Baby Charlie Gard's life

[misskarne]

Not sure who you are being "brutally honest" with. But here are some facts.
The American Thinker - The Face of the Single Payer System.
No one knows if he is in pain.

The doctors monitoring his brain activity will know, and it is my understanding that that is what they have observed. But in any case, doesn't that article counteract your stance? Charlie has no feeling, no hearing, no sight, no speech, and if his nervous system is in failure to the point that he cannot feel pain or pleasure - is he really alive, at this point?

"Surrogate decision-makers" is a term I have never before heard, and certainly something that is not in play in the US.

Get it through your thick skull: THIS IS NOT IN THE US. It has nothing to do with the US except that the doctor offering the experiment is from there. Charlie is not American. His parents are not American. They are not in the American system.

This being one of the shortcomings of a Single Payer Health Care system.

Well, it's a damn good thing Charlie is in a REAL healthcare system, because his parents may not have been able to afford any of his treatments thus far in your fcuked up health system.

You are a typical pro-lifer (pro-birther). You do not give a fcuk about the baby's quality of life as long as it's technically alive.

 

[AxelAnnie]

The doctors monitoring his brain activity will know, and it is my understanding that that is what they have observed. But in any case, doesn't that article counteract your stance? Charlie has no feeling, no hearing, no sight, no speech, and if his nervous system is in failure to the point that he cannot feel pain or pleasure - is he really alive, at this point?



Get it through your thick skull: THIS IS NOT IN THE US. It has nothing to do with the US except that the doctor offering the experiment is from there. Charlie is not American. His parents are not American. They are not in the American system.



Well, it's a damn good thing Charlie is in a REAL healthcare system, because his parents may not have been able to afford any of his treatments thus far in your fcuked up health system.

You are a typical pro-lifer (pro-birther). You do not give a fcuk about the baby's quality of life as long as it's technically alive.

Humorous. You know nothing about. I would like everyone is pro-life. It is such a misnomer. I have found no assertion from any doctor or other authority that anyone can tell if the baby is in pain. Pain is not something that shows in scans.
I am very clear that the British Health Care system is not the US Health Care System. The fact that the parents are not in charge of what happens to their child is a downfall in a single payer plan. They are being barred from a second course of action.

 

[misskarne]

The fact that the parents are not in charge of what happens to their child is a downfall in a single payer plan. They are being barred from a second course of action.

Oh FFS. The parents were in charge of what happened to their child until those decisions became harmful or futile to their child. The doctors then intervened because someone needed to. The courts are barring them from causing further harm to their child!

 

[AxelAnnie]

So do you think a parent should be able to make a healthcare decision that would do harm to a child or other person unable to advocate on their own behalf?

Should there not be some checks and balances against that, even in a system without single payer care?

I agree that there should be checks and balances. There are cases when parents want to withhold treatment due to religious reasons. They can be overridden.

What I have a problem with in this case, is that the Gards are being forbidden from seeking treatment that has a chance (albeit it small) that their son could live a little longer. They love him, and want to give him any possible chance. They have said they don't want to look back and discover that they could have done something. Since there is no proof that he can feel anything or that he cannot, I think they should be able to take this chance.

Not a surprise that we (people here) can't agree....the entire profession can't agree.

 

[AxelAnnie]

Oh FFS. The parents were in charge of what happened to their child until those decisions became harmful or futile to their child. The doctors then intervened because someone needed to. The courts are barring them from causing further harm to their child!

We have a different interpretation of the facts. Let's just leave it there.

 

[Japanfan]

What I have a problem with in this case, is that the Gards are being forbidden from seeking treatment that has a chance (albeit it small) that their son could live a little longer.

As has been pointed out, the infant is not living, but merely existing.

 

[AxelAnnie]

As has been pointed out, the infant is not living, but merely existing.

I was addressing only the issue of pain.

 

[oleada]

I was addressing only the issue of pain.

If you bothered to read the judge's decision, posted earlier in this thread, you would see that his doctors believe Charlie is in pain.

