Right to Try

Charlie Gard's Case Shows Why Government Should Stay Out of End-of-Life Choices

Assisted suicide, experimental medical treatments, and slippery slopes

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Charlie Gard's parents
David Mizoeff/ZUMA Press/Newscom

In California, the government is documenting what happens when citizens can turn to medicine to end their own lives. In the United Kingdom, the government is forcing parents' hands in the case of an infant with a life-ending medical condition. Two news stories about the government's role in end-of-life issues highlight the potential slippery slope where a recognition of individual liberty transforms into a manifestation of official authority and control.

California lawmakers passed right-to-die legislation in 2015. It permits doctors to prescribe life-ending medication to adults with terminal illnesses and likely less than six months to live.

Now that the law is in place, the state is keeping track of who actually decides to end their own lives this way. Its first report, covering June to December of 2016, determined that 111 people committed assisted suicide in this fashion. The vast majority were over the age of 60 and receiving hospice care.

In the United Kingdom, the government is deciding for itself when to pull the plug in a case sparking international news coverage and horrified responses. Charlie Gard, an infant with a serious and rare genetic condition and significant brain damage, is terminally ill. His parents would like to pursue an experimental treatment in the United States. Doctors, granted authority by the British government and their socialized medical system, have told them no. They are ordering that Gard's life support be shut down. The parents turned to the European Court of Human Rights for support and were rebuffed.

Note that this is not a matter where the British government is being asked to bankroll Gard's experimental treatment. The parents themselves have raised the money to bring him to the United States. Rather, doctors and the British government are overruling the parents and deciding that they have the authority to an end the child's life and what they believe to be the child's suffering.

While it seems unlikely that the treatment in the United States would change Gard's tragic fate, this case should nevertheless be seen as a dangerous assertion of authority disguised as mercy.

For libertarians or anybody who supports an individual's right to end his or her own suffering, what's happening in the United Kingdom is an important and useful reminder of why some conservatives are wary about allowing this right. There is a slippery slope here: An individual's right to decide can transform into a government's insistence on making that call for those who aren't in a position to assert themselves. Western governments use their authority to override parents' decision-making in many areas, from schooling to vaccinations. But what's supposed to be a mechanism to shield children (who have little agency) from parental abuse becomes a method for paternalistic intervention.

After all, what Gard's parents are doing is essentially the opposite of what should trigger government intervention. They are not abusing the child. They are doing what parents are supposed to do: everything they can to save him. And they should have the liberty to do so.

It should not be difficult to avoid the slippery slope that transforms voluntary euthanasia into government-sanctioned termination. It's a matter of respecting the choice of the individual or those who are responsible for making those choices. Government intervention should be limited to situations where it can be shown that the private responsible parties are abusing or neglecting the patient, or where there are no private responsible parties.

One other issue worth examining in the Gard case: The authorities have been quick to dismiss this experimental treatment because it probably won't work. They are probably right. But that's not where medicine and science ends. The development of treatment for an illness is an iterative process that includes many, many failures along the way to success.

The fight between Gard's family and the British government resembles the "right to try" movement, which aims to loosen regulations that keep terminally ill people from trying experimental and not fully government-approved treatments. Consider the discovery of how cannabis oils can be used to suppress serious seizures in children with rare forms of epilepsy. The government's war on drugs and politicians' insistence that marijuana cannot possibly serve a health purpose has created real, life-threatening barriers to the development of this treatment.

Unless the government can show Gard's parents to be abusive, dangerous people, it should not have the authority to overrule them. And unless the government can show a person lacks the capacity to make adult choices, it should not get in the way of the choices they make to end their suffering, even if it means ending their own lives. The easiest way to keep authoritarian demands out of end-of-life choices is to limit the government's role in those choices—and in the choices that lead up to those circumstances, like health care options.

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  1. There is a slippery slope here: An individual’s right to decide can transform into a government’s insistence on making that call for those who aren’t in a position to assert themselves.

    So people shouldn’t have choices because those choices could be taken away in the future by government?

    1. So if commenters have the individual right to troll, pretty soon the government will force you to troll.

      Yeh, you’re making all sorts of sense.

      1. It’s why I’m here, a gun to my head every day.

        1. “… a dangerous assertion of authority disguised as mercy.”

          (From the article).

