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Source: (consider it) Thread: Medical treatment--who gets what, who decides, who pays?
Baptist Trainfan
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Some of you may recall A J Cronin's novel "The Citadel" which was a stinging - if a bit over-wrought - criticism of the private health care that existed in the 20s and 30s. It's a long way from the genteel world of Dr. Finlay and Tannochbrae!
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mdijon
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Back to poor old Charlie this is really unhelpful. Offers to transfer him to the Vatican city? What are they thinking?

After they allowed the last pope to die I thought the tyranny of never accepting death was over.

The sheer cruelty of a family struggling to cope with the end of life of their child played out amid geopolitics and the head of the RCC is really striking. I feel very moved by much of what Pope Francis has done, but I think he's got this one badly wrong. It's an end-of-life media circus for a baby.

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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon

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Jane R
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Well, the Pope and the American President are 'traditional men who believe in the family.' That's nice. For them. Not so nice for poor Charlie, turned into a political football. WTF does the Pope think the hospital at Vatican City can do for him that Great Ormond Street can't?

Surely, if Charlie has been baptised, he is safe in the hand of God whatever happens to his physical body. The Pope's spiritual authority would be better employed helping the Gards to understand this.

[Mad]

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mdijon
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quote:
Originally posted by Jane R:
Well, the Pope and the American President are 'traditional men who believe in the family.'

Like the problem with the Ormond Street docs and nurses is that they don't believe in the family enough to save Charlie. But in fairness that's the quote of a grieving and desperate mother.

The only saving grace about grief is the moment that you let go of desperation, and the only saving grace of desperation is that it defends you from grief. The moments where denial allows both grief and desperation to intersect is pretty brutal.

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mdijon nojidm uoɿıqɯ ɯqıɿou
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Jane R
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mdijon:
quote:
But in fairness that's the quote of a grieving and desperate mother.
True. [Votive]
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Soror Magna
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quote:
Originally posted by Golden Key:
...
Both corporations and all levels of gov't (pardon my language) screw us over. To paraphrase G.K. Chesterton, it's not that universal health care in America has been tried and found wanting, or that nobody bothered; it's that we've tried and we've fought for it, and the powers that be keep taking it away.
...

So why do you think the citizens of the USA have failed where every other developed country has had some measure of success? It's not like the citizens of other capitalist democracies didn't face the same obstacles. Where's the Spirit of '76? Where's the Yankee ingenuity? Don't y'all have lotsa guns to stop a tyrannical government?

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"You come with me to room 1013 over at the hospital, I'll show you America. Terminal, crazy and mean." -- Tony Kushner, "Angels in America"

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Brenda Clough
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If we could agree, we would prevail. We don't agree. A substantial fraction of the population is being lied to (they don't call it Faux News for nothing) and until they quit swallowing the lie we can't have nice things.

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Soror Magna
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Sorry, that came out way snarkier than I meant. I'm incoherent from incomprehension. Both houses of Congress have passed legislation that has less than 20% public support (and that's probably generous). Trump will autograph any smooth surface he is presented with. If Wealthcare goes through, historians will look back on that as the moment the republic finally collapsed. That's how serious this is, as if the life and health of every American wasn't serious enough.
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cliffdweller
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quote:
Originally posted by Soror Magna:
Sorry, that came out way snarkier than I meant. I'm incoherent from incomprehension. Both houses of Congress have passed legislation that has less than 20% public support (and that's probably generous). Trump will autograph any smooth surface he is presented with. If Wealthcare goes through, historians will look back on that as the moment the republic finally collapsed. That's how serious this is, as if the life and health of every American wasn't serious enough.

I'm with you. Faught with helpless worry. Over All The Things.
[Hot and Hormonal]

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"Here is the world. Beautiful and terrible things will happen. Don't be afraid." -Frederick Buechner

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Brenda Clough
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The only thing we can do is not suffer in silence. Mail a letter to your congressperson or senator. If they are fighting this legislation, assure them of your support; if they are pushing it promise to vote against them. You could repeat this in email (if they are taking emails), by fax (if they have not unplugged the fax machine) or in person (if you can find them). It is always possible to go to your local office and express yourself to a weary staffer. I have done this, and was smart enough to sweeten the visit with cookies, but I live in a deep blue district.