 

[Prancer]

I agree that there should be checks and balances. There are cases when parents want to withhold treatment due to religious reasons. They can be overridden.

And insurance companies can refuse to authorize treatment. And people can be unable to pay out-of-pocket expenses for care. And courts can overrule parents' medical decisions--and not just for religious reasons.

The idea that we don't have rationing of health care in the US is.....well, it's an idea, I suppose.

 

[Willin]

Not to mention that just like the doctors are GOSH are trying to do, hospitals can refuse care if they believe care is futile. Of course, it will go to the Ethics Committee for the final decision, but if they also determine it's futile, the plug is pulled.

It happens a lot more than you'd think. Usually it's only in cases with brain death - so patients who are dead, but appear alive because machines are doing everything for them. When it's not brain death, it's a case like this, where the patient is not technically brain dead, but doesn't have enough brain function to sustain life without machines. Other times, there are cases where the person won't die for lack of treatment, but where treatment would not help the patient. (I.e. Doctors may refuse to put a feeding tube into a 99y.o. patient with multiple comorbidities, extremely advanced dementia, history of multiple strokes, refusal to eat, and pain from even a light touch when on opioids) It's tough for children, but if you see a patient only sustained on machines or who otherwise has almost no quality of life, you'll understand why doctors don't want to keep them like that. I think few people if given the choice would want to be sustained like that if their condition wouldn't improve.

 

[VGThuy]

Is this really about what's best for Charlie Gard, or is this a nice avenue to advocate a pro-life stance and critique single-payer healthcare? I mean we all use "perfect" cases to advance agendas (at least the activists and lawyers do), but I wish people were a bit more honest. I'm not saying there's no genuine concern for Gard or his parents, but some of the posts seem to be taking advantage of their grief and exploiting it for a bigger battle (real or imagined..."death panels"). That said, "death panels" and whatever people imagine can still happen in any healthcare system, so I don't see how it's a single-payer issue. Actually, in my experience, with the way the old fee-for-service system was replaced by the exchange in New York and with private insurance companies taking over, many of my clients have told me they've been denied for services more often now than they did under the old fee-for-service system, and the insurance companies bank on the clients not fully knowing their appellate rights. A colleague who's been working in healthcare law for years also found that baseless denials, where they deny people knowing that they actually qualify because they bank on people not fighting back, increased after private insurance took over.

ETA: Someone or some people mentioned or insinuated with their posts about how this was also a pro-life issue. I'm a little confused as to how this issue became a pro-life v. pro-choice thing. I understand the parent's rights angle even if I don't agree with how some have read the U.S. law to mean that parents have free reign to make decisions for their minor children. But I'm not sure how this is a pro-life issue. Is it really against religion or being pro-life to decide to pull the plug (like if Gard's parents decided to do so)? I'm a bit confused about that. Also, if life can only merely exist through machinery and artificial means, isn't that getting in the way of God's plan? I know I may get in trouble with equating pro-life stance with the Christian God, but they seem to go hand-in-hand. And yes, I know we all use modern medicine and medical techniques to prolong life and sort of understand the sanctity of life, but usually "sanctity of life" is used to prevent an affirmative act to terminate rather than prolonging a life just for keeping that person alive who would be dead without extreme intervention and modern technology.

 

[AxelAnnie]

And insurance companies can refuse to authorize treatment. And people can be unable to pay out-of-pocket expenses for care. And courts can overrule parents medical decisions--and not just for religious reasons.

The idea that we don't have rationing of health care in the US is.....well, it's an idea, I suppose.

Absolutely true. The Gard's have raised most of the money. I don't think they are asking anyone to pay. They just want to be able to try.
This from CNN today
[QUOTE
On Monday and Tuesday, Dr. Michio Hirano, a neurologist from New York's Columbia University Medical Center, met with doctors caring for Charlie and other experts and evaluated the boy in London. These meetings were arranged after Hirano testified in a previous hearing that Charlie's MRI scan did not necessarily indicate structural damage to the brain. He said there was an "11% to 56% chance of clinically meaningful improvement" in muscular function with the proposed treatment.
Hirano added that keeping Charlie on a ventilator would not cause him harm because he did not seem to be in any significant pain.
QUOTE]
I don't see any evidence that the child is being harmed. Just opinion. No one knows. In this case, I think the parents should be able to say.

