Patterico's Pontifications

7/3/2017

Charlie Gard: The Tragic Story Of A Little Baby, The Parents Who Love Him, And The Horrendous Order For Him To Die

Filed under: General — Dana @ 8:57 am



[guest post by Dana]

As I’m sure most of you have read by now, little Charlie Gard, all of ten months old, has been ordered by the laughably named European Court Of Human Rights, to die. Or as The Washington Post put it: This terminally ill infant will be allowed to die. But first, his parents will say goodbye.:

Charlie has a rare genetic condition and resulting brain damage that has robbed him of his ability to move his arms and legs, eat or even breathe on his own.

British courts decided that Charlie should be allowed to die after a heartbreaking legal battle in which doctors asserted that the child had no chance of survival, and Charlie’s parents argued that there was an experimental treatment in the United States they had not tried. The case was taken all the way to the European Court of Human Rights, which declined to hear the case Tuesday, upholding previous court rulings that it was in Charlie’s best interest to withdraw life support.

Unbelievably, the court has condemned little Charlie to death, over the objections of parents Chris Gard and Connie Yates. In other words, the State has wholly usurped the role of Gard and Yates and is acting as Charlie’s parents. And they have decided that Charlie’s life is no longer of value. They have not only ordered his death, but the court also refused to allow his parents to travel with Charlie to the U.S. to receive experimental nucleoside bypass therapy (oral medication, no surgery) which may provide a small chance of helping the baby. It should be noted that Charlie’s parents have received donations totaling around 1.6 million dollars to help with costs. To sum up, the State has stripped the parents of their parental functions, and gone completely against their wishes by deciding – as the surrogate parents – that not only is their son not permitted to receive further help, he must also die at their determined time. This is simply horrific. The gross overreach of power should frighten everyone, everywhere. And it should especially be a red-flag warning to those who continue to foolishly embrace the State as if it were their “father,” while blindly yielding to its insatiable appetites.

Here is the a timeline of the legal battles concerning Charlie:

3 March 2017: Mr Justice Francis starts to analyse the case at a hearing in the Family Division of the High Court in London

11 April: Mr Justice Francis says doctors can stop providing life-support treatment

3 May: Charlie’s parents ask Court of Appeal judges to consider the case

23 May: Three Court of Appeal judges analyse the case

25 May: Court of Appeal judges dismiss the couple’s appeal

8 June: Charlie’s parents lose their fight in the Supreme Court

20 June: Judges in the European Court of Human Rights start to analyse the case after lawyers representing Charlie’s parents make written submissions

27 June: Judges in the European Court of Human Rights refuse to intervene

This past Friday, Charlie’s parents, Chris Gard and Connie Yates, appeared in a heartbreaking video to let supporters know that Charlie was scheduled to be taken off life support that day. And per the court’s ruling, he was to die in the hospital and not be allowed to return to his home where his his parents could bathe him and hold him close while whispering words of love to him as he passed from this life to the next. They also said that there would not be enough time for relatives to arrive to say their final good-byes to Charlie, nor be there to lend support.

To make matters worse, and to their everlasting shame, the Vatican announced on Friday that it was siding with the courts. Instead of modeling the Love of Christ for the weak and most vulnerable, the Vatican caved. Here is National Review’s Michael B Dougherty’s brilliant takedown of their decision:

Here was a moment for the Vatican to stand up and announce what the Catholic faith teaches about human life and our duties to one another, and the God-given authority of parents over their children. And it was a moment in which such a statement would resound with an attentive audience. It was not to come.

In fact, the statement from Archbishop Vincenzo Paglia, president of the Pontifical Academy for Life, patronizes Charlie Gard’s parents even as it distorts their situation and endorses a legal judgment against their wishes that was clothed in the language of euthanasia advocates.

After two paragraphs expressing his admiration for the parents and doctors in this case, Paglia’s statement announces his moral reasoning this way:

The proper question to be raised in this and in any other unfortunately similar case is this: what are the best interests of the patient? We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family. Likewise, the wishes of parents must be heard and respected, but they too must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone. If the relationship between doctor and patient (or parents as in Charlie’s case) is interfered with, everything becomes more difficult and legal action becomes a last resort, with the accompanying risk of ideological or political manipulation, which is always to be avoided, or of media sensationalism, which can be sadly superficial.

Dougherty goes on to note:

Paglia is on solid theoretical ground when he says that there is a judgment to be made, and that it is good to avoid “aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.” No one is morally obliged to be kept alive by machines all their life, or continue undergoing radical surgeries or procedures that delay death. No one is obliged to empty their entire fortune and the state isn’t obliged to expend the public treasury on uncertain treatment.

So it may be the case that Charlie Gard’s parents would be adding to the suffering of their son by traveling to America with him while he is mortally ill. It may be the wrong decision, but it should still be their decision…

Dougherty is rightfully merciless in exposing their shame in this decision:

But besides being patronizing, the Vatican’s statement is a gross distortion of the situation. It portrays the Gards as acting alongside the doctors, but subject to outside manipulation. The Gards are resisting the doctors. The Gards are not facing “their decisions.” They are facing authorities that have overridden them. The good bishop writes that the Gards “must be heard and respected, but they too must be helped to understand the unique difficulty of their situation.” The people “helping” them to understand are speaking in the euphemisms of “death with dignity.”

Dear God. The very people that should be condemning the atrocious behavior of the State and standing for life on behalf of Christ, are instead deceitfully rationalizing their “concerns” for Charlie.

As I see it, both the Vatican and the State are in agreement: 1) This terminally ill baby does not deserve to live; 2) He cannot contribute to society or to the State and do his part, so therefore, he must die; 3) He has no quantifiable value to the State; 4) The role and responsibility of conscientious parents belongs to the State anytime they deem; 5) The State is right to decide the time and place of death and acting not only as parents but also as God.

As of this morning, here is where things stand:

Great Ormond Street Hospital, where Charlie is currently staying, has delayed his removal from life support. There is a question of whether they were influenced by Pope Francis intervening on Charlie’s behalf. On Friday, the Pope tweeted, “To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.” Then yesterday, the Vatican released a statement:

“The Holy Father follows with affection and emotion the story of Charlie Gard and expresses his own closeness to his parents,” read a July 2 statement issued by Vatican spokesman Greg Burke.

“He prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.”

Also, Archbishop Paglia is now on record saying:

We should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration, so that death might be achieved.

Allahpundit has retweeted what appears to be testimony from a hearing that was held to decide what was in Charlie’s best interest. During it, the neurologist who who would be treating Charlie in the U.S. is quoted as saying that the therapy “would provide a “small chance of meaningful improvement” in Charlie’s brain function, and that Charlie may be able to interact, smile and look at objects” as a result.

Maybe, with hope and prayer, Charlie might even be able to look at his parents, and smile, knowing somewhere deep inside his soul that they loved him with an indescribable ferocity while fighting valiantly on his behalf.

And finally, this morning President Trump offered to provide help and support for Charlie, tweeting:

If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.

I’ll try to update this post throughout the day if anything changes in Charlie’s situation.

(Cross-posted at The Jury Talks Back.)

–Dana

193 Responses to “Charlie Gard: The Tragic Story Of A Little Baby, The Parents Who Love Him, And The Horrendous Order For Him To Die”

  1. Sadly, this is the way of things now. Life devalued, people in seats of power playing God, stripping parents of their responsibilities, and putting babies to death. These authorities foolishly condemn themselves by their actions. Yet worse for them, they will one day, have to give an accounting for it before God.

    Dana (023079)

  2. Yes they will and their judgment will be swift and harsh (like 6:25)

    narciso (d1f714)

  3. pope chavez is an unequivocal supporter of filthy third whirl government-run healthcare systems that are responsible for the deaths of tens of thousands every year, many of them children

    he’s an evil person

    happyfeet (28a91b)

  4. Death panels are a real thing its what happens when you dint believe in the hippocratic oath

    narciso (d1f714)

  5. death panels are 100% essential and a net positive good when conjoined to a filthy third whirl government-run healthcare system like you have in leggy meggy’s britain

    otherwise the whole system and the government this parasite attaches to both go broke, and even more people die

    :(

    happyfeet (28a91b)

  6. Disciples of Moloch.

    NJRob (7f4bec)

  7. helped to understand the unique difficulty of their situation

    By force; pure evil.