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Doublethink.
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quote:
Originally posted by mdijon:
Back to poor old Charlie this is really unhelpful. Offers to transfer him to the Vatican city? What are they thinking?

After they allowed the last pope to die I thought the tyranny of never accepting death was over.

The sheer cruelty of a family struggling to cope with the end of life of their child played out amid geopolitics and the head of the RCC is really striking. I feel very moved by much of what Pope Francis has done, but I think he's got this one badly wrong. It's an end-of-life media circus for a baby.

The family contacted the hospital I believe, making the request.

(From the 5/7/17 BBC News article: "The hospital's president Mariella Enoc said: "I was contacted by the mother, who is a very determined and decisive person and doesn't want to be stopped by anything.")

[ 06. July 2017, 18:42: Message edited by: Doublethink. ]

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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

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Meconopsis
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Lots of references from U.K. folks about American media & their acceptance of the current system of health-care delivery here in the U.S.
I would not be surprised if "American Organized Insurance" did their best to see that media-employees (especially journalists) receive excellent health insurance.
That would be worth a research project, I think.

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Meconopsis
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Soror Magna:
quote:
"Wealthcare"
LOL; that just about nails it.
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mdijon
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quote:
Originally posted by Doublethink.:
The family contacted the hospital I believe, making the request.

(From the 5/7/17 BBC News article: "The hospital's president Mariella Enoc said: "I was contacted by the mother, who is a very determined and decisive person and doesn't want to be stopped by anything.")

The thing to do would have been to compassionately explain that they could not offer any medical care not available in Great Ormond Street. Not take to make offers implying they could do something that would go to sound bites.

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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon

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Doublethink.
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I agree.

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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

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stonespring
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I'm very late to this thread, but does anyone know what the laws would be in comparable situation in the US? If it varies based on the state, what would the laws be like in the states you know about? I haven't heard of a case in the US where a hospital sought and obtained court approval to remove a baby from life support against the parents' wishes or refused the parents' requests to move the baby to another hospital where the baby could receive experimental treatment when the parents were fully able to pay the cost of transportation and treatment - assuming that the baby could be transported without the transportation itself being an undue risk to the baby's life, but I am not very knowledgeable in such matters. There seems to be some big legal difference between the US and the U.K. here aside from the huge inequities of the US healthcare system, but I'm not knowledgeable enough to explain it.

I tend to think of myself as liberal on dead horse issues but this case and others like it makes me very unsure of where to stand. I'm not sure if the parents or the medical experts should have the final say.

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Ricardus
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quote:
Originally posted by stonespring:
I'm not sure if the parents or the medical experts should have the final say.

Put in those terms I don't see how the answer can be anything other than 'the medical experts', to be honest. Anything else is like saying parental choice includes the right to choose their own gravitational constant.

If the medical consensus is that further treatment will make Charlie's life worse, then the right that the parents are asserting is the right to live in a different universe.

Of course the medical consensus may not be right, and to be fair I think that is what Charlie's parents are claiming. But when you go down that route you are no longer arguing about parents' rights versus medical experts, but rather about the relative merits of different sources of medical expertise.

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Then the dog ran before, and coming as if he had brought the news, shewed his joy by his fawning and wagging his tail. -- Tobit 11:9 (Douai-Rheims)

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Sarasa
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Charlie Gard was the lead story on the BBC News this evening. It seems like Great Ormond Street have gone back to the High Court in the light of a letter from experts about the experimental treatment.There was an interview with the mother and I think she seems (as I think I would in the same case) to be expecting such treatment to work a miracle. She also claimed that her son wasn't in pain while the hospiital says he is. I don't know if there is any objectve way of telling

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stonespring
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quote:
Originally posted by Ricardus:
[QUOTE]
If the medical consensus is that further treatment will make Charlie's life worse, then the right that the parents are asserting is the right to live in a different universe.

