The Corner

Science & Tech

This Is What Medical Authoritarianism Looks Like

The Alfie Evans saga continues to roil the U.K., and it is increasingly looking like the Terri Schiavo case.

One huge difference: Instead of an abandoning husband embroiled in a life and death struggle with a blood family — as in Terri’s situation — in Alfie’s case, the family is united in wanting Alfie’s life maintained so they can transfer him to an Italian hospital which, they claim, has agreed to offer continued care and a peg feeding tube that allows for more comfortable and effective long-term care.

But they are being thwarted by the doctors and the courts, both of which refuse to continue life support and are preventing the family from removing Alfie to a different hospital — even though the cause of his cognitive collapse has not been diagnosed. The technocracy has decided Alfie should die, and so die he will!

Alfie’s parents, Tom Evans and Kate James, are continuing to fight — supported by a large protest at the hospital entrance demanding justice. A lawyer wrote a letter to Tom and Kate opining that they had the legal right to remove their son from the hospital. (Me: They should have that right, but I doubt they do because of previous court orders.) When they tried to do so, they were stopped by police. From the Daily Mail story:

Police were called last night as Mr Evans brought their passports and declared they were going to take ‘his flight out to Italy’ but claims six officers were then brought in to guard his room to stop it.

Mr Evans said a jet was waiting at John Lennon airport and it is understood he plans to take his son to the Vatican-linked Bambino Gesu Paediatric Hospital in Rome for diagnosis and possible treatment after they received backing from Pope Francis.

A press release supportive of Tom and Kate — the full contents of which has not been publicly reported, so I can’t verify its accuracy — states that a judge has now stripped them of their parental rights, ordering that Alfie become a ward of the court to further thwart the parents’ efforts to seek further treatment and care for their son. If true, that order could conceivably become a pretext to prevent Tom and Kate from visiting their son. (See update.)

This is what medical authoritarianism looks like.

A few thoughts about this tragedy:

  • “Futile care” impositions are not medical decisions, but values judgments about the benefit of continued care that is working, e.g., keeping the patient alive. The doctors and courts believe Alfie should die sooner rather than later, the parents want to keep trying to find what is causing their son’s cognitive collapse and to maintain his life regardless of whether a cure can be found.
  • The judge ruled essentially that as a matter of law, Alfie is better off dead than in his current deeply troubling circumstances which include “semi-vegetative state” (whatever that means) accompanied by seizures and a degenerating condition. The parents disagree. Surely, in such cases they should have the final say, not strangers.
  • Coercion destroys the peoples’ trust in the health-care system. This problem will grow more pronounced as the cost containment paradigm becomes increasingly backed by an iron fist.
  • Health care is a major battle front in the culture wars that are roiling the West.
  • Finally, isn’t it wonderful that so many people care so much about the life of a helpless little boy. The sanctity of life ethic isn’t dead yet!

We have had similar cases in this country — with the important exception that I don’t know of any cases in which doctors thwarted a patient’s transfer to alternative care (although in the Baby Terry case in Michigan, the parents lost their parental rights in court solely because they refused to permit life-support to be withdrawn).

I find it bitterly ironic that some of the same bioethicists who believe doctors should be able to impose futile care treatment terminations based on their conscientious objections to continued care, also opine that doctors who don’t want to participate in abortion, assisted suicide, or other morally contentious elective acts in the medical context should be forced legally to do so upon threat of professional discipline.

It is a topsy-turvy world. Expect more such controversies and for them to grow increasingly bitter.

Update: I am aware that in the heat of furious public controversy, one side or the other may make announcements that later turn out to be false. Hence, I was wary of the press announcement that Tom and Kate’s parental rights had been removed — which I stated in the original version of this post could not be verified through public sources. My caution was justified. They continue to have official custody of their son — for all the good it is doing them in making treatment decisions about his care.

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