    I wonder what Pope Benedict thinks.

    Patricia (5fc097)

  8. To the Catholics here, how does the Vatican’s flip-flop on this specific sanctity of life issue make you feel about the church?

    Dana (023079)

  9. That the Vatican is inhabited by devotees of Liberation Theology, who reflexively rubber stamp any socialist institution, is a tragedy. Pope Francis at best is presiding over a Papal administration that is willfully ignorant of the theology espoused by the previous 3 Popes. At worst, the Pope and his advisers are working to undermine the Theology of Life espoused by Pope John Paul.

    How embarrassing is it, that President Trump’s tweet shamed the Vatican to change its tune.

    Steven Malynn (d29fc3)

  10. …To make matters worse, and to their everlasting shame, the Vatican announced on Friday that it was siding with the courts. Instead of modeling the Love of Christ for the weak and most vulnerable, the Vatican caved.

    I am done with the Roman Communist Church.

    Not done with Christ, though. As so many of the main line Protestant churches are.

    http://www.christianexaminer.com/article/atheist.preacher.believes.god.is.an.option/48634.htm

    http://www.seattletimes.com/seattle-news/i-am-both-muslim-and-christian/

    F***ing hey?

    Steve57 (0b1dac)

  11. To the Catholics here, how does the Vatican’s flip-flop on this specific sanctity of life issue make you feel about the church?

    Much of the Church is bound and determined to win the approbation of the secular left, no matter how much Catholic doctrine has to be sacrificed. Look no further to so-called Catholic colleges and universities that now have very restrictive speech codes, allow the crybullies to call the shots, and hire and promote faculty who hold Church teachings in utter contempt. I have a hard time these days viewing Georgetown, Notre Dame, Marquette, DePaul, and some others as legitimate Catholic universities.

    The same thing is now starting to bleed over into how the Vatican deals with the world. Trendy positions regarding environmentalism, redistribution of wealth, crime and incarceration, etc. have now been adopted by the Church, and traditional teachings on sex, marriage, divorce, chastity, etc. is — if not exactly changed — at least downplayed. The current Pontiff has accelerated this — ahem — “outreach” to secularists. We no longer hear all that much about what each Catholic must do to serve the poor, we now hear what governments must do to take care of them. It’s a trend that I don’t like.

    JVW (42615e)

  12. This pope is getting Christians killed. He values his precious interfaith dialogue more than he values lives.

    Muslims only do “interfaith dialogue” for Dawa. To advance their cause.

    Christ, according to Islam, is nothing more than a slave to Allah.

    Surah 4 An Nisah verse 171:

    O People of the Book! Commit no excesses in your religion: Nor say of Allah aught but the truth. Christ Jesus the son of Mary was (no more than) a messenger of Allah, and His Word, which He bestowed on Mary, and a spirit proceeding from Him: so believe in Allah and His messengers. Say not “Trinity” : desist: it will be better for you: for Allah is one Allah: Glory be to Him: (far exalted is He) above having a son. To Him belong all things in the heavens and on earth. And enough is Allah as a Disposer of affairs

    Surah 5 Al Maeda verse 72:

    They do blaspheme who say: “Allah is Christ the son of Mary.” But said Christ: “O Children of Israel! worship Allah, my Lord and your Lord.” Whoever joins other gods with Allah,- Allah will forbid him the garden, and the Fire will be his abode. There will for the wrong-doers be no one to help.

    Christianity and Islam are not compatible. Christ would have whipped these Imams out of the temple.

    Steve57 (0b1dac)

  13. And they have decided that Charlie’s life is no longer of value.

    I think this is a bit overwrought and untrue. One could just as well (and just as unfairly) say that Charlie’s parents are indifferent to his suffering.

    I sympathize with the parents and am deeply uncomfortable with governments making decisions like this.

    But if you read the facts of the case, the “experimental treatment” offers no prospect of actually improving the child’s condition. I think the court has reached the morally correct decision that the parents should, responsibly, have made.

    So it may be the case that Charlie Gard’s parents would be adding to the suffering of their son by traveling to America with him while he is mortally ill. It may be the wrong decision, but it should still be their decision…

    If you accept this, how is what the parents are trying to do functionally different from child abuse?

    If a child is ill, the parents do not (and should not) have the unlimited right to, for instance, submerse the child in boiling water or feed the child battery acid, even if the parents are absolutely and sincerely convinced it is in the child’s best interest. There must be limits, and those limits must ultimately be based on medical realities.

    Dave (711345)

  14. Better not be a nickel of US taxpayers money spent on this. If there is then we will need to treat everyone in the world to taxpayer funded healthcare. I sense some shenanigans here. Especially with the Pope chiming in. The Pope already thinks I’m obligated to accommodate the world’s needy.

    Jcurtis (d42778)

  15. But if you read the facts of the case, the “experimental treatment” offers no prospect of actually improving the child’s condition. I think the court has reached the morally correct decision that the parents should, responsibly, have made.

    Have you ever lost a child? I have. I would have gone to ends of the earth to save him.

    The thing is I don’t want to imply that you shouldn’t voice your opinion. But it’s very grand of you to declare what the responsible decision would have been.

    In any case, in every case, I don’t want the government making these decisions for me.

    Steve57 (0b1dac)

  16. Dave,

    I was just reading this article about parents whose child had a very similar condition to Charlie’s and became the first person in the U.S. to receive the experimental nucleoside therapy. Note: I haven’t yet checked various sources linked to yet to corroborate claims, so take it as you will. But do read the whole thing and see what you think.

    Arthur and Olga Estopinan believe that their six-year-old son Arturito “would surely be dead by now” if he wasn’t granted access to the treatment Charlie’s parents are fighting for.

    Arthur, 51, a government consultant, said: “We feel very fortunate to be American and not British – because if we lived in the UK Arturito would surely be dead by now.

    Dana (023079)

  17. If a child is ill, the parents do not (and should not) have the unlimited right to, for instance, submerse the child in boiling water or feed the child battery acid, even if the parents are absolutely and sincerely convinced it is in the child’s best interest. There must be limits, and those limits must ultimately be based on medical realities.

    Are you seriously comparing a potentially life saving experimental treatment to battery acid?

    Steve57 (0b1dac)

  18. @ Dave,

    And they have decided that Charlie’s life is no longer of value.

    I think this is a bit overwrought and untrue. One could just as well (and just as unfairly) say that Charlie’s parents are indifferent to his suffering.

    Okay, I’m going to resist snapping back at claims of being overwrought as that is a subjective claim, and you are of course, free to make it. I fully admit to being filled with outrage and deep sorrow over what is happening to this family – all at the hands of the powerful state.

    With that, I reject your claim that it is an untrue statement. By acting as the parents and making this decision, they have indeed, devalued Charlie to the point where he is no longer being allowed to live. By their sheer usurpation of the function of parents who would die for him in a heartbeat, the state – which has no personal investment, love, or sacrificial heart of a parent, has made a business decision. That is how little Charlie is worth. I would also add that no parent who is conscientious and loves their child would be indifferent to his suffering. There is something with parenting that compels us to do anything and everything within our power to make sure they do not suffer. Also, I am unable to find anything that associates pain with this condition. Have you? I did read that the oral therapy does not appear to be accompanied by pain.

    Dana (023079)

  19. I do not hesitate to let DJT have it for buffoonish tactics and his lack of core principles. However, compared to Pope Francis’ leadership, DJT is freaking Abraham Lincoln, with a dash of Alexander and Patton!

    As a Roman Catholic, the dismay, sadness, and anger I have for this Pope is broad and deep. He acts like a classic Progressive by constantly probing and chipping at well understood doctrines and then denies any such thing. This latest example is pure evil at work. He knows better the gambits in which he engages. He is demonstrably intelligent. His wickedness d*mns him. DJT really does not grasp the nature of much of what he does.

