Some of you may recall the story of Charlie Gard, the infant in the UK that the NHS was seeking to withdraw life support to (allowing him to die, basically) against the wishes of his parents. The conclusion of the story was determined last week, when the parents lost their final appeal.
And after losing legal battles in the UK, Charlie’s parents were hoping judges in Strasbourg, France, would come to their aid.
But on Tuesday afternoon, the ECHR rejected a last-ditch plea and their ‘final’ decision means the baby’s life support machine will be switched off.
The ECHR announced the application to the court by the parents was ‘inadmissible’ and added that their decision was ‘final’.
Mr Gard and Miss Yates have yet to comment on today’s decision, however their Twitter account ‘Charlie’s fight’, retweeted a number of messages.
One said: ‘The #CharlieGard case is terrible. Shame on the UK judges allowing him to die, shameful, terrible decision.’
In typical fashion, the debate in the US has fallen almost entirely into the framework of our own. It provides flashbacks to Sarah Palin talking about death panels, except in this case it is quite literally true. Back then, as now, the other side argued that death panels could abstractly be justified in that rationing is inevitable in any system, it’s just that the government would have a more just system of deciding who is and is not afforded care than the markets do. Conservatives immediately pounced on the Gard case as an example of what happens with single payer: The government makes all of the decisions. Many liberals, on the other hand, have taken to defending it as a more just decision-making mechanism than we have in the US where such determinations are made on the basis of pocketbook girth.
Notably, however, this isn’t directly about government versus private health care at all. The above debate is about rationing. That would make it pertinent to the Gard case if the NHS were simply saying “We don’t want to pay for this.” Everybody know that insurance companies in the US say that all the time, and even Medicare and Medicaid are known to from time to time. That’s not what this case is about, though. Money is – ostensibly – not the issue. The case does bring to light a handful of related issues, however, that will seem familiar to Americans: Conscientious objection, parental autonomy, and right-to-die.
In the conscientious objection debate, each side lines up opposite the one we might otherwise expect. One of the arguments the hospital is making is that it would be immoral for them to take part on anything but withholding care. Charlie’s case is hopeless, they contend, and death is the way to end the suffering. As physicians they have a Hippocratic Oath and all that. It would be improper for the government to direct them otherwise, no matter what their working relationship with the government. Sound familiar at all?
In the US, this is more-or-less a provider’s right, at the moment. At least, until you get to emergency services and certain types of reproductive care. Even in the latter case, physicians can presently refuse to perform abortions just about anywhere and refuse to prescribe birth control in most of the country. What they can’t generally do, however is try to obstruct care. A pharmacist is not supposed to be able to rip up a prescription, for example. They cannot represent the unborn child in abortion court. They are, in fact, supposed to be willing to refer patients to someone who will do what they won’t do. That is, more or less, the deal that has been struck. The providers in the Gard case, though, are actively seeking to obstruct care.
The other two issues line up on familiar sides. As a general rule, people like the government intervening when they think parents are being stupid and don’t want them intervening otherwise, but the postures in recent years have involved the left favoring more government intervention and the right favoring less. The assumptions tend to be that the government is going to stop bad rightward parents from doing things leftwards consider bad, and a lot of the policy views flow from that. This fits comfortably into the dynamic that the American Left should defend the government here, and the right should defend the family. True to form, I’ve seen a lot of references to Christian Scientist parents withholding basic lifesaving care on their children and suggestions that we may be too deferential to parents on these matters. (Also, vaccines of course.)
The last issue is euthanasia and right-to-die and what to do when you don’t know what a patient would want. It’s not that difficult to look at this case and being reminded a little bit of Terri Schiavo, the Florida woman in a persistent vegetative state. Conservatives objected to her (allegedly estranged) husband pulling the plug, while liberals argued that she essentially had a life that wasn’t worth living and death was a mercy. Another case is that of Marlise Muñoz, a Texas woman who was comatose and pregnant (which she, apparently, never knew). Relatives fought to take her off life support, while the state sought to prevent it until the child was born and sought to prevent transfer to a facility that would carry out the wishes of her family, just as the NHS is doing. The sides shift on state vs family and attempted care vs the the withholding and prevention of attempted care, while the constant is whether living unconsciously or with a low quality-of-life is a burden.
