BBC: Doctors can withdraw baby’s life support


Will Truman

Will Truman is the Editor-in-Chief of Ordinary Times. He is also on Twitter.

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112 Responses

  1. Avatar Christopher Carr says:

    I feel like this sort of case provides a fairly good argument against a socialized British system on medicine.Report

  2. Avatar Aaron David says:

    Well, that solidifies my opinion of Socialized Health Care.Report

    • Avatar Stillwater says:

      No different than a private health insurance policy excluding those types of benefits, which is what the GOP is angling for in their R/R policy. Market mechanisms cure the ill! (Well, just the sickness of requiring healthy people to pay for sick people’s medical care…)

      The only benefit in our system, I guess, is that a USAmerican could pay out of pocket to keep her newborn on life support, supposing she had the bank account to manage it, anyway. But I’m not sure that’s not the case in Britain. If she could afford it, would the NHS have denied her newborn treatment?Report

      • Avatar Will Truman says:

        No different than a private health insurance policy excluding those types of benefits,

        An insurance company in the US can decline to pay for something, and they can decline to do it themselves, but they can’t say “The kid can’t have it whether you can pay for it yourself or not.”Report

        • Avatar Morat20 says:

          But it’s the same thing. Kids get yoinked off of life support. Whether it’s because a panel of doctors decide it’s futile, or because the parents can’t pay — the end result is the same. A machine is turned off.

          The only difference is the selection mechanism.Report

          • Avatar notme says:

            No, no one from the insurance company will show up and pull the plug. The parents would be free to take their kid to another provider. Its a false equivalance.Report

        • Avatar Stillwater says:

          Can the NHS say to a citizen “you can’t receive that treatment even if you can pay full price for the care provided?”

          That’s the issue. Otherwise, both CC and Aaron are just arbitrarily prioritizing the role “exclusion” plays in each system.

          And even then, if it turns out a private British citizen is not allowed to pay cash for a medical service, it’s a pretty easy fix.Report

          • Avatar Will Truman says:

            That does appear to be what the NHS is saying, as best as I can understand. They’ve raised $1.3m and want to transfer care to the US. The NHS still wants to pull the plug.Report

            • Avatar Stillwater says:

              With $1.3 million at stake I imagine Canada feels like the bastard stepchild.Report

              • Avatar North says:

                More, they raised 1.3 million pounds. That’s more than 1.3 million dollars, Canadian or American.Report

              • Avatar Will Truman says:

                You’re right, it is pounds. I misread it as Euros and did my conversion there.Report

              • Avatar J_A says:

                Yes, you can use your own money to pay for your own treatment in the UK. The glitch is that once you do that, you lose permanently (or for a long time) NHS future coverage of that specific issue. In other words, if you have, say, breast cancer, and you decide to go private for an experimental breast cancer treatment, you cannot go back to NHS for future breast cancer treatments. You have voided your own guarantee, so to speak. But you can still go to NHS for lung cancer treatments or hip replacements.

                I think the legal issue here is that the treatment is to be applied on the child, not the parents, and the child cannot consent to go off NHS. I would expect a guardian ad limen to be appointed by the court to argue his side of the case.Report

        • Avatar North says:

          Hmm.. the article does say they raised in excess of a million pounds to finance carrying their kid off to the US. (most likely to die) so, while I’m initially very inclined to be sympathetic to the NHS, this seems to have crossed over the line from a highly necessary and reasonable need to ration resources into moral busybodieness over what others think would be best for the tyke.

          Sort of like the United thing the NHS probably should have blinked when the parents ponied up the dough.Report

          • Avatar Oscar Gordon says:

            Well now, if they let these parents raise that kind of money and go to the US, it wouldn’t be fair to parents who couldn’t raise that kind of money.Report

          • Avatar Will Truman says:

            Yeah, I had the same spectrum-of-response. When I thought it was about resource allocation I kind of shrugged it off. It was only when I found out that it wasn’t that it became noteworthy.

            And I can actually see the other side of the story. My wife has come home in distress over stories of patients that the family really needed to let go of but were unwilling to. But that distress is specifically because they can’t simply choose to pull the plug and refuse to transfer the patient.Report

          • Avatar gregiank says:

            This reads more like a legal system issue then a strictly health care issue. The parents aren’t being allowed to take their child to get the treatment they want. The NHS might be saying no more here in our hospitals but it’s the law/court that is saying you can’t take the kid away. I think we need to know what the laws are based on to really understand this situation. This isn’t’ costing the NHS to let them take the kid our of the UK. It’s about the rights of parents to choose treatments for their child.Report

            • Avatar Morat20 says:

              It might simply be this is one thing the appeal process is for — demonstrating that they have the funds to cover, out of pocket, what they want.Report

              • Avatar Will Truman says:

                Could be, but nothing I have read indicates that. The judge’s comment was:

                “It is with the heaviest of hearts but with complete conviction for Charlie’s best interests that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”


            • Avatar Stillwater says:

              It’s about the rights of parents to choose treatments for their child.

