John, the alternatives are not therapy or death, they are death or travel, therapy and then death with the current objective medical opinion being that the latter introduces the probability of increased suffering for no benefit. The parents will clutch at straws and be blind to the detrimental effect on the child which is why, in very very rare cases the law needs to speak for the child and an objective judgement must be made. Otherwise we run the risk of parents, understandably smitten with grief, making bad decisions.
The question in the first sentence is completely different from the question in the second. The value of the therapy is not up for debate as there is unanimous medical opinion on it. The second sentence asks whether the decision should be based on objective medical merits or some concept of absolute parental rights. The latter seems hard to justify since it’s so obvious that the parents will have a highly emotion-driven opinion that may not be rational and may result in medically worse outcomes and maybe even an abrogation of the child’s intrinsic right to die in peace and dignity. This is a syndrome that the medical community has called “therapeutic misconception” – the delusion that if a therapy exists, then it must work, but it’s a delusion that can lead to undesirable outcomes.
I found a couple of articles of interest in Googling for the broadcast news item that Broomstick just posted about. This is the one about the hospital requesting a new hearing to assess the new evidence. This should put to rest any conspiratorial idea that the hospital has some vested interest in unnecessarily keeping the child. It’s not known, however, where the two new medical centers are. The other two appear to be in New York.
Also of interest is this CNN opinion piece which essentially asks the question “could a case like Charlie Gard happen in the US?”. Part of the answer seems to be that (as previously stated) the UK has a somewhat different balance on parental roles, emphasizing more the “responsibility” aspect while the US culturally tends to emphasize more the “rights” aspect. We can debate which is better til the cows come home, but I think the salient point is that these are nuanced shifts in perspective, not sea-change differences in law, so to my reading the op-ed more or less concludes that a case like this is probably less likely to have this kind of outcome in the US, but as I said earlier, US rulings have been all over the map including some remarkably similar to this case; specifically, what I said (in #151) was:
Anyone trying to argue that US law on this matter is different than in Europe for whatever reason would at best be able to show that judicial outcomes have been mixed, with different state laws also coming into play, but certainly not as absolutist as adaher was claiming, and that similar events as the Charlie case have occurred.
The article seems to come to basically the same conclusion, stating in one part that:
With different laws in different states and communities rising to the challenges they face, Lantos believes “the US is too diverse to generalize about.”
Meanwhile I just want to start talking about QALYs and all the good that million bucks they raised to waste on a dying child could do spent on mosquito nets in Africa.
It’s not unanimous since there are legit doctors in the US willing to treat the child. And I never, ever once said that parents rights are “absolute”. In fact, I specifically laid out situations where the parents’ decisions should be over-ridden. I think I’ve been very careful to lay out where I would draw the line and how this particular case does not cross that line. Perhaps we will have to simply agree to disagree on that. We draw the line in different places (not really all that different in reality) for different reasons.
Thanks, but just to be clear I’m not subscribing to any conspiracy theories about sinister motives by the hospital staff. As I said earlier, I accept that all parties are acting in good faith.
Sounds like a US doctor has flown over to London to meet with Charlie’s medical team:
Charlie Gard: US Doctor Offers to Meet GOSH Medical Team
I totally agree that children should be killed when the state determines that they aren’t worth keeping alive.
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But there should at least be some kind of Panel for making the decision, don’t you think? We could call it a Life Panel, or something like that.
Better than using terminally ill children as experimental guinea pigs, and persuading parents to go along with it by lying about what they’re doing.
Not that anyone is actually going to kill him, they are going to stop artificially keeping him alive and suffering.
wat
just imagine me giving you a very slow, very sarcastic hand-clap.
There is no way you have read this thread and come to the conclusion that the above response is appropriate. A dying child is at the centre of heart-breaking decisions with no good outcome possible and the best of intentions being displayed by all sides (which you could easily confirm for yourself through the copious links available) and yet you decide to throw that idiotic comment into the mix.
It’s not the labour law point that makes that case relevant: it’s that the state could overrule the parents’ First Amendment rights re the exercise of religion, and could tell the state not to use the child for the purposes of religious proselytization. That’s the important part of that case, and why it is quoted as a foundational case in the issue of parents’ rights versus the state’s rights as parens patria (literally, “father of the country”).
The case established that the parents’ rights over their children are not absolute, even in something as strongly protected as the free exercise of religion. That’s why this case is cited in other situations where the state has intervened to overrule the parents’ decision with respect to their children, using the “best interests of the child” test.
If this case had gone the other way, the “best interest of the child” test might be unconsistutional, as infringing on parental rights over their children.
Yes, just to point out to other; the State has the right to act against Parental wishes. No one in law seriously disputes that. Generally speaking, its the last resort of last resorts. And contrary to what some posters seem to be insinuating, the problem is rarely if every the State jumping in over the objections of good parents. Its typically, the opposite the State not coming in long after they should have.
That said, sometimes the State is wrong. In this case, as I stated earlier, they should have given the parents the chance to try the new treatment. I think realization has dawned, which is why the compromise of letting the American Doctor travel and examine young Master Gard has been effected.
I disagree - I think the issue was always (mostly) transporting a very medically fragile child and not whether or not an experimental treatment should be tried.
So this treatment happening at all is still dependent on FDA approval. Have they given any indication as to when and how they’ll decide?
I don’t know. For all we know, the US doc going to the UK is doing so in part to determine if there is even any point to trying to treat him. Yes, medical records were transferred from the UK to the US but I suspect any doc involved would like to see the patient personally.
It would be nice if Trump kept some attention on the issue as a way of encouraging cross-national cooperation but the man has the attention span of a gnat and seems to have moved on to other things. Maybe those involved can get his attention again.
I bet there’s not many people who would agree that this deeply dividing ethical issue needs more Trump.
It’s not that he’s Trump, it’s that he’s PotUS and thus able to bring some pressure to the matter that private citizens can’t. I don’t like the man, but is there a problem with wishing he’d use some of his influence for a good cause?
But like what is he going to do? The only thing I can think of is calling up the FDA and tell them to hurry up approval. None of the participants are very susceptible to Presidential pressure. And reallly, this isn’t really America’s frigging business.
I have never claimed that parental rights were absolute (I’ve repeatedly said they weren’t), and I can’t imagine any reasonable argument that would. Are you claiming that they were, prior to the decision in this case (emphasis added)?
Let’s say that in 2014, Obama had come out in favor of mandatory vaccinations. What effect do you think this would have had on republican antivaxxers? I think there would suddenly be way more of them, and they would have far more mainstream support, because now it’s suddenly a partisan issue, a matter of tribe. This is not okay.