Here, I will not discuss the question of parental vs. state authority in life-or-death decisions. I only want to talk about the life-or-death decisions themselves, and I want to challenge the brutally simplistic narrative that there are two sides: People who want to treat Charlie further, who are good, and people who want to withdraw Charlie’s life support, who are bad.
It’s not so simple.
Read the rest of my latest for The Catholic Weekly.
Photo: U.S. Air Force photo/Staff Sgt. Bennie J. Davis III
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Yes it’s obviously a murder, you can read our report here : https://comitecedif.wordpress.com/2017/09/06/the-charlie-gard-case-socialism-maturing-to-open-dictatorship/
A separate thought, it bothers me a little bit that this story is able to be seen as “not so simple” but when US healthcare policy discussions come up “people are going to die” and it’s obviously republicans fault. Wait. A . Minute. Really? Seems like maybe there is a bit more to it. Perhaps it’s a bit more complex? Perhaps republicans are not “angels of death” either. Just a thought.
We may not be required to persue extraordinary care but neither are we required to forgo pursuing it ; that decision belongs to the parents after they have been properly informed by competent doctors. If the parents decide they want to take the child to the US the state and hospitals shouldn’t impose a stranglehold on them.
I understand your points. I remember reading Andrew Solomon’s ‘Far From The Tree’ (an interesting book, despite some dodgy views expressed) and being struck by how insensitive some doctors were when explaining to parents that their child had serious health problems. I think that this can partly be explained by the difference in perspective – what is a shattering catastrophe for a family or individual is often all in a day’s work for doctors. What might seem peevish and vindictive could be simple exasperation – the right course of action seems blindingly obvious to them so it feels frustrating when family members don’t agree.
I therefore do agree completely that it is important for doctors to be empathetic and avoid the appearance of heavy-handedness – sometimes (and perhaps in the case of refusing to allow the parents to take Charlie home) perhaps all is needed is to explain their reasons in a clear but non-condescending manner. Cases like Charlie’s, however we feel about the outcome, are a reminder as to why emotions as well as reason are important – people aren’t computers programmed to act in the most logical and rational way.
Perhaps. But unless you’ve dealt with a very serious illness firsthand, you might have an exaggerated idea about how certain many diagnoses and treatments are. The fact is, a lot of the time, doctors are flying by the seat of their pants, but it’s a rare doctor who will admit that.
My husband would be dead if it weren’t for modern medicine in general, and chemo and radiation in particular. On the other hand, if we’d followed our gut instinct instead of the doctors’ judgment about how far to go with treatment and when to stop, he would be in far better health than he is today, would have avoided a huge amount of pain, both temporary and chronic, and would likely have a much better life expectancy than he does, having followed their advice. (Not to mention the money wasted. . . ) Such situations are really, truly, not at all uncommon. Once you get past first-line treatment, which is often fairly clear, what’s best to do gets murky very fast.
And our experience was that doctors don’t like to admit it. Of the dozens of doctors we dealt with, it was a tiny minority who did not take umbrage at even being asked to explain their recommendation and its reasons, let alone tolerate our seeking a second opinion. I’m afraid that’s a bit of an occupational hazard for doctors in general (and don’t even get me started on surgeons in particular!)
I would never argue that the medical profession were flawless (and I am sorry to hear about your situation). My main concern in discussing this issue is addressing the perception which seems to be perpetuated in some circles that this is a simplistic Hollywoodesque fable about saintly parents pitted against callous, proto-Nazi doctors who can’t wait to murder their baby, when the reality is much more complex. Matt Walsh, for example, used this case as an argument against ‘socialised medicine’, and described those