              But only when they can afford to pay for ’em. Which is exactly the situation the US is in regarding healthcare generally, but GOP-based R/R in particular.Report

              • Avatar gregiank says:

                Well yeah. But in this case they parents want to take the kid out of the NHS system and want to pay their own (donated) money. That is less about NHS rationing and whatever the laws in the UK are parental rights.Report

              • Avatar Stillwater says:

                I didn’t read anything about that in the BBC linky. The judge said that medical professionals unanimously supported pulling the plug, and the GoFundMe folks haven’t made up their mind about what to do with the 1.3 million whatevers. (Did I read that wrong? I didn’t see anything about preventing the kid from being sent to the US.)

                If anything it struck me as the opposite: that the issue is driven by a consensus within the medical community re: the child’s prognosis.Report

              • Avatar North says:

                Okay the thing is they raised 1.3 million pounds to pay for the cost of getting the kid treatment in America. So at that point it stopped being the resource allocation argument where the NHS’s case is rock solid. The article indicated that now that the judge has forbidden the parents from taking the tyke for treatment they’re in discussion with Gofundme over what happens to the money because the money was to help them take the tyke for treatment.Report

              • Avatar Will Truman says:

                It seems to me that it can be inferred from the article. The NHS simply wants to pull the plug and believes that is the right thing to do.

                In any event, it’s stated in this Guardian piece that funding and money are not the issues..Report

              • Avatar Stillwater says:

                I didn’t see anything in that linky suggesting that the NHS or British government is preventing the kid from being flown to the US. Could you point me to the relevant portion?

                Repeating comments made in the other linky, it mentioned that the consensus – apparently even including the US doctor who’s familiar with this type of genetic disorder – is that the child’s life won’t improve, only degenerate. So the decision – and overall issue – is purely medically motivated, and not politically/financially motivated.Report

              • Avatar Will Truman says:

                In both articles the conflict appears to be that the doctors want to pull the plug and the parents want to take the kid to the US. The judge ruled in favor of the doctors, which means that the kid can’t go to the US. I think that’s a justified inference.

                If they can take the kid to the US, then there is no conflict because it appears they have the money to do so. If no hospital in the US would take them, then there is no conflict because they can’t go to the US anyway. There is conflict, it reads to me, precisely because the NHS is trying to prevent the transfer.

                In the Guardian article, the Judge says that hospitals in the US would be willing to try anything. The judge found that to be against the interest of the child and ruled that the plug should be pulled. (“Referring to the £1.2m raised, the judge stressed it was imperative he made clear that this case was not about money and said one medical professional had told the court that in the US they would try anything provided there was the funding.”)

                Nothing in either article suggests that the British courts and NHS would allow them to take the child the US.

                Here’s another article from The Daily Mail:

                The parents had begged the High Court to give their baby son his ‘one chance at life’ – experimental treatment in the US.

                But Mr Justice Francis ruled that such treatment was not in Charlie’s best interests as it could not reverse his severe brain damage but could cause him pain.

                The judge ruled doctors at Great Ormond Street Hospital should stop his life support treatment.

                It would be impossible for his parents to get him overseas without the hospital’s help.


              • Avatar Stillwater says:


                This is from the Guardian article:

                The child’s treatment would not immediately be withdrawn while his parents consider the possibility of appealing the ruling.

                Again, I’m not sure what the actual issue is here.*

                *Conceding that I may not understand what the actual issue is here. Is it that they’re prevented from putting the kid on a plane (I have a hard time believing that) or that the parents don’t like the ruling from the court to pull the plug? Something in between?Report

              • Avatar Will Truman says:

                Right now everything is in a holding pattern until the opportunities to appeal are exhausted. So the hospital can’t pull the plug yet. But the parents can’t transfer the baby, either. And having lost, the parents face an uphill climb* to reverse the ruling on appeal. If they don’t succeed in that, the plug is pulled. If they do succeed, he can be transferred.

                But the parents are currently prevented (by the NHS and the courts) to transfer the child to the US, and they won’t be allowed to do it until or unless they get a reversal of the judge’s order.

