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  1. Zugzwang
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    27 Apr '18 19:34
    https://www.theguardian.com/commentisfree/2018/apr/27/the-guardian-view-on-alfie-evans-a-true-tragedy

    "The dreadful case of a terminally ill child whose parents cannot accept
    his condition offers no easy consolation."

    "It is a well-established principle of English law that there are some circumstances
    where a child’s best interests are not represented by their parents.
    Parents do not have the right to beat their children as they wish.
    They are sometimes prevented from taking them out of the country and,
    in extreme cases, even from seeing them. In the medical field, parents
    may not prevent a child having a lifesaving blood transfusion. In all these
    cases, it is assumed that the intervention of the state is to prolong life.
    Sometimes, however, it is to shorten suffering."

    "Doctors are not infallible. Neither, of course, are parents, as the ghastly
    case of Charlie Gard, whose parents clung to a false hope of a cure, made clear.
    Although doctors will sometimes see no hope where some exists,
    parents are much more likely to make the opposite error. "

    "But it is still a dreadful thing to demand that any parent acknowledge
    the mortality of a child."

    In Victorian Britain, parents were much readier to acknowledge the mortality of their children.
  2. Zugzwang
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    27 Apr '18 19:50
    https://www.theguardian.com/commentisfree/2018/apr/26/alfie-evans-parents-activists

    "Alfie Evans’ parents needed help. The vultures came instead.
    As if the heartbreak over the fate of their son was not enough, the vulnerable couple
    became the focus of activists with their own agendas."
    --Gaby Hinsliff

    "Alfie’s parents have fought like tigers both in and out of court and no parent – even those
    whose sympathies in this case are with the doctors facing death threats for doing what they
    honestly believe is the right thing – will begrudge the family their right to clutch in their grief
    at every straw there is.

    But the high court judge is surely right to question the motives of some of those extending straws.
    The most disturbing aspect of this case is the sense that it is now being exploited by those who see
    Alfie not as a desperately sick little boy, but as an expedient means of advancing their own ideological cause."

    "Others have sought to use the case to score cheap, wildly inaccurate points over
    healthcare reform in the US; to claim this is where “socialised medicine” gets you, when
    without the NHS and its daily miracle of providing treatment free at the point of use,
    Alfie’s parents would now be struggling with medical bills running into the millions."
  3. Behind the scenes
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    27 Apr '18 20:111 edit
    Originally posted by @duchess64
    https://www.theguardian.com/commentisfree/2018/apr/27/the-guardian-view-on-alfie-evans-a-true-tragedy

    "The dreadful case of a terminally ill child whose parents cannot accept
    his condition offers no easy consolation."

    "It is a well-established principle of English law that there are some circumstances
    where a child’s best interests are not repres ...[text shortened]...
    In Victorian Britain, parents were much readier to acknowledge the mortality of their children.
    "It is a well-established principle of English law that there are some circumstances
    where a child’s best interests are not represented by their parents.




    Though laws are enacted usually with good intentions, they cannot adequately provide for every situation.


    Standard Response: The racist, sexist troll mchill insists on attacking me at every opportunity and once again shows his extreme ignorance and abismal reading comprehension with his strawman statements, he is an older white man who's race has demonstrated their oppression of many Yada Yada Yada. 😴
  4. Subscriberno1marauder
    Humble and Kind
    In the Gazette
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    29 Apr '18 10:50
    Ross Douthat had a thoughtful opinion piece in the New York Times discussing this and similar cases:

    Some magazine stories are fishhooks; they work their way into your mind and don’t come out. Rachel Aviv of The New Yorker has written several such pieces in the last year, including one about an African-American mother’s battle to keep her brain-damaged daughter alive after the girl was declared clinically dead, and another about the way court-appointed legal guardians in Nevada exploit the elderly placed into their care.

    I’ve been thinking about both stories while watching the drama of Alfie Evans, an English almost-2-year-old with a devastating brain condition whose parents were denied the chance to move him to another hospital or country by a decree from doctors and judges that the time had come for him to die. It is the second such case in the United Kingdom recently, and the basic facts are roughly similar to the last one, in which a baby named Charlie Gard died of a rare genetic condition after the courts similarly ruled against his parents’ desire to take him abroad for an experimental treatment.