          MeThinks that is the summary phrase… The self-righteousness of socialists and Government Almighty is on full-frontal-nudity-display, for all to see…

          1. I’m making over $7k a month working part time. I kept hearing other people tell me how much money they can make online so I decided to look into it. Well, it was all true and has totally changed my life.

            This is what I do… http://www.onlinecareer10.com

          2. I’m making over $7k a month working part time. I kept hearing other people tell me how much money they can make online so I decided to look into it. Well, it was all true and has totally changed my life.

            This is what I do… http://www.onlinecareer10.com

      2. How am I trolling? Isn’t that the take-away from that paragraph? Be careful begging government for the choice over what to do with your own death because government could come in and force you to die.

    2. IMHO, the real slippery slope, is if government is providing health care, it slips into government deciding what health care may be provided. After all, trade offs will be made by someone. And if the tradeoff is huge expenses for experimental potentially life saving treatments vs. the ability to raise taxes to pay for them, the administrators will often decide against spending the big bucks on treatments that haven’t been proven. And if they decide to spend the big bucks, where will they cut other costs and whose health will be affected?

      And who’s going to take the risks of spending money to develop new treatments?

      Of course, it’s not the government administrators/politicians lives on the line. But when it is, they may decide to do something different, because it isn’t their money they’re spending. That’s socialism.

  2. Governments murder children all the time. They usually do it with bombs or guns, though.

    -jcr

    1. Hey now, that’s different. Often those kids don’t speak English.

      1. Also, they are almost always illegal humans or un-Americans, or both! We only care about “the children” when they are un-born, American, humans…

  3. I feel sorry for the child, but I cannot say I feel sorry for the parents who are most likely a sorry pair of socialists who would otherwise never accept anything else besides socialized medicine. Their grief is this well deserved.

    1. Try as I might, I can’t detect the slightest flaw in your reasoning.

    2. God, i love when people imbue characteristics and opinions in people they don’t know and haven’t expressed such opinions.

      1. Re: Number 7,

        God, i love when people imbue characteristics and opinions in people they don’t know and haven’t expressed such opinions.

        If the parents were against socialized medicine, they would have not troubled themselves with visiting an NHS hospital expecting actual service, no? They would’ve made the effort to travel to the US in the first place. Ergo, they believed in Socialized medicine until the very moment it failed on them. It isn’t as if they were completely unaware.

        1. It’s possible a chunk of brits don’t think about it, to develop a yes/no position, before they end up in the hospital getting their socialized medicine good and hard.

        2. so you;re saying that the first time their kid got sick, it was incumbent upon them to foresee that this illness, whatever it was, would result in them having to travel to the US for treatment and forgo treatment at their local hospital? Yeah, they love socialized medicine and they can see the future.

          I don’t know these people, what they believe or their opinions of sociallized medicine but I feel bad for them, for a variety of reasons, the foremost being that they are going to have to bury their child.I have three older kids and all I ask for is that they outlive me.

        3. If the parents are/were against socialized medicine, they only had the choice of who to vote for, or the had/have the choice (albeit with a lot of associated costs, hassles and likely loss of access to their friends and family) of moving to the US. And of course, there’s the choice of actually spending their own money outside the NHS system, if they’ve any left after paying taxes to support the NHS.

          When dealing with socialist countries (and that goes for government schools in the US as well) it’s usually a very expensive endeavor to work around it. Sometimes, the better option is embarrassing the government to get what you want, and they won’t like it either.

    3. And I’m sure you’re never going to collect on the Social Security or Medicare that you pay taxes into, because if you did, that would make you a gigantic, insensitive hypocrite, wouldn’t it?

  4. “Unless the government can show Gard’s parents to be abusive, dangerous people, it should not have the authority to overrule them.”

    Is there not a slippery slope here though?

  5. The government that can give you everything can take away everything.

  6. Step aside citizen, we know what is best.

    1. Yes, “citizen”, bow to yer bettors!!!

      Scienfoology Song? GAWD = Government Almighty’s Wrath Delivers

      Government loves me, This I know,
      For the Government tells me so,
      Little ones to GAWD belong,
      We are weak, but GAWD is strong!
      Yes, Guv-Mint loves me!
      Yes, Guv-Mint loves me!
      Yes, Guv-Mint loves me!
      My Nannies tell me so!