Is keeping Charlie on life support what is meant by "further treatment"? If so, then the hospital is basically saying that dying now is not only preferable to keeping Charlie on life support and thereby subjecting him to more pain until a death that will come anyway, but that causing Charlie's death now, even when Charlie's parents disagree, is in Charlie's best interest. I may have the facts of the case wrong, so please correct me if I do. But it seems that the hospital is saying that it is in Charlie's best interests to have what is keeping him alive taken away rather than continue to live a life of suffering with no hope of a cure. It is the irreversibility of death, our lack of knowledge of what, if anything, comes after it, and our similar lack of knowledge of what exactly is going on inside Charlie's mind that all make me very wary of allowing a hospital to overrule the parents in such a case. There are probably loads of other cases in which it would be clear that the parents' wishes are harmful (such as parents' whose religious beliefs cause them to reject treatment for a child with cancer) and where medical experts should be allowed to overrule the parents. That's why I am asking about what the laws are here in the US (or in individual states), if anyone knows.

Moving Charlie to the US to undergo experimental treatment is a separate issue, which I am also conflicted about. And I know the hospital is in no rush to pull the plug on Charlie, and they have said so. But I don't see a clear cut case making it obvious that causing Charlie's death by removing life support is the only ethical thing to do - or that doing so would not be unethical when Charlie's parents are against it.

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lilBuddha
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quote:
Originally posted by stonespring:

It is the irreversibility of death, our lack of knowledge of what, if anything, comes after it,

Irrelevant. Kept alive, he has no life and probable pain. If he dies, that ends. Whether it is to nothingness or God's arms, why would prolonged suffering here be a good thing?
quote:

and our similar lack of knowledge of what exactly is going on inside Charlie's mind

The variant of the condition that he has causes brain damage. Nothing will reverse this. What is going through his mind is pain, he just cannot express it.
And the treatment suggested has not been tested on anything not even mice.

To the idea of palliative care to the end of his life as has been ofered, why?

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So goodnight moon, I want the sun
If it's not here soon, I might be done
No it won't be too soon 'til I say goodnight moon

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Boogie

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Nobody would be causing his death, they would be allowing his death.

Surely brain scans would show if he's in pain? If he is in pain and has no chance of any life other than that of a brain dead machine then the kindest thing will be to let him go.

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Jane R
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Brain scans on babies as young as Charlie are very rare, IIRC (Mdijon will correct me if I'm wrong), so they probably don't have much data from neurotypical babies to compare him with. And if he has extensive brain damage it might not be possible to interpret the scans anyway.
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mdijon
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Yes, sadly brain scans don't have any validated way of determining if someone is in pain, and especially not in young babies.

One could speculate on the basis of the degree of damage seen on a brain scan whether it was possible to feel pain, but that doesn't add a lot to the information one already has in dealing with a baby who doesn't seem to be responding to anything.

These are really difficult decisions, one really needs parents to understand and engage to support the decision making, which of course has broken down here, and the media circus must be making it totally impossible to have a sensible discussion.

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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon

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Jane R
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The thing about brain scans is, they can't actually tell you what someone is thinking. All they can tell you is which parts of the brain are active. If you want to be sure of what someone is thinking you have to ask them, which is impossible in this case.

(and you can't even be sure if you ask... people lie).

[ 08. July 2017, 09:44: Message edited by: Jane R ]

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Twilight

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quote:
Originally posted by Boogie:
Nobody would be causing his death, they would be allowing his death.


That's such an important point and one people keep forgetting where someone is on long term life-support.

It bothers me that the Pope, leader of the church that frowns on birth control because it "interferes with the will of God," is all for forcing an infant to stay alive long after God has called him home.

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Leorning Cniht
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quote:
Originally posted by stonespring:
I'm very late to this thread, but does anyone know what the laws would be in comparable situation in the US?

Jahi McMath?
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L'organist
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posted by Twilight
quote:
It bothers me that the Pope, leader of the church that frowns on birth control because it "interferes with the will of God," is all for forcing an infant to stay alive long after God has called him home.
But this is nothing new.

The RC church has been employing a pick-and-mix attitude to advances in science for centuries, and the other churches too, though with less fanfare.

Contraception: "articifial" is labelled as interfering with God's will, but any couple who manage to play successfully the vatican-approved russian roulette rhythm method aren't.

Penicillin to treat infection is OK but wearing a condom to prevent infection in the first place is wrong.

IVF and other forms of fertility treatment are wrong but transplant surgery is OK.

But then this is the institution which canonised Mother Teresa, a woman who took in the sick and gave them paracetamol (if they were lucky) when the government hospital down the road would have treated them and enabled them in many cases to return to a useful, productive life.