    It is staggering that Francis office only after one of the most doctrinaire (and brilliant) popes resigned, almost without precedent! The first pope from his hemisphere, he is. It is very difficult for me to not think something epically tragic is afoot. There sure as hell is in England and his leadership is arguably the worst of it as it will affect multiple lives going forward. Ignore his backtracking. The damage is done.

    Ed from SFV (3400a5)

  20. Maybe that’s not what you meant, Dave.

    Perhaps you can restate. I’m not the one who lofted the idea of battery acid into the conversation.

    Steve57 (0b1dac)

  21. * that Francis took office. Apologies for the bad edit.

    Ed from SFV (3400a5)

  22. If a child is ill, the parents do not (and should not) have the unlimited right to, for instance, submerse the child in boiling water or feed the child battery acid, even if the parents are absolutely and sincerely convinced it is in the child’s best interest. There must be limits, and those limits must ultimately be based on medical realities.

    This does not represent an honest attempt at making an argument.

    JVW (42615e)

  23. charlie gard it seems you’re doomed

    your little light all but consumed

    oh the places you will go go go

    (well, mostly up to heaven’s glow)

    and peace you’ll find and laughter too

    but when pope chavez passes through

    say nono there’s no room for you.

    your kind don’t belong up here!

    send him away don’t shed a tear

    cause popes what freedom abjurate

    aren’t fit to pass that pearly gate

    happyfeet (28a91b)

  24. I’m sorry for mentioning it. It’s just that this Charlie Gard story cuts to the bone.

    Steve57 (0b1dac)

  25. Its rare you come face to face with a ghoul a strigoi a nazgul.

    narciso (d1f714)

  26. 19. Dana (023079) — 7/3/2017 @ 2:35 pm

    the state – which has no personal investment, love, or sacrificial heart of a parent, has made a business decision.

    Don’t forget the effect on business if other doctors were able to cure someone the NHS doctors had given up hope on. That mustn’t be allowed to happen.

    Sammy Finkelman (ba7dc3)

  27. Agreed, JVW, about the Church.

    They changed the aesthetics of the Church, like the Mass and the music and the theology, while retaining the rotten hierarchy exactly as it was. When Cardinal Law was whisked away to Rome instead of serving the poor in, say, the Congo, I swear half my family dropped out.

    Patricia (5fc097)

  28. Agreed, Patricia. Wholeheartedly.

    Steve57 (0b1dac)

  29. The real crime by the doctors came before this.

    They must have stalled the parents from removing the child to try something else. It shouldn’t be happening just now, when there is literally no hope (of any good outcome)

    It is probably correct now that there’s so much brain damage, they can’t hope for much of life for the baby anyway, but taht was probably not the case when the parents frrst began asking
    questions.

    Even if the American doctor can’t cure him, or what he can offer is not of much value, he probably can say if he had been given an opportunity earlier, better things could have happened, and even if you can’t say that now, you might be able to say that several years from now.

    And he could say the Britih doctors could have done other things – at least let go of the case.

    Sammy Finkelman (ba7dc3)

  30. I’m shocked shocked I tell you:

    http://acecomments.mu.nu/?post=370483

    narciso (d1f714)

  31. The CBS Evening News had a story on this, although, of course, it didn’t tell you enough to give you the full picture.

    That’s where I heard sbout the doctros claiming the baby had tremednous brain damage. Probbaly true, and opriobably also true that they put off the parents from looking elsewhere.

    There’s a reason I think they don’t want other doctors to examine him.

    Sammy Finkelman (ba7dc3)

  32. Greetings:

    A couple of decades back, I saw a movie that I think was called “True Confessions” with the Roberts DeNiro and Duvall playing, respectively, a corrupted priest and a police detective. At risk of giving its plot away, in the end DeNiro regains his religion and finds inner peace.

    It looks like we, and I don’t just mean Catholics, have a good ways to go.

    11B40 (6abb5c)

  33. There is no blame to fix, sometimes.

    Steve57 (0b1dac)

  34. 11B40, I doubt you are but are amenible but I am selling my Fort Danner Fort Lewis Boots on EBay

    Know anyone who needs a lightly used pair of 8 1/2 Ds?

    Steve57 (0b1dac)

  35. Danner boots. Duh!!

    Steve57 (0b1dac)

  36. I spent enough time at Camp Casey to qualify for the VFW.

    2nd ID. Second to none.

    Steve57 (0b1dac)

  37. I don’t even understand why anybody cares what the Vatican has to say about this. I thought the Queen was the head of the Church in England. Or the Archbishop of Canterbury, however they divide it up. Since 1533 or around then. And my Church has not granted any status to the Pope, except as Bishop of Rome, since 1054.

    nk (dbc370)

  38. this pope is uncommonly smelly

    happyfeet (28a91b)

  39. I assume they are Catholic, but it should be a concern of bit only them but protestants and orthifix because its about principle

    narciso (d1f714)

  40. Well, if it is a matter of principle and not dogma, the religion you want that does not euthanize disabled infants or anybody else for that matter, and does not even permit Do Not Resuscitate directives, not even by the patient himself, is Islam.

    nk (dbc370)

  41. Islam is pretty tranquil and pbuh with abortion though

    happyfeet (28a91b)

  42. wikipedia took a hard look at this, doing the job the cnn jake tapper fake news propaganda sluts won’t do

    happyfeet (28a91b)

  43. For first four months of gestation. (Better than Texas, which is five.) After that it’s considered homicide.

    nk (dbc370)

  44. now mind you I’m no pope, but that seems more or less reasonable

    happyfeet (28a91b)

  45. I had this conversation with my daughter, yesterday. No, not about euthanasia or abortion. About socialism and fascism. The only difference is whether the authority flows downward from a Duce, Fuhrer, or Caudillo. Otherwise, they are both “everything within the state, nothing outside the state, nothing against the state”, no matter how benevolent they may seem on the surface.

    nk (dbc370)

  46. did you talk about the role facebook plays

    happyfeet (28a91b)

  47. how can you look at Don Lemon and not immediately think “fake news”

    happyfeet (28a91b)

  48. i guess maybe if your first thought was “turbo bottom”

    happyfeet (28a91b)

  49. Well mussoluni wee a former socialist, the esser/drexler wing of the Nazis were big into nationalization, but Franco was relatively laissez affair, other tight regimes were somewhat in the middle

    narciso (d1f714)

  50. Facebook is for old ladies.

    nk (dbc370)

  51. i agree but even that’s changing

    happyfeet (28a91b)

  52. But you see, the point is they have nothing of consequence to say on the subject.

    narciso (d1f714)

  53. speaking of old ladies

    i keep reading that illinois is “rushing” to enact a budget

    c’mon you guys

    ur lollygagging

    happyfeet (28a91b)

  54. I think this issue is too important for digressions, except in the sense that this progressive notion that everything is material, and there is Bo other plane, causes a backlash among traditional minded folk

    narciso (d1f714)

  55. I guess you thought offense.

    Steve57 (0b1dac)

  56. well if you wanna stay on topic leggy meggy’s Britain needs to brexit both harder and faster i think

    what can be more dehumanizing than having to submit to some ungodly stinky “European Court of Human Rights”

    happyfeet (28a91b)

  57. Its well I’ll use the yiddush word, vekakte,

    narciso (d1f714)

  58. 56. happyfeet (28a91b) — 7/3/2017 @ 7:00 pm

    what can be more dehumanizing than having to submit to some ungodly stinky “European Court of Human Rights”

    Which has apeculiar idea of human rights.

    It’s actually doctors’ rights – not to be proven wrong.

