Parents demanding NHS pay to send dying sprog to US

https://www.yahoo.com/news/parents-prepare-return-court-charlie-gard-case-083822387.html

I guess the parents were told in England that the kid didn't have a chance and that the stats were stacked against them when they demanded, what looks like NHS pay for experimental treatment in the US. The NHS apparently told them the chance was too small and the kid would suffer so the breeders sued and lost. They are pulling the plug and the breeder commenters are screaming about socialized medicine being the cause of this. My dh always said they can always "make anutter one"

Just another case of not being able to face the fact that not everything works the way one imagined and thing can go seriously wrong when you roll the dice.

There's been a development on this today. Parents announced they would be dropping the fight as they accepted the evidence now that defecto loaf couldn't be treated.

Plus, it seems from the transcript of the high court session that the American professor supposedly offering them a myrakul therapy hadn't even examined the kid, or bothered to look at the MRIs, and the guy had financial interests in the therapy he was touting, so it seems he gave the parunts false hope. The therapy only had a 10% chance of having an effect on defecto sprog. I think it's partly that the US professor was a bit of a charlatan, but also that the parents would believe anything that would mean they didn't have to face the inevitable. The Pope even got involved FFS - a bloody circus, and people supporting the parents even sent hate mail and abused staff at the children's hospital that was treating the kyd. I'm glad the poor boy will get to pass on in peace now - finally, the dumb media whore parunts made a sensible decision faced with so much evidence they couldn't ignore it any more.

I almost posted a link regarding this case to the "Breederific media" thread a couple of weeks ago.

I was disgusted because there was a terrible fire in a nursing home/assisted living facility where five people DIED and what was the front-and-center story on the local news? Baybee Charlie's parunts continued "fight for their child's life," because the media doesn't give a shit about old people. But this story involving a chyyyyyyld was being covered in exhaustive detail every single farking day.

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At its heart, the case pitted the right of parents to decide what's best for their children against the authorities' responsibility to uphold the rights of people who can't speak for themselves.

That's some kid glove treatment right there. The heart of this case is that the parunts don't want to accept the realities of their kid's medical condition and they are screaming about it on social media because they can.

This case is not about socialized medicine. It's whether it's morally right to continue oxygenating a corpse when it's not medically indicated.

It's a shame the Pope is making a political issue of this. I'm reminded yet again of the Catholic priest, who was also formally educated as an ethicist/professor, who weighed in on the Jahi McMath case.

I was raised a Catholic but no longer one for many reasons. They are anti-choice and anti-woman, but I have to hand it to them....they often get the quality of issue correct, even if they don't support assisted suicide, which I do.

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"There's no moral or legal or medical justification for providing ventilatory continuation in a corpse, other than organ transplant," Father Paris writes in an e-mail. "it's not life support; the child is dead. They're not keeping her alive; they are oxygenating her organs.The family's position is understandable on an emotional level, he adds. They cannot bring themselves to admit their daughter has died,says Paris, who has consulted on the President's Commission for the Study of Ethics in Medicine and who frequently serves as an expert witness in cases involving termination of medical services.

But if you allow a system to say, If the family screams loud enough, we will do what we believe is incorrect, we'll do what we believe is not medically appropriate, we'll do what we believe is wrong, we'll continue to do what doesn't work. If you continue to go this route it's a colossal social disaster.

I cannot fathom the entitlement to say that a country's medical system has an obligation to spend millions to send a child that has no chance in hell of surviving across an ocean to another country for treatment (thus, wasting the resources of two countries). Especially when one of those countries just had a massive apartment tower fire that killed and injured God only knows how many people and aren't even close to a resolution.

But no, this stupid little baby that lost the Genetic Roulette is way more important.

People are shooting themselves in the foot with this shit of giving breeders of terminally ill children what they want despite all common sense and ethics. This, the Jahi McMath saga, the cystic fibrotic child who got to jump the front of the lung transplant line to only delay the inevitable a few years longer, and I'm sure there are other cases that I can't think of right now. Chickens always come home to roost.