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Rara temporum felicitate ubi sentire quae velis et quae sentias dicere licet

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Gee D
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quote:
Originally posted by Twilight:

It bothers me that the Pope, leader of the church that frowns on birth control because it "interferes with the will of God," is all for forcing an infant to stay alive long after God has called him home.

I'm not sure that that's what the Pope has in fact said. AFAICS, his only statement - as reported in The Guardian - has been:

In a statement on Sunday evening, the Vatican said the pope was following the case of the 10-month-old, who has a form of mitochondrial disease, “with affection and sadness” and was close to his parents: “For this he prays that their wish to accompany and treat their child until the end isn’t neglected.”

Now, minds may differ, but that does not seem to be a call to force poor little Charlie to be kept alive.

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mdijon
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John Paul II died at home in his apartment rather than with maximal hospital care. He was quoted as saying "Allow me to depart to the house of the Father".

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mdijon nojidm uoɿıqɯ ɯqıɿou
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Gee D
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Standard Catholic practice here is much the same - Clough's dictum applies.

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mdijon
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Reading the context of the full poem I think Clough was being sarcastic when he talked of officiously striving to keep alive being not a sin. Ironic that it has become such a slogan for the acceptability of allowing nature to take it's course.

Of course when he was writing there was no intensive care.

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Gee D
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quote:
Originally posted by mdijon:
Reading the context of the full poem I think Clough was being sarcastic when he talked of officiously striving to keep alive being not a sin. Ironic that it has become such a slogan for the acceptability of allowing nature to take it's course.

Of course when he was writing there was no intensive care.

I don't think sarcastic is quite the right word, but your second sentence is headed in the wrong direction. Many read the 'Officiously" to qualify "strive"; I'd strongly argue that it belongs with "to keep alive". Don't poke your nose into something which is really not your business.

You're right, there was no intensive care then, at least as we know it, and no life support systems either. What needs to be recognised is that a time comes when life support has not worked and there is no known solution. Clough would say that that's the stage where any further attempts to maintain life become officious.

[ 10. July 2017, 12:53: Message edited by: Gee D ]

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Not every Anglican in Sydney is Sydney Anglican

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mdijon
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quote:
Originally posted by Gee D:
Clough would say that that's the stage where any further attempts to maintain life become officious.

I think that's what people who quote the phrase mean by it, and I often use it myself in that way.

But looking at the rest of the poem, for instance the lines
quote:
Thou shalt not steal; an empty feat,
When 'tis so lucrative to cheat:

I don't think we would interpret that as suggesting cheating is OK. It is suggesting that there is hypocrisy in cheating while apparently eschewing stealing. Likewise I suspect the line about not officiously striving to keep alive is being contrasted with murder to imply similar hypocrisy.

I don't agree with this by the way, but that's what I think the original poem was saying.

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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon

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Jane R
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mdijon:
quote:
Likewise I suspect the line about not officiously striving to keep alive is being contrasted with murder to imply similar hypocrisy.
As you say, intensive care did not exist when the poem was written so whatever the poet's intention may have been he can't have been talking about that.

I suspect he was talking about the hypocrisy of not murdering people directly, but instead creating conditions where they die prematurely and/or unnecessarily. Slum landlords are not a modern invention (to take just one example). Or he might have been thinking of the story of the Good Samaritan.

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Brenda Clough
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My husband's surname (from which I get it) is so relatively rare that it's always a surprise to read of someone else who has it.

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Bishops Finger
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Ah, but it's common enough over this side of the Pond!

From Wikipedia (and therefore True):

Last name: Clough. Recorded as Clew, Clow, Clowe, Clough, Cluff, Cloghe, Clougher (England), Cleugh and Cleugher (Scotland) and in Devonshire, South West England, Cloke, Cloak, Cloake, and Clooke, this is an English surname of ancient origins.

IJ

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The future is another country - they might do things differently there...

Posts: 8352 | From: With The Glums At The Bus Stop | Registered: Jan 2004  |  IP: Logged
PaulTH*
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# 320

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I can only try to imagine the anguish and sense of helplessness which must be afflicting Charlie's parents right now. Only someone who had been through something similar, which I haven't, could be qualified to give a serious opinion on their desperate and tortured pleas to help their child. Yet the doctors at Gt Ormond St Hospital, acknowledged as some of the best in the world are unlikely to be wrong about Charlie's condition. And the judges know this well.

