The court stated that its decision was based on the conclusion that this treatment would be of no benefit and would only prolong the suffering of the child. That's a far cry from "because we said so." Even the American doctors expressed doubts after learning more about the state of the disease.
They're always going to have some justification for the death ruling, and it'll sound well thought out and sane. I'm not claiming they have bad intentions. I'm also not saying it's likely it would've been a big help. If you watched TV interviews with them they KNOW it probably won't work. But denying parents that slim chance if they actually have the resources to pull it off is monstrous. It is an evil act. I'll be addressing this in a later bullet.
I'm not even coming at this from a religious angle. I'm not religious. Though it should be said to some the sanctity of life makes this horrific.
I do not trust a court or government to make that decision for me. The prospect of one wielding that power... even if only in the medical issues front... is terrifying. The potential for wrongdoing if the wrong person gets into a position with this power is... unthinkable.
You have to face the reality you'll inevitably kill someone who didn't want to die. Eventually that will happen in this system.
Think of it through this lens - Innocent until proven guilty is the mantra of the court system because if you imprison an innocent man they lose some of their life. If you execute they lose all of it. It can never be replaced, be it the time or the existence. You may be right, many people might suffer unnecessarily and will have wanted to die. But you will kill people who didn't in the other option. That's not a risk I think anyone should be able to accept.
we don't do a good enough job in this country prioritizing quality of life over quantity and knowing when it's time to say goodbye.
And that's the rub. Who on earth should have the power to choose the quality points needed to live? Who decides what's worth points? And how many?
Nobody but the individual should. This is a core liberal value. It's in the name liberal. "Liberty" Specifically "Liberty From." If you're able to make a judgment yourself (dying but adult and conscious) and want suicide that's an informed choice by an individual and I'd support that. If you're not the closest you can get to one is the will of the closest relative who knew them best.
In the case of a child? You can't possibly know what would be enough, he can't speak. But think of him as a human, a fully formed one. He might want to die. But he might want to live. And so you have to phrase the question for what it is.
"Am I willing to kill an infant who doesn't want to die?"
I don't have numbers off the top of my head but since you brought it up, I would like to point out that the parents of children with special medical needs have divorce rates way above the national average without having care withdrawn. I can understand given the stress it must add, but I wonder sometimes in these cases if we didn't go to the extreme measures we often do and allowed the patient to pass peacefully if that closure would lead to different family outcomes.
You should also wonder what that voice sounds like as you picture your dead child. "If only I'd tried that option I completely had within my grasp." I personally think that would break me more than trying and failing. I suspect many many people feel the same. To have tasted a chance for victory then lose is always harder than to immediately taste defeat, to know you're losing at the outset. They raised 1.3 million. Sad as all this is I can't imagine the elation they felt the day they had the funds to pull this off. Only to plummet harder than before.
My goal isn't to change your mind on any of this, but I appreciate you challenging my own assumptions and beliefs even if I feel strongly in my comments above. I also don't want to presume that your feelings about this case mean that I am generalizing that to all situations of life and death. On the chance that you haven't thought about these things before though, I would recommend you read "Being Mortal" by Atul Gawande. I personally think that some of the concepts should be required study for everyone.
It's been respectful. I see this through 3 main lenses. Power politics (the dangers of giving an institution this kind of power), the full scope of impact to the patient, the parents, and those around that child, and lastly ethics based on individualism. You see it through a different one. Probably one where you wonder if you'd want to be trapped in a painful vegetative state where you can't ask for release. That lens isn't a wrong one. It's a big one. But I think it ignores some big picture angles. And also that it's incredibly dangerous to give any government or court the right to deal death to the innocent citizens of it's nation.
If you haven't read it I'll suggest "On Liberty" due to the ethical lens I'm using paired with "The 48 Laws of Power" for a view into the minds that advance in the world. The people who very easily could and would get to those positions to deal death. I think it's safe to bet we share the suffering lens and just have different emphases.