A Death Panel With a British Accent

Will Truman

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

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111 Responses

  1. Elizabeth Picciuto says:

    I’ve gone through much of the same thought process and come to the exact opposite decision. That such health care decision-making is not a necessary condition of single payer, but a contingent one. (I’m talking about end-of-life, not “Doctor, gimme antibiotics for my cold.”)

    I’ve spoken to many doctors on both sides of this issue. Some share your wife’s experience. Others do not. People sometimes want to die because they don’t want to be a burden on their relatives, which ideally they shouldn’t have to be.Report

    • Health care systems certainly matters in end-of-life care decisions in most cases, but this happens to be one of the few cases where it really doesn’t. I think 90% of people first looked at this case and saw a resource issue, except that directly the resources weren’t really an issue here.

      I am coming around to the possible secondary nature of it, for reasons mentioned in the OP. A line I meant to work in there that I didn’t is that if you let Charlie Gard go to the US, you run the risk of feeling like you’re conceding the reason you would deny care is financial. Nobody likes to think it’s financial. We like to think we’re doing right by the people we let die, to whatever extent possible.

      Anyway, that’s not the driving issue here. But I thought I was going to write a piece saying that it wasn’t really an issue at all, and it turned out to be more nuanced than that.Report

  2. LeeEsq says:

    Opponents of single payer seem to trust market based rationing because it seems more natural to them. People with the means to pay can get the care they want for them or their love ones even if it won’t work and those without the means get whatever the insurance company or market will be willing to dole out. Single payer advocates oppose this because it seems unfair. Government based rationing comes across as more rational and ethical because money is less of a factor. If your case is hopeless, your not going to get the care. I guess religious people are opposed to rationing in cases like Charlie Gard or Terry Schiavo because they believe miracles can happen.Report

    • Will Truman in reply to LeeEsq says:

      A critical thing here, though, is that this isn’t rationing. That’s why I think making this about single-payer is something of a mistake. There could be a relationship, but it’s not a straightforward one.Report

      • LeeEsq in reply to Will Truman says:

        This isn’t rationing in a strict sense of the word that doctors had two people to treat but only the resources to save one but many people are going to perceive this sort of treat or decisions as a type of rationing. It comes across as a type of rationing to people because it involves the withdrawal of care.Report

    • fillyjonk in reply to LeeEsq says:

      I wonder, though, if there’s also a concern/perception with single payer that “some pigs are more equal than others” – that, for example, a Congressperson’s kid with something inoperable might get care whereas a McDonald’s manager’s wouldn’t. Not that that’s any more fair/logical than “market forces,” but I could see some people figuring there will be a two-tiered system: what those with connections get and then what the rest of us get.

      not that that’s much more different from now, except I have seen many fundraisers to help pay for care for someone who needed it and didn’t have the money….Report

      • Saul Degraw in reply to fillyjonk says:

        Of course there is a some pigs are more equal than others aspect.Report

      • J_A in reply to fillyjonk says:

        As an aside, and contrary to urban myths, there’s no prohibition to “go private” in the U.K. If you have the money, you are welcome to use private care. And many people do, particularly to avoid the queuing in issues that are serious but not life threatening.Report

      • LeeEsq in reply to fillyjonk says:

        That could be the case. Many Americans might perceive that government provided healthcare/insurance would favor people with the right connections but I think not wanting to help “those people” is another important aspect. The current system helps those with money or connections to money though.Report

    • Kimmi in reply to LeeEsq says:

      Market based rationing == government based rationing.
      See medicare payments.Report

  3. Damon says:

    So Charlie had a guardian appointed for him since he can’t speak for himself. Typically, you’d expect that the parents would be in better position than some lawyer to understand what’s best for the kid. This leads me to conclude that an “independent” guardian, who’s only going to rely on the same info that’s already known (docs say the kids hopeless and in pain, ‘rents want the kid to live). So, the state is paying for an independent guardian to determine if they should shell out cash for an experimental treatment in the states. HMMM. Unless someone can demonstrate that the parents are being outrageous, the default should be the parents are the best advocate of the child’s wishes. Otherwise, it’s the equivalent of the state being the prosecutor, defense attorney, and judge. “Your honor, we’ve all agreed in sidebar that the best solution for all parties involved is lethal injection”. Defendant: “What, I never agreed to that!”. Judge: “Your attorney has.” This strikes no one as a major conflict of interest/freedom/republic?

    And then there’s the docs not letting the kid leave so the parents can take him to america for the treatment. Hey, the NIH don’t want to pay for the costs? Fine. But keeping the kid in the hospital, essentially by force? NFW. That’s uncalled for.Report

    • fillyjonk in reply to Damon says:

      I also wonder: would we learn anything about this condition/treating it from permitting Charlie Gard to have the treatment?

      I don’t know. The whole “But he’s suffering, let him die” thing, I don’t know. If I had some bizarre, inoperable disease, and I was told, “If you have this treatment there is a 0.0002% chance of buying yourself more time but it will also advance knowledge on how to treat people in the future” I might be more inclined to do it, since I’d feel like my life was less of a waste.

      One thing this does tell me – even though infants can’t have Advanced Directives, probably everyone else should. (Though I wonder about me: as I get older, I will have less and less family around and relatively few people who might be interested in advocating to keep me alive….) They did ask me if I had one when I was afraid I was going to be facing surgery (I didn’t, and at that point I was so worried/upset that I said I’d write one before going under the knife. Turned out not to need it, fortunately)Report

      • Damon in reply to fillyjonk says:

        “I also wonder: would we learn anything about this condition/treating it from permitting Charlie Gard to have the treatment?” That’s a good point. My ex MIL was diagnosed with a pediatric form of cancer. When it occurs in adults, the survivability is something like 5%. She and husband could barely be described as middle class, but she was able to get into an experimental program that actually cured her.

        “One thing this does tell me – even though infants can’t have Advanced Directives, probably everyone else should.” Yep. I probably should update mine. I watched my father suffer through ALS before dying, and while he was fortunate that he died in his own bed and had someone who could care for him, I’ll never go out like he did.Report

        • Burt Likko in reply to Damon says:

          When it occurs in adults, the survivability is something like 5%. She and husband could barely be described as middle class, but she was able to get into an experimental program that actually cured her.

          Is this what we mean by “miracles”? 5% is improbable but when one’s own life or a loved one’s is what hangs in the balance, anyone would take the shot. .0002%, that’s a different calculus and a better argument for being “miraculous.”