 

[VGThuy]

I have a more philosophical question. If we're just going to pit medical expert v. medical experts, then why not let a neutral body of fact finders (in the U.S., this is used in our court system and called "juries" or a panel of judges if it's a bench hearing) weigh the evidence? Why do the parents have the final say? Finding evidence to dispute the UK and other European doctors is a great strategy, but it doesn't make the case that parents should have the final say in cases like Charlie Gard's. It doesn't say parents are any more knowledgeable or have expertise to make that decision.

 

[AxelAnnie]

Best summary have read. Please read it all before you comment.

CHARLES KRAUTHAMER in his article in the Washington Post titled "What to do for Charlie Gard"

What to do? There is only one real question. What’s best for Charlie? But because he can’t speak for himself, we resort to a second question: Who is to speak for him?

The most heart-rending situation occurs when these two questions yield opposing answers. Charlie’s is such a case.

And if they clash? What then? If it were me, I would detach the tubes and cradle the child until death. But it’s not me. It’s not the NHS. And it’s not the European Court of Human Rights.

It’s a father and a mother and their desperate love for a child. They must prevail. Let them go.

 

[Willin]

@AxelAnnie
I have no idea where Dr. Hirano is getting these numbers from. You can't predict anything near that even if you have mouse models, which he does not have. You can only really predict prognosis with very stringent human clinical trials, good research, and lots of patients, and even then each case is different, so the prediction could still be off.

I would also trust a whole team of doctors doing analysis over a period of months as opposed to one neurologist who saw the patient exactly once over a couple hours or maybe a couple of days. Not to mention I don't trust the doctor's claims - the more closely he's gotten involved in the media frenzy, the crazier the claims he's making. MRI scans also aren't perfect, so if he's only going off of that, he's missing out on a lot of detail. You need a ton of different tests to determine brain function/damage (EEG, PET, CT, apnea tests, caloric tests, etc.), and even if no major structural damage has been done, there could still be other damage to the brain that you can't see with an MRI.

@VIETgrlTerifa
When it's doctors vs. family, ethics panels get involved. It varies by hospital or institution as to who's involved, but usually it has at least one neutral MD and/or RN, a community member, a medical ethicist, and several others. All are neutral parties whose sole job is to debate and determine what the ethical thing to do is.

 

[VGThuy]

@VIETgrlTerifa
When it's doctors vs. family, ethics panels get involved. It varies by hospital or institution as to who's involved, but usually it has at least one neutral MD and/or RN, a community member, a medical ethicist, and several others. All are neutral parties whose sole job is to debate and determine what the ethical thing to do is.

Is that what some call "death panels"?

That WaPo piece is the most blatant example of an appeal to emotion that I have seen in a while.

 

[misskarne]

Best summary have read. Please read it all before you comment.

CHARLES KRAUTHAMER in his article in the Washington Post titled "What to do for Charlie Gard"

Again, for the ten millionth time, this is not the United States. You seem to be trying to turn this into some kind of pissing contest ("look how superior the US is! Our fcuked-up health system would never take this choice from the clearly deluded parents!").

 

[Willin]

@VIETgrlTerifa I honestly have no idea what they were referring to as death panels, but I would assume so. I have no idea why they'd be called death panels, though. From my limited experience, they usually take the side of the family unless there's brain death or something very close to it (So, cases where the patient is dead and only being maintained physiologically).

 

[VGThuy]

@VIETgrlTerifa I honestly have no idea what they were referring to as death panels, but I would assume so. I have no idea why they'd be called death panels, though. From my limited experience, they usually take the side of the family unless there's brain death or something very close to it (So, cases where the patient is dead and only being maintained physiologically).

I don't think they even know what they're talking about. I think it's people's imaginations running wild. I will say it was a brilliant (still is) scare tactic to fight universal healthcare.

