[Magdalen] Alfie Evans has died

[Jay Weigel]

There is a case here of a child who was declared brain dead after surgery,
whose parents won the right to take her elsewhere and who have worked with
her one on one since the. I recently read an update article about her and
it appears that some of the pathways in her brain have actually redeveloped
since then. Not saying this is always going to happen, or even that this is
a perfect example or that it is anything but freakish; however, it says to
me that doctors never have all the answers. Also, this was a black child,
and the hospital did not take into account, apparently (nor did the legal
system) the feelings and attitudes of African-Americans toward death and
the dying process.

And yes, you are often going to have a rift between hospital staff and
parents in cases like this, That's something I've seen first hand, and one
reason I got the hell out of pediatrics, although I saw it with hospitals
and families in general later anyway. There IS an attitude of "doctors know
best", no matter how you sugar-coat it, and often they *will* try to run
right over the patient and the family. If the patient's family is young, or
of a minority group or a minority religion, it can be worse, especially if
the doctors are of the majority race/religion. Seen it with my own eyes. It
can get very ugly indeed. And there DOES get to be a feeling that the
patient, particularly a young one, belongs to the health system and not to
the family, if the family's wishes collide with accepted practice. Been
there, seen that.

Getting the courts involved only makes it worse. MUCH worse. A guardian ad
litem appointed by the court often does not have personal knowledge of the
parties involved and, as in the case I cited in the first paragraph, may
not understand cultural biases at work among various parties.
Dispassionate? I question that, particularly since my own experience with
such (don't ask!) was extremely unpleasant. And court personnel, including
judges, are often highly influenced by the doctors, no matter what they may
say otherwise. Further, there is a possibility that judges may be corrupt.
So there's that.





On Sun, Apr 29, 2018 at 7:49 AM, Roger Stokes via Magdalen <
magdalen at herberthouse.org> wrote:

> On 29/04/2018 00:42, Jay Weigel wrote:
>
>> Alfie Evans has died.
>> https://www.cbsnews.com/news/alfie-evans-sick-british-toddle
>> r-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.
>>
>
> Jay,
>
> This side of the pond this case has been very much in the news so I have
> been following it as well. As a result I have to disagree with your
> assessment that this is an example of medical arrogance at work. Alfie had
> rights and there was a court-appointed /guardian ad litem/ to represent him
> and his rights. (Incidentally I find it interesting that the parents each
> had their own legal representation so did they totally agree on what they
> wanted to happen?) As you observe Alfie's condition did not even have a
> name so it is not surprising that it appears nobody had suggested a
> possible form of treatment with any theoretical or evidential basis for its
> value in this case. Relevant specialists around the world will have been
> aware of it and even if not approached directly they would have been able
> to offer advice if they knew anything that might help. I have heard nothing
> of any such offers so must assume there were none, and the medical
> arrogance you refer to would have driven a doctor who thought they had a
> possible treatrment regime to offer it.
>
> The reality is that brain scans revealed a progressive destruction of the
> brain due to an unknown cause. The judge and the /guardian at litem/ had
> reviewed the scans and established that there was no prospect of remission
> or improvement. This conclusion was then reviewed by the Appeal Court, the
> Supreme Court and the European Court of Human Rights. The same courts also
> considered the proposal to take Alfie to Rome and decided unanimously that
> there would be no benefit in doing this. They were looking dispassionately
> at the facts rather than being ruled by the emotion this case engendered.
> That emotion led to the circus that appeared outside the hospital causing
> disruption to its work, abuse of the staff there and distress to other
> patients and their families. I am not saying Alfie's parents wanted that
> circus but by playing on people's emotions it was going to happen.
>
> I think there have been no winners in this case but there have been a
> number of losers, including Alfie's parents. A rift developed between them
> and the hospital staff who wanted to help the parents accept the hard truth
> and to support them through that process. Instead there will be many rough
> edges which will hinder their emotional healing and ability to move on. We
> wouldn't have had this situation a generation ago since an unrealistic
> belief in the ability of modern medicine to cure all ills and the ease of
> modern communication led to its development. Since we can't turn the clock
> back but there are ethical and moral questions that need to be faced,
> including how long it is right to use artificial means to keep a human body
> going. The news this week that scientists have been able to sustain a pig's
> brain going by suffusing it with oxygenated blood suggests that it won't be
> long before we can do that with a human body but is it ethical and morally
> right? Does it show appropriate respect for a person?
>
> Roger
>