          But I don’t really think we are seeing decisions made by way of putting hope in miracles. We’re seeing comparatively different comfort levels made by groups of third parties with which there is greater familiarity. Brits have had the NHS for two generations now and are genearly comfortable with its involvement in major health care decisions. I’d not be surprised to find a Brit distrusting a for-profit insurance company in the same situation where a US American would feel exactly the opposite and for the converse reason: it may well be the case that the insurer is going to make the same call as the government most of the time, but we in the US are simply more familiar with that decision made by way of a regulated contract as opposed to just regulations.Report

          • Damon in reply to Burt Likko says:

            Yeah, I’m not suggesting that decision should be made in the hope of miracles. I was simply pointing out that my MIL had a severe illness that she was 100% going to die of, that she was fortunate to have good timing and get into a experimental program, and was luck would have it, the experiment worked, and she survived.Report

          • Aaron David in reply to Burt Likko says:

            I can see the cultural difference in who to trust at this point, but with one caveat. An insurance company cannot stop you from saying “OK, I will pay for it myself” and leaving the network. But a gov’t can.Report

            • J_A in reply to Aaron David says:

              An insurance company cannot stop you from saying “OK, I will pay for it myself” and leaving the network. But a gov’t can.

              A hypothetical, nonexistent, government might. The real, actual, UK government, can’t.

              Again, they are not stopping the Gards to have an experimental treatment applied on themselves. They are blocking the Gards forcing this treatment on Charlie, who is a separate person from the Gards, with his own rights, and who is unable to consent one way or the other.Report

              • Damon in reply to J_A says:

                “A hypothetical, nonexistent, government might. The real, actual, UK government, can’t.”

                Actually, they can.and have. The gov’t (NHS) petitioned the gov’t to appoint a guardian, who works for the gov’t, to decide the best interest of the child since Charlie was incapable of stating his wishes. The NHS already had determined that the parents didn’t have the best interest of the child in mind, so authority to direct the child’s care or terminate same, was needed to be changed. Once the guardian decided the best interest of the child was to die, there is no need to allow the child to go with the (no longer guardian parents) to the US for experimental treatment. See how nicely that rolls up?Report

              • J_A in reply to Damon says:

                Actually, they can.and have.

                That’s bait and switch and you (should) know it. I am trying hard here again because I know you are better than this.

                The UK government does NOT have to authority to stop a person from having any kind of private medical treatment, for themselves, inside or outside the UK (*).

                This fact should not be under discussion. Ever.

                Whether the U.K. government should have the general power to stop people from arranging private medical care for third parties without their specific consent, or the more particular power of stopping parents doing so on behalf of their children is a completely different legal question.

                (*) it has regulations, irrelevant for this discussion, about what happens if you go private and then want to go back to NHS treatment.Report

              • Damon in reply to J_A says:

                Perhaps we’re arguing minute details. The effective result of the gov’t actions is the same. And frankly, I find it monstrous.

                You want to deny add’l care because of finanical constraints? I’m good with it.

                You want to deny care because, in the doctor’s judgement, that’s the best course of action? I’m good with it.

                You want to take my kid away from me because you insist that I don’t have the best interests of my kid at heart? That’s where I draw the line. How dare you.Report

              • Toad in reply to Damon says:

                Yet there are several parents here in the United States, every year who let their children suffer and die from lack of treatment, experimental treatment, quack treatment.

                In the Gard case, the state believes it’s acting in the best interest of the child.

                I’ll admit, I’m uncomfortable ceding that right to the state….but I’m even more uncomfortable with the idea of children suffering and/or dying because their parents couldn’t see reason, are deluded, or otherwise are not making rational decisions. Do I think I’d ever be that parent? (Does anyone?) Of course not!

                On the other hand if I were the kid who just needed a simple transfusion or insulin shots in order to live a healthy life — or a child who’s experienced nothing but pain her entire life — and my parents couldn’t/wouldn’t see the best path for me…I would hope that someone would look out for me.

                This isn’t any easy decision and certainly not black and white.Report

              • Kimmi in reply to Toad says:

                MOST people are deluded, when it comes to dying. It’s worse when it’s a child, of course.

                I’m not saying put this in the care of the State, I’m saying put it in the care of the doctors, who are inured to dying, as they are to prurient interest in nudity.Report

      • Kimmi in reply to fillyjonk says:

        I’d be inclined to listen to parents, IF they were making the argument “But For Science!”
        (Hell, I do know someone who took memory destroying drugs because the doctors said he was going to die. “For Science!”).Report

    • J_A in reply to Damon says:

      This ties to my comments on the “preview” to this post during the weekend. From a legal point of view, this case is principally Charlie vs his parents.

      Damon argues that the guardian is just parroting the doctors because he hasn’t any different information. But the fact is that everybody in this case has the SAME information. The parents do not know anything more than the doctors, in both sides, the guardian, and the judge do. The details of the experimental treatment have been discussed over and over at several levels and in different fora.

      No one, but the parents, believes Charlie has any chance of survival. There seems to be no doubt either that he is suffering and in pain. Because the Gards are moneyed, and have raised even more money, there’s no issue of costs. All that’s been in front of the ethical panels and judges that have seen the case is balancing Charlie’s current and future physical pain vs his chances of survival. No one has found for the parents, yet.

      We have in the USA a very (un)healthy disrespect for experts’ opinions. So a lot of the debate has veered into loving parents who won’t give up vs callous faceless bureaucrats. Charlie seems to get lost in there.Report

      • Damon in reply to J_A says:

        “But the fact is that everybody in this case has the SAME information.” Exactly. And yet, in this system, the NIH went and got a guardian for Charlie, no doubt after deciding to refuse additional care. They choose not to respect the assumption that the parents had the child’s best interest in mind, but wanted to force their own views down the parents through by getting a guardian to “back them up”. Kinda like everyone claiming Terry’s best interest and inserting themselves into the situation when her husband knew what she wanted.

        Now, if you can point out specific examples where the parents took positions clearly hazarding the kid’s health, I’ll listen.Report

        • J_A in reply to Damon says:

          They choose not to respect the assumption that the parents had the child’s best interest in mind, but wanted to force their own views down the parents through by getting a guardian to “back them up”.