    There is something (a dietary supplement) but to really help it probably needs to be diagnosed right away, and this is really rare.

    https://www.thesun.co.uk/living/3318065/arthur-olga-estopinan-arturito-charlie-gard-court-case/

    There are, of course, no bad side effects, unless you count lingering on (but not in pain) as a bad side effect.

    https://www.thesun.co.uk/living/3318065/arthur-olga-estopinan-arturito-charlie-gard-court-case/

    Sammy Finkelman (ba7dc3)

  59. vekakte

    happyfeet (28a91b)

  60. That should instill anger on those who aren’t triffid puppets, meanwhile

    https://mobile.twitter.com/nktpnd/status/882053391756800000

    narciso (d1f714)

  61. 11B40 @32. I had read the book, “True Confessions, so I didn’t watch the movie. It was by John Gregory Dunne who, let us say, had a “unique” viewpoint. (Or we can say he was one cynical motherf***er who made up all kinds of pretentious sh!t to advance his storyline.) I read another one by him,”Dutch Shea, Jr.” which was even worse.

    nk (dbc370)

  62. Allow me to mansplain for a moment – the NHS, the UK health service, is set up to be “free” at point of care to all UK citizens (broadly speaking). The downside is it is run by its administrators, each hospital runs on its own budget, and they do allow hospitals and occasionally whole health districts to go bankrupt and close. BUT all NHS hospitals are allowed to take fee-paying patients, who are then treated outside the NHS. The parents have raised 1.6 million; this would have been used for the medical transport to fly an ICU-level supported infant to the US. Now, why can’t they just use this money to instead bring the medication to the UK, and pay the hospital to continue the ICU support?

    I am an oncology surgeon; I currently work in Australia, and have worked in the UK. I have patients here who fly to the UK to get experimental treatment they can’t get in Oz, as fee-paying patients in UK hospitals.

    So whats the issue with this kid? In my experience, its pure pragmatism on behalf of the administrators of the hospital. If they let one patient very publicly buck the system, soon there will be more, and then they will demand the costs of treatment be bourne by the NHS. The NHS teters on complete insolvency on a daily basis, and is run by administrators who only care where their next performance bonus comes from. The whole system is repugnant.

    Exactly the same arguments play out in NHS hospitals every day; its just with this one, there is a child, whose parents were not willing to lie down.

    At what cost a human life? Who decides what constitutes “meaningful existence?” Certainly not me. At some stage, every treatment is experimental. Someone has to go first . . . or second, in this case.

    In general, I don’t believe (see what I did there lol) in organised religion, and think DJT is a cheeto-flavoured buffoon; but he’s made the Forces for Good (TM) look like real dicks here . . .

    awfulpod (9f6eaa)

  63. The Krauts are the EU and they invented involuntary euthanasia. https://en.wikipedia.org/wiki/Aktion_T4

    nk (dbc370)

  64. this is very lorenzo’s oil really

    i wasn’t a fan of that movie cause

    it really sorta sends the message that you can’t trust doctors and that when anyone you love gets sick you have to research on the internet until your teeth are coffee-stained and you don’t smell too good and you get fired

    it’s very explicit – the movie really does say your loved one’s survival is all on you – you can’t trust the medical system

    and that’s the same message I’m getting from this charlie gard story too

    that’s just a suck-ass, depressing message

    happyfeet (28a91b)

  65. Yes what part of death panel dud you miss, I forgot which character in a recent Bernie gunther was involved in that.

    narciso (d1f714)

  66. At some stage, every treatment is experimental.

    i want Justin Bieber to get this as his next tattoo

    happyfeet (28a91b)

  67. Mr. Dr. awfulpod we have a sometimes commenter named Mr. Dr. Mike K – you should check back to see if he comments

    i’d love to read a discussion between you two about this

    happyfeet (28a91b)

  68. So how many dead are exceptable pijachu, pick a number and put it in your spread sheet, and this exactly the way creamer and ezekiel designed the system for us

    narciso (d1f714)

  69. Awfulpod,

    So little Charlie Gard is being used as an example (of warning) then. In your estimation, is there also an underlying fear by the NHS that the therapy in the US might meet with some success?

    At this point, it doesn’t seem like they can allow themselves to go back on their decision, no matter how much pressure is exerted on them to do so. It will be interesting to see this play out. Especially since protests and marches are scheduled across Europe this week in support of Charlie and his parents, and against the Courts and hospital.

    http://m.ncregister.com/blog/edward-pentin/pope-francis-and-president-trump-defend-charlie-gard-from-the-courts#.WVr43IVlD7o

    Dana (023079)

  70. Ditto #67.

    Dana (023079)

  71. Mr. narciso people need to be prepared to die as opposed to mewling for the state to grant them permission to live

    happyfeet (28a91b)

  72. Ben Shapiro offers advice on how to get Charlie and his parents here, in spite of the court ruling:

    Congress has the power under Article I, Section 8 of the Constitution to “establish an uniform Rule of Naturalization.” This gives Congress plenary power over naturalization. In the past, Congress has even used its power to grant U.S. citizenship to Jack Kent Cooke, who would go on to buy an interest in the NFL’s Washington Redskins. In 2012, Congress passed a special bill granting Nigerian citizen Sopuruchi Chukwueke legal status in the United States. Honorary American citizens include Winston Churchill and Mother Teresa.

    So, why can’t Congress pass a private bill sponsoring Charlie Gard and his parents as American citizens? That would then give us legal standing to challenge Charlie’s inability to travel to the United States at the behest of his parents. This could cause conflict with the British legal system. But so what? At least we’ll have done the best we could to save Charlie’s life.

    Dana (023079)

  73. I read the book. The book that said I don’t hate anyone.

    Steve57 (0b1dac)

  74. Why doesn’t Trump just make a phone call to Teresa May to have her Home Office give the family permission to come to the United States?

    nk (dbc370)

  75. nk,

    Theresa May is otherwise occupied as protests and calls for her to step down are increasing. No comment either from the royal family, nor the Church of England.

    Dana (023079)

  76. “‘Tanto’ Paranto.”

    Steve57 (0b1dac)

  77. Also, it looks like the “Pope’s hospital” has offered to take in Charlie:

    The president of the Pediatric Hospital Bambino Gesu in Rome, also known as the “Pope’s Hospital”, has offered to transfer Charlie Gard to his facilities.

    Charlie is a 10-month-old baby who suffers a terminal illness and will be disconnected from life support in the next days, against the will of his parents, but at the allowance of the European Court of Human Rights.

    President of the hospital, Mariella Enoc, tweeted that the Holy Father’s own words in support of Charlie “sum up well the mission of Hospital Bambino Gesú”.

    “For this reason, I have asked the health director to check with the Great Ormond Street Hospital in London, where the neonate is recovered, if there are sanitary conditions for an eventual transfer of Charlie to our hospital. We know that the case is desperate and that, until now, there are no effective therapies,” the statement said.

    “We express our closeness to parents in prayer and, if this is their desire, we are available to welcome their child with us, for as long as he lives.”

    How does this not make the NHS look really awful?

    Dana (023079)

  78. is it really about shaming socialist healthcare into being all that they can be

    happyfeet (28a91b)

  79. “‘Pinto’ Beanto.”

    my brother makes them super good he uses the big-ass cajun pot i gave him

    i love that

    happyfeet (28a91b)

  80. White House stays silent on anti-Semitic connection of Trump’s anti-CNN video
    CNN 5h ago

    happyfeet (28a91b)

  81. And back to the seventies on CNN.

    narciso (d1f714)

  82. pikachu stays silent on anti-Semitic connection of CNN fake news’ embrace of Barack Obama’s genocidal plan to have his pervy persian stroke-buddies nuke the unholy yiddish clean out of Israel

    if there was no gravity

    happyfeet (28a91b)

  83. How does this not make the NHS look really awful?
    Dana (023079) — 7/3/2017 @ 7:58 pm

    Exactly.

    Steve57 (0b1dac)

  84. yes yes the optics of dead babies are just terrible

    happyfeet (28a91b)

  85. @82… starting with:Watergate.

    https://www.youtube.com/watch?v=r97Nv8N7-mI

    “It’s a big
    dubya I tellya!” – Lennie Pike [Jonathan Winters] ‘It’s A Mad, Mad, Mad, Mad World’ 1963

    DCSCA (797bc0)

  86. i don’t do bottom-feeding hotair.com clickbait

    i do however like long walks on the beach and cupcakes

    happyfeet (28a91b)

  87. oK Mr. Feets. Have it your way.

