Personally, I’m with you on that. I’m just not willing to put my personal reference frame on this issue into law so that everyone must adhere to it. It’s something I think reasonable people can disagree on, and unless the parents are found to be truly incompetent as parents generally, then I think their choice should prevail, as long as some legit medical facility is willing to take the case on. I don’t think a medical facility should be forced to do so against their own established practices.
The condition of “if no other facility can be found” is specific to the language of the Texas law, not a general legal principle.
I don’t know where the US medical facility is but just London to New York is about 9 hours flight time (it’s generally into strong westerly headwinds), about 1000 miles farther than NY to SFO. Plus there are other legs to the total trip. Neither of us know the medical details of the child’s condition but it’s reasonable to assume it’s extremely fragile and that the total trip would be very long and stressful; trips like that take their toll even on healthy adults. Underlying all this is the unanimous medical opinion that it would all be for nothing, with a lot of potential for real harm.
ISTM that you’re just trying too hard to portray a compassionate ruling supporting the child’s best interests as some kind of evil intrusion of state power. The courts and children’s services routinely interpose themselves between parents and their children, and in some situations they do so in matters of life and death. We’ve given you several examples of this in the US.
Its my understanding that the proposed treatments, which have worked in other ‘variants,’ have yet to be tried with the type Charlie has. Therefore any opinion on whether it works or not is at best premature IMO. So the question remains - why are they do opposed?
Every law has some something specific about it. I’m just noting the difference between the two rulings, and why the US one is not a case of the court ordering the plug to be pulled.
Now, I can see that it might also be true that in the Gard case, the court is not actually ordering the plug to be pulled, either. They are binding the parents to the decision by the medical community. But there is still a distinction in that the parents are not being allowed to seek treatment elsewhere.
In what way would the patient experience more stress than being in the hospital, and moved to a different ward? What makes you think he would even be aware of what was happening?
I never used the word evil, so I guess I’ll say you’re wrong about that. I might say “unnecessary”, but I do not question the intent of the folks on the other side of the issue.
Already agreed to that.
But none that go so far as this one. I’m honestly not sure why you want to make the argument in the first place. That is, that the US does the exact same thing. So what if they do (even though, in reality, they don’t)?
Maybe, but in a condition so rare (only 16 cases globally) there’s no way to draw those sort of conclusions, and that’s what is happening here, in one so young, whose condition is so rare, and with a treatment never tried before.
For a patient like Charlie Gard a commercial flight is out of the question, he’d have to be transported by a dedicated medical transport airplane, which do exist - I was part of an effort to move an ill, elderly patient from Chicago to Rochester, New York using such a service in the early '00’s. One advantage is that they can fly a more direct route and do not have to rely on commercial hubs. Potentially that means a shorter time in the air and less time from hospital to airplane and vice versa. They are also, essentially, flying hospital rooms. Expensive? Hell, yes, but apparently the parents have raised money for this cause, they could probably swing it in this situation.
They are being allowed to seek treatment, but they are not being permitted to transport the child when transporting him might endanger his already precarious state of existence. I read it as they can bring the treatment to Charlie, but moving Charlie is deemed too risky. If you can bring the treatment to Charlie and treating him is unlikely to cause harm sure, go ahead, but you can’t put him at risk in order to get him to a treatment that is unlikely to help him at all, much less cure him.
Transporting him would necessarily involve some bumping over roads, possible air turbulence while en route, changes in air pressure, temperature, and that’s just off the top of my head. For someone as sick as Charlie even such minor things could precipitate a crisis.
The stress of traveling would be worse than the stress of being killed? We are allowing the doctors to kill him. If they can kill him humanely, I think they can transport him at least as humanely.
As already said, that’s misstating the issue. They are not being allowed to subject the child to unnecessary and unjustified stress and risks that have been deemed to be of no medical benefit. This is the parallel to the US cases that have been cited that you deem to be not the same. They are the same in that the courts have intervened to impose objective and medically sound judgments over the wishful thinking of the parent(s).