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"Why children take so long to grow? They eat and drink like pig and give nothing back. Must find way to accelerate process..."
- Dr. Yi Suchong, Bioshock

"Society does not need more children; but it does need more loved children. Quite literally, we cannot afford unloved children - but we pay heavily for them every day. There should not be the slightest communal concern when a woman elects to destroy the life of her thousandth-of-an-ounce embryo. But all society should rise up in alarm when it hears that a baby that is not wanted is about to be born."
- Garrett Hardin

"I feel like there's a message involved here somehow, but then I couldn't stop laughing at all the plotholes, like the part when North Korea has food."
- Youtube commentor referring to a North Korean cartoon.

"Reality is a bitch when it slowly crawls out of your vagina and shits in your lap."
- Reddit comment

"Bitch wants a baby, so we're gonna fuck now. #bareback"
- Cambion

Oh whatever. Abortion doctors are crimestoppers."
- Miss Hannigan

Actually the parents had raised money (I believe from donations), at least a million dollars or maybe more, so they were going to be able to fund the treatment themselves. NHS wasn't going to have to pay for it. But apparently in the UK they recognize that parents don't "own" their children and that the parents' desire (to keep their child "alive" despite there being no hope for him to get better) must be balanced against the child's rights not to undergo treatment that might cause pain (unclear if he feels anything since he's apparently brain dead) when there is no hope of improvement.

I wonder what they will do with that money now? No breeders or breeder pleasers will be too likely to ask about it.

It really ticks me off how everyone "cares so much" just because this is a little kid. They get all emotional and all they can think is that a little kid has its whole life ahead of him, so of course society should move heaven and earth to give him a normal life. They refuse to hear that this kid is dying no matter what anyone does, no matter what million dollar treatment they throw at him, and the average 70-year-old probably has a longer life expectancy than he does. The child worship is strong.

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tiredchicken
Actually the parents had raised money (I believe from donations), at least a million dollars or maybe more, so they were going to be able to fund the treatment themselves. NHS wasn't going to have to pay for it. But apparently in the UK they recognize that parents don't "own" their children and that the parents' desire (to keep their child "alive" despite there being no hope for him to get better) must be balanced against the child's rights not to undergo treatment that might cause pain (unclear if he feels anything since he's apparently brain dead) when there is no hope of improvement.

I wonder what they will do with that money now? No breeders or breeder pleasers will be too likely to ask about it.

It really ticks me off how everyone "cares so much" just because this is a little kid. They get all emotional and all they can think is that a little kid has its whole life ahead of him, so of course society should move heaven and earth to give him a normal life. They refuse to hear that this kid is dying no matter what anyone does, no matter what million dollar treatment they throw at him, and the average 70-year-old probably has a longer life expectancy than he does. The child worship is strong.

Oh but teh ebil state was holding the baybee prisoner! Ebil doctors who thought they knew more about the child's condition than sacred Moo and Duh! Moo and Duh repeatedly said he wasn't brain dead despite mounting evidence to the contrary. There was no way in hell that kyd was going to have a normal life and the parents wanting to prolong it was all about them.

I have wondered about the money, interesting question. They have said they'll set up a foundation in defecto's name - presumably to take on more pointless litigation on behalf of other parents with Denialitis.

These grifters are set for life.
They'll set up a foundation with themselves as employees and they'll write a book.
See: Schindlers, Buell.

BnPs are so stupid. :eyeroll. Why would you listen to doctors, they only went to MEDICAL SCHOOL. Sarcasm aside, what makes them think they're qualified to comment on anything medical? The only parents qualified to comment on their child's medical condition are doctors, and even then they are qualified by virtue of being doctors, not by virtue of being parents.