The so called experimental treatment which Charlie has been offered, has improved brain function in some children, but none of them had the condition Charlie suffers from, nor did they have his atrophied brain which hasn't grown for three months. It might be quite tempting for the judge, given that there's a baying mob outside his courtroom acting as if he holds Charlie's life in his hands, to kick it into the long grass by allowing him to be taken to America and out of his hands, but it would be wrong and irresponsible. The money to fund his treatment is already available, and with President Trump and the Pope weighing in, he'll get it free anyway.

But this misses the point that his condition is incurable and it's touch and go whether he could even survive the journey. At the risk of arousing anger in those who disagree, I hope the judge upholds the opinion of the Great Ormond St experts and lets Charlie die with peace and dignity. He will have a better time enwrapped in God's loving embrace.

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Yours in Christ
Paul

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PaulTH*
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# 320

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quote:
Originally posted by Brenda Clough:
My husband's surname (from which I get it) is so relatively rare that it's always a surprise to read of someone else who has it.

As Bishop's Finger has pointed out, Clough is a good old English name. It comes mainly from Yorkshire and Lancashire and means ravine or precipitous slope. So if your husband has inherited this name down the line, he's likely descended from someone who lived near a raving in Yorkshire, although there are many ways of acquiring a surname. It's also sometimes part of compound names such as Fairclough meaning beautiful ravine, or Barraclough meaning wooded ravine.

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Yours in Christ
Paul

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quetzalcoatl
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# 16740

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The baying mob that PaulTH referred to, could be seen briefly on the TV news, and I felt horrified by them. What on earth are they doing, creating a media circus over a little boy dying? And I add to that everyone who inflates this, of course, Trump and the Pope. I believe the right wing in the US are portraying the NHS as some kind of Nazi death cult. What shameful exhibitionism.

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no path

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stonespring
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# 15530

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I'm not sure if these developments mean much - looks like nothing is likely to change for the moment.

http://www.bbc.com/news/uk-england-london-40552026

I don't necessarily agree with this doctor, and he hasn't evaluated Charlie personally so maybe it's not his place to offer his opinion, but I think what he has to say is interesting:

https://www.nytimes.com/2017/07/06/opinion/let-charlie-gards-parents-decide-his-fate.html?smprod=nytcore-iphone&smid=nytcore- iphone-share

I'm not sure what "dying with dignity" means for a baby. I think that, for those who are arguing in support of the hospital's decision, preventing future suffering is more persuasive. He has no notion of autonomy or any of the other things that make people with chronic debilitating illness want to end their lives. I would think that like most animal I can think of, if there is any sense of motivation in his damaged brain (that becomes more damaged as time passes), it would be to survive, but I am speculating where I am extremely ignorant. It is true that some wounded, ill, or elderly animals start refusing food and isolating themselves as if they were preparing themselves for death. I do not know if Charlie, if he were able to move on his own, would do the same.

I am terrified by any arguments for euthanasia when the patient is not able to speak for him/herself or has not signed a document in advance indicating his/her wishes (or when the reason for wishing to end one's life is mental illness). I think that just as anti-abortion and anti-euthanasia/anti-assisted suicide activists, conservative religious leaders, right-wing media, and right-wing populist politicians are using Charlie to promote their own agendas, pro-euthanasia/assisted suicide activists, pro-abortion rights activists, some (not all) anticlerical secularists, left-wing media (I'm referring to clickbait, not respected news sources), and perhaps some politicians (although I haven't heard of any) are also using Charlie to promote their own agendas. A lot of the people who are worried about Charlie's suffering or dignity are thinking of themselves in a similar situation where they could not move or communicate and were in increasing pain and disability - but they can't compare themselves, who have lived a life, had all kinds of memories and complex thoughts, and developed a sense of the importance of being independent and having agency - all of which I do not think one can project onto an infant with no use of language, very limited sensory input and brain damage.