                * – Basically, they have to demonstrate that the facts have materially changed since the judge issued the ruling.Report

              • Avatar gregiank says:

                If they can take the kid to the US then what is the issue? It reads like they feel they can’t do that. They want to take him for an exprimental treatment in the US. If they can do that without issue, then go for it.

                Related: Doctors do have to make these kind of decisions. My wife’s friend/ yoga teacher had a bunch of strokes out of the blue a couple months ago. She went from normal functioning to having a leg amputated and into a vegetative state. The doctors sought guidance from her friends ( the family is estranged) about what to do. They could just keep her hooked to machines for years. But would she have wanted that? Should the doc’s resuscitate? Should they stick her on vent? Nobody thought she would want that. At her age 69, recovery was very unlikely and since she was a dance/ yoga teacher most of the passions in her life would be gone. What to do? That is the reality of modern medical care.Report

  3. Avatar Jaybird says:

    Depending on technocratic solutions seems harsh in the short term, but isn’t it obvious that the parents lack perspective in this?Report

  4. Avatar Kazzy says:

    Can the child not be transferred within the next three weeks?Report

  5. Avatar Francis says:

    I encourage people to read the decision

    Key sentence: “Some people may ask why the court has any function in this process; why can the parents not make this decision on their own? The answer is that, although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in
    the child’s best interests.”

    The intersection of bioethics and parental rights in the US is a hard topic. At what point do we allow parents freedom to raise their children in the manner that they want, and at what point does the State step in? How much pain and suffering can a parent impose on a child? I don’t think that it’s an easy question to answer.Report

    • Avatar Jaybird says:

      If we killed the child now, we could spend the money on children who might actually grow up to pay taxes someday.Report

      • Avatar Kazzy says:

        Do you think that is the argument being put forth?Report

        • Avatar Jaybird says:

          Not yet.

          But my “isn’t it obvious that the parents lack perspective in this” comment left me feeling unsatisfied after realizing that this *WAS* the argument being put forth.Report

          • Avatar Will Truman says:

            That’s not the argument being put forth though. They’re not saying “We shouldn’t have to dedicate resources to this” but rather “This is wrong (even if it were free)”Report

            • Avatar Jaybird says:

              “This is wrong (even if it were free)”

              Sure. And, by virtue of the fact that they see it as wrong and the parents don’t (following some biological imperative or something), they have the perspective that the parents lack.

              I’m unclear about why this gives the government jurisdiction, but that’s the great thing about having God on your side, I guess.Report

              • Avatar Will Truman says:

                Right. What I was saying is that your first read was correct. The NHS believes it knows better than the parents.

                (I think they are probably right, too, though I am reluctant to cede the decision to them.)Report

              • Avatar Jaybird says:

                My subsequent read will be correct in about Fifteen Minutes.

                “The Greater Good” drums are beating in the distance and growing closer.Report

      • Avatar Francis says:

        This is an utterly reprehensible comment. I’m shocked that you would make it.

        Here is an exact analogy:

        “Your honor, these parents are literally torturing their disabled child.” Judge JayB: “Oh, let them kill him; the money we save on CPS ‘we could spend on children who might actually grow up to pay taxes someday’.”Report

        • Avatar Jaybird says:

          “There are people out there implying that there are also bad reasons for why we might kill the child against the wishes of the parents.”

          “How reprehensible of them!”Report

          • Avatar Francis says:

            Before you bring obnoxious snark that misrepresents what the court did, again, may I suggest that you actually read up on the limits of parental rights in this country.

            While you’re at it, I’d love to hear from you about how people die. In particular, how do hospitals / nursing homes / hospices decide that a client has had enough and it’s time to let go even if the next-of-kin is insisting on One More Procedure And They Can Pay.

            Since, of course, you’re all knowledgeable about this issue.Report

            • Avatar Jaybird says:

              you actually read up on the limits of parental rights in this country.

              This ain’t a “spanking vs. time out” discussion.

              Parents want to buy health care for their infant. They are being told that they can’t do this.

              I’m down with the whole idea that them doing this is a futile effort.
              I’m down with the whole idea that them doing this is because they’re not thinking clearly because they’re overcome with grief and stupid hope.
              I’m down with the whole idea that the kid is in pain to a degree that the kid would not be if the kid were dead.

              I’m down with the whole idea that the parents ought to give up, let the child die, fall into the bottle for a while, get divorced, start over with new marriages, and maybe have kids who aren’t going to die right after they get born.

              I find the government stepping in and saying “no, we won’t let you” as being even worse than what the parents are doing. I see the government setting this precedent as setting a terrible precedent that we will soon wish had not been set (well, maybe not the eugenics people… but you know how *THEY* are).

