[Magdalen] Alfie Evans has died

[Jay Weigel]

Alfie Evans has died.
https://www.cbsnews.com/news/alfie-evans-sick-british-toddler-at-center-of-legal-battle-dies/

I don't know how many of you have been following this case, but I have, and
I have real mixed feelings, both as a nurse and as a mother. One of the
feelings I have is one of anger, of "Whose child is this anyway?" ISTM that
in this case, as in another one I'll get to in a bit, that the state
overreached itself and took possession of the child for itself, completely
cutting off any rights of the parents at all. The parents had beef fighting
for months to take Alfie, who suffered from a degenerative brain disorder
so rare that it didn't even have a name, to Vatican City for experimental
treatment (more likely, for evaluation before such treatment, but
whatever....) but British courts ruled that they could not do so because
the doctors treating him in Liverpool said "further treatment was futile".
This just seems like overreach to me. The parents' campaign was backed by
the pope and Christian groups, which helped draw international attention to
the case. The hospital withdrew Alfie's life support Monday after a series
of court rulings sided with the doctors and blocked further medical
treatment. Alfie died at 2:30 am this morning Liverpool time.

As a mother and a grandmother, I am furious. I can hardly put into words
how angry this makes me. Surely the parents of such a child have the right
to try something else, especially if the NHS isn't paying for it, which
apparently they were not being asked to. Even if the doctors in Vatican
City shook their heads and said "There's nothing we can do either," and
recommended comfort care, they would have known they tried. But this
attitude of "the child belongs to the hospital first and then to the state
and the parents have no say" just pisses me off. (Sorry for the language.)
If the little guy had been abused, I would feel different. I've seen that,
and that's a whole other ball game. But Alfie's parents obviously loved him
dearly and only wanted the best for him and they have felt for some time
that they were NOT being listened to...and perhaps they weren't. After all,
they are quite young. Dad is 21 and Mom is no older.

As a nurse, I understand about futile treatment, certainly, but there is
also something here about medical arrogance. I've seen that too. Plenty of
it during my active career, especially in intensive care. It appears, at
least in the news stories, that there's a good bit of that at play also.

I mentioned another case, one that ME will undoubtedly remember and may
have some different opinions about, but it also involved a teenage patient
who was basically "taken over" by a hospital, some doctors, and a judge who
was, IIRC, found to be corrupt in such cases. For over a year her parents
were not allowed to see her, her own doctor was not allowed to see her, and
the hospital treated her as a psychiatric patient rather than a medical
one. It was pretty much a horror story. I stumbled on it quite by accident,
and would likely not have heard about it otherwise, because the father took
a direction in publicizing it that I never follow. Had he gone to other
than extreme right-wing media (Glenn Beck, etc.) his case would probably
have been heard, and the case of Justina Pellettier would be much better
known. However, even with his tack in that direction, my sympathies were
with the parents and definitely not with the hospital. Boston Children's
got a pretty black eye over that one, as well it should have.