Now, in this case, the NHS is not arguing that Charlie is in a persistent vegetative state, but that he is actively in pain. Therefore, withholding care is legitimately in his best interest, and keeping him alive isn’t a positive or neutral act but possibly even a hostile one. The doctors can see this clearly, the parents can’t, and that’s that. If we know this true, it’s a compelling argument. Do we? How sure are we? And how sure are we that while Charlie’s parents’ views are skewed by their love, that society’s isn’t skewed by the need to believe that such decisions aren’t just okay but justified? How much would we accept this logic if it were being promoted by insurance companies? How dismissive would we be of doctors that believe that they might be able to do something, if not for Charlie than for somebody else further down the line?
At the same time, in my wife’s experience, the dying are usually more ready to go than their families are to let them go. Which lends some credence to the perspective of the doctors. Does that change when we’re talking about a baby? The most frequent cases are those with elderly patients or at least middle aged patience who have lived a life. Does a baby having just been born alter that dynamic, and if so in which direction?
These subjects have been discussed, but none so much as the question of government vs private health care. And I carefully hedge above with words like “directly” because they are at least arguably in play. In 2005, the NHS was put on notice that “right to life” had potentially troublesome economic consequences:
He said that under current GMC guidelines to doctors, a competent patient was entitled to decide between the treatment options offered to him by his doctor.
However, doctors are not required to give treatment that they believe is not clinically appropriate, or which cannot be offered for other reasons, such as the costs, within the NHS.
Mr Justice Munby ruled in May last year that if a patient is competent, or has made a request before becoming incompetent, doctors have a duty to provide ANH.
Mr Sales said this ruling had led to a confusion between the roles of doctor and patient – the decision about treatment was for the doctor, not the patient.
There was also concern that patients would request treatments no matter how inappropriate or costly.
Mr Burke, of Lancaster, who suffers from cerebellar ataxia, was in court in his wheelchair yesterday listening to the arguments for overturning the ruling which he believes would save him from death by starvation or thirst if ANH is withdrawn after he loses the ability to communicate.
It’s possible that what we are seeing now is the consequence of simply incorporating that thought process into our decision-making. If we have to mind our spending, maybe it’s for the best that we do. Not just for our sake, but for theirs. It helps avoid some tough decisions. The thing about that logic – whether true or not – is that if it applies when the state is footing the bill, it also applies when it doesn’t. As the government becomes more financially involved in our healthcare, it’s not inconceivable that there would be a philosophical shift as well. And beyond that, things get complicated when and if he returns to the UK and the NHS becomes responsible for him. If the treatment were to work. But, of course, they insist over and over again that it won’t.
It is certainly arguable that the courts are doing the best they can under the circumstances. They are, at the very least, hindered by existing law whatever their own views. But the law and the courts may both also be correctly (or correctly applied) here. We don’t really know what Charlie is going through, though, and so our interpretations are going to lean heavily on our priors. That’s the nature of the mind. This includes myself, and the discomfort I have with this outcome that is probably evident between the lines of this piece. Discussing the Muñoz case with my wife presented a similar picture, where almost all of the What Ifs corresponded with where we land on the issue even as we agree to the facts of the cases. Which itself is not always a given.
This doesn’t appear to be causing nearly the ruckus in the UK as it is in the US and elsewhere. They tend to support physician-assisted suicide and trust the courts and experts to make the determination for someone incapable of making it for themselves. They are also less deferential to families than we are and in family law circles notoriously willing to let the courts intervene in all sorts of affairs (whatever my complaints about American CPS, the biggest defense I have is “At least we aren’t Britain.)”. It seems unlikely that this is unrelated to that.
The American people have come around on physician-assisted suicide, and perhaps also on the idea of government-managed health care. On the other hand, we also have a more-care-is-better-care bias, and in addition there was a reason that Death Panels became a rallying cry. People may not trust insurance companies to make decisions for us, but they don’t entirely trust the government either. If Republicans can turn this sort of thing into an image of what single payer might look like, that could end up being a real problem.
And unnecessarily so, since it mostly involves other issues. That being the case, I would recommend caution to people inclined to defend this outcome. First, make sure to recognize that it’s not a necessary product of single payer. If you really want to defend this on its ideological merits, go ahead and do so. But you’re not helping the government health care cause and considering the anxiety points this issue touches you may be hurting it.