I confess to being a fence sitter and perhaps that is irresponsible. It's not my decision to make regarding anything in this specific case, although as a voter I have a say on the laws about such cases in my own jurisdiction. I don't like the idea of deciding that an infant's life isn't worth living and is more cruel than causing his death. However, I think that the extraordinary measures taken to sustain human life when death is certain and suffering is great is a somewhat baffling example of human exceptionalism given the cruelty humans constantly show to animals of relatively advanced mental development, arguably more advanced mental development than very young children, people with severe irreversible brain damage, and people with severe irreversible dementia. I'm not advocating for euthanasia of any kind but rather for more humane treatment of animals - but I eat meat so I'm a huge hypocrite anyway (perhaps the fact that I am being treated for an eating disorder gives me somewhat of an excuse to avoid making huge changes to my diet for the time being. I'd like to stop eating most meat one day, if it doesn't cause too much inconvenience to my family).

Lastly, I think it is ridiculous to argue that, once any person has been put on life support, that removing that life support is not causing his/her death. Stephen Hawking (and Christopher Reeve, while he was alive) need/needed all kinds of daily interventions in order to remain healthy and alive, and no one would argue that denying either of them those interventions would not be deliberately causing them physical harm, if not causing their death. Even if killing someone who is suffering IS the moral thing to do, it is still killing someone. Let's not euphemize the situation.

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mdijon
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# 8520

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quote:
Originally posted by Jane R:
Slum landlords are not a modern invention (to take just one example). Or he might have been thinking of the story of the Good Samaritan.

You're right, there's no particular reason to read the original poem as referring to medicine. I've always heard those lines quoted in that context, so I read that assumption back in.

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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon

Posts: 12235 | From: UK | Registered: Sep 2004  |  IP: Logged
mdijon
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# 8520

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quote:
Originally posted by stonespring:
I'm not sure what "dying with dignity" means for a baby.

What it doesn't mean is the increasing difficulty to maintain intravenous access, meaning that an intern will be stabbing fragile bruised veins all over the baby every time the drip falls out. The tube down into the baby's lungs will need suctioning regularly, the skin will be in increasingly poor condition and at risk of breaking down and ulcerating. The lung might collapse under the pressures required for ventilation and then a chest drain will be needed.

There are barbaric aspects to a stay in intensive care, and at the point where no-one involved in the care believes in any patient benefit the sacrifice begins to feel quite appalling.

quote:
Originally posted by stonespring:
Lastly, I think it is ridiculous to argue that, once any person has been put on life support, that removing that life support is not causing his/her death.

The thing is that life support is not a single box that gets attached and then removed once as two single actions.

There is a ventilator with a tube into the lungs. The settings need adjusting for various deteriorations that might occur, the tube may need repositioning, may even fall out. Pneumonia may intervene and need treating.

There will need to be a drip with venous access, and that needs to be replaced. Nutrition needs to be given by an naso-gastric tube. Sometimes the line will get infected and that will need treating.

There is the original act to start doing intensive care, but carrying on with intensive care involves a lot of activity. Often the activity is withdrawn in stages, or ceiling are set to the activity (e.g. we won't ventilate beyond a certain requirement).

So withdrawing intensive care is not really the same as not starting it, but likewise I cannot see it as identical to euthanasia, and neither do the courts.

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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon

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mdijon
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# 8520

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quote:
Originally posted by quetzalcoatl:
What on earth are they doing, creating a media circus over a little boy dying?

Something that gets lost in the circus around this one little boy is that similar stories are found in every hospital with intensive care. All over doctors are having difficult conversations with parents about whether they have reached a point where one must accept the inevitable and further treatment is not in the child's best interests.

Why did this one case reach the point of going to the courts and of becoming a media circus? And I wonder what impact it is having on all the other cases around the country - around the world even.

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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon

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Boogie

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# 13538

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quote:
Originally posted by mdijon:
quote:
Originally posted by quetzalcoatl:
What on earth are they doing, creating a media circus over a little boy dying?

Something that gets lost in the circus around this one little boy is that similar stories are found in every hospital with intensive care. All over doctors are having difficult conversations with parents about whether they have reached a point where one must accept the inevitable and further treatment is not in the child's best interests.

Why did this one case reach the point of going to the courts and of becoming a media circus? And I wonder what impact it is having on all the other cases around the country - around the world even.

This was my thought too. Doctors and families are making decisions about whether to put children on life support/keep them on life support or allow them to die every day of the year. I feel for all doctors who do this job - nothing is ever completely black and white and sometimes they have to make judgement calls. If the family don't agree then what choice do they have but to get the courts involved?

Imagine if every terminally ill child were put on life support 'just in case' a miracle cure could one day maybe available. It'd be a nightmare situation even if the machines were available - which, of course, they are not.

