The case and death of Alfie Evans raises issues that must be addressed

Any genuinely comprehensive review of the case of Alfie Evans would require many months and significant resources, not to mention the willingness of his parents, attorneys, doctors, and judges to sit for extended interviews. Our desire to know is powerful, as is our desire to blame. The cold comfort of finger-pointing is often more attractive and alluring — even seductive — than any alternative, especially when we have been given to feel that something terrible has happened. We want a villain to be responsible for the evil that visits the world. This desire is the more difficult to resist when resistance is needful, precisely because there are villains in the world and they do need resisting when and where we find them.

For now, we resist the temptation, and limit ourselves to consideration of the two major issues this unfortunate case has raised.

Crisis of confidence

The first issue is the crisis of confidence in the profession of medicine, which arises from the ethical standards that have come to govern medical practice across what we may call “the West” for short. The standard of “quality of life” with regard to medical care generally is a pertinent example. The standard has entered the medical profession by way of a sort of mission creep, related to the development of medical technology and technique.

As a guiding criterion in making specific care path determinations once the decision to treat has been made, “quality of life” actually makes a good deal of sense. When risks and benefits are weighed — questions from whether to repair a joint or replace it altogether, to what kind of heart procedure to attempt — do genuinely turn on a patient’s prospects for returning to normal life. It does not perform nearly as well when it is used as a standard against which to measure final decisions on whether to treat in the first place.

Bodily health has been the end of medicine since its practice as an art began. It continued to be the end of medical practice when medicine developed into a science. The reason civilization has devoted so much expense of time and treasure to the pursuit of bodily health — including the pursuit of bodily health through medicine — is that being alive is good.

Tragically misguided medical ethicists have made “quality of life” a controlling criterion for determining whether to give care, and — in some places, like The Netherlands — even applied the standard in a way that leads medical professionals to participate in the deliberate termination of life. In jurisdictions like Iceland and Denmark, somewhere between 95% and 98% of pregnancies returning a positive result from a Down Syndrome screen end in termination. That sounds a lot nicer than lebensunwertes leben, but that is what the standard means practically when applied in such ways.

Due to a complex confluence of reasons, many of our societies have moved away from the conviction that life is a good, and the medical profession has gone along the same path as the societies in and for which it operates. When knees and elbows are in play, the consequences of this distancing are not often easily perceptible. Sometimes, however, people get very sick, indeed, and doctors do not know how to heal them, or even what is making them ill.

In such circumstances, “quality of life” is not a reassuring standard for people who are jealous of their lives and those of their loved ones. In an essay examining the issues involved in the case of Charlie Gard — in some respects a similar case, though drawing the similarities with too much celerity or facility is ill-advised — I put the matter this way:

In the midst of all this, there is a crisis of confidence — one might even say a crisis of faith — in the medical profession, arising from the direction in which medical ethics throughout the West have turned. Essentially, the medical profession — sometimes under the pressure of politicians and bureaucrats, sometimes more pro-actively — has distanced its practice from the core conviction that life is a basic and irreducible good, to which patients have an inherent and inalienable right, which right must be defended at all costs and against every usurper — even the one who possesses the good, hence the right to it.

Nota bene: the right deserves protection at all costs: the good itself is perishable, and when the good itself, from which the right arises, is in precinct of expiry, there are inevitably hard decisions to make, which for their right making depend on the clear and cloudless vision of the goods at stake and of the rights that arise from those goods.

We sense, we feel viscerally — even if not all of us are always able to articulate it — that something is not right in our stance toward life itself, and this makes decisions at what may well be the end of life even more difficult than they already are. At the very least, we want to be able to entrust our care and that of our loved ones to people who are not on the fence about whether life is a basic and irreducible good. If we do not recover that fundamental conviction and unambiguously enshrine it in law, the corrosion of our public institutions will continue apace with that, which has already done such grievous harm to our public spaces and counsels.

Distortion of the “best interests” standard

The second thing complicating this matter (and similar matters) is the distortion of the “best interests” standard. The president of the Supreme Court of the United Kingdom, Baroness Hale, laid out the jurisprudential grounds for that distortion in the Charlie Gard case:

[Gard’s parents contend that] In this sort of case the hospital can only interfere in the decision taken by the parents if the child is otherwise likely to suffer significant harm. But that apart, it is argued, decisions taken by parents who agree with one another are non-justiciable. Parents and parents alone are the judges of their child’s best interests. Any other approach would be an unjustifiable interference with their status as parents and their rights under Article 8 of the European Convention on Human Rights. But there are several answers to this argument.

Firstly, applications such as this are provided for by statute: the Children Act of 1989. There was an application for a specific issue order in this case, as well as under the inherent jurisdiction of the High Court. Both are governed by the same principles. Section 1, sub-section 1 of the Children Act 1989 provides that the welfare of the child shall be the paramount consideration in any question concerning the upbringing of the child in any proceedings. This provision reflects but is stronger than Article 3.1 of the United Nations Convention on the Rights of the Child, which says that in any official action concerning the child, the child’s best interests shall be a primary consideration.

Furthermore, where there is a significant dispute about a child’s best interests the child himself must have an independent voice in that dispute. It cannot be left to the parents alone.

Baroness Hale went on to explain that there was, in fact, risk of serious harm to Charlie, at least in the form of pain, and no chance for improvement. That was most likely the right determination. It is the prior determination — the finding of law — that matters here.