              But, for what it’s worth, I know that the government and the doctors have the best of intentions here and want what’s best for everybody.

              I just don’t see how that amounts to a hill of beans.Report

              • Avatar Francis says:

                “I find the government stepping in and saying “no, we won’t let you” as being even worse than what the parents are doing. ”

                “Your Honor, the evidence establishes that the parents are causing great harm to their child. While they believe sincerely that they are doing the right thing, they are simply not correct in their beliefs. The minor will suffer great pain if left in the custody of the parents.” “Hey, leave us the fish alone!”

                yeah, I get it. Who decides what harm is? The guardian ad litem? A judge? A jury? How dare the State interfere with parental decision making! Do you know how often the State is wrong? Cops and CPS make terrible mistakes every day!

                And yet. The system we’ve created empowers a person — likely an upper middle class white male — to sit in review of parents’ decisions to say: no more; this person will be allowed to die in peace.

                Why do we give judges these powers? Because a small minority of parents — too cruel or stupid to do the right thing — screwed up this issue for the rest of us. They tortured / pimped out / sexually abused / beat / stole from their minor kids so egregiously that the State was forced to respond. And now we have guardians ad litem and judicial proceedings to resolve dispute better dealt with in a hospital cafeteria.

                Hard cases make bad law. When you say that the State’s action is worse than the parents’ action here, you are necessarily arguing that the State has no power to interfere with all the other cases of torture / rape / pimping / abuse. There is no standard that you can establish that bars a court from reviewing the dispute in this case while allowing a court to interfere in all those other cases.Report

              • Avatar Jaybird says:

                When you say that the State’s action is worse than the parents’ action here, you are necessarily arguing that the State has no power to interfere with all the other cases of torture / rape / pimping / abuse.

                Oh, is that what I’m arguing by saying that the state should not have the power to prevent the parents from spending this money on health care for their child?

                If we could have figured out how to make it racist, sexist, and transphobic on top of that, we could have established that there was only one reasonable interpretation of what ought to be done.Report

              • Avatar pillsy says:

                If it’s fair to say Francis is arguing that eugenics is OK, then it’s fair to say you’re arguing that the state shouldn’t step in in cases of abuse.

                There are slippery slopes in both directions.Report

              • Avatar Jaybird says:

                I appreciate that the argument is not a pure eugenics argument but a dispassionate argument.

                Let’s swap out the baby with a dog. Make it easier to discuss.

                Let’s say that there’s someone whose dog is really arthritic. “You should put your dog to sleep!”

                “Screw you! It’s *MY* dog!”

                “I’m going to prevent you from spending money on your dog at the vet to make sure that your dog dies!”

                Would we agree that that’s just a *LITTLE* messed up?

                “Screw you! I’m going to go to a vet in the United States!”

                “Screw you! I’m going to prevent the dog from leaving the country!”

                I mean, we’re not anywhere even close to eugenics at this point. It’s just “I know better than you guys and based on how I know better, I should have the power to make decisions that you don’t have the perspective to make.”

                And given that there are *HUGE* swaths of people who will rankle at the very *THOUGHT* of going from P to Q in that statement, we’re going to see all sorts of moral outrage at the people who disagree with the assumptions going on.

                But just as we rankle at the thought of people whose job it is to tell people that they can’t take their dog to the vet anymore (we rankle at that, right?), imagine how people might think about a baby.

                At least in a nominally pro-life country.Report

              • Avatar pillsy says:

                There’s nothing in your argument that’s false.

                But there’s also nothing in @francis ‘s argument which is false. People routinely treat their dogs (and for that matter their children) like shit and get away with it because those dogs (And kids) are “theirs”. There’s every reason to be skeptical of the state stepping in when the parents are making “bad” choices, but there’s also no shortage of reasons to be skeptical of the state not stepping in when the parents are making “bad” choices. Both impulses are probably healthy, and spring from similar unease at people who wield immense power over other people.

                The conversation would be at least somewhat different if the parents were refusing to have the child treated for a treatable or curable disease because they fear doing so would place his soul in jeopardy.Report

              • Avatar Jaybird says:

                Sure. But we’re in a place where the parents are trying to save the child’s life.

                (Deontology box: Check.)

                They want to take the child to a hospital for some new technique or something. (From the article: His parents Connie Yates and Chris Gard, from London, had wanted to take him to the US for a treatment trial.)

                The Scienticians in the US might be able to learn something for future treatments? Hrm.

                (Utilitarian box: check.)