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Garden. Room. Walk

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Enoch
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# 14322

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quote:
Originally posted by PaulTH*:
quote:
Originally posted by Brenda Clough:
My husband's surname (from which I get it) is so relatively rare that it's always a surprise to read of someone else who has it.

As Bishop's Finger has pointed out, Clough is a good old English name. It comes mainly from Yorkshire and Lancashire and means ravine or precipitous slope. So if your husband has inherited this name down the line, he's likely descended from someone who lived near a ravine in Yorkshire, although there are many ways of acquiring a surname. It's also sometimes part of compound names such as Fairclough meaning beautiful ravine, or Barraclough meaning wooded ravine.
How's it pronounced in the US? If spelt Clough the word is usually pronounced as though spelt 'cluff' here.

I'd disagree slightly as to meaning. I'd take it to mean a small valley that is only open at one end.

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Brexit wrexit - Sir Graham Watson

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mdijon
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# 8520

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quote:
Originally posted by Boogie:
If the family don't agree then what choice do they have but to get the courts involved?

To keep talking to the medics. Usually one reaches an understanding eventually. Normally the demand from the family is for more time to assess progress, and usually the medics will give way but keep on explaining what is happening and eventually the family will move on from denial/disagreement to acceptance.

A difference here is that the family are demanding a very specific treatment and/or a transfer somewhere else. That is rather more stark, and if the family are insistent it is done at a particular moment, or remain insistent despite time passing then there is an intractable problem.

One could still deal with that by asking for second or third opinions, and usually families will eventually accept those.

In this case I expect there is something about the approach this particular family have taken which has led to an escalation, and now it has become a media circus with political figures involved it is hard to resolve without the courts.

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Jane R
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It's all reminding me of this case, which has similar points in that the parents wanted a very specific treatment for their child and were prepared to go to extreme lengths to get it. That story did have a happy ending (eventually); I gather Ashya King is still alive and his tumour has gone. However, the issue there was that the treatment the hospital was offering was not acceptable to the parents and the alternative they wanted wasn't available in this country, not that there was no treatment available at all.

Just to reiterate: Charlie is not receiving treatment for his condition. There is no cure; the experimental treatment the Gards want to try has never been used on anyone with such serious brain damage. He is being kept alive by machines (at a significant cost, as mdijon has explained) while lawyers argue over exactly when he will be allowed to die.

Posts: 3779 | From: Jorvik | Registered: May 2001  |  IP: Logged
Jane R
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# 331

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[missed the edit window] Clarification: when I said 'kept alive...at a significant cost' I was of course referring to the cost in pain (if Charlie is able to feel pain now). There is a financial cost, but nobody is really worrying about the money (except, presumably, the Great Ormond Street financial director who will have to explain the hole in his/her budget at the end of the financial year).

And it's been turned into a media circus because:
(a) dying babies sell newspapers (horrible, but true)
(b) it helps to build the case that the NHS should be privatised. Because, look, they let babies die.
(c) it distracts us from other things the government is doing. Look at us all, talking about Charlie Gard instead of kicking up a stink about the actions of the most wilfully stupid and incompetent government in my lifetime. Misdirection, the key to pulling off a successful magic trick.

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mdijon
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There's a very interesting report on what went wrong. A breakdown in relationships between parents and hospital is likely at the heart of many of these.

In Ashya King's case it is worth noting that once subjected to clinical trials the experimental treatment (Proton beam) turns out to have a similar survival chance as conventional treatment, but is now adopted by the NHS as it has fewer side effects including less hearing loss.

This is the sort of thing that becomes very hard to know if experimental treatments go straight to being available to whoever wants them rather than assessed as a trial intervention.

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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon

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Baptist Trainfan
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# 15128

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quote:
Originally posted by Jane R:
Clarification: when I said 'kept alive...at a significant cost' I was of course referring to the cost in pain (if Charlie is able to feel pain now). There is a financial cost, but nobody is really worrying about the money (except, presumably, the Great Ormond Street financial director who will have to explain the hole in his/her budget at the end of the financial year).

But there could be a cost to other children who may not be able to get the treatment they need, driven by the finity of financial and other resources such as personnel. Call it bed-blocking if you wish, though I dislike the term.
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