      GAWD does love me, yes indeed,
      Keeps me safe, and gives me feed,
      Shelters me from bad drugs and weed,
      And gives me all that I might need!
      Yes, Guv-Mint loves me!
      Yes, Guv-Mint loves me!
      Yes, Guv-Mint loves me!
      My Nannies tell me so!

      DEA, CIA, KGB,
      Our protectors, they will be,
      FBI, TSA, and FDA,
      With us, astride us, in every way!
      Yes, Guv-Mint loves me!
      Yes, Guv-Mint loves me!
      Yes, Guv-Mint loves me!
      My Nannies tell me so!

  7. 1. There will be no death panels.
    2. If you like your doctor, you can keep him. Period.
    3. If you like your health plan, you can keep it. Period.

    Seems to be a bit of a theme going on here, no?

    I completely agree with repeal Obamacare. Not so much with the whole replace thing, though. As a crazy wild idea, maybe, just maybe, we could let doctors doctor, and insurance companies insure. Because there actually are two different issues.

  8. You can’t have both legal euthanasia and socialized health care. Because if you do, then health care becomes a zero-sum game: the terminal cancer patient wishing to prolong his life is doing so at the expense of the health care of needy babies. Government will always then pressure the terminally ill to give up their lives for the “greater good” and then we will be well on our way down Shackford’s slippery slope.

    1. And then you reach the U.K.’s elegant equality: Since most would die in your circumstance, the government will not only not try to save you but will intervene to prevent others from trying to save you as well.

  9. A world where you only need 2 types of deodorant is a world where you only need 2 medical procedures. I’m thinking abortion and euthanasia should cover all of the people’s needs.

    1. For the 2nd type, boob jobs.

  10. There is a reason why the European courts ruled they way they did – it’s likely the parent’s choice would prolong the kid’s suffering with no realistic chance of help. The Human Rights Court is acting in the best interest of the kid.

    As for the “parent’s choice” argument: Parents often don’t side with the best interests of their kids when it comes to complex scientific matters (see: Jenny McCarty and the antivaxxers). The parents are acting out of emotion and not reason. Therefore it is good that their is a neutral 3rd party – the European Court Of Human Rights – to protect the kid from the tyranny of his parents poor decision making.

    Someone close needs to sit the parents down, and say “It’s time to say goodbye”.

    Children aren’t property of their parents, but are sovereign human beings with rights that should be protected….including from their parents.

    1. Everyone who sat on the Human Rights Court should be kicked squarely in the groin. Even if it’s VERY likely to prolong the kid’s suffering with no realistic chance for help. It just MIGHT help the child, and the parents are paying for it. Children aren’t property of parents, but they are even LESS the property of the State. Cold, officious, heartless pieces of shit everyone who thinks that way.

      1. “Even if it’s VERY likely to prolong the kid’s suffering with no realistic chance for help.” And you’re calling other people heartless pieces of shit? Wow. You’re fucking nuts.

    2. How can a “sovereign human being” who can’t even express themselves, let alone form a truly rational thought – something psychologists say doesn’t happen until well into one’s twenties – convey their desires for the rights you claim them to have?
      You should think that last sentence through, though you sound like you haven’t reached the level of rational thought, mentioned above.

    3. Well I’m certainly glad that we have you, Czilla, to see through the judgment of those pesky parents and dictate to us all what “the best interest” of the child really is. How ever do you manage such infinite wisdom?

  11. I can’t help but think that, even if the experimental procedure can’t save *this* child’s life, the experience gained might save the next one, or the one after that. The government interferes, and there is a ripple-effect of the detriment to us all.

  12. Meanwhile:
    – [ ] CA report on assisted suicide is incomplete: How many self-administered as promised.
    What is missing in the CA report on assisted suicides?
    So after a year in CA how many self administered the poison as was promised when the concept was marketed? By omitting an ordinary witness all the flaunted safeguards are eviscerated and our choices are ignored and not honored allowing exploitation of us all.
    State Documents in Oregon indicate that 20% of their assisted suicide deaths were bullied by the corporate facilitators forcing the poison. I take exception to the push polls yes 60%, even the religious, favor the concept then 95% change to not-in-favor after they learn how easily the laws can be wrongly administered saying “I’m not for that”. Risking us all,all ages, to be exploited by predatory corporations and predatory new best friends or heirs.
    Read the language of the laws to decern the double speak, omissions and commissions.