                The only real problem is that saying that the government shouldn’t let the parents do this is necessarily arguing that the State has no power to interfere with all the other cases of torture / rape / pimping / abuse.Report

              • Avatar pillsy says:

                I think you’re pretty deeply wrong about the utilitarian argument, as it’s very much in line with utilitarianism to say, “It’s time for some palliative care; keeping this kid alive just creates more suffering in the world.”[1]

                Sure, you might be able to stretch the point to studying his condition, but that starts sounding a lot like an argument that we should subject someone to agony to gain medical knowledge. There’s something that gives pretty much everyone the willies, regardless of how they think about morality.

                [1] I’m happy to acknowledge that this is the sort of reasoning that makes many people suspicious of utilitarianism.Report

              • Avatar Jaybird says:

                Sure, you might be able to stretch the point to studying his condition, but that starts sounding a lot like an argument that we should subject someone to agony to gain medical knowledge.

                Which is why it’s also possible to fall back on the Deontological argument if it comes to that.

                Switching to the Utilitarian gets you to “maybe the treatment will work and save our child… and even if it doesn’t, maybe the knowledge we gain will help some other children in the future.”

                Which could be spun as having a sad nobility to it.

                Compare to “no, we would prefer to have your child die without any of that rigamarole.”Report

              • Avatar pillsy says:

                Compare to “no, we would prefer to have your child die without any of that rigamarole.”

                I dunno, if you’re asking me my personal opinion, even with the dismissive phrasing that sounds like a far more ethical course of action. So one of the real problems here is having this poor kid subjected to prolonged suffering out of deference to his parents.

                Doesn’t mean we necessarily shouldn’t do that, of course, but we’re already on the “con” side of the ledger here.Report

              • Avatar Jaybird says:

                How much easier would all this be if only a doctor or nurse would add some nightshade to the IV drip!Report

              • Avatar pillsy says:

                I see it as far better to have these things hashed out publicly, in court if necessary, with all of the procedural protections and rights to appeal that doing so entails.

                I just don’t necessarily see why said courts should be swayed by the argument that it’s really easy to empathize with the parents in this particular case.Report

              • Avatar Jaybird says:

                Well, how does the public feel about it?

                Are they split 50/50? 60/40, even? If so, I can see why the courts might be necessary to nudge us to the inarguably correct conclusion.

                Do we know what the numbers are?
                If we do, I will be shocked if they are less skewed than 75/25.Report

              • Avatar pillsy says:

                Aren’t the courts the institutions that should be least swayed by public opinion? Many of the things they should be doing are things that a majority of people will object to strenuously.Report

              • Avatar Jesse says:

                Everybody loves judges being non-partial, standing against the majority, and obeying the letter of the law until they’re for something that the majority wants, but is against the letter of the law.

                I’d bet, just based on politics, that the same people complaining about this English judge hewing to the rules are the same ones who explained slowly to dumb liberals about how Neil Gorsuch simply had to rule that it was OK for that trucker to be fired, because that’s what the law said.Report

              • Avatar Jaybird says:

                Aren’t the courts the institutions that should be least swayed by public opinion?


                Do you want some examples of what happens to legislation when courts are impervious to public opinion, though?

                Do you want some examples of what happens to mayors, governors, and other executives?

                Do you want some examples of what happens to judicial nominees downstream of that?

                I’ve got a couple.Report

              • Avatar Hoosegow Flask says:

                What if the hospital they wanted to take the child to was highly questionable? Or what if they wanted to get him some “alternative medicine” treatments? Homeopathy? Faith healing? All done in good faith by the parents with the hope of saving the child.

                Should there never be a point where the government says ‘this is not good for the child, we can’t allow this’, or are do you just have a problem with where the line has been drawn?Report

              • Avatar Jaybird says:

                What if the hospital they wanted to take the child to was highly questionable?

                Is that what’s going on here?

                Or what if they wanted to get him some “alternative medicine” treatments?

                Is that what’s going on here?


                Is that what’s going on here?

                Faith healing?

                Is that what’s going on here?

                How’s this for something that would break your brain…

                If the parents agreed to not take the child out of the country, do you think that the medical establishment would particularly mind if the parents now switched to:

                “Alternative medicine” treatments? Homeopathy? Faith healing?

                Because it sure as hell seems to me that they’d be down with the parents doing a smudge in the room so long as it didn’t involve moving the child.

                Should there never be a point where the government says ‘this is not good for the child, we can’t allow this’, or are do you just have a problem with where the line has been drawn?

                This goes back to the sorites problem that got mentioned earlier.

                Buying medical care from an established medical provisoner strikes me as being on the part of the line where we would not want the government to start saying “nope, you can’t do that.”