 

[VGThuy]

The Right is Turning the Charlie Gard Tragedy Into a Case Against Single-Payer Health Care. It's the Opposite.

Instead, many conservative outlets are using the Gard case as an argument against a more protective safety net. The Washington Times: “Charlie Gard makes Trump case for speedy Obamacare repeal.” The Federalist: “Yanking Life Support From UK Baby Demonstrates Dangers Of Socialized Medicine.” InfoWars video I won’t link to: “Charlie Gard Exposes the Horrors of Single Payer.” These claims rest on fear-mongering over an all-powerful National Health Service, one that decides—in tandem with a totalitarian court system—whose life in the U.K. is worthwhile and whose is too expensive. Raising the specter of "death panels,” these outlets have turned one hard case into a sweeping referendum on the inherent justice and effectiveness of socialized medicine. It’s as if the death of one child matters, but the death of thousands is the cost of “reform.” Or as if intervening in one complex and tragic case is heroic, but building a system that would prevent the suffering of many more is intolerable overreach.

We can surely argue about how such a system should be administered, to what lengths it should go to to prolong the lives of the terminally ill, and who should make decisions on when a life’s end has been reached. But those who are moved by the plight of Charlie Gard would be right to think carefully about Tuttle’s question: What duty of care do we owe them simply on account of their being human beings, who are by nature possessed of an inalienable dignity?

Anyway, the way I see it, I sort of hope the Court allows the treatment just because I don't want the single-payer or even universal health coverage to turn into an abortion issue where people's emotions shape the narrative and it turns into a century-long demonization.

 

[ballettmaus]

The WaPo opinion AxelAnnie linked to stated the opinion that a parents' motive is the most pure. Also from the Op-Ed:

The Telegraph of London reports that Charlie’s doctors remain unconvinced by the American researcher. Indeed, the weight of the evidence appears to support the doctors and the courts. Charlie’s genetic variant is different and far more devastating than the ones in which nucleoside bypass therapy has shown some improvement. There aren’t even animal models for treating Charlie’s condition. It’s extremely unlikely that treatment can even reach Charlie’s brain cells, let alone reverse the existing damage.

Reading that, I wonder if the parents' motive for keeping Charlie alive really is pure or if it's merely selfish.

 

[snoopy]

If this is a critique on single payer, okay let Charlie go. But then Charlie's family should have to pay the government back for all the money the taxpayers already spent for Charlie to even get to this point.

If the government shouldn't be involved they shouldn't be involved.

 

[AxelAnnie]

The article in it's entirety, IMO, does the best job of drilling down to the core issue. It is not about which country or which health plan. It is about the moral issues at the core. Who gets to say what and when.

 

[Japanfan]

ETA: Someone or some people mentioned or insinuated with their posts about how this was also a pro-life issue. I'm a little confused as to how this issue became a pro-life v. pro-choice thing.

It isn't a pro-life versus pro-choice issue. I was confused when 'pro-life' was used above as well. Within the context of this and similar cases, it really comes down to pro-life versus pro-death, and pro-death really doesn't work as a framework of reference when the objective is to spare pain and suffering to an individual who does not have a chance to really live.

Is it really against religion or being pro-life to decide to pull the plug (like if Gard's parents decided to do so)? I'm a bit confused about that.

I don't think so.

Also, if life can only merely exist through machinery and artificial means, isn't that getting in the way of God's plan?

You would think that some religious people might see it that way.

 

[Prancer]

Absolutely true. The Gard's have raised most of the money. I don't think they are asking anyone to pay. They just want to be able to try.

Okay . Not sure what that has to do with my point or yours, but how nice for the Gards that so many people have rallied to their cause.