    In each case, the doctors and judges had plausible medical arguments that the limits of treatment had been reached. (Although in the case of Evans, their expertise was undercut by the boy’s refusal to swiftly die, as predicted, when his breathing apparatus was removed; he lived for five days before expiring.) But in each case that judgment was deployed for wicked ends, stripping parents who were not unfit of their ability to act as parents, denying them the ability to choose not only last-ditch treatments but even where and how their ailing children died.

    It is easy see the relevance here of Aviv’s story about Jahi McMath, a teenager from Oakland declared brain-dead after a horribly-botched tonsillectomy, whose family managed to spirit her away to New Jersey, where religious-freedom laws allow families to reject a “brain-death” ruling and keep a loved one on a feeding tube indefinitely.

    Since then Jahi has survived for years despite confident medical predictions to the contrary, and she now gives pretty decent evidence of retaining some form of consciousness, some ability to listen and respond. In California her status as a dead person is under litigation; in a small apartment in New Jersey, in the care of her mother, she is very much alive.

    Her fate is thus a case study in why a decent society allows families leeway to defy medical consensus: not only for the sake of parental rights and religious beliefs, not only because biases around race and class and faith creep into medical decision-making, but also because in hard cases the official medical consensus often doesn’t come close to grasping all the possibilities, and letting people go their own way is often the only way to discover where it’s wrong.

    But this tendency to arrogate power away from the family is not just an issue for extreme medical cases. In Aviv’s story on guardianship among the elderly, it plays out in a more prosaic and yet similarly shocking form — with old people who are hardly incompetent handed over to professional guardians who sell their assets and consign them to assisted living facilities from which they can’t escape.

    The basic dynamic is like the Gard and Evans and McMath cases but with the generational roles reversed: Instead of parents trying to pry their children away from the medical establishment, you have adult children unable to bring their parents home because their state-appointed guardians say no.

    Aviv focuses on the Kafkaesque odyssey of Julie Belshe, a mother of three who spent years extracting her parents from the talons of a woman, April Parks, who was later indicted on charges of perjury and theft. But Parks flourished in a larger system designed around the assumption that old people are basically better off without their kids, because offspring are probably motivated either by raw emotionalism or by gimme-gimme avarice, as opposed to the cool wisdom of expert doctors, professional guardians, and wise judges.

    Such a system is custom-built for the coming world of post-familialism, the world bequeathed to us by sexual individualism and thinning family trees. Just as more and more children are growing up without the active fathers who fought for Charlie Gard and Alfie Evans or the extended kinship network that saved Jahi McMath, more and more people will face old age without sons and daughters to care for them or to challenge the medical-judicial complex’s will.

    It is the tragedy of our future that for many people there will be no exit from that complex, no alternative means of receiving care. But it is the task of our present to ensure that where the family still has the capacity to choose for an aging parent or a dying child, the family rather than the system gets to make the choice.

    Yes, that choice may be wrong; it may have its own dark or foolish motivations. But those are risks a humane society has to take, so that in our weakest moments we can hope to be surrounded not just by knowledge or power, but by love.

    https://www.nytimes.com/2018/04/28/opinion/sunday/alfie-evans-and-the-experts.html?action=click&pgtype=Homepage&clickSource=story-heading&module=opinion-c-col-left-region&region=opinion-c-col-left-region&WT.nav=opinion-c-col-left-region

    As in the Gard case, I remain appalled by the State's usurpation of parental rights in cases where they seek only to be left alone and find unconvincing the confident assertions of State bureaucrats that letting a particular child die is in his own "best interests".
  5. Joined
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    29 Apr '18 20:30
    Originally posted by @duchess64

    In Victorian Britain, parents were much readier to acknowledge the mortality of their children.[/b]
    As, in Victorian Britain, infant mortality was as high as 50% before the age of 5, I guess they had little choice.

    Thankfully things have improved a little, infant mortality wise, with an understandable change in attitude.

    Wouldn't you say?
  6. Zugzwang
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    29 Apr '18 20:47
    Originally posted by @blood-on-the-tracks
    As, in Victorian Britain, infant mortality was as high as 50% before the age of 5, I guess they had little choice.