                If they wanted my sympathy for their position, they should have started denying care to rich elderly people.Report

              • Avatar pillsy says:

                Is that what’s going on here?

                It’s not, as far as I know, but the fact that such things do happen goes a long way to justifying the authority the government is exercising in this situation.Report

              • Avatar Jaybird says:

                What’s wacky is that, in those cases that *DO* happen, we’re talking about parents taking their kids to quacks.

                This is a case about parents taking their kids to a Real Allopathic Doctor With A Real Degree From A Real School And Everything.

                And being told no.

                Because a judge said “it’s hopeless”.Report

              • Avatar pillsy says:

                Which is not so different from saying they shouldn’t bring the kid to quacks, isn’t it? Because it’s hopeless?

                Hopeless for different reasons, to be sure, but hopeless nonetheless.Report

              • Avatar Jaybird says:

                The only question is whether we hold the judge to be more competent on the “hopeless” question than the doctors who are talking about trying out the treatment trial.Report

              • Avatar pillsy says:

                Since there are also doctors asserting that it’s hopeless (the judge is supporting the decision that doctors had already made), it’s not immediately clear to me why he isn’t. Most of the arguments that suggest leaving it the hands of the parents seem to cut both ways.Report

              • Avatar Jaybird says:

                If it’s up in the air, the judge saying that he agrees with the doctors who think it’s hopeless is…

                Well. I can easily see why someone might think that there is enough wiggle room to allow the parents to pursue health care for their child.

                Or certainly nowhere freaking near enough wiggle room to allow the government to say “nope, that’s quite enough health care, thanks.”Report

              • Avatar pillsy says:

                They might, if they implicitly or explicitly assume that there’s basically no harm done to the child by letting the parents seek out more care for him.

                But that assumption is, well, an assumption, and one which isn’t so obvious as to be undeniable. Indeed, rejecting that assumption seems to be the crux of the decision.Report

              • Avatar Jaybird says:

                It doesn’t even have to take the assumption that there is no harm done.

                It’s that the harm, if any, is within the jurisdiction of the parents and not the jurisdiction of the government.Report

              • Avatar pillsy says:

                OK, but that assumption still isn’t at all obvious, and it’s substantially different from the assumptions that we make in a lot of not-that-different situations.Report

              • Avatar Jaybird says:

                Is either side particularly obvious?

                If not, the whole “obvious” counter-argument seems to be a bit of a red herring.

                The proposition that the other situations are not-that-different is not one that has been demonstrated to be true.Report

              • Avatar pillsy says:

                Is either side particularly obvious?

                No. But I don’t think, “Let the parents decide,” or, “Give the parents wriggle room,” follows from that ambiguity.Report

              • Avatar Jaybird says:

                I don’t think that it follows from ambiguity.

                It starts there. That’s the starting point.Report

              • Avatar El Muneco says:


                Every month or so, there’s a set of parents somewhere who are part of a cult-ish group who exercise their right to do they feel best for their child, who then dies in protracted agony from a treatable disease.

                Doctors in this case are basically saying that what the parents want is, like in the cases of the fanatics, tantamount to torturing their own child to death.

                But as you point out, parents have broad rights to torture their own children to death against the wishes of doctors, and the government should stick to its knitting.Report

              • Avatar Jaybird says:

                But this isn’t a couple of vegans insisting on raising their child on a fruitarian diet.

                This is a couple of parents whose child has a disease, and they want to try a treatment for their child’s disease.

                And the court has said “nope, you don’t have that option”.

                This is not the result of the parents being bad actors in the first place. This is the result of the parents doing their damnedest to save the life of their child.

                And being told that they shouldn’t have that option.

                The worst of the torments in Pandora’s Box was the last one. It’s afflicting the parents now and I might even agree that it’d be a mercy to take it away from the parents.

                But I find myself somewhat against the idea that that call would be one that is within the purview of the government.

                It’d be less of a violation to have a kind doctor or nurse kill the child.Report

              • Avatar switters says:

                I’m pretty much uncomfortable with this too. I’m just not sure what you are proposing that would allow the state to accurately categorize this case as a case where they don’t get to say – “the parents preferred course of action is tantamount to continuing this child’s suffering, despite their best intentions, so they can’t take it” and the case above (the parents refusing treatment for religous reasons) as one where the state does get to say “the parents preferred course of action is tantamount to continuing this child’s suffering, despite their best intentions, so they can’t take it.”