Not to quibble, but the Google popup on the search “london to new york flight time” says “31+ flights per day, 7h 55m duration” and this one says 8.5 hours. It will of course be highly dependent on winds and aircraft type. Plus there’s all the ground transportation to consider in this case.
I presume he wouldn’t be “aware” of anything in the conventional sense, but we’re talking about physical and not psychological stress. As mentioned, turbulence, bumps, rapid changes in environmental conditions and especially drastic changes in air pressure at altitude could all be medically stressful.
Because adaher persistently claims that this is all due to the NHS, and by implication, to “socialized medicine”. And as noted above, in reality, the US does embrace the same principle of the judicial system protecting the best interests of the child. Naturally the history of specific cases will be different in different countries, and there will also be differences in culture and social values, but none of it has the slightest thing to do with who pays for health care. And if adaher is, as I suspect, using this as yet another tired old argument against UHC, well, I’ve already amply made my points about that.
Once again, I have to say, completely mischaracterizing the situation. The doctors are not going to kill him. Nature, and the progress of his irremediable terminal condition, are going to kill him. The doctors, supported by the courts, want to make it as merciful as possible.
Yes, if it’s a choice between dying relatively comfortably with palliative care - which is what the doctors have said is appropriate - or prolonging and increasing his suffering with unnecessary travel and treatment.
He is going to die, and soon. That is not in doubt. The only issue is what, if any, treatment he should receive before he does. Unanimous medical and legal opinion is that it should be palliative care to ease his passing. His parents, and their uninformed supporters, reject that, and in doing so are (unintentionally) causing him more suffering. That should be stopped as soon as possible.
To make it very clear - the doctors who are actually caring for him have said there is no cure, and no hope of one. The courts that have reviewed the evidence agree. There’s no reason to doubt them. On the other side, we have a group who wish to test an unproven technique that hasn’t actually worked on other patients.
It’s obvious what the right thing to do is, and that’s to let him die as peacefully as possible. His parents feelings are, ultimately, irrelevant.
No, that’s not a mischaracterization. It would be a mischaracterization if I said he was being murdered.
Suppose you were on a medication that you need to keep you alive. Without that medication, you die. If someone takes that medication away from you, do we say “oh, that person didn’t kill wolfpup; he just let nature take its course”? No, we say that guy killed wolfpup. And it doesn’t matter if that guy is your next door neighbor or a doctor treating you in a hospital. The difference in that case is that the killing is murder.
We, as a society, sometimes sanction the killing of human beings. When we do so, we don’t call it murder, but it is killing nonetheless.
A better analogy would be that you are dying, and there is nothing that anyone can do about it. Someone offers a medicine that is expensive and has terrible side effects, and most importantly they don’t even make the claim that it will keep you alive, only that it might give you a few more moments, with a slightly better quality of life, but that the side effects will most likely more than make up for the improvement you may see, and it just might kill you outright.
Nature is taking its course. The kid will die. Nature is doing that, not the doctors. The doctors could expend every effort and resource in the world, and the kid will still die. No one is withholding anything from him that will keep him alive. They are just withholding the ability for the parents to torture their child in a misguided hope for a miracle.
It would be a bit different if anyone at all thought that this treatment would actually extend charlie’s life in any meaningful way, or improve his quality of life to a reasonable condition, but even the doctor offering the treatment is saying that this will not be the outcome. He’s not even saying it’s a small chance, he is flat out saying that this treatment will not save the kids life, just a possibility of slight improvement before the end.
You can blame the cells for taking away his mitochondria, but don’t blame the doctors for looking out for the best interests of their patient.
Seems like silly quibbling, John. Procedurally, AIUI the doctors plan to discontinue life support, so you’re technically correct, but if they did not, he would die soon thereafter anyway, and probably under much worse and uncontrolled circumstances.