    Thankfully things have improved a little, infant mortality wise, with an understandable change in attitude.

    Wouldn't you say?
    As usual, Blood on the Tracks misses the point.
    It's not about how common it was for children to die but about the parents' willingness to
    accept their children's deaths when they came. Even if medical care could become perfect,
    some children would die in (statistically inevitable) fatal accidents. There always will be
    some parents who mourn their young children's deaths.

    Victorian Britain was much more religious than Britain today, so perhaps parents found
    that their religious beliefs made it easier to accept their children's deaths.
  7. Joined
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    29 Apr '18 20:521 edit
    Do I usually 'miss the point'? Maybe you think so. I would disagree.

    Maybe Victorians did have clearer, stronger religious beliefs which helped them to accept their childrens ' deaths at an early age.

    I would say that such deaths occurring to 1 in 2 of the children , contrasting with 1 in around 270 today would also play a part in that 'acceptance'

    Different, realistically different, expectations today.

    Maybe I am still 'missing the point'. Or maybe you are missing mine? Let's agree to disagree
  8. Zugzwang
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    29 Apr '18 20:54
    https://www.theguardian.com/uk-news/2018/apr/28/call-from-god-american-pro-lifers-role-in-alfie-evans-battle

    "'Call from God': American pro-lifer's role in Alfie Evans battle
    Catholic fundamentalists advised Alfie’s parents and arranged for medical experts to
    assess the terminally ill child before his death."

    "Within days of the death of 11-month-old Charlie Gard last July, a Christian missionary in
    Rome spotted a Facebook post about a baby named Alfie Evans. The post by Alfie’s father,
    Thomas Evans, explained that his 13-month-old son had a degenerative neurological
    condition and that doctors wanted to switch off his life-support. The case of Alfie, who
    died on Saturday at Alder Hey children’s hopsital in Liverpool, five days after his life
    support was switched off, was little known outside Liverpool. That soon changed.

    Christine Broesamle, an American “pro-life” activist based in Italy, got in touch with Evans ..."
    "A source close to the case has told the Guardian that Broesamle arranged for doctors to
    fly in from overseas to pose as family friends and medically examine Alfie. A paediatric
    oncologist, Dr Katarzyna Jakowska, and a colleague allegedly assessed both Alfie Evans
    and Isaiah Haastrup, a one-year-old child at the centre of a similar life-support battle, on
    the same day at different hospitals under the guise of being family friends."

    "The Guardian has learned that an international network of Catholic fundamentalists has played
    a growing role in advising Alfie’s parents, including organising Evans’ audience with the
    pope last week, arranging a string of medical experts to assess Alfie, and replacing the
    family’s Liverpool-based legal team with the anti-LGBT Christian Legal Centre this month."

    "Another source says Broesamle had access to a “seemingly endless pit of money and
    contacts”, and her network arranged for air ambulances to be ready at a moment’s notice
    to whisk Alfie from Alder Hey to the Vatican-approved Bambino Gesù hospital in Italy."

    "In court, Pavel Stroilov, the Christian Legal Centre law student representing Alfie’s parents,
    came in for the most searing criticism this week. He was described by Hayden as a
    “fanatical and deluded young man” whose submissions to the court were “littered with
    vituperation and bile” that was “inconsistent with the real interests of the parents’ case”."
  9. Zugzwang
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    29 Apr '18 20:58
    https://www.theguardian.com/society/2018/apr/28/alfie-evans-timeline-of-key-events

    "Timeline: key events in the legal battle over Alfie Evans"

    "18 April: Tom Evans flies to Rome and meets Pope Francis.

    20 April: The supreme court rules against Alfie’s parents for a second time, refusing
    them permission to appeal against the decision. The parents make an application to the
    European court of human rights in Strasbourg to take Alfie to Rome for treatment.