Lock him up or put him down.
Stolen from Shiny.

also the element of uncertainty. there have been miracles before, but I agree in this case it is highly unlikely.
either way, if these parents would actually stop and think through even their beliefs: if the child dies, it will go to be with God in heaven. now really, where would they rather it be? there? or down here on earth going through hell just to keep charlie breathing. Perhaps they just have too much emotion invested in the child at the moment.

two cents ¢¢

CERTIFIED HOSEHEAD!!!

people (especially women) do not give ONE DAMN about what they inflict on children and I defy anyone to prove me wrong

Dysfunctional relationships almost always have a child. The more dysfunctional, the more children.

The selfish wants of adults outweigh the needs of the child.

Some mistakes cannot be fixed, but some mistakes can be 'fixed'.

People who say they sleep like a baby usually don't have one. Leo J. Burke

Adoption agencies have strict criteria (usually). Breeders, whose combined IQ's would barely hit triple digits, have none.

What I found truly ironic is the same bleeting sheep screaming for the government to butt out of a "family decision" are the same ones who scream the government should cut off a woman's access to birth control and abortion. Hypocrites.

_______________________________________________________________

"It is better not to look like what you are; it is better to look like a bourgeois woman because then all the doors are open for you and then you can just go and make hell." - Marjane Satrapi

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addiea raine
What I found truly ironic is the same bleeting sheep screaming for the government to butt out of a "family decision" are the same ones who scream the government should cut off a woman's access to birth control and abortion. Hypocrites.

Ain't it just. Funny how selective they are about their ethics.

Now they want to take the kyd home to die but they won't let them do that. Apparently he has to die in the hospital. So.. now howlong will they leave him plugged in?
I heard this is a genetic disorder. Perhaps moo and duh should think before making another one.

These people should show some class. Let the child die with dignity. Give it pain meds if needed, so at least it isn't suffering in the meanwhile.

It serves no one to cause an international scene over one defective loaf.

Before creating a new one, I hope the doctors advise this couple to get genetic testing to see what the percentages are of creating another genetically doomed baby. Some people shouldn't breed if all they will spawn are defective babies.

I think one of the articles I read said that the parents each have one defective copy of the affected gene, but they didn't know it until Charlie started having problems and was tested.

They've made noise about wanting to take him home before, if I'm not mistaken. Not sure how that is supposed to work since he is on life support. If they take him off, won't he just die before they can get him home? I suppose they want to take him home with a full life support system so he can die at some point at home. But he doesn't even know what "home" is, so this is another thing that is more for the parents than for Charlie.

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tiredchicken
I think one of the articles I read said that the parents each have one defective copy of the affected gene, but they didn't know it until Charlie started having problems and was tested.

They've made noise about wanting to take him home before, if I'm not mistaken. Not sure how that is supposed to work since he is on life support. If they take him off, won't he just die before they can get him home? I suppose they want to take him home with a full life support system so he can die at some point at home. But he doesn't even know what "home" is, so this is another thing that is more for the parents than for Charlie.

Not sure how it is done in the UK but in the US a Critical Care Transport Team could move him to home or hospice. There are several fully functioning light weight ventilators that could be used as well as light weight IV Pumps or syringe pumps. It is not easy and in the US it is expensive as hell but it is dam near routine.

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“There are three things all wise men fear: the sea in storm, a night with no moon, and the anger of a gentle man.”

I thought so, but nobody in this case seems to want the parents to take him home on a vent. The parents were unable to get a pediatric specialist of some kind that the hospital says would need to be on call to treat Charlie at a moment's notice. Plus an experienced ICU nurse to be in the home. It seems the court has ordered for him to stay in the hospital a bit longer and then be moved to an undisclosed hospice.

My guess is that they don't trust the parents, given they've already dragged on this court battle and they'll be looking for any reason to sue the NHS so I think they want to keep an eye on them.

Charlie Gard has died today, 28 July 2017.

Clearly, his parents were unwilling to accept the inevitable and kept clutching at straws until no straws remained. In that respect I don't have much sympathy for them.

But I also found the British government's overweening attitude about the child, even preventing the parents from taking the child out of the hospital for any possible treatment, alarming.