    Steve57 (0b1dac)

  88. i always do except when i don’t

    and you can take that to the bank

    happyfeet (28a91b)

  89. That was Saturdays reading, but it appears pope Francis has moved from that untenable position since then. I say again. We are risking a hard and likely nit brief jydgement.

    narciso (d1f714)

  90. that’s so bogus

    if you have money or connections or just a nice smile you have unlimited morphine

    screw the pope

    happyfeet (28a91b)

  91. screw the pope
    happyfeet (28a91b) — 7/3/2017 @ 8:55 pm

    I’d rather not.

    Steve57 (0b1dac)

  92. i’d like to teach the pope to sing in perfect harmony

    but he’s a nasty third whirl p.o.s. baby-killing commie

    so what do you suggest

    happyfeet (28a91b)

  93. A diet Coke.

    Steve57 (0b1dac)

  94. Or SNO-SEAL.

    Sometimes I have to think about it.

    Steve57 (0b1dac)

  95. The ten gauge always works.

    Steve57 (0b1dac)

  96. i keep it to myself i know what it means

    happyfeet (28a91b)

  97. meanwhilst Mr. Matt Drudge has a flaming bold font red hardon for noko missiles aimed vaguely at Japan

    this could be big

    happyfeet (28a91b)

  98. well except for Pope Francis being SATAN and all

    happyfeet (28a91b)

  99. third whirl futwit

    happyfeet (28a91b)

  100. One step fiwars, two steps back.

    narciso (d1f714)

  101. White House stays silent on anti-Semitic connection of Trump’s anti-CNN video
    CNN 10h ago

    happyfeet (28a91b)

  102. Court rejects EPA attempt to halt Obama-era methane rule

    piggy-pow John McCain sez this is righteous judicials!

    i’m so totally craving penis of a southeast asian provenance!

    happyfeet (28a91b)

  103. My Pope is a ca-hak sucking d###. A disgusting lefty turd. May God wisk him away.

    But yes, the Catholic Church has allowed the Commies in.

    Blah (44eaa0)

  104. @16 and 18 (Dana)

    The article you linked in 16 notes:

    Doctors have also diagnosed Charlie with severe irreversible brain damage, which wouldn’t be reversed by the drugs.

    Obviously, if there was any realistic prospect of a happy ending, however remote, it would be evil not allow the parents to pursue it. Everything I have read, based on expert medical opinion, says that’s not the case here.

    Concerning my comment about the court “deciding that Charlies life no longer has value”, the court did not make any judgment about the value of the child’s life. The judgment is that the poor child should not suffer even more than he already has when there is no prospect of material improvement.

    Suppose that, instead of a medical treatment that doctors say will not help, the parents were holding out hope for a divine miracle curing their child. Would you support keeping the baby on life-support indefinitely, unable to move or breathe, with irreversible brain damage, on the basis of the parents’ hopes for a divine miracle cure?

    I think the real situation is no different. The “experimental treatment” (which doctors say can’t cure the child’s condition) is just a miracle cure with scientific window dressing.

    @15,17,20,22 (Steve57, JVW)

    Steve I am sorry for your loss.

    With the battery acid analogy I was drawing a reductio ad absurdum of the argument that the parents should always have the final decision, regardless of what medical science says.

    As above, that was premised on the reported fact that the “experimental treatment” is not actually “potentially life-saving”.

    According to the doctors with the most complete knowledge of Charlie’s condition, the list of possible outcomes looks like:

    1) End life support and the child suffers for a few more hours or days before dying in his present state,

    2) Apply “experimental treatment” and the child suffers for several more weeks or months before dying in his present or even worse state,

    In scenario 1, the parents are concerned because they believe (contrary to the medical consensus) that more could have been done, whereas in scenario 2, the parents are (maybe) comforted that no effort was spared (even though the additional effort had no real prospect of success).

    The reason I believe the court made the morally correct decision is that forcing the child to suffer longer merely to make his parents feel better after the inevitable (unhappy) ending is not right.

    If you want to say the doctors and science are all wrong, and there is some real prospect of recovery, then we are back to hoping for a divine miracle cure by another name.

    Dave (711345)

  105. Dave, you don’t know me.

    Steve57 (0b1dac)

  106. …Would you support keeping the baby on life-support indefinitely, unable to move or breathe, with irreversible brain damage, on the basis of the parents’ hopes for a divine miracle cure?

    I would withdraw care if it were useless. There is a difference between killing and a Do Not Resuscitate order. There is a difference between artificially maintaining life and killing. But I will not kill without right.

    Steve57 (0b1dac)

  107. In the old days a government official might give you a chance to shoot an apple off your son’s head.

    Pinandpuller (dc2949)

  108. My grandma was a DAR so we had to keep up with the CPR certifications.

    Pinandpuller (dc2949)

  109. My grandma was a DAR so we had to keep up with the CPR certifications.

    Pinandpuller (dc2949) — 7/4/2017 @ 12:09 am

    My family didn’t get here that early. My ancestors didn’t even fight in the civil war. But I do have my Great Uncle’s discharge certificate from WWI framed and hanging on my wall. And we participated in every war since.

    Steve57 (0b1dac)

  110. I can’t even read his name. It was written in pencil. it faded.

    Steve57 (0b1dac)

  111. It’s likely Helen Mirren won’t be getting her kit off for this NHS romcom.

    Pinandpuller (e6a674)

  112. Steve57

    I expect your reparations bill will be pro rated.

    Pinandpuller (e6a674)

  113. My reparations bill? My family came from a village full of *** and donkeys and malaria. When we got here we ate off of orange crates. And happy to do it. I got to join the finest Navy in the world. Where every day is a holiday, and every meal is a feast.

    What do you mean, reparations?

    Steve57 (0b1dac)

  114. The issue isn’t whether the Parents decision is the right one. The issue is that the State has decided to make it for them, and this is an abomination.

    I recall the Terri Schiavo case. Yes, medical examination of her corpse is said to have shown that she could not possibly have recovered to any degree. That doesn’t change the fact that, despite the existence of close family members willing to pay for continued treatment, the unsupported opinion of a person who would benefit from her death was allowed to hold sway. In a few decades we had gone from “We may allow you to die from lack of heroic measures if you leave clear written instructions to that effect” to “We will allow you to die based on hearsay evidence proffered by somebody who will benefit from your death.”

    *shudder*

    In this new case we have medical experts making a decision outside their proper field of authority. If they were merely saying “We ourselves will not perform this treatment because we believe it is wrong to do so” I would have no problem. They are not doing to. What they are saying is “We are the High Priests of Life and Death and you will not be allowed to ignore us.”

    They should be executed.

    Yes, the parents decision to try this new therapy may be a tragedy that prolongs the child’s suffering and their own. But the decision is theirs, or should be. For an agent of the State to decide not merely what the State will do in the case, but what the Parents will be allowed to to is deeply frightening.

    C. S. P. Schofield (99bd37)

  115. I served with a young lady from Vietnam we nicknamed Low Westwoman. I won’t go into why, as that might identify her, but if she hadn’t already been married I would have married her.

    I don’t know how it would have worked out. I don’t even like Vietnamese food. Food is important.

    I would have probably ended up doing the cooking. If she could have stood up to my calimari and pasta rapido and saltembocca.

    Steve57 (0b1dac)

  116. C. S. P. Schofield (99bd37) — 7/4/2017 @ 1:11 am:

    The issue isn’t whether the Parents decision is the right one. The issue is that the State has decided to make it for them, and this is an abomination.

    Exactly. The most galling thing I have ever read is that the government wanted the child to die with dignity.

    According to the Honourable Mr. Justice Nicholas Francis of the High Court’s Family Division, who authored the decision subsequently upheld by the higher courts, death is “in Charlie’s best interests.” There was no “scientific basis” for believing that Charlie would respond positively to the experimental American treatment; meanwhile, there is “unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage.” “If,” wrote Justice Francis, “Charlie’s damaged brain function cannot be improved, as all agree, then how can he be any better off than he is now?” It was “with a heavy heart,” the judge said, that he sided with the doctors. Charlie should be permitted “to die with dignity…”

    Read more at: http://www.nationalreview.com/article/449079/charlie-gard-united-kingdom-court-defies-parents-wishes-rare-disease-die

    Not the parents.