The mischaracterization is in asking the rhetorical question “The stress of traveling would be worse than the stress of being killed?” which begins with a semantic quibble over what “killed” means and then proceeds to apply a seemingly straightforward hypothetical to an extraordinary situation as if the answer was obvious. In fact, the answer may well be that yes, it would be more stressful to travel, in much the same way that emergency CPR procedures can be much worse than just letting a person pass away peacefully. We are conditioned to put up with a lot in the interest of saving a life, but that’s premised on normal assumptions that there is a viable life worth saving. It doesn’t apply in certain extraordinary circumstances where the normal assumptions don’t apply.
The doctors are saying they can’t.
And yes, the stress of traveling could kill this kid outright, even with the best medical care on board.
Just out of curiosity, did you read the judge’s opinion? There is a whole one sentence devoted to transporting Charlie to the US out of the many, many pages the judgement: “Transporting Charlie to the US would be problematic, but possible.” Transportation does not seem to have played any meaningful part in the decision.
I’m basing that on what the doctors said, not the judge. Yes, it is technically possible for Charlie to be transported to the US, but that is not without risk. What benefit will that risk gain for him?
IF there was a cure waiting in the US then the risks of transporting him might be outweighed by that benefit. In this case, the doctors do not feel that the risk vs. benefit ratio is acceptable. That is a medical decision, not a judicial one.
Yeah, I get it - there’s a dying baby and it’s distressing. But NOTHING is going to save this kid. NOTHING. We can’t fix what’s wrong with him. You don’t want him to die, but you’re asking to engage him in something (transporting him thousands of miles) that has a real chance of killing him quicker than leaving him where he is with the care he is currently getting. How does that benefit Charlie?
But it’s the judge’s opinion that is being debated here, because that is the determinative factor. I’m pointing out that although you may feel transportation is a prohibitive factor, the judge doesn’t seem to agree with that. Seems like the pivotal issue here is who gets to decide whether alternate treatment is reasonable.
We can’t risk causing the patient pain because that will interfere with our letting him die doesn’t make a lot of sense to me. YMOV (O = obviously).
And just to be clear, I don’t agree with the parents. I’d probably pull the plug. But I just don’t think it’s my decision to make, nor do I think it should be a judge’s decision, in this particular case given the particular circumstances here. And in that case, the issue of transportation is simply not part of the equation.
I think none of us has all the information and the situation is in flux.
I just heard about 10 minutes ago on the broadcast TV news that the hospital has asked the courts to intervene again, specifically because two other hospitals are discussing possible therapy for the child.
The issues surrounding transport ion are NOT simply about causing the kid pain, it’s about him dying even sooner than he would otherwise.
I’m not even entirely convince the kid is in pain, or capable of perceiving pain. I know his parents are in pain, emotional pain. Also, based on what I saw them saying on TV today I don’t think they understand their child is terminal and this proposed therapy is NOT a cure. Then again, I don’t blame them for being delusional when facing the death of their baby. I’d prefer they not be, but it’s hardly an unusual response to the impending death of a baby.
The whole travel thing is a red herring. If you think the therapy has no value, then of course you’re going to think that travel is an issue. But if you think the therapy does have value, and the only alternative is death, then of course the risk of travel is worth it. You are begging the question (in the actual, debate sense) by saying the travel isn’t worth it because the therapy is of no value. Whether or not the therapy has value is what is up for debate. Or rather, who gets to decide its value. Is it the courts or is it the parents? In this particular case, I’m siding with the parents. Not because think they are making the best decision, but because I think it should be their decision to make.
If no legit medical facility was willing to three the kid, then I can see where the state should step in. If the parents are truly incompetent, I can see where the state should step in. But neither of those conditions are met here.
As far as personal opinions go, I have to agree with you here.
Trying desperately, even foolishly, for a cure doesn’t rise to the level of abuse, and “opt-out” end of life treatments need to be optional. The courts should never mandate them.
If the parents were ignoring serious and real treatments and seeking after fraudulent miracle cures, then that’s where the courts need to step in. Parents have been known to refuse life-giving blood transfusions for minors on religious grounds: the courts are very proper to interfere and to mandate transfusions in those cases.