 

[once_upon]

The parents of children are truly surrogate consenters. That is the child does not have the cognitive judgement or is unable to make informed decisions and the parents makes decisions for the child.
These decisions may or may not be in the best interest of the child. The courts in the U.S. can and will name a guardian for the child. It may be because the parents wish to discontinue medical treatment that is successfully treating a condition as in this case and if you read the article it does indeed refer to surrogate consent by parents. Published in the Offical Journal of American Society of Clinical Oncology

http://ascopubs.org/doi/full/10.1200/jco.2006.06.4709

Right wing conservatives are using this child as a shining example of what a universal healthcare system will take from our society. If this "freedom" for competitive insurance providers is so effing great, tell me how it is that someone like me who pays 4 or more times what any employee with employer subsidized insurance is unable to purchase anything? I'm 85% if not 100% sure I pay more than you and am willing to continue to pay high rates BUT I CANNOT, there is not an option. Free market and choice does not exist.

As for "raising all the funds", if estimates of $5000 a day for ventilated patients in a hospital is average (as some sources cite and I'm sure several actual practicing healthcare providers could attest too) that $1,000,000 will be enough for ~0.54 year or 200 days. That doesn't include things like infections or complications for unknown treatment side effects or transport or additional doctors fees. Their go fund me donors are going to dry up as the next heart strings cause arises.

Gosh after 200 days he is, now as what a temporary citizen, eligible for US care he is now on that tax payer sucking Medicaid dollars. Medicaid contracts which pay ~0.75 on the dollar, that $5000/day is now costing you the taxpayer $3750 outright and subtlety an increase in your healthcare premiums because the other $1250/day needs to be recouped somehow.

There is no real documentation that this is even a miniscule piece of evidence that this will do anything, as this baby's particular condition is not like any of the others described and that hasn't been positive either.

For me, it's the inhumane treatment of an infant that is the biggest issue. A person, no matter what age, deserves dignity and this extended life without brain activity and controversial treatment is inhumane.

It's convenient to use Charlie as the shining example of "death panel" but ignore your own death panels. Sure call me a bleeding liberal, call me whatever you want. Again I am 90% sure I've seen more children with diseases who died than you have. Sat with parents during their child's illness. Taken care of more infants who had just brain stem autonomic nerve reactions with no brain activity. Cried more tears at children's funerals.

 

[Willin]

@once_upon $5000/day would be really lucky! In my state the avg. charge for day for any patient (including Med/Surg units, so certainly bringing the average down from the average ICU cost) is a whopping $10,422, so even if he has close to $2 million, they would make it 192 days. Certainly, they'll also be spending a lot more than that average, so I'd assume they'd make it somewhere around 100 days fully funded. Not to mention they'd probably need a good $500k for the transport across the Atlantic, so with $1.5 million, they'd make it about 144 days. And even then, you'd have to account for cost of living for the family (though I suspect this will be provided by supporters of the family).

 

[once_upon]

@Willin I suspected the costs would be enormously higher, more like you pointed out.
People seem to think 1 or 2 million dollars will last forever in healthcare costs. Especially now since there are no lifetime caps - soon to return to existence - and poo-poo costs.

I remember back in 1981, an infant who underwent some very experimental chemotherapy for liver cancer, a 3/4 liver removal and various infections. He was 3 weeks old at the time. By 5.5 months he reached his lifetime cap. That was 1981 dollars, or equivalent to $2,679,000 in 2017 dollars and the healthcare costs have risen by more than the inflation rates.

A 3 page story in a people magazine, doesn't begin to address the complexity of cases, but it makes people cry out.

 

[once_upon]

Is that what some call "death panels"?

That WaPo piece is the most blatant example of an appeal to emotion that I have seen in a while.

The writer's medical speciality is psychiatry. He is not a neonatologist, or geneticist, or neurologist or neurosurgeon, or pediatric neurologist, pediatric gastroenterologist (with extensive knowledge of gut absorption, which as I understand it is the cornerstone for this extremely controversial untested,unresearched treatment), pediatrician, microbiologist, pathologist. I don't want anyone think I discredit psychiatry, but this case is not within his scope of practice.

He appeals to emotions, not medical evidence in this case. Yeah, I'm not sure he has a comprehensive viewpoint of this case.

 

[AxelAnnie]

He is a psychiatrist....and a a man who is articulate, has a strong moral compass and a rather unique ability to get to the core of an issue as well as to separate his opinion and personal beliefs from his analysis of an issue.