    Steve57 (0b1dac)

  117. This is like the experts at the kiensington council, who insisted the cladding must go up because skyfpdtagin

    narciso (d1f714)

  118. The other reason they don’t want the baby out of their hands is because they want to dissect him for study, I suspect.

    nk (dbc370)

  119. 109. Dave (711345) — 7/3/2017 @ 10:41 pm

    Obviously, if there was any realistic prospect of a happy ending, however remote, it would be evil not allow the parents to pursue it. Everything I have read, based on expert medical opinion, says that’s not the case here.

    But why is it not the case? Did they know of the other treatment, and conceal it from the parents? Did they discourage the parents from looking elsewhere? Did they make some kind of false promises of help?

    What seems to be the case is that some damage is reversible, but not by too much. It’s reversible, and also further deterioration can be prevented, but it hasn’t been “scientifically proven” with a study. Which is the strongest kind of rot.

    If we had the same standards now as we did in the 1920s, it would have taken twenty five years to start treating diabetics with insulin. (There is one field of medicine where we still have those old standards: surgery, and we get the bad and the good from that. We have bad surgical operations, and we have life-saving help, and how much of one and how much of the other we have depends on the good judgment and the integrity of the doctors.)

    And I wouldn’t want there to be a study with this because whatever is being done needs to be tweaked on the fly, and it’s also unethical of course because it requires some patients not to get treated when the people doing the study believe that it works.

    Sammy Finkelman (081278)

  120. Dave @109:

    The judgment is that the poor child should not suffer even more than he already has when there is no prospect of material improvement.

    If that’s the case they should have said that anything they did since October, or since they arrived at the correct diagnosis, was futile and merely prolonged the baby’s suffering (as they are now contending.) There’s actually no suffering now any more.

    You should read what awfulpod said @62: The NHS teeters on complete insolvency on a daily basis, and each hospitals and even whole health districts can go bankrupt and close. They do take fee paying patients, and he knows people (among his patients) who have gone from Australia there for experimental (cancer) treatment. He’s a surgeon, so it’s other treatment. Surgery doesn’t have this kind of regulation, although medical devices now do.

    But the problem is, he says, is that if they let one patient escape the system, others will, and tehn they’ll maybe be required to pay for it.

    I don’t think that’s precisely the case here because this treatment is cheap. It’s more years of care since what it does is merely stablizies someone, and only slightly reverses things, but they ave plenty of cases like that.

    Rather, I think the problem is something else: It’s that they want to uphold the reputation of their hospital, and continue to claim taht they give the best possible care. They don’t want some other doctor or medical institution to succeed where they failed.

    This is also true in the United States, and so hospitals only want to discharge patients to a hospice, or a nursing home for palliative care, and if they can’t, have them die on their watch, or right after, but never have them go to another hospital or doctor which cures them. That will severely harm their reputation.

    But in the United states they can only mislead people or stall, r rely on people’s ignorance of their opportunities (and most other doctors don’t want to take over cases anyway)

    They don’t usually have the force of law behind them.

    Here they did. But anyway they won – they stalled long enough for the other treatment to be of not much help.

    Sammy Finkelman (081278)

  121. 123. nk (dbc370) — 7/4/2017 @ 5:17 am

    123.The other reason they don’t want the baby out of their hands is because they want to dissect him for study, I suspect.

    Maybe more important is that somebidy else doesn’t dissect him, and discover mistakes in treatment, or in diagnosis.

    Sammy Finkelman (081278)

  122. A life deemed unworthy subject to abortion. The progressive slope.

    n.n (9792c9)

  123. baby… dissect him for study

    and cannibalized for the lucrative clumps of cells and spare parts. Planned Parenthood.

    n.n (9792c9)

  124. Dana, you are no doubt correct about NHS making this a learning experience about their supreme authority. Also, we cannot discount their pure cowardice. The worse thing for a bureaucrat is to be caught out in the open under the glare of the public. None of these “authorities” have come forward to defend themselves, to my knowledge.

    Bureaucrats never change their minds, even on small things, like how to run their little fiefdoms or bigger things like the fact that eating fat does not make one fat. Changing their mind on this one would kill them.

    Patricia (5fc097)

  125. I don’t know about spare parts — nobody wants that genetic material in his body — but definitely for research.

    nk (dbc370)

  126. The NHS isn’t interested in research. Besides, they already have blood and tissue sammples and the DNA is sequenced.

    Sammy Finkelman (081278)

  127. Generations ago,when I was young a TS 21 infant had the misfortune to have two university emplyed parents at IU Bloomington.The infant had esophageal atresia (closed GI tract) which was easily surgically repairable.The parents refused permission for the surgery condemning the baby to starve,

    corwin (6d3e8e)

  128. Parents like that are the reason modern governments have the power to take control of baby Charlie’s life, corwin. In recent times, governments stepped in to protect children from selfish/stupid parents. As a result, now we all have to deal with governments that think they know better than everyone.

    DRJ (15874d)

  129. @124

    But why is it not the case? Did they know of the other treatment, and conceal it from the parents? Did they discourage the parents from looking elsewhere? Did they make some kind of false promises of help?

    You are usually admirably measured in your remarks Sammy, but that is remarkably cynical (and baseless, as far as I can tell) conspiracy-mongering.

    Charlie is reportedly only the 16th person ever diagnosed with this condition. He appeared completely healthy at birth. The idea that doctors somehow had the ability to save him but consciously chose not to is rather bizarre.

    It emerged in testimony that the doctor who performs the “experimental treatment” was not even aware of how serious Charlie’s condition was and said he was “less enthusiastic” after he learned the truth during the court proceedings.

    The doctor accepted that he was ‘not suggesting that it can provide a cure for Charlie’

    The treatment in question hasn’t even advanced to the stage of testing in mice with the same condition as Charlie.

    Pediatricians also testified that it is very likely Charlie is experiencing pain (since he can’t move or make a sound, there is no way to be certain). People in the terminal stages of a degenerative illness are not usually comfortable, though.

    I guess, ultimately, most people agree there is a point at which efforts to prolong life without any chance of real improvement should cease, and the question in this case is whether you trust the doctors to honestly assess that chance, or you trust the mother who (understandably) wants to believe in the impossible.

    Dave (711345)

  130. it’s not cynical the parents have a lot of resources to put towards this case

    but the fascist doctors at the NHS are all bloodthirsty for this little baby to die

    if it were leggy meggy what was looking for one last attempt at a treatment that could save her life you know goshdarn well she’d get it

    happyfeet (28a91b)

  131. Off topic but frumps are seeing red; Melania is looking her very breast today at the White House in blue.

    “Please don’t hate me because I’m beautiful.” – Pantene shampoo ad tag line, 1980’s

    DCSCA (797bc0)

  132. It is understandable Charlie’s mother would fight for him. Most people consider that a positive thing, especially when so many powerful people don’t want to fight for him.

    DRJ (15874d)

  133. The medical community is supposed to help people. It is incredibly difficult to have a child that the medical community wants to give up on. You have to fight the disease and the doctors.

    DRJ (15874d)

  134. Wit is sad when doctors refuse to abide by the hippocratic oath, but this is the procrustean bed that single payer forces one into.

    narciso (d1f714)

  135. I wouldn’t allow that Papist strunz anywhere near my healthy children

    Angelo (0ada1a)

  136. I agree with you about single-payer, narciso, but this attitude has been around for decades — long before socialized medicine. There are few doctors who welcome cases they don’t understand and don’t know how to treat, so sometimes they blame the patient. It is human nature to get frustrated with difficult problems, but rare diseases seem especially hard for doctors to handle.

