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Charlie Gard, Alfie Evans, and us

Charlie Gard, Alfie Evans, and us

Last updated on: May 4, 2018 at 8:06 am by Jane the Actuary

Charlie Gard, Alfie Evans, and us 2018-05-04T08:06:50-06:00 Jane the Actuary

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Yes, it’s taken me a while to start typing about Alfie Evans, the 23-month-old British boy whose parents fought to stop a hospital from disconnecting the ventilator that provided needed support in breathing. After 5 days without the ventilator, and multiple desperate court battles, he died of an unannounced cause.

Some useful further reading:

“The Alfie Evans case shows liberal individualism has gone too far,” Megan McArdle, Washington Post.

“Parents Fight With U.K. Hospital To Feed, Give Oxygen To, And Diagnose Their Sick Toddler,” Holly Scheer, The Federalist.

“Alfie Evans: When are parents denied the final say?,” BBC News.

“Untangling the Ethics Around the Life and Death of Alfie Evans,” Gracy Olmstead, The American Conservative.

It seems to me that there are two key questions:

Is there a single right decision? And who gets to make the decision?

So far as I understand Catholic moral teaching, which I take to be a general guide, when it comes to medical treatment (as opposed to food and water), one may choose for oneself to decline such treatment when it seems unreasonable. Where to draw the line is a facts-and-circumstances sort of thing, it seems to me; at the extremes on one side, one may not, as a means of committing suicide, refuse ordinary medical care, and, at the other end, perhaps, it seems almost a bit lacking in faith to try to hold on to life when it requires the most extreme of treatments.

And it’s a general principle that when one is unable to make such decisions — whether as a child or when one is mentally incompetent or physically unable to communicate — one’s next of kin makes that decision in one’s stead.

In this case, the doctors at the boys’ hospital declared that the parents were unfit to make this decision, and got the court to agree with this determination.

Why did the court make this decision, both initially and in repeated appeals? The reports cite a 1989 law that allows them to intervene when the parents’ actions are not in the “best interests of the child.” This is the same law that might be applied, for instance, in the case of a family that insisted that they would rely on faith healing for their sick child. In this case, the doctors and the courts appear to be motivated, in part, by the parents’ seeming inability to accept that Alfie would not recover. (Wikipedia has links to the relevant court documents for reference.) One could reasonably imagine that, underlying the decisions, was a belief that the parents had simply lost touch with the medical reality and were incapable of making a decision about Alfie’s life or death given that he would live an unknown period of time in this nonresponsive state, because they were unable to see that this was the true state of affairs.

But that’s not the whole story. Reading through the initial court decision, it is evident that the judge feels compassion towards the father and acknowledges that, for a relatively uneducated 21 year old, he has researched the situation thoroughly. But here’s the key: the judge cites guidance from the Royal College of Paediatrics and Child Health:

The RCPCH believes that there are three sets of circumstances when treatment limitation can be considered because it is no longer in the child’s best interests to continue, because treatments cannot provide overall benefit:

II When life is limited in quality This includes situations where treatment may be able to prolong life significantly but will not alleviate the burdens associated with illness or treatment itself. These comprise:

3 .Lack of ability to benefit; the severity of the child’s condition is such that it is difficult or impossible for them to derive benefit from continued life…..In other children the nature and severity of the child’s underlying condition may make it difficult or impossible for them to enjoy the benefits that continued life brings. Examples include children in Persistent Vegetative State (PVS), Minimally Conscious State, or those with such severe cognitive impairment that they lack demonstrable or recorded awareness of themselves or their surroundings and have no meaningful interaction with them, as determined by rigorous and prolonged observations. Even in the absence of demonstrable pain or suffering, continuation of LST may not be in their best interests because it cannot provide overall benefit to them. Individuals and families may differ in their perception of benefit to the child and some may view even severely limited awareness in a child as sufficient grounds to continue LST. It is important, here as elsewhere, that due account of parental views wishes and preferences is taken and due regard given to the acute clinical situation in the context of the child’s overall situation.

Readers may recall the case of Charlie Gard, a boy who died under similar circumstances in the UK last year. (See my prior post for details and links.) To the best of my understanding, in the case of baby Charlie, the doctors’ case for removal of life support, or at least a component of the court decision affirming their decision, was not merely that he had suffered severe brain damage, but that he nonetheless continued to have seizures which meant that, though the doctors couldn’t diagnose it with certainty, he was in pain that they couldn’t remedy. The court document here, too, cites experts addressing the question of pain, but here the doctors concur that the brain degeneration has been so severe that it is highly unlikely that Alfie feels pain.