          Should be this assumption a trump card? In other words, are we to ALWAYS defer to the parents? If not always, then when are we able to test Assumption that the parents had the child’s best interest in hand. You seem to suggest that in this case the assumption should be assumed and not tested, whereas the legal case was exactly about testing this assumption, and it was found by all that in this specific case the parents were not acting in Charlie’s best interest (see below)

          Now, if you can point out specific examples where the parents took positions clearly hazarding the kid’s health, I’ll listen.

          We are playing definitions here. Is “being alive longer” the only valid definition of Charlie’s health? Under that limited definition you are right, the parents not only did not hazard the kid’s “health” but actually we’re fighting for it.

          If we expand Charlie’s health to include to be rid of pain and suffering for months, undergoing an experimental treatment that has (almost) zero chance of success, and would nevertheless not cure him, but just keep him alive longer, then I would suggest that condemning your child to suffer through an (almost surely) useless treatment is hazarding Charlie’s [expanded concept of] health.Report

          • Damon in reply to J_A says:

            “Should be this assumption a trump card? In other words, are we to ALWAYS defer to the parents?”

            The default should be deference to the parents in this case, baring extenuating circumstances, as it applies to medical care. Now, the NIH is free to come back and say “we’re not going to pay for the treatment you want” for all the reasons gov’t/insurance companies deny coverage currently. But preventing the parents from removing the child from the hospital to seek care elsewhere is beyond the pale.

            If you can demonstrate that the child will be in MORE pain or is currently in pain, and taking him out of the hospital will increase this, I’ll consider modifying my position, but regardless, my deference is always to those who are closest to the patient.Report

    • Aaron David in reply to Damon says:

      “I also wonder: would we learn anything about this condition/treating it from permitting Charlie Gard to have the treatment?”

      This was my thought also. My father has what is called Atypical Alzheimer’s* and receives experimental care. He had a position much like yours (scientist/professor) and absolutely wanted his mind to go to research. This shutting off of information is that can be gained by the possibility of a cure is very short sighted. There is an argument that the child has no informed consent, but we put the parents in that position in many other cases.

      * What he has is most closely described as Alz, but doesn’t manifest itself in all the same ways, making the initial diagnosis difficult.Report

      • Kimmi in reply to Aaron David says:

        I’m much more willing to listen to “We know he’s going to die, but we want to help!”
        (sidenote: are they going to part his body out?)
        It seems a lot more rational than “He’ll get better if we give him this experimental treatment, right???”Report

      • Don Zeko in reply to Aaron David says:

        My understanding is that this is why the Catholic Church supported the British Court’s decision: they see the treatment as using Charlie as an experimental test subject without his consent or any hope of saving his life. (Not being a Catholic, I disagree)Report

        • Marchmaine in reply to Don Zeko says:

          The Pontifical Academy for Life issued a statement in keeping with the Church’s guidance on End-of-Life matters; namely that upon the findings of the courts and doctors, the Gards may in good conscience remove extra-ordinary medical treatment (not including food/water) which would result in Charlie’s death.

          The response did not address directly whether or not Charlie can or cannot be moved for treatment.

          There’s some equivocation around proportional treatment for Charlie (here they really just regurgitated the boilerplate guidelines) and they didn’t really address the question of whether he ought or oughtn’t be released. The Academy was rather soundly chastised for the clumsiness of their boilerplating.

          Charlie likely is at end-of-life… a reasonable application of an experimental treatment, however, is still within the proper purview of his parents. If they had no other options, the Church recognizes that ending the extra-ordinary treatment would be permissible. That’s what the Academy said (or meant to say).Report

          • Kolohe in reply to Marchmaine says:

            And the Pope kinda sorta overuled (or at least undercut) that body’s conclusions a few days ago.Report

            • Marchmaine in reply to Kolohe says:

              Yeah… his statement is something less than clear (heh, we’re used to that by now), but his sentiment, as clarified by his spokesman is that the presumption is always in favor of life… and, there’s a subtle rebuke to the NHS for not allowing Charlie to leave to die elsewhere (with appropriate end-of-life care). The Gesu Bambino (Pontifical) hospital offered to provide alternate hospice care… which the NHS refused.

              At this point they are refusing both paid-for reasonable* treatment, and free hospice care to allow the Gards to exhaust treatment options before ending the extra-ordinary care.

              The NHS is now standing on a pain and suffering argument that is self-admitedly conjectural.

              “Lawyers representing the famous children’s hospital in London told Court of Appeal judges that Charlie Gard’s illness makes it hard for anyone to know if he is pain.”

              Mr Justice Francis told the Family Division of the High Court that docs believed it was not in Charlie’s best interests for treatment to continue, and they wanted to withdraw his artificial ventilator. But he said it was not clear whether Charlie suffers any pain.

              The big unanswered question I have is why the American Neuroscientist working on the treatment hasn’t been flown over to the UK for an emergency consult? He admits that it is possible the treatment wouldn’t work for Charlie, but that he can’t say for sure without examining him. Possibly he can’t be spared from his US operations, or possibly the examination could only be undertaken at his US facilities, or possibly the NHS won’t grant him access? I don’t know, and I couldn’t google an answer to that.

              At this point Charlie is 11-months old.

              *reasonable in the narrow sense outlined in the Oxford piece in that it is a legitimate scientific medical treatment, even if potentially a low likelihood of success.Report

  4. Saul Degraw says:

    I remember when it was a thing for liberals (at least of the Vox policy wonk crowd) to talk about how most healthcare spending was done during the last two years of life and if we really wanted to control healthcare, we need to control this spending.

    Now that the ACA repeal is a real possibility, I see the tables turn. ACA advocates are talking about how their children came down with cancer or were born with heart defects that require serious monitoring and constant medical treatment and ACA skeptics are talking about the 85 year old who is on a barrage of treatment to extend life by two years.

    This strikes me as interesting. One thing that no one really talks about is how we do have a lot of amazing medical technology and treatment and surgery but it does not come cheap. I have a few friends who gave birth to very premature children. These children are alive and kicking because of medical technology but no one really knows how to make it cheaper. Maybe we should just acknowledge that somethings are always going to be expensive. As to the tweets from the woman whose son was born with a two-chamber heart, the same.

    What I am trying to say is that when it comes to the idea that most money in medicine is spent on someone’s last two years of life might be true but it is also a largely useless fact. Suppose you had two 45 year olds who were diagnosed with the same kind of bone cancer and needed the same kind of treatment plan or an analogous one. They both end up needing 500,000 dollars worth of treatment. One dies at 47 and the other lives to be 85 because the chemo worked this time.