    DRJ (15874d)

  137. I suppose so, but government mandates, take the pelletier case, give an excuse, for what they already want to do,

    narciso (d1f714)

  138. Absolutely.

    DRJ (15874d)

  139. and strikingly very few outlets, either here, and specially over there want to broach it, there’s a column in the telegraph but that’s about it,

    narciso (d1f714)

  140. Canada to Pay $10 Million and Apologize to Ex-Gitmo Inmate Guilty of Murdering US Medic

    happyfeet (28a91b)

  141. gee where will that money end up, prime minister zoolander, baffles,

    narciso (d1f714)

  142. does it seem like their priorities are out of whack,

    https://twitter.com/guardian/status/882377597610545152

    narciso (d1f714)

  143. Wit is sad when doctors refuse to abide by the hippocratic oath, but this is the procrustean bed that single payer forces one into.

    Do you have any evidence that monetary considerations played a role in the doctors’ recommendation or the court’s decision?

    The stated rationale, by the doctors and the court, was to prevent unnecessary pain and suffering that would result from prolonging the process of death without any hope of recovery.

    On what basis do you assume that dozens of people are complicit in trying to kill a sick child who they secretly (according to you) believe might otherwise live?

    What the parents want to do would cost the state nothing, since they propose to pay for it themselves, overseas.

    And they could not get ANY doctor to say that the treatment they want to try might possibly cure the child or save his life. Not one. Not even the doctor outside the UK who would do the treatment. In fact, that doctor explicitly said the opposite.

    Dave (711345)

  144. That is the procedure the spec denies was conducted or hursi Ali, bow.

    narciso (d1f714)

  145. It is not surprising that the doctors agree. Medicine is based on statistics. Rare diseases aren’t represented in the medical statistical models and not many doctors see or treat, let alone advocate for, patients who have rare diseases.

    DRJ (15874d)

  146. I think there only 16 cases of this tare condition.

    narciso (d1f714)

  147. Ok, Dave. Doctors, whose whole life consists of rationing out healthcare as employees of the NHS care more about the baby’s well-being and quality of life than his parents do; and their real reasons for wanting to kill him is to spare him pain and suffering and not to spare themselves having to justify to the bureaucracy which holds their careers in its hands the tremendous expense he is incurring NHS.

    I really like that first part. They love the baby more than his parents do. Keep on saying things like that, it’s very persuasive.

    nk (dbc370)

  148. Dave, we should put motivations aside. Everyone believes they are justified and doing the right thing. Even antisemitic dogmatic trolls bashing anyone who criticizes Dear Leader Trump believe, somehow, that they are moral people. And at the same time, they fall into the lazy trap of thinking that the people they disagree with are just evil. That’s sometimes true, but everyone in this matter thinks they are right.

    What really matters is that it’s just wrong for bureaucrats to take control of a man and woman’s boy. Motherhood and fatherhood are sacred. It’s as simple as that. Sometimes, a parent is so awful that they have violated their parenthood with abuse and neglect and the state does have to step in, but when parents actually want to give their child a chance, and have no other motivation, for bureaucrats to step in with their judgment is simply wrong. It’s a perversion. We’ve had a lot of canaries dying about the government overstepping by shutting down a beach or banning something or having some scandals, but to kill a child out of the bureaucracy’s idea of good? The motivations of the bureaucrats really do not matter at that point because it’s none of their business, it’s not their place.

    Dustin (ba94b2)

  149. They are not allowed, and this was the mindset of one of the big boosters of the mgs and socialism in general, George Bernard shaw.

    narciso (d1f714)

  150. You want Single-Payer?
    This is Single-Payer!

    askeptic (8d10f9)

  151. Remember how they idolized the mhs as the London Olympics this is their temple and thecsacrifices are not metaphorical.

    narciso (d1f714)

  152. @askeptic:This is Single-Payer!

    It’s considerably worse than that. This is not the NHS refusing to pay for the treatment–after all private insurance sometimes refuses to pay for treatments too.

    The treatment will be paid for by someone else, but the NHS demands that that baby die. They do not want the baby to die so they avoid paying for treatment. They want the baby to die. And a court has ordered that it be so.

    Frederick (9c5bb0)

  153. It comes from the same root, feudal really you belong to the state, this is a notion we shies a way from since the magna Carta, but the Beveridge bill of 1946 codified it.

    narciso (d1f714)

  154. Ok, Dave. Doctors, whose whole life consists of rationing out healthcare as employees of the NHS care more about the baby’s well-being and quality of life than his parents do; and their real reasons for wanting to kill him is to spare him pain and suffering and not to spare themselves having to justify to the bureaucracy which holds their careers in its hands the tremendous expense he is incurring NHS.

    It is not that that the doctors care more, it is that they are better informed about the child’s real condition and prospects for recovery, and less influenced by irrational (entirely understandable and admirable, but mistaken) emotional thinking.

    And as I pointed out (and you conveniently ignored) it is not just NHS doctors who think Charlie cannot get well.

    I really like that first part. They love the baby more than his parents do. Keep on saying things like that, it’s very persuasive.

    Stop putting words in my mouth, I never said they loved the baby more.

    I asked for evidence that financial considerations were involved, and nobody has provided any.

    Let me ask this: suppose instead of lying there inert and silent (since he can’t move or make a sound), little Charlie was screaming in pain day in and day out. Would you still want to keep him alive in that condition for weeks or months, to try a procedure that not a single doctor anywhere believes will improve his prospects for survival?

    The pediatricians treating him believe he is in pain, and it is hard to imagine how someone whose organs and muscles are all in the process of dying wouldn’t be.

    Dave (711345)

  155. @154

    What really matters is that it’s just wrong for bureaucrats to take control of a man and woman’s boy.

    I agree, even though I think the court has made the correct and moral decision (the one the parents should have made) in this case.

    Dave (711345)

  156. @118 Steve57

    Reparations demanded by slave people from non slave people. The longer your family has been here the more you pay. Ax anyone.

    Pinandpuller (605544)

  157. @120 Steve57

    Have you ever tried Vietnamese coffee? I started drinking Trung Nguyen premium blend. I had to buy something called a phin to brew it over a mug. Their style uses condensed milk but I use heavy cream, hot or cold. Very good.

    BTW have you heard about the Lone Star Tick? It makes you allergic to red meat. Since you like food you should probably avoid them.

    Pinandpuller (605544)

  158. @159 narciso

    Resistance is feudal.

    Pinandpuller (605544)

  159. It’s about…you’re a G.D. subject and don’t you G. D. forget it. Want another lesson?

    Richard Aubrey (a09608)

  160. And as I pointed out (and you conveniently ignored) it is not just NHS doctors who think Charlie cannot get well.

    I was doing you a favor. “Cannot get well” is eugenics thinking. Tiergartenstrasse 4 thinking. “It’s defective, it will always be defective, let’s just kill it.”

    nk (dbc370)

  161. I haven’t had that brand, but there is another that I found in a local shop.

    narciso (d1f714)

  162. G 7 is thecdesignation of the ones I like in the afternoon.

    narciso (d1f714)

  163. Dave:

    It is not that that the doctors care more, it is that they are better informed about the child’s real condition and prospects for recovery, and less influenced by irrational (entirely understandable and admirable, but mistaken) emotional thinking.

    And as I pointed out (and you conveniently ignored) it is not just NHS doctors who think Charlie cannot get well.

    I strongly disagree. Rare diseases are, by definition, rare. Doctors know very little about them. (Where they handle rare diseases in the US, they say “information is lacking.”) No one knows Charlie’s prognosis unless they do nothing, and then the prognosis is painfully clear.

    DRJ (15874d)

  164. Land in England and Wales is not allodial. It all belongs to the Crown, in more than theory. Further, in many places, its is explicitly under long term ground lease and not fee, making the point more obvious.

    nk (dbc370)

  165. Infantile mitochondrial depletion can cause death within a few years. Why should doctors be the ones to decide when that happens? What if the many medical organizations that are working with this disease find something that might help this family?

    The only thing some people with rare diseases have is hope. The worst thing about this case is it takes hope away and suggests hope is futile.

    DRJ (15874d)

  166. It is not moral to deny hope.

    DRJ (15874d)

  167. Another child has survived with this condition, and a US hospital has offered to treat Charlie for free. My guess is it’s the Cleveland Clinic, which has a program to treat this disease. (If so, they couldn’t ask for a better hospital in the world.) Why deny this chance to someone, especially to a baby?