Hence, in the case of Alfie, the rationale for ceasing life support is not that he lives in pain, or even discomfort. The bottom line, based on the guidance cited above, is that if an individual can’t “benefit” from living, because severe brain damage/cognitive impairment prevents them from being “aware” or “interacting with” their surroundings, then that person should not be provided with “life-sustaining treatment” — feeding, hydration, and breathing assistance. And this seems to be a general rule, not a matter of intervention if the parents seem to inappropriately imagine there are medical treatments to pursue. (Edit: to be clear, I reject this line of thinking; my writing here is a matter of seeking to understand what’s going on. The determination of the courts, that this is the right decision and the preference to sustain life is wrong and must not be permitted, is itself wrong.)

And this leads to the question: if the general determination of the medical profession and the courts are that children with the severest cognitive impairments should, as a general rule, not continue to live, what about adults?

A BBC article from 2016 reports that a process exists by which next-of-kin of patients in a PVS state are able to file a petition with the court to request that nutrition be removed from the patient. (Whether coincidentally, or because he is somehow the designated judge for such cases, it was the same individual, Mr Justice Hayden, who made the decision to remove nutrition from the patient profiled in this story.) The BBC reports that

It’s estimated between 4,000-16,000 patients in a permanent vegetative state are in NHS care in England, with thousands more who are minimally conscious.

but of this group, only 100 families have applied to have their family member’s nutrition withdrawn. However, at the time of the article, there were those who disagreed with this process and believed that the process shouldn’t require a court at all.

Professors Celia and Jenny Kitzinger co-direct the Coma and Disorders of Consciousness Research Centre at the Universities of York and Cardiff. They have been campaigning for a change in the process since their own sister Polly was left brain-damaged after a car accident.

They have interviewed 75 relatives of PVS patients. They believe cases should only go to court where there’s a dispute, and families and doctors disagree.

Prof Derick Wade is one of the country’s leading experts in this area, a consultant in neurological rehabilitation based in Oxford. He estimates there could be as many as 24,000 patients in the NHS in England either in a permanent vegetative state, or minimally conscious.

Most will be in nursing homes, where their care’s likely to cost about £100,000 a year. He believes we need a full public debate.

He says that managing one person in a vegetative state for 10 years “costs” five avoidable deaths in other people. Like the family of Jodie Simpson, and the Kitzinger sisters, he believes it’s time to discuss whether the Court of Protection should be involved in such cases at all.

Now, this article is a year and a half old, and I’ve not read of a groundswell of support in favor of mass euthanasia of PVS and minimally-conscious patients in the UK in the meantime, but this particular individual’s twitter feed (e.g., “COURT & PVS: best interests decide in PVS & MCS, separation not needed; families rarely lie; decisions leading to death common; NORMALISE IT“) certainly suggests that he still believes this should be routine.

In any case, it certainly appears that the presumption in the UK is in favor of death, once the courts get involved, and that the only reason why these cases have made the news is that, in the case of children, the doctors may intervene where, in other cases, it’s “only” a dispute among family members, such a this October 2017 dispute between daughers and sisters of a “minimally conscious” woman — a case in which, surprisingly, the lawyer for the NHS foundation trust said, “There is a strong presumption about the preservation of life,” and sought to transfer to a long-term care facility, actions which, at any rate, rebut the accusation that the eagerness to withdraw life support is due to the government’s cost-saving greed. Whether there is any greater presumption in favor of life, when it comes to adults, because the courts consider them to have been “real people” to some degree, isn’t clear.

So the bottom line of an admittedly rambling post is this: yes, these are difficult cases, and, yes, one should not generalize from these sorts of extremely-disabled children, but human life should be valued for its own sake, and children should not be required to pass some test of whether they “benefit” from living, in order to, well, live.

Image: https://commons.wikimedia.org/wiki/File:Alder_Hey_from_Springfield_Park.jpg; By Rodhullandemu [CC BY-SA 4.0 (https://creativecommons.org/licenses/by-sa/4.0)], from Wikimedia Commons

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