The rest of us here really need to think about this, especially since I suspect the US will eventually have some sort of government-operated medical care system for everyone—and such distressing decisions affecting "too-expensive" patients of all ages will become common. "You have cancer? Sorry, that costs too much, but we'll give you this pill for assisted suicide."

That type of bioethics is already in place here, and critic Wesley Smith has noted on his blog that similar court decisions to those affecting baby Gard have already happened in the US. Texas has a law allowing doctors and hospitals to end life support over the family's wishes, and the only option is to find another hospital willing to continue the treatment. The family cannot file suit in Texas to prevent ending life support. We're all targets for this manner of being thrown under the bus—not just babies such as Charlie Gard.

It was inevitable. Let's hope they don't start a Go Fund Me and get genetic testing before considering more kids. I highly doubt either will happen though.

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kman
Charlie Gard has died today, 28 July 2017.

Clearly, his parents were unwilling to accept the inevitable and kept clutching at straws until no straws remained. In that respect I don't have much sympathy for them.

But I also found the British government's overweening attitude about the child, even preventing the parents from taking the child out of the hospital for any possible treatment, alarming.

The rest of us here really need to think about this, especially since I suspect the US will eventually have some sort of government-operated medical care system for everyone—and such distressing decisions affecting "too-expensive" patients of all ages will become common. "You have cancer? Sorry, that costs too much, but we'll give you this pill for assisted suicide."

That type of bioethics is already in place here, and critic Wesley Smith has noted on his blog that similar court decisions to those affecting baby Gard have already happened in the US. Texas has a law allowing doctors and hospitals to end life support over the family's wishes, and the only option is to find another hospital willing to continue the treatment. The family cannot file suit in Texas to prevent ending life support. We're all targets for this manner of being thrown under the bus—not just babies such as Charlie Gard.

AKA Universal Healthcare: what really happens. Not what the clueless uninformed folks who demand Universal Healthcare and their ignorant Disney version of some weird utopia that exists only in their heads. It won't solve any problems, only makes things worse and costs everyone more money. And is subject to serious abuse...see who collects social security and how many of those people never worked a day in their lives. Or the appropriation of the funds for the Postal Office and what that caused. I wouldn't trust the government with a penny!

I did the math and a person making minimum wage and paying in 12.4% for 40 years to Social Security at a modest 8% return would have more than enough to retire but somehow it never quite works out, does it? Because it is appropriated.

But, somehow Congress can retire after 2 terms with permanent healthcare.... Hmmmm...where are funds being appropriated from to do that?

Also, public schools now keep disabled kids in school until 21, who pays for that? Taxpayers!

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kman

But I also found the British government's overweening attitude about the child, even preventing the parents from taking the child out of the hospital for any possible treatment, alarming.

The rest of us here really need to think about this, especially since I suspect the US will eventually have some sort of government-operated medical care system for everyone—and such distressing decisions affecting "too-expensive" patients of all ages will become common. "You have cancer? Sorry, that costs too much, but we'll give you this pill for assisted suicide." .

No offense, but for those countries with Universal Health care, that kind of situation is anti-socialized health care propaganda. I live in a country, as well as work within Universal health care, and I can assure you that it's mandated by law to ensure equal access to health care. The government run health care sector would face a shitstorm of epic proportions if they refused care on the basis of 'too-expensive' or 'sorry, that costs too much'. I and my health system could face some serious penalties if I didn't offer everyone mandated free and equitable health care.

Now, that being said we're talking about unproven, non-standardized, experimental treatment on an extremely rare case with very small odds of success. It was shown that the person touting their experimental therapy had a vested interest in their product, and even stated that there was only a 10% chance of success. What would their definition of success be? A halting of the disease progress? The kid already suffered irreparable brain damage, and was on a ventilator. What quality of life would the kid have? Basically a vegetable on a ventilator for the rest of their radically shortened life!
Let's also remember that most people have an absolutely magical expectation of the abilities of medicine and health care.