    DRJ (15874d)

  168. 173. DRJ (15874d) — 7/5/2017 @ 6:47 am

    The only thing some people with rare diseases have is hope. The worst thing about this case is it takes hope away and suggests hope is futile.

    Oh, I think they gave them hope, until time ran out, but they were lying all the time.

    They didn’t want any help to come from anyone but them.

    They have a whole priniple of never, or almoost never using “unproven” treatments.

    And the standards for proving anything in this case are virtually impossible to meet even if you are willing to wait for the next generation and spend enormous amounts of time and money.

    Tests on mice? Like there are mice with this condition? Meanwhile there is anecdotal evidence. For those who disparage anecdotak evidence, what are internships and clinical training all about?

    They do give them hope. But they lie. Because their way is no hope. And not because there really is no hope.

    Sammy Finkelman (081278)

  169. It could also be Columbia University Medical Centre in New York, where the little boy with this condition was treated. Also a good medical facility.

    DRJ (15874d)

  170. Doctors are human, Sammy, so I’m sure some lie but my experience in dealing with doctors is that almost all of them want to help. However, their time is limited and I’m sure treating rare diseases is very time-consuming. If you have a rare disease, it’s important to find doctors with the time and desire to treat the condition and that usually means a research facility with doctors whose careers are focused on that condition.

    DRJ (15874d)

  171. 175. DRJ (15874d) — 7/5/2017 @ 6:56 am

    Another child has survived with this condition, and a US hospital has offered to treat Charlie for free. My guess is it’s the Cleveland Clinic, which has a program to treat this disease. (If so, they couldn’t ask for a better hospital in the world.) Why deny this chance to someone, especially to a baby?

    And demonstrate that
    somebody else can do better than them???

    I’m telling you, that’s the real reeason, although they will talk rot about any alternative not being “scientifically proven”, np “scientific basis” for assuming anything will work etc.

    You give examples? That’s “anecdotal evidence!” There are no “effective therapies.” That’s our story, and we’re sticking to it. And we’ll stall and keep on doing futile things until there really is no hope. At that point, we will propose, and try to force, an “end to his suffering.”

    Mr. Justice Nicholas Francis of the High Court’s Family Division, said “unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage,” which is correct, or close to correct, but that doesn’t say it couldn’t have prevented it.

    He said death is “in Charlie’s best interests.” If so, wasn’t that true back when this started? Why did they prolong his agony? What did all the treatment do? Used up time, preveneted them from looking elsewhere, that’s what it did.

    Sammy Finkelman (081278)

  172. 178. DRJ (15874d) — 7/5/2017 @ 7:03 am

    178.Doctors are human, Sammy, so I’m sure some lie

    They lie about the prognosis or soft pedal it. And that comes even more from other hospital workers.

    When a doctor gives a bad prognosis that’s probably the case – for that doctor or hospital.

    If you have a rare disease, it’s important to find doctors with the time and desire to treat the condition and that usually means a research facility with doctors whose careers are focused on that condition.

    And some hospitals, particularly those that want to maintain good reputations, don’t want that to happen.

    The only acceptable outcomes are cures, or “death with dignity”

    Not someone else curing, or substantally extending life or relieving suffering on a case that they gave up on.

    The last thing they want is transfer to different doctors. That could show them up. This probably stems from the highest adnministrative level in the hospital. After all, who went to court – the doctors or the hospital?

    Sammy Finkelman (081278)

  173. Go try to get a discharge from a hospital taht doesn’t want to discharge someone.

    One hospital in New York released a patient but only after issuing a death certificate. (there truly was not too much to do, but the family at least wanted him to die on his own time.)

    http://www.jta.org/2017/06/25/news-opinion/united-states/brooklyn-man-issued-death-certificate-while-on-life-support-dies

    Sammy Finkelman (081278)

  174. It takes time to diagnose rare diseases and some people never get a diagnosis.

    I think everyone is being sincere here, Sammy, but you are probably right that the parents care more about keeping Charlie around than the doctors do.

    DRJ (15874d)

  175. I also agree that once doctors make up their minds that something should or shouldn’t be done, they won’t change them.

    DRJ (15874d)

  176. I dint grant them the benefit of the doubt

    narciso (d1f714)

  177. Dave,

    If you are not deeply frightened by the authority the State is assuming in this case, I suggest that you are not paying attention.

    C. S. P. Schofield (99bd37)

  178. I agree with CSP Schofield. In addition, advice from medical, scientific and legal professionals is meant to inform us. Professional advice is not supposed to replace our ability to make independent, informed decisions … even though unfortunately many people today believe it does.

    DRJ (15874d)

  179. A couple of interesting updates. First, foreign secretary Boris Johnson has told Italy that Charlie cannot be moved to the “Pope’s hospital”:

    The foreign secretary told Italian Foreign Minister Angelino Alfano legal reasons prevented him from being moved.

    The president of the Bambino Gesu hospital in Rome had asked British doctors if 10-month-old Charlie could be transferred to his care.

    It comes after the Pope tweeted his support for Charlie on Monday.

    Charlie has been receiving specialist treatment at Great Ormond Street Hospital since October.
    Mr Johnson has told his Italian counterpart it is “right that decisions continued to be led by expert medical opinion, supported by the courts”, in line with Charlie’s “best interests.”

    Because the courts and the hospital are now the surrogate parents. The parents are made irrelevant.

    Second, Theresa May refuses to intervene on Charlie’s behalf and backs the courts:

    Talking about the possibility of Charlie being sent to the US, Malhotra asked May: “Would the prime minister do all she can to bring the appropriate people together to try and make this happen?”

    Saying her thoughts were with the infant and his family, May said she could “fully understand and appreciate that any parent in these circumstances would want to do everything possible and explore every option for their seriously ill child”.

    The prime minister added: “But I also know that no doctor ever wants to be placed in the terrible position where they have to take such heartbreaking decisions.

    “The honourable lady referred to the fact that we have that court process here. I’m confident that Great Ormond Street hospital have and will always consider any offers on new information that has come forward, with consideration of the wellbeing of a desperately ill child.”

    Dana (023079)

  180. I think doctors and research scientists have convinced themselves and society that, because they have special knowledge, their decisions are always better than laymen’s decisions. They do have special knowledge and there are areas where that knowledge is certain and generally trustworthy, but there are still many areas where their knowledge is more uncertain art than certain science. Rare diseases are one of those areas.

    DRJ (15874d)

  181. 188. DRJ (15874d) — 7/5/2017 @ 12:39 pm

    They do have special knowledge and there are areas where that knowledge is certain and generally trustworthy, but there are still many areas where their knowledge is more uncertain art than certain science. Rare diseases are one of those areas.

    theer are areas where they know and theer are areas where they don;t know, but that’s not limited to rare diseases.

    Any place where the prognosis is bad is a place where the possibility exists that somewhere out there there is somebody with a better treatment idea. And they are not all quacks.

    Sammy Finkelman (02a146)

  182. That’s true, Sammy.

    DRJ (15874d)

  183. If it were not true, it would mean that no further progress on that disease or condition was possible.

    Well, actually they would hold that it was, but only through approved channels.

    And the other posisbilitirs aren;t even unknown.

    For instance, for ebola, or any infection impervious to antibiotics: dialysis.

    http://time.com/3586271/ebola-treatment-dialysis-blood/

    This can work for any infectious disease. The thing being filtered out can be set on the fly.

    It just requires money – and the courage of someone’s convictions – to scale up. The U.S. military ought to be studying and preparing this.

    Theer are all kinds of lost and ignored cures. Quackery too, and it may get more publicity, because serious people with hopes of mainstreaming something are scared of the FDA, but the human mind should be capable of distinguishing between the two.

    Sammy Finkelman (02a146)

  184. There is nothing preventing them from coming to the US and dying from simple lack of funds.

    Ugly? Absolutely. But no one has a solution on offer. Socialized medicine kills this child. Privatized medicine kills this child.

    We could put trillions into healthcare and be the savior of this child and millions of others. We could be a shining example to the world. But that is not happening, is it?

    Oh please (d8ebd4)


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