                So while I agree that the court may have got it wrong here, I can’t accept “but I find myself somewhat against the idea that that call would be one that is within the purview of the government.” Because I have no idea how that could be accomplished without letting a bunch of parents i might think need to be constrained by the state act without such oversight. And at least with respect to our government (and that in the UK), my guess, mostly uneducated admittedly, is that more children are harmed by the state’s failure to intercede than are harmed by their interceding. And I do admit that latter number may be significant.Report

              • Avatar Francis says:

                And once again (!) we see you substitute your own judgment for the judgment of the court where a) you don’t know the law, and b) you haven’t read the record.

                Did you ever get around to reading up on the Administrative Procedure Act? That law is going to be a big deal during this Administration.Report

              • Avatar Will Truman says:

                Could well be the judge’s ruling is consistent with the law and precedent and the objection is with the law and precedent that guided the judge’s decision.Report

              • Avatar Jaybird says:

                I wasn’t aware that the Administrative Procedure Act would apply to British people in London.

                I probably need to really investigate it if it’s relevant to this particular case.

                Could you start me in a good direction or is Wikipedia sufficient?Report

              • Avatar Francis says:

                I’m quite sure that if you put your mind to it you can deliberately misinterpret what I write even more than you already do.

                or, following the direction of our bloghost, you could try reading my comments charitably.Report

              • Avatar Jaybird says:

                In doing research on what the law in Britain is, I found this in The Guardian.

                Apparently, there are some folks criticizing the legal process itself in this whole thing.

                But I am not a lawyer.Report

              • Avatar Francis says:

                I can’t get the comments to open. Can you reproduce the comment here?Report

              • Avatar Jaybird says:

                It’s in the essay itself:

                What was extraordinary is that the state – our representative in court – says that although it rightly felt it had a duty to protect Charlie, it had no role in making sure that his parents’ view of what was in his interest was properly represented. Yates and Gard were not entitled to legal aid. The judge told the court that he found this “remarkable”. This is not the sort of thing judges normally say.


              • Avatar Francis says:

                On that point I am in perfect agreement — the State’s obligation to pay for counsel for individuals should be much broader than just for criminal trials. Civil forfeiture, guardianship, even arguably divorce are all proceedings, among others, where the State should have an affirmative obligation to provide counsel for those who can’t afford it.

                My view, however, is not held by sufficient legislative or judicial majorities.Report

              • Avatar Jaybird says:

                (Oh, I couldn’t get the comments to open either.)Report

              • Avatar Kimmi says:

                Why can’t we just worry about the hundreds or thousands of children being murdered by people their parents pay to do so? The government has forced these people to provide exceptional levels of care, often at the cost of people’s marriages or jobs.Report

              • Avatar Jaybird says:

                Is this an abortion thing or are you talking about something that I haven’t ever even heard of, even obliquely?Report

              • Avatar Kimmi says:

                Most of the time, the murders are designed to look like accidents.
                Most of the time, the murders are of special needs kids that the parents no longer wish to be legally compelled to support at the expense of their marriage (etc. it’s a lot of work, and once you have the kid, you are told you MUST do this, or face legal consequences).
                $40,000 to $50,000 a pop.

                Here’s what happens when they aren’t terribly competent:

                (Really? They adopted the kid? And then killed him? Jesus, that’s perverse).Report

            • Avatar Aaron David says:

              “Three Generations of Imbeciles Are Enough” So wrote Justice Oliver Wendell Holmes, Jr. in Buck v. Bell, a 1927 Supreme court case upholding a Virginia law that authorized the state to surgically sterilize certain “mental defectives” without their consent.Report

            • Avatar Jaybird says:

              Oh, to answer the whole “how people die” thing, we kinda talked about this way back when in Kazzy’s post on Scott Adams’s blog post about euthanasia.

              I thought the comment section was pretty good on that one.Report

      • Avatar Kazzy says:

        So… no one involved is making a cost-benefit utilitarian argument? Want to walk this back @jaybird .Report

        • Avatar Jaybird says:

          Oh, they are. But they’re limiting it to the child. “The child is in pain. That’s several minuses. The potential for healing is miniscule. Therefore the utilitarian calculus is that the child ought be allowed to die. Easy peasy.”

          “What if the parents raise money for a long shot trial of some sort?”

          “Then the government should prevent this money from being spent in that manner to the point where the child should be prevented from leaving the country.”

          Easy peasy.

          It’s when this utilitarian calculus turns out to be less than perfectly persuasive that you will see more appeals to even more calculi.Report

          • Avatar Francis says:

            This makes no sense.

            The judge was ruling on the hospital’s application to withdraw artificial ventilation and provide palliative care only. The parents opposed on the grounds that a “pioneering treatment” existed in the US. However, there was unanimity among the testifying experts that the treatment would not reverse the structural brain damage that the child had already suffered. Conclusion:

            But if Charlie’s damaged brain function cannot be improved, as all agree, then how can he be better off than he is now, which is a condition that his parents believe should not be sustained?