  13. But the British authorities assert that they are on the side of individual liberty: that of the child not to be made to suffer. This is a matter of judgment, & their logic is that no set of people (parents) should by mere happenstance of birth be granted sole decision-making power over the child, & that this is better handled by a deliberative process involving persons chosen by non-prejudicial means to have the expertise to judge this. Doesn’t matter who you decide should do it, someone’s going to be forcing hir will on the child, & there’s no non-arbitrary way to balance the judgment of suffering vs. release. Pro-life? What if life’s worse than death? Pro-death? What if death’s not as good as life?

    1. It’s the parents who have responsibility to care for the child, therefore it’s THEIR call, since the child has no agency. If the parents took their child to the ER for treatment, who does the national health care bill? The child? There ARE no “experts” who can judge what this child’s life is worth to either him or the parents who love him. It’s utter hubris for self appointed “experts” to think they can make a life or death decision because they are “non prejudicial” and have some kind of “expertise”.

      1. In other words, when Government Almighty claims that it loves the child more than the parents do, 99.999% of the time, Government Almighty is utterly full of shit!

      2. If the parents took their child to the ER for treatment, who does the national health care bill?

        No one.
        That’s part of this problem, unmentioned.
        Say the experimental treatment in the US works and the child lives beyond what the UK system thinks. Will the parents remain in the US and continue to pay for what will probably be ongoing expenses, or return to England and have their National Health System pick up the tab for whatever follow-up care that may be needed.
        This is the slippery-slope of taxpayer-funded care for all – in the clamoring of everyone else to not cost as much, government will, sometimes decide to deny treatment.
        One has to wonder, however, how this situation would have played out if the child was born of the royal family.

        1. “…how this situation would have played out if the child was born of the royal family.”

          No expense would be spared! Aromatherapy, aura-therapy, space-aliens therapy, unicorns therapy, phrenology-therapy, and many more, all by THE VERY BEST experts of all these fields!

          Y’all recall former Vice President Dick Cheney bypassing the old-age limits for heart transplants in the USA’s version of socialized medicine, right? Same thing would happen here… Different rules for differently-important folks, of course…

    2. Oh, so as long as the state asserts that it is operating in a person’s self interest, then it gets a say in making making people’a choices.

      This logic could be used to remove any right from any person, ever.

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  15. The reason the left made such a big counter-attack over Palin’s death panels was they knew damn well it is the inevitable conclusion. Who else is going to be allowed to decide anything important in a govt-knows-best society?

  16. There’s little use of scientific evidence or reasoning in this article or in many of the ideologically-biased comments that followed. It might be sad, but there is no medical reason to prolong this child’s life by extensive measures when he cannot recover no matter what a quack offers for a large amount of money. This site’s antipathy towards a health care system that works for most of its users far better than what is available in the USA in terms of financial efficiency and medical outcomes is clearly colouring its contributors’ ability to think.

    Parents do not always act in the best interests of their own children. Mine didn’t when they forced religion on to me. Likewise, these parents are not listening to independent people – doctors – who understand their son better than they do. There comes a time when you must let go. Sentimentality is of no benefit in this case.

  17. When I practiced in dependency court I once had a young social worker on the stand who testified as to what “a good parent” should and should not do, and would or would not have done.

    I couldn’t help myself.

    I asked her if she’d ever had children. County counsel objected, I replied that given her testimony it went to credibility and the court allowed the question. She said no. I asked if she’d ever raised a child at all. She said no. So then I asked “aren’t you then in the same position as a vegetarian giving her favorite recipe for beef stew?” That one she couldn’t figure out an answer to.

    For better or worse, my child is mine own. No bureaucrat anywhere has any basis in right or reason to be given the power to tell me what my child-raising decisions should be.

  18. Seems like a sterling example of the predicted “death panel” that we were assured would never happen …

  19. “significant brain damage” AND THAT’S WHERE YOU LOSE ME. These parents aren’t pursuing life saving treatment for the child – they are doing it for themselves which is why they have been over-ruled. When you’re that f*cking selfish you don’t get a vote. Disgusting.

    1. Definitely. Letting the state decide who lives and who dies is totes preferable.

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