    23 April: The European court of human rights refuses the application. Alfie is granted
    Italian citizenship. The Italian ministry of foreign affairs says: “The Italian government
    hopes that in this way, being an Italian citizen will enable the immediate transfer of the
    child to Italy.” A high court judge dismisses new submissions made in private by the
    lawyers for Alfie’s parents via telephone. At around 9pm, life support is withdrawn by
    doctors at Alder Hey hospital, according to Tom Evans. He says in a Facebook post that
    his son has been breathing unaided since 9.17pm."
  10. Zugzwang
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    29 Apr '18 21:04
    Originally posted by @blood-on-the-tracks
    Do I usually 'miss the point'? Maybe you think so. I would disagree.

    Maybe Victorians did have clearer, stronger religious beliefs which helped them to accept their childrens ' deaths at an early age.

    I would say that such deaths occurring to 1 in 2 of the children , contrasting with 1 in around 270 today would also play a part in that ' ...[text shortened]...

    Maybe I am still 'missing the point'. Or maybe you are missing mine? Let's agree to disagree
    Based upon his 'reasoning', Blood on the Tracks presumably would believe that a woman
    who's raped in a society where rape's very common should be less traumatized (and more
    accepting of being raped) than a woman who's raped in a society where rape's much less common.

    My point is that when a young child dies (or a woman's raped) what matters is that particular
    experience to the survivors. The survivors' grief does not usually depend upon knowing
    how many other people are suffering from similar losses.

    If my young child died, then I expect that I would feel about the same way regardless of
    whether there no other or many other young children who had died in similar circumstances.
  11. Joined
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    29 Apr '18 21:16
    I see that you have changed the focus of this argument.

    I shall totally ignore the *rape* attempted diversion.

    You now seem to be focussing on the grief of the bereaved parents (if it happened to my child etc etc)

    The original focus was ACCEPTANCE of the chance of a small child's death.

    I am not arguing that parents 150 years ago would not grieve the death of their child just as much as any parent today.

    I am saying that , seeing (probably not reading about) death rates at that age of 50 % compared to less than 1% today, they would be more accepting that that is the way of things.

    Which was certainly where I entered this discussion.

    I think I am not the one 'missing the point'
  12. Zugzwang
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    29 Apr '18 21:21
    Originally posted by @blood-on-the-tracks
    I see that you have changed the focus of this argument.

    I shall totally ignore the *rape* attempted diversion.

    You now seem to be focussing on the grief of the bereaved parents (if it happened to my child etc etc)

    The original focus was ACCEPTANCE of the chance of a small child's death.

    I am not arguing that parents 150 years ago w ...[text shortened]... h was certainly where I entered this discussion.

    I think I am not the one 'missing the point'
    With his usual dishonesty, Blood on the Tracks trolls on.

    I would add that modern popular culture (including televised medical dramas that usually
    have happy endings in children's cases) may encourage the belief among parents that there's
    always a miracle cure 'just around the corner' for every child, no matter how critically ill.
  13. Joined
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    29 Apr '18 21:23
    Originally posted by @duchess64

    It's not about how common it was for children to die but about the parents' willingness to
    accept their children's deaths when they came.
    Just to back up my above post, note this little quote from you, which clearly used the word 'acceptance '.

    Nothing to do with 'degrees of morning's

    Am I getting the hang of 'getting the point'?
  14. Zugzwang
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    29 Apr '18 21:251 edit
    Originally posted by @blood-on-the-tracks
    Just to back up my above post, note this little quote from you, which clearly used the word 'acceptance '.

    Nothing to do with 'degrees of morning's

    Am I getting the hang of 'getting the point'?
    Is Blood on the Tracks too stupid (or dishonest) to comprehend that 'acceptance' and 'grief'
    NOT unrelated, as he apparently implies, but belong to the same process of responding to loss?

    https://grief.com/the-five-stages-of-grief/

    1 Denial
    2 Anger
    3 Bargaining
    4 Depression
    5 Acceptance
  15. Joined
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    29 Apr '18 21:28
    No dishonesty. No trolling. Where have I been dishonest ? Just entered the debate.

    These higher expectations probably have more to do with 50% mortality vs less than 1%

    Fyi, medical dramas nowadays often have less than happy endings, it is certainly not unusual for a young child to die in a UK medical drama. Fail to see the relevance of your unresearched, lacking in statistical providence, use of this line of debate.
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