There is a limit to what can be done, and there's a point where it becomes a point where it's only maintaining comfort, than actually treating. In this case, it appears that the parents' multiple court cases, proves that they simply can't accept the reality that their kid will die, and they're desperately deluding themselves at the expense of extending their defecto-loaf's suffering. They're simply doing a Jahi McCorpse, and the government had to step in and make the ethical decision, as the parents are simply incapable of doing.

It's also wise to remember that this is being reported from news outlets, which are only in the business for selling stories, and nothing sells more than some visceral, and emotive, heart-tugging tragedy such as a poor babby fighting for life against the ebil socialised health system in UK. The media reporting in the UK is notorious for twisting truth and sensationalizing stories so they sell. Let's also not forget that the main owners of those news outlets in the UK, have political/conservative agendas such as pushing for a US style user-pays health care system in the UK.

It's just a tragic story of parents' refusal to accept reality, manipulation and sensationalism by unscrupulous people.

This ^^^^^^

The NHS is not perfect by any means, but I'm proud to live in a country where you don't die because you can't afford treatment and you're not at the mercy of insurance companies who sure as hell don't care about anything but making sure they pay for as little as possible.

Newsflash: ANY healthcare system, anywhere, will ultimately have to make some decisions regarding the cost/benefit of different treatments. I work in mental health and I sure don't agree with every decision the NHS makes about the treatments they will and won't fund, but at least we don't have people dying on the steps of hospitals because they can't afford care. And parents don't "own" their kids here in the UK because as we know, some parents are incapable of making proper decisions about their child's care - or of caring for their kids at all. I work with some seriously fucked up adults who could have benefited from a little more protection from their shitty parents, I can tell you that much.

NoKidsAndHappy said: "No offense, but for those countries with Universal Health care, that kind of situation is anti-socialized health care propaganda. I live in a country, as well as work within Universal health care, and I can assure you that it's mandated by law to ensure equal access to health care. The government run health care sector would face a shitstorm of epic proportions if they refused care on the basis of 'too-expensive' or 'sorry, that costs too much'. I and my health system could face some serious penalties if I didn't offer everyone mandated free and equitable health care."

I understand that position. The issue in the US is that the bioethics has evolved to be similar to the utilitarian, futile-care theory in vogue in countries such as Belgium and the Netherlands, where the notion that it is preferable to euthanize or simply to deny treatment to some patients under some conditions has taken root. Such patients are encouraged to kill themselves, with doctors there even assuring them that their organs could be transplanted so the patients' death would be beneficial to society.

In Oregon in the US some similar cases with people on Medicaid (medical coverage for the poorest) came to light. Oregon's state-run health plan would pay for suicide drugs, but not further treatment.

Just a few months ago a doctor in Nevada was trying to place cancer patients in state-of-the-art facilities in California that might have saved their lives, but he claimed that the insurers wouldn't pay for the placement and asked him if the patients had considered assisted suicide instead. He was not forthcoming with other details, including the names of the private medical insurance companies (allegedly for patient privacy), and some are calling foul on his claims.

In other words, the US has the type of bioethics found on the Continent without the single-payer system covering everybody—which is the worst of both worlds. Overall, distrust of doctors and hospitals is widespread here. The US does not ration most health care based on cost, but on ability to pay, as your comments essentially note. That type of rationing is repugnant in its own way.

kman...how much do you actually know about European healthcare and how much comes from the media? Because literally NO-ONE is encouraged to kill themselves.

I don't know a lot about the healthcare systems and their internal mechanisms, and I know my experience can't be extrapolated to apply to EVERY doctor and patient, but from my experience doctors in Europe care less, and doctors in America care only because they can make money. In Europe, my uncle, who had cirosis of the liver and eventually liver cancer, was told he's dying and there's nothing they can do for him. When he flew out here, he was told options like a partial transplant and a full transplant, and then asked for insurance information.

Lock him up or put him down.
Stolen from Shiny.