Across several jurisdictions, laws have been passed to give children a voice in cases in which their parents or legal guardians are divided, and to ensure minors’ rights are properly protected when their parents are neglectful or abusive. As Ed Condon argued in The Catholic Herald and Sohrab Ahmari also noted (following Condon) in a piece for Commentary, courts in the UK are now using those laws to invade and usurp the rights of parents who are determined not to abandon but to care for their children and unanimous in their decisions with respect to the kind of care they would seek, even when the doctors and the courts agree that the treatment course the parents prefer is not likely to result in significant harm.

The (ab)use of the “best interests” standard in Alfie Evans’ case was particularly galling for a further series of reasons.

Nobody was ever able to figure out just what was causing Alfie Evans’ distress. All anyone ever knew for sure was that he was very sick. “We’ve done all we can,” is not on its own sufficient reason to override parents’ determination to seek further treatment for a child — not in any sane jurisdiction, anyway. “There’s simply nothing to do for him, he’s too far gone,” is a different matter — and closer to the truth in Alfie’s case. Even the experts who examined him for the Bambino Gesù hospital here in Rome came to the same conclusion. Bambino Gesù was prepared to continue palliative care for Alfie, though, and to keep him on ventilation.

The galling thing, therefore, was that there did not appear to be any properly medical reason powerful enough to compel the courts to override the parents’ wishes to seek further, or different treatment, or even a different venue. In Charlie Gard’s case, his parents wanted to attempt a potentially painful experimental therapy that had virtually no chance of securing even slight improvement in his condition. Alfie’s parents ultimately wanted to live what time they had left with their dear boy somewhere — anywhere — that wasn’t Alder Hey.

The court, however, determined that Alder Hey would take Alfie Evans off artificial ventilation and apply a protocol denying him basic nutrition and hydration, even though Alfie was at the time able to metabolize food and water and responded well to them physiologically in medically verifiable ways. Even if the determination to suspend therapeutic treatment and let nature take its course was the right decision, the refusal of food and water would have led to Alfie’s death from starvation and/or dehydration. Whatever that would have been, it would not have been “nature taking its course”.

Reports are that Alder Hey eventually restored at least supplemental oxygen and some hydration, after Alfie failed to die as doctors had predicted he would soon after they turned off the ventilation machine. Alfie Evans refused to die for more than three full days, during which time there were several more hearings, including one before the Court of Appeal, in which Lady Justice [Eleanor] King (presiding) said, “The evidence is that he is unlikely to have pain, but that tragically everything that would allow him to have some appreciation of life, or even the mere touch of his mother, has been destroyed irrevocably.” If that is a reason to keep parents willing and able to continue to care for their child — albeit with the help of outside parties — from seeking such care, it is difficult to see how it could stand on anything other than the surreptitious presupposition that the child’s life is not worth the trouble.

In a March 6 ruling in which she granted appeal on the ground the trial court had not properly weighed parents’ wishes, Justice King quoted from the opinion of the judge at trial, which in turn quoted from Baroness Hale’s opinion in Aintree University Hospital NHS Trust v James [2013] UKSC 67:

[39] The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be.

Practically and legally, the decision-makers are the judges. Whether owing to flaws in their design, or to improper application by the courts, laws enacted to protect children from negligent parents seem now to be the principal tool with which judges work to separate children from parents who, in the judges’ estimation, love them so much they just can’t think straight. When one adds consideration of the parents’ circumstances in the two cases currently under examination — Gard’s and Evans’, whose parents were young, poor, and salty — the willingness of judges to behave as they have reeks of paternalism and elitism.

The quiet men with white collars

None of this is to say anyone involved — not a single doctor or nurse, not a single lawyer or judge — is a bad person. Given the right tools and put in the right circumstances, however, even people who are not bad can and will do very bad things.

It is also true and inescapable that some of the rhetoric from Alfie’s supporters was overwrought and frankly irresponsible when it was not criminal. People made death threats to hospital staff, there was appalling “legal” advice given by persons neither qualified nor disposed, and there was an eagerness to cry “Murder most foul!” in efforts to co-opt Alfie (and Charlie before him) for their causes. All of it was wrong, and none of it was helpful. In fact, the outrageous behavior of the zealots made it easy to discount the public advocacy of the many people — the vast majority of those enlisted in “Alfie’s Army” — who sought only to give moral support to a dying child and his parents, and to decry what they saw for what it was: a gross injustice. In the introduction to his Screwtape Letters, C.S. Lewis wrote:

The greatest evil is not now done in those sordid “dens of crime” that Dickens loved to paint. It is not done even in concentration camps and labor camps. In those we see its final result. But it is conceived and ordered (moved, seconded, carried, and minuted) in clean, carpeted, warmed and well-lighted offices, by quiet men with white collars and cut fingernails and smooth-shaven cheeks who do not need to raise their voices.

There will be other fights. There will be other times to shout defiance. The turn away from life’s goodness — from the clear and cloudless vision of it — has already done grave harm. We must arrest it and reverse it. If we are to overcome the wickedness and evil of our wicked and evil age, we must nevertheless be prepared to combat it not with clubs and pitchforks — or their digital cognates and equivalents — but with the quiet dignity of Alfie Evans, whose life was worth its living to the last.