            Or, put simply, “I, the judge, hereby rule that Charlie has the right to die in peace.”

            But we have 1.3 million dollars to give to the US doctors just is not responsive to the judge’s finding.

            Query: How did you feel about the Terry Schiavo case? It seems to me that you should come down on the side of the parents. If you think that the court decision giving the husband the right to pull the plug was correct, I’d be interested to read how you draw the distinction between the two.Report

            • Avatar Jaybird says:

              Query: How did you feel about the Terry Schiavo case? It seems to me that you should come down on the side of the parents. If you think that the court decision giving the husband the right to pull the plug was correct, I’d be interested to read how you draw the distinction between the two.

              My feeling about the Terry Schiavo case was that if an error should have been made, it would be better to make an error on the side of “life”.

              That said, it comes down to jurisdiction… and the question was who should have had jurisdiction over Terry: her husband or her parents? The parents argued that Terry was still in there somewhere, the husband argued that Terry would want to be allowed to die.

              Well, by the usual definitions of “marriage”, the right to speak on behalf of a person transfers from the person’s parents to the person’s spouse. Which then got into weird discussions of the extent to which the husband had abdicated his role of husband by living with another woman and siring children with her. (This goes into the whole “marriage in the eyes of God” vs. “marriage in the eyes of the state” distinction that I made a lot in the gay marriage debate.)

              On a legal level, however, it was the husband’s call to make. And he made it.Report

  6. Avatar James K says:

    My guess is that this is a policy partially rooted in long-term cost containment.

    The essential problem with healthcare policy is that while peoples’ behaviour makes it quite clear that we all value human life finitely, we are all expected to pretend that human life is infinitely valuable. This is a problem for industries like healthcare where trading money for life is the entire function of the industry.

    People get very upset if you tell them “sorry, we won’t pay for your terminally ill relative’s care because we could save 3 people with that money, and its unlikely any of them will be back on death’s door in another 6 months”. So instead the system lies, “I’m sorry, there’s nothing we can do.” This is how government healthcare works – the CBA is done behind the scenes because people riot if you tell them the truth to their face.

    The problem the US system cause sis that it shows there are things that can be done that the government systems won’t do. And this cause social pressure to fund this essential, life-saving treatment and if you start talking about cost-effectiveness you get treated like a psychopath. So the only way to fight against infinite claims against the NHS’s budget is to get interventions declared bad for the patient – then they can refuse treatment on humanitarian, rather than economic, grounds.

    Don’t get me wrong, one way or another treatment has to be constrained – resources are finite and people care about things other than human life so that means we can’t treat life as infinitely valuable, and no one would like it if we tried. But because people are unwilling to accept this fact we end up building this edifice of lies around our healthcare systems that is deeply unhealthy. This is one thing I respect about insurance-based systems: “I’m sorry but you can’t afford that” is at least honest.Report

    • Avatar LeeEsq says:

      People are unwilling to accept I’m sorry you can’t afford it for themselves and their loved ones at least. Most people see it completely unfair in the abstract as well.Report

    • Avatar j r says:

      I don’t think that it is any coincidence that the areas in which we are seeing occurrences of cost disease the most are the areas where people tend to think that they deserve the best: health care, education and housing.Report

      • Avatar InMD says:

        People want quality but I’m not sure what people feel they deserve has to do with it. The cost disease is better attributed to a combination of the fact that these are essential goods/services which also happen to be tough to quantify for individual purchasers. Adverse outcomes set the stage for intervention by the state. Sometimes the state is good at it, sometimes it’s inept.Report

        • Avatar j r says:

          Do you realize that your second sentence contradicts your first?

          As for deserve has to do with it, judging but our political conversations, it has a lot do with it.

          PS – I didn’t say anything about state intervention. You did, probably because you imagine I’m making a particular kind of ideological point. And you probably think that because that’s how our political conversations have been structured.

          It’s entirely possible that the American government could step into any number of markets and keep costs down by forcing people to accept less health care, less education, and less housing than Americans think that they deserve. That’s what they supposedly do in other countries, right. The o ly reason we don’t do it here is because of those damn right wing ideologues, right?

          Sounds like a good enough story. I’m sure lots of politicians are ?Ining up to tell! a!Ericams that they don’t deserve all that they think they do and will just have to make do with less.Report

    • Avatar Kimmi says:

      The problem with the American system is that it actively incentivizes hospitals letting their sicker patients die.Report