    How do we determine when to stop in the case above?

    As to Gard himself, I see the POV of the British appeals board even though it is counter to the American way of thought.Report

    • Burt Likko in reply to Saul Degraw says:

      A danger to the philosophy that “some thinges are just always going to be expensive” is the really easy step from there to, “so let those who can pay have it and those who cannot make do without.” Maybe we’re good with that result: I say, if so, let that be a conscious choice we make as a culture rather than a default result because we enjoy squabbling with one another so much.Report

      • LeeEsq in reply to Burt Likko says:

        That’s the argument that the people advocating a pure market based healthcare system are making in a sense. Healthcare should go to those that can pay the bills and when it comes clear that they aren’t many of them and prices get transparent, healthcare providers will lower costs to get more money or something.Report

        • DensityDuck in reply to LeeEsq says:

          Or other providers will see the massive profits being made from high-cost healthcare services, and start to offer those services at prices that are just-slightly-less than the established providers, and then those established providers will lower their prices, and so on until the prices hit that optimal level where the overall revenue (market price times the number of people who can pay it) is what’s needed to keep all the current players in business.Report

          • Oscar Gordon in reply to DensityDuck says:

            No! It’s all a race to the bottom with provider pay and quality dropping right along with it because …Report

          • LeeEsq in reply to DensityDuck says:

            There are reasons to doubt this would occur though because of the reluctance of healthcare providers to make pricing transparent and the unequal positioning power. People tend to be very anxious when it comes to healthcare even if you aren’t dealing with a literal life or health issue. There is a power imbalance in healthcare that doesn’t apply to shopping for many other goods and services. The argument about whether we should pursue a free market based healthcare system is whether healthcare is really like any other good or service or whether it has some special attributes that make it unresponsive to normal market forces.Report

            • DensityDuck in reply to LeeEsq says:

              “There are reasons to doubt this would occur though because of the reluctance of healthcare providers to make pricing transparent and the unequal positioning power. ”

              People who think that there should be a market in healthcare recognize this. They also recognize that the reasons for this are due to the weird structure of negotiated compensation that the present non-market system has encouraged.

              Like, I don’t see people complaining about how it’s totally impossible for a person acting on their own to buy a car and the market for cars should be abolished and we need to have single-car-payer, even though pretty much the first thing anyone tells you about buying a car is that you should never ever ever ever ever EVER pay the manufacturer’s sticker price.

              “The argument about whether we should pursue a free market based healthcare system is whether healthcare is really like any other good or service or whether it has some special attributes that make it unresponsive to normal market forces.”

              If I don’t eat food I die. And yet, we don’t have Single Payer for food. We don’t have a giant Government Food Provider that’s responsible for getting food into my face.

              And yes, you can point to SNAP or WIC or various other forms of food assistance, and I reply that those benefits are used at the same food markets everyone else goes to, and they’re charged market prices for what they get there. There isn’t a special SNAP Only Store where everything is a government-defined price but you can only pay with EBT.

              So I’d say we have markets that work despite price inclarity; we have markets that work despite power imbalances (and examples of how government assistance might be involved in the latter). It’s not not possible for this to work.Report

              • Oscar Gordon in reply to DensityDuck says:

                Excepting emergency care. In that particular case, the market approach kinda goes out the window. Ideally we would just treat ED care as a special case and move on, but too many people are using the ED for primary care for that to be practical at this time.Report

              • DensityDuck in reply to Oscar Gordon says:

                “Excepting emergency care…too many people are using the ED for primary care…”

                If people are using the ED for primary care then they aren’t subject to the kind of exigent circumstances that make emergency care impossible to put a price on.

                As for the cost of emergency care, maybe that’s something that insurance could handle. One of those “cataostrophic care” plans that we’re all supposed to hate because something something Republicans.Report

              • Kimmi in reply to DensityDuck says:

                indigent circumstances, on the other hand.Report

              • Oscar Gordon in reply to DensityDuck says:

                Having insurance pay for emergency care is a different topic from the power and information asymmetry that exists during emergency care.

                I should probably shop around for a PCP, or an orthopedic specialist, and get second opinions, and quotes, etc., but if they pull my ass out of yet another tangled wreck of automotive debris, comparative shopping and price list review is out the window. Certainly insurance will haggle after the fact, but I will probably be unable to participate in any practical market-based transactions and decisions.

                And yes, people using ED for primary care should be more aggressively triaged and sent on to a PCP (assuming the local supply for PCPs is adequate).Report

              • Kimmi in reply to Oscar Gordon says:

                I don’t know… OUR nurses around here don’t bitch about using the ED instead of a PCP.
                Our nurses bitch about the indigent using the ED to get 3 hots and a cot, when they don’t need any help at all.Report

              • LeeEsq in reply to DensityDuck says:

                We don’t have single payer for food because everybody knows they need to eat to live. Most people do not go into deep research about the ordinary or extraordinary ailments they might suffer and tend to trust their doctor or doctors on proscribing a course of treatment, especially in an emergency. They don’t look around for the most cost effective chemotherapists. People theoretically can do it and the Vox set was enthusiastic about the insurance exchanges because they wanted people to look, think, and make decisions. Most people including the well-educated do not do this.Report

              • Kimmi in reply to LeeEsq says:

                Oh yee of little faith and less knowledge.
                Would you like to see what people will go without medicine for?
                Would you like to see what people will go without food for?

                Yes, Wall Street cares. How To Make Money while killing your customers. It’s fun, easy, and even For The Greater Good!Report

              • DensityDuck in reply to LeeEsq says:

                “Most people do not go into deep research about the ordinary or extraordinary ailments they might suffer and tend to trust their doctor or doctors on proscribing a course of treatment, especially in an emergency. They don’t look around for the most cost effective chemotherapists.”

                Chemotherapy isn’t something that’s provided on an emergency basis. Pick one metaphor and stick with it.

                And hey, what if one of the reasons people don’t shop around is that they figure they don’t have to?Report

              • Oscar Gordon in reply to DensityDuck says:

                I think I’ve told this before, but when my mom was first biopsied with a malignant growth, the doctor she was recommended toward (by a friend who was an LPN – read: should know better) was a vascular surgeon, who seemed more than happy to excise that tumor. It wasn’t until my parents finally told me what was going on and who they were going to see, that I looked the guy up and realized what was about to happen.

