  That’s all that really matters here.

Second, it is ironic that the same subculture–which has, for five years, denounced the pope as, (in the words of Timothy Williams of Franciscan University of Steubenville) a “socialist fool”, that has charged him with being secretly “pro-abortion“, that has obsessively indicted him as the enemy of the family, wasted years calling him a heretic, and reflexively attacked those of us who just don’t buy that moral panic as “ultramontanists who believe the pope is infallible about everything”–that same subculture is suddenly condemning people as “fighting the pope” for saying “I have no confidence that his well-intentioned prudential judgment is actually what is best for Alfie.”  The lying cynicism here is quite breathtaking, but par for the course for Christianist bullies and culture warriors.

Third, and also typical of the Christianist culture warrior, is the ridiculous attempt to, yet again, drag in Gun worship *and* death penalty adoration.  The phony attempt to say that responding to gun slaughter with calls for prevention of future slaughter is “using a dying child as a tool” is particularly disgusting given the Gun Cult’s two month long campaign to first shut down all discussion of gun reform with the standard “It’s too soon!  Respect the victims!” lie coupled immediately with their malevolent and repulsive attack on the Parkland victims when they spoke out against the Gun Cult.  Those of us who want meaningful change in our gun regime do not go around sniffing out heretics and quizzing them on their purity.  We simply say, “We support the Parkland kids” and find ourselves declared to be liberal babykillers and gun grabbers who want the terrorists to win and who support “crisis actors”–and by the same Purity Testers who are now pretending to care about Alfie.

Finally, regarding the “clearly defined teaching in regards to the appropriate methods of end of life care and the rights of parents”, this takes us to the next point: namely that the question, yet again, is about “What is best for Alfie?” and here is where things get tricky and touchy.

It is true that the Church prefers to emphasize parental rights as a general rule (hence Jacqueline’s comment about preferring to let the parents have their way and transfer him even though, were it her child, she would concur with the British doctors. And hence the pope’s pleas to let the parents have their way).

But here’s the thing:  most of that discussion in the Right Wing and Christianist media is not conducted with a view to the only question that matters: “What is best for Alfie?”  Rather it is conducted with a view to loudly advancing a Right Wing Culture War narrative of individual rights vs. The Evil Socialist State.

In that narrative, what is routinely asserted is the unquestioned dogma that Parents Always Know What is Best For Their Child and the State Wants Total Control and is Bent on Killing Sick Kids.

But in reality, there is no evidence that any of that is true here. None.  There is no evidence that desperate parents have a charism of Total Medical Understanding (though there is copious evidence that parents can and do make disastrous health decisions for their kids such as anti-vax nonsense, or refusal of blood transfusions, or denial of surgery).  That does not mean Alfie’s parents are wrong to want to take him to Italy.  But it does mean that the instantaneous declaration by the bulk of the Christianist Right that his caregivers are devils in human form, the living incarnation of despotic power and bloodthirsty killers is an outrageous and baseless slander.

The simple truth, never confronted by the Culture War Panicmongers is this: for 14 months his caregivers have labored to keep him alive.  Why would they suddenly transmogrify into “heartless ghouls” bent on murder?  And where is the evidence they have? Contrary to Mr. Dalton’s claim, nobody is starving Alfie to death.  He has food.  He has oxygen.  He has hydration.  There is no evidence, none, of a conspiracy to kill him.  And there is zero evidence of an alternative care plan in Italy that will help him.  As Dr. Abernathy notes:

When I got started on my crusade I believed all of these anti doctor conspiracies that it’s all bigotry against the disabled. Then I dealt with enough disputes to realize that doctors with no ethics will just do anything parents demand so they don’t have to put up a fight. Doctors that are scrupulous will fight to do the right thing for their patients even if it means people are calling them murderers. Once you get a scholastic objective view of what’s really going on it kind of shows how absurd it is to believe that entire groups of doctors have a vendetta against a child.

But it is in the interest of Right Wing Culture Warriors in the US to promote such narratives, and for very cynical reasons: namely, to make war on Obamacare and gin up hysteria against “socialized medicine”.

The irony, of course, is that if the “Socialized Medicine is evil” crowd got their way, Alfie would have been dead long ago and his parents bankrupted, forced to busk on the internet in the hope that somebody would crowdfund the millions necessary to maintain his care for 14 months. And the number one enemies of that level of care being paid for by the state are the “prolife” conservative Christianists denouncing the people who have kept him alive–for free–in the UK.

And Italy, whither the Railers Against Socialized Medicine want to send him to save him from Socialized Medicine?  It has Socialized Medicine, like all civilized countries.

But the Culture Warriors aren’t interested in that because they aren’t interested in Alfie.  They are interested in using Alfie to score off “liberals” and socialized medicine and gun grabbers and land whales and whatever else. They ask questions like “Why Aren’t Liberals Outraged About Alfie Evans?” under the blithe assumption that a) liberals don’t care about Alfie Evans; b) if you are not outraged you are a liberal who does not care about Alfie Evans; and c) the reason you don’t care is that you are (as one FB culture war circle jerk declared) “lovers of death”, “pro-aborts” and fanatical partisans of an all-controlling Nanny State you love more than life itself.  So they simply concoct a narrative of Killer Nanny State Doctors vs Parents Who Know What’s Best that bears no relationship to reality.

What is real is desperate parents doing their very best, doctors doing their very best, courts doing their very best–and a mob of culture warriors exploiting it for their own various agendas having very little to do with the only question that matters: “What is best for Alfie Evans?”

The proof of this comes, most stomach-turningly, with the heart-breaking statement from Alfie’s parents and the response of the Culture Warriors:

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The response from the FB Tea Leaf, Mind, and Soul Readers?

He is being threatened and or blackmailed. He is being forced to do this. Do not stop fighting for this child.

***

Don’t talk rubbish this had clearly been written by the hospital! He’s been forced to say this or they keep his son! Moron

***

I hope your child doesn’t end up at alder hay. Really with this “all they have done” they’ve tried to murder him at every turn!

***

Quite sickening actually that someone in this day and age is forced to say things that they don’t mean. Total Nanny state. Free country my arse

And so on.  The overwhelming consensus on the FB page where this announcement is found is that his parents are brainwashed/have had their wills broken by the black-hearted Satanic Care Team/are acting under duress, etc.  They cannot actually mean what they say.

And if, God help them, it becomes clear to the Culture Warriors using them that Alfie’s parents do mean what they say, the backlash will be even more vicious than it was with the Parkland kids once they ceased being victims the Gun Cult could use to silence protest and started being active agents who did not conform to the Culture War Narrative.  If Alfie’s parents build that bridge to the hospital and say publicly that the care team does, in fact, intend Alfie’s good and are not murdering fiends, the Culture Warriors will, I fear, viciously crucify them as surely as they crucified the Parkland kids.

At the end of the day, and looking at the facts, it seems plain to me that this story is a tragedy, not a travesty.  There is only pain here–and decent people under immense strain trying to do what is best for a boy who will never get well.  There is no “better” course of treatment for him according to every doctor who has taken up his case, whether in Britain or Italy.  There is treatment that doesn’t punch holes in his trachea and abdomen and treatment that does.  His care team see no benefit in that and I see no reason to call them heartless killers for that.

Now that his parents have made the decision above, it seems to me the best course of action is to do what all of us with no information, no expertise, and no responsibility for his care should have been doing all along: praying for all involved, avoiding the culture war hype, refraining from weaponizing this boy, and asking God’s will be done.

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