                DD is right, the problem is people don’t feel like they can, or should, advocate for themselves a lot of the time. They just toss themselves into the system and hope for the best. Single payer doesn’t necessarily fix that.

                When my wife was pregnant with Bug, we got a Doula, specifically so we’d have someone to help us navigate the process/system. Perhaps we’d get better results if there were independent advocates out there (i.e. not employed by the hospital or insurance company).Report

              • DensityDuck in reply to Oscar Gordon says:

                It is certainly the case that the healthcare payments system is more complicated than someone not heavily involved with it might think…and that there’s more opportunity for agency by patients than they’re generally told.

                I’d imagine that your doula was worth what you paid her simply in telling you “here’s what the bill will look like, here’s what you need to actually pay, here’s what you should call and complain about so they take it off the bill”.

                I remember a year-long battle over some test payments that was solved simply by changing the ICD-10 code for the diagnosis. Nothing was wrong with the first one–and the second was entirely valid–but the insurance company insisted that there was no way in HELL they were EVER going to pay a DIME for this test(number changes)okay it’s covered 100%, thanks for being an InsuriCare customer!Report

              • Oscar Gordon in reply to DensityDuck says:

                The doula was worth it just to keep the doctors from trying to rush out to make their tee times, and to chase away the overly “helpful” lactation consultants.

                I think we paid her about $1K, but she worked with us for months, getting us resources, staying with us during the birth and for half a day after, interfacing with the hospital staff, etc.

                In a way, she was kind of like an attorney, just someone who can help a person navigate a strange environment.Report

              • fillyjonk in reply to Oscar Gordon says:

                I’ve heard a lot of advice suggesting, “When faced with Big Health Things (or hospitalization), you need an advocate (1) to push for you to get decent treatment, and not be forgotten, and not receive wrong treatment when you’re out of it.

                I find that moderately terrifying as I don’t have anyone nearby at the moment I would feel comfortable asking to be my advocate. Not that they wouldn’t do a good job, but I feel like most of my friends here have enough on their plates already (small children at home, or disabled spouse, or something else) that they can’t take me on as a hobby, too.

                I am hoping there are people that can be paid to do that (and that I have the funds) if I ever wind up in that position, or else I might wind up one of those “Ooopsie!” hospital statistics, I don’t know.

                There does seem to be a cottage industry in this country in telling single people all the horrific ways their lives are going to be shortened because of their failure to couple or procreate…

                (1) usually suggested to be a spouse or adult child or other family member. I’m single, that’s unlikely to change, and having a child is a ship that has sailed. I have a brother but he’s far away and has a family, and my cousins and I were never that close….Report

              • Kimmi in reply to DensityDuck says:

                Markets work fine? Care to tell me that again? Less than a third of Americans have a measly $1000 in the bank.
                Markets work fine if the goal is impoverishing America and then sending them off to debtors prison.

                Which, um, yeah, the goal kinda is. Anyway!Report

      • Saul Degraw in reply to Burt Likko says:

        I agree but I am a bleeding heart liberal who believes in some form of universal care. My take on the whole healthcare debate is that the GOP and Libertarians have a conundrum on their hands. Many of them don’t believe that the government has a role in providing healthcare or access to healthcare. This is all fine and good I suppose but the problem is that it is a radically unpopular idea. Some libertarians can embrace it because they like being outsiders. The GOP cannot. So they end up doing straight up denials of what is happening and saying that their plan will lead to more healthcare and healthcare access even as all the facts say no.

        That being said, even countries with universal health cares work hard to maintain costs. One of my big issues with the proposed and now shelved CA healthcare plan was that it was a unicorn and a pony healthcare plan that ignored all other funding commitments or even how to fund itself outside of wild assumptions.

        I do wonder what happens in the UK or Canada or France or Singapore when a child is born with a two-chamber heart instead of a four-chamber heart.Report

        • North in reply to Saul Degraw says:

          The kid dies.Report

          • gregiank in reply to North says:

            Nope. They get surgery. Anecdata: my son was born with a malformed heart which needed open heart surgery. The hospital ( Children’s Hospital of Philadelphia) also treated kids from countries that didn’t have the same level of cutting edge pediatric open heart surgery and was paid for by their national health plans.Report

          • Saul Degraw in reply to North says:

            Do you have proof?Report

            • North in reply to Saul Degraw says:

              No because we’re talking in general. In some cases the kid dies. In a few cases the kids heart is operable and the kid dies waiting in line or doesn’t and gets the operation (whereas in the US the kid dies if his parents can’t afford it or lives if they can).Report

    • Dark Matter in reply to Saul Degraw says:

      They both end up needing 500,000 dollars worth of treatment. One dies at 47 and the other lives to be 85 because the chemo worked this time. …How do we determine when to stop in the case above?

      At some point the answer is going to be “math”.

      Whether your rationing is via money (Market driven, insurance driven, or Single payer money) or via some gov “we are all equal” agency, at some point society needs to allocate scarce resources and someone is going to die because they don’t get what they need.

      Too many of these lines of thoughts (and almost all of the politician arguments) try to avoid that grim reality.Report

  5. Kazzy says:

    To me… and maybe this is rooted deeply in my priors… I’d want to know what’s best for the child and how “bad” the non-best option(s) are. Is treating him akin to not letting him know about Star Wars and leaving him vulnerable for ridicule at school? Or violent physical abuse?

    As the OP discusses, we may not be able to know.Report

    • Kazzy in reply to Kazzy says:

      To elaborate, I don’t think we should require parents to always do what’s best for their child. That’s not even possible. We can’t even expect that they never do anything harmful. But there are limits to how much harm we should permit parents to do

      With the caveat being how do we define harm?Report

  6. Marchmaine says:

    I suspect that the NHS is primarily making a sort of Solidarity argument, which is why Charlie must be prevented from experimental care.

    I don’t know that an Oxford Blog is the be-all end-all argument, but these are what I take to be the fundamental guiding principles behind the decision:

    First, a ‘reasonable’ view has to be one that is based on, and sensitive to the right kinds of reason. One of the expert witnesses in the original court case commented that “in the United States, provided there is funding, they will try anything.” If the willingness to provide treatment were based purely upon ability to pay and parental request, then that would clearly not be a reasonable view. As a society, we don’t think that parents can impose just any treatment that they like on their child if they can pay for it.

    And, just in case we didn’t get it the first time, they sum up more explicitly:

    Agreement or disagreement about benefits and risks is not the only consideration. Even if there are professionals prepared to provide a treatment, sometimes it cannot be provided because it is not affordable within the public health system.

    So it is an argument about resources… or, perhaps more accurately it is a defense of the resources of the NHS — maybe even a backstop against a “confidence” run on the NHS (as if it were a bank).

    Charlie Gard must die in the system to save the system.

    As Will notes, that particular Solidarity message is… problematic.

    No one, doubts that the end-of-life decision may be reasonable; it is the failure to release that is the problem.Report

    • Kimmi in reply to Marchmaine says:

      This entire debate is VASTLY preferable to America, where, in living memory, the debate would not only be “How do we keep our hospital from closing” but also “how do we sneak murder into the equation, without getting caught”.

      Incentives need to be set very, very carefully.Report

  7. Oscar Gordon says:

    But you’re not helping the government health care cause and considering the anxiety points this issue touches you may be hurting it.

    He says this right after posting about how healthcare advocates have killed vaping along similar lines.Report

  8. Jaybird says:

    Standing. Manila folder stuff.

    Before I can talk about standing in this case, I’m going to have to talk about the Schiavo case.

    And before I talk about the Schiavo case, I’m going to have to talk about gay marriage.

    Back when we were still arguing gay marriage (remember when we were still arguing gay marriage?), the distinction that I always made was between Marriage in the Eyes of God and Marriage in the Eyes of the State.

    The gay marriage argument usually had two sides arguing about marriage and using one word to talk about these two different concepts and jumping between the two all willy-nilly.

    Now, to get deeper into the two concepts, the MES one is really straightforward. I used the term “manila folder stuff”. Legal concept stuff. Bills, mortgages, insurance coverage. Standing. Stuff that required judges, lawyers, and other government functionaries. As things that it is possible to put a finger on, manila folder stuff is easy-peasy.

    MEG, on the other hand, is tougher. For one thing, I can’t claim any special insight into the Mind of God and so seeing things the way He sees them is beyond me. Given a handful of priors that I have about God’s Existence, I tend to assume that anyone who does claim special insight into the Mind of God is fudging a bit. But, okay, fine. Let’s assume a deity. Let’s try to think like He would think. Marriage is a lot of different things involving the creation of a family. It’s the running of a household. It’s not just the stuff like going to the grocery store together and having discussions over which kind of Hamburger Helper to purchase but also mumbling conversations as you’re falling asleep and making breakfast in the morning and talking about pop culture and bickering about politics or sympathizing about the BS that that one co-worker did and how you can’t *BELIEVE* they did that.

    And when someone with a different set of assumptions about the deity came forward and started talking about how Marriage in the Eyes of This Other God involved this other weird set of traits that, seriously, never even OCCURRED to me in my musings and because the Mind of This Other God was this particular way that we should withhold the manila folder stuff from gay couples, that I said something to the effect of “It’s all well and good for you to say that This Other God thinks this way but that’s not sufficient reason to withhold manila folder stuff from these people. Let these people live harmlessly and, come Judgment Day, God Will Know His Own. Personally, assuming a God, I think that his attitudes toward marriage is closer to mine than yours, but that’s because I’m begging the question. Which, of course, your counter-argument is probably going to do if it relies heavily on the God of your assumptions so we’re back to discussing manila folder stuff.”

    And, of course, the case of Obergefell has happened since then and that case, as you know, dealt with manila folder stuff rather than the Thoughts of God or the Thoughts of This Other God.

    Love wins. Or something. Anyway.

    With that established, let me talk about the Schiavo case.

    A truly difficult case. A woman in a vegetative state. The parents saying that they would take their daughter home. The husband saying that his wife would have wanted the plug pulled and he was going to fulfill his wife’s wishes.

    And, of course, this ended up being horrible all around. The Pro-life thing, the Pro-euthanasia folks, the armchair bioethicists… all made one hell of a soup in the middle of one hell of a petri dish.

    On a legal level, one of the clearly resolvable problems seemed to come down to standing. Who had standing to make the call? Well… the husband. That seemed obvious. This case was a manila folder case. Pretty clear cut. If the poor woman had never married, sure. The parents would be the ones who had standing. That marriage license, though, that was a clear transfer of standing to the spouse.

    (insert paragraph here about patriarchy)

    But there was one part of the argument that bothered me the most about the standing thing is that Michael Schiavo was co-habitating with another woman by that point. A woman with whom he had fathered children. Multiple children. I bring this up not in the way we used to say “shacking up” back in my old church in reference to two people living together without benefit of clergy but through the lens of “Marriage in the Eyes of God”.

    Michael Schiavo was, as far as I could tell, Married to this other woman. In the Eyes of God, I mean. His moral claim to have standing was based on his marriage to Terri Schiavo. That’s why he was able to tell the doctors “pull the plug” over the objections of the parents. Because of the clear transfer of standing provided by marriage.

    But he was married to someone else at this point. In the Eyes of God, I mean. Assuming a God.

    On a manila folder level, though, Marriage in the Eyes of God doesn’t enter into it. You open the manila folder. You find the license. Whose name is on the license? Michael’s. Okay. He has standing. Close the manila folder.

    Pull the plug.


    Which *NOW* brings me to this case here.

    Poor Charlie!

    We are now in a situation where the parents are argued to not have standing to take their child to the US and spend their money on some cure that is only recently out of alpha and in beta.

    Do I think that the cure will work? No, it probably won’t.
    Do I think that these resources would be better spent on something else? Absolutely.

    Do I think that the parents have standing to take these resources and spend these resources on this child on a cure that won’t work?

    Transfer of standing from parents to The State and its technocrats, here, is one hell of a precedent to set. It strikes me as being outlandish enough that it is going to harm the argument for “socialized medicine” in the US. I don’t know the British mindset well enough to know whether this case is undercutting the, for lack of a better term, “moral authority” of the system over in England but, if I may beg the question, it strikes me as quite likely that it is.

    I suspect that we, as a society, are eventually going to wish we had more standing.

    Poor Charlie.Report

    • LeeEsq in reply to Jaybird says:

      Wasn’t the thing making the Schiavo case difficult was that Michael Schiavo could not get on with his life and actually marry his long term girlfriend/mistress/mother of his children because Terry was still alive but not divorceable apparently? Michael Schiavo’s life was being held hostage by Terry’s parents.Report

      • Jaybird in reply to LeeEsq says:

        not divorceable

        Do you have anything on that? If this happened in the 1950’s, I *MIGHT* believe that that would have been the case in one of the blueblood Catholic states.

        But Florida? New York was the last state to legalize no fault divorce (in 2010!) and, according to this, Florida became no fault in 1971.Report

        • Kolohe in reply to Jaybird says:

          I’m not certified to give an opinion on this, but I don’t think ‘no fault’ divorce is the same thing as a ‘unilateral’ divorce.Report

          • Jaybird in reply to Kolohe says:

            Neither am *I* certified, but it strikes me as downright unthinkable that divorce would have been denied under those circumstances back when it was then the current year (the 90’s).Report

        • LeeEsq in reply to Jaybird says:

          Even with no fault divorce, there is an assumption that both parties could participate. I have no direct information but I suspect that Terry Schiavo’s state might have made the divorce tricky from the legal perspective. Divorce law has methods to deal with spouses that disappeared but not with spouses we know where they are but can’t participate in the legal proceedings.Report

          • Jaybird in reply to LeeEsq says:

            That’s really messed up.

            The fact that we finally found a set of circumstances that achieved nothing but “Until Death Do Us Part” finality in the current year is really something else.

            I mean, if there were a divorce case that were a, pardon the pun, no-brainer, it’d be this one. He even had doctors!

            That said that only hammers home that, on a manila folder level, Michael Schiavo was Terri Schiavo’s husband.

            It merely points out the atrocious incentives that the divorce laws set up.

            Doesn’t change my intuitions here on the whole MEG/MES distinction I made with the case, though. (Other than noting the horrid incentives.)Report

            • LeeEsq in reply to Jaybird says:

              Matrimonial law is based on statutes more than case law. Judges might have been reluctant to go into really novel territory with no guidelines from the legislature on things like process or representation.Report

              • Marchmaine in reply to LeeEsq says:

                Well counsel I believe you just provided motive and means.

                There were certainly paths for divorce if he wanted them… they start with a guardian for the incapacitated spouse… in this case her Parents (presumptively by order of kin).

                As childless young people, I assumed there would be little or no assets involved… and personally assumed that her parents would certainly exchange her CD collection and dated furniture for guardianship and her life.

                Then I read that Michael Schiavo was awarded judgements of $300k and $750k in 1993 related to his wife’s condition. It turns out that her condition was caused by a Potassium deficiency (and not a car wreck as I had assumed) that the court concluded was exacerbated by her fertility treatments, hence the judgement.

                In a divorce proceeding, her guardians would have a duty to negotiate the distribution of marital assets, including the $1M awarded to the couple ($300k was awarded to Michael for loss of companionship, so perhaps not that?).

                However, if his spouse dies… well then, by law he inherits everything.

                Quite possibly her parents were horrible people and just wanted a divorce so they could go around-the-world-cruising, or maybe they would have spent the money on aggressive treatments, or maybe like the CD’s they would have let the $1M go just to keep their daughter from starving to death. I don’t know. But divorce would have put all of that in play.

                Now, none of this was known to me before today… but the simple question of, “Why didn’t he divorce her” got me wondering…Report

              • Marchmaine in reply to Marchmaine says:

                Oops… I meant to also mention in the second to last paragraph that for all I know Michael Schiavo spent the $1M on medical bills and special treatment for his wife. I have no idea.Report

      • Michael Cain in reply to LeeEsq says:

        Terry’s parents petitioned for divorce on her behalf.Report

    • North in reply to Jaybird says:

      Yeah not a bad analysis.

      I’d add a wrinkle though that JR originally raised previously: Does Charlie have any standing?

      From the parents point of view it’s a pretty strong case. They’ve rustled up the dough to take Charlie off to the US for an experimental treatment. All their state government needs to do is let them carry the kid outta the hospital and onto a plane. Easy peasy.

      From the NHS’s point of view, however, there’s also a pretty strong case. Charlie is in anguish and suffering. Letting his parents do this will extend Charlies anguish and suffering for a considerable amount of time. They’re alleging that what Charlies parents are proposing to do amounts to virtually torture so they don’t want to allow it.

      I mean, if Charlie’s parents were saying “Our Aunt Maurine has a sister of a friend who’s going to sear Charlies limbs with lit cigarettes then pour acid into the wounds to drive his humors out and we’ve got the fifty bucks she’ll charge to do it. Please release our child to us so we can give it a whirl.” We’d not be viewing it the same way. Yet all the medical experts involved seem to agree that the odds of this doing Charlie any good are basically the same in either scenario.

      Now I, being by nature a soulless administrative type, am inclined to say we should stick to manila folder definitions and say “Well you’re Charlie’s guardian so we’re going to permit it” but then I’ve never liked kids much anyhow. I can’t find much will to say the NHS is behaving outrageously either. I mean this boils down to the question as to whether it’s okay for emotionally fragile parents to effectively torture their kid for his remaining days.Report

      • Jaybird in reply to North says:

        I mean this boils down to the question as to whether it’s okay for emotionally fragile parents to effectively torture their kid for his remaining days.

        I think it boils down to the question of whether it’s okay for the government to remove straws from emotionally fragile parents grasping at them.

        This prisoners’ dilemma game is iterated. We’re going to keep playing it tomorrow.Report

        • North in reply to Jaybird says:

          Yeah I’m right there with you. That’s why my inclination is that the government should:
          Firstly: refuse to pay for it.
          Secondly: try and discourage it.
          Thirdly: emphatically resist it.
          Then fourthly in cases where parents persist: Quietly permit it (while still refusing to pay for it).Report

          • Don Zeko in reply to North says:

            Doesn’t this depend upon what “it” is? I don’t think this treatment amounts to child abuse, but we can’t avoid arguing over whether it is or not.Report

            • North in reply to Don Zeko says:

              It does, yes, I’d say what the “Is” is would dictate how long fight is between step three and step four. At some point some politically minded deputy needs to gauge when the public is better served by letting the passionate crazy parents do whatever it is on their own dime. And yes, in some cases the public perhaps is better served by never letting the parents do it.Report

      • Jaybird in reply to North says:

        Does Charlie have standing?


        Hard pass.Report

      • Marchmaine in reply to North says:

        The pain and suffering is conjectural. The hospital and doctors stated in court that they don’t have any idea whether Charlie is in pain.

        In addition to my comments above about the NHS Solidarity position, I think the second position is that they believe that “success” (however slim) with the treatment will yield results that they consider a life not livable. That’s a tough one… we all have friends, family, blog acquaintances who are raising children who’s lives are arguably “not livable”.

        On that score, I think the NHS is more worried that the treatment works.Report

        • North in reply to Marchmaine says:

          I think that’s as conjectural as Charlie’s pain.Report

          • Marchmaine in reply to North says:

            Well, no… that’s what the doctors and hospitals said in the hearings. They don’t know if Charlie is in pain. They don’t know that he’s not… but that’s what we mean by conjecture. I’m seeing a lot of people going with the assumption that he’s in pain… but that’s not an established fact… so we shouldn’t treat it as such.Report

            • Kimmi in reply to Marchmaine says:

              Yes, haven’t been followin this terribly well. Thanks for pointing out what they’ve said, does change things rather radically.Report

            • North in reply to Marchmaine says:

              That’s my point. We don’t know for sure if Charlie is in pain or not and we sure as fish don’t know if the NHS is primarily fretting about NHS Solidarity or secretly worrying the treatment will work.Report

              • Jaybird in reply to North says:

                From what I understand, if the treatment works, it will be henceforth malpractice to withhold the treatment from anyone who might benefit from it.Report

              • North in reply to Jaybird says:

                Really? Is there an article or something about it because that sounds like lunacy.Report

              • Jaybird in reply to North says:

                Not, you know, as official policy. Just, you know, morally.Report

              • North in reply to Jaybird says:

                Ahh well the NHS, and really all socialized medical providers are old hands at doing the “yeah… too expensive” dance for me to think that’d be a major concern.Report

              • Will Truman in reply to North says:

                One of my concerns about the US is that we are not old hands and a lot if the selling on single payer may set up some pretty lofty expectations. Especially given that withholding care is being compared to murder as we speak.

                Not saying it wouldn’t work out. But that’s why I would like to see it field tested in California and/or Montana and Minnesota before a national rollout.Report

              • North in reply to Will Truman says:

                Yes, that’s one of a bajillion problems that single payer would have to tackle if it’s ever instituted but frankly I’m not holding my breath. I expect that the ACA set the terms of the debate in the US and going forward the respective parties are going to end up just screwing around under the hood on that until they get the carrot/stick mix right and until the GOP pulls their heads out of their asses and figures out what on earth they are actually going to do about healthcare policy.Report

              • Kimmi in reply to North says:

                GOP and Democrats have the same health care agenda, when you get right down to it.
                Let all the poor shits die.

                Now, who wants to play on the OTHER side?

                … Seriously. Either we fix global warming, or we have bigger problems than Health Care.Report

              • Oscar Gordon in reply to Will Truman says:

                I’ll tell ya all what, when the VA/Tricare/Healthnet is operating in a manner that is even remotely competent, I’ll feel a lot better about the feds doing single payer.Report

              • Marchmaine in reply to North says:

                Oh, right, I misread your comment… my speculations as to prime motivations are indeed conjecture. I hope you will grant they are at least plausible conjecture, though.Report

              • North in reply to Marchmaine says:

                I’ll meet you half way and say they’re not outlandish or even nonsensical conjecture.Report

              • Marchmaine in reply to North says:

                I’ll take it; its a good day if I can keep my comments in the realms of sensical and landish.Report

              • Kimmi in reply to Marchmaine says:

                It’s a bad day when reality decides to be sensible and landish.Report

              • Marchmaine in reply to Kimmi says:

                Reality can fend for itself; this is all about me.Report

            • Dark Matter in reply to Marchmaine says:

              Depends on whether extreme brain damage counts as “suffering”. And treating whatever was Charlie’s problem wouldn’t have fixed that… and it’s probably unreasonable to expect society to support the (almost literally) brainless.Report

    • Dark Matter in reply to Jaybird says:

      RE: Money & Terry.
      It’s very human to look for a villain here with money as the motive. However as far as I can tell no one behaved as though they cared about the money. I recall looking it up and all the money awarded by the court was spent on lawyers to let Terry die (and/or medical care).

      If either side had been about the money they could have made a deal and let the other keep Terry dead/alive and it would have been MUCH cheaper for everyone. Everyone seems to have been open and honest about what they were doing and why.

      Mike honestly believed his wife would have wanted to die in this situation and for him to walk away and leave her suffering would have been the lowest of betrayals. The parents honestly believed that while there was life there was hope and it was murder to pull that tube.

      Reasonable people can look at clouds and disagree on whether they’re faces or dinosaurs. Terry was a mindless gibbering vegetable. Her parents saw hope and her husband saw pain.

      And yes, while the court cases dragged on Mike moved on and started dating, eventually resulting in what we could reasonably call a wife and children. He could have trivially divorced his “wife” (her parents would have been thrilled), if he was willing to leave her alive and “suffering”.Report

      • Jaybird in reply to Dark Matter says:

        Oh, I never thought it was about money.

        I did think that it was about standing and, of course, I thought that Michael Schiavo had the standing according to the letter of the law. Absolutely. The courts did the right thing.

        And yet… and yet…Report

        • Dark Matter in reply to Jaybird says:

          I’m married. Terry (Terri?) sparked a “talk” between my wife and I. We have a very different relationship than she does with her parents.

          So, no “and yet…”.

          Ignoring that both sets of people were “wrong”, i.e. she wasn’t suffering, and there was no hope, Mike was BY FAR the better judge on “what Terry would have wanted”, even to the point they’d talked about it when some other vegetable made the news.Report

  9. In the Schiavo case, it was the conservatives who wanted the government to inject itself into a family decision. The Florida legislature passed and Jeb Bush signed unlawful bills giving him extraordinary powers to do so, and the right-wing noise machine whipped themselves into a frenzy insisting Bush do whatever was needed to “save” Terri, legal or not.

    When I hear the GOP described as the party of small government, I laugh.Report

  10. My family members all the time say that I am wasting my
    time here at net, except I know I am getting experience all the time by reading such
    nice posts.Report

  11. Mike Cole says:

    I heard the reason why the Courts would not allow the parents to take this precious Baby is because they would not sign of waiver releasing the NHS of all responsibility – is this the truth, and if so – why wasn’t it reported in the media instead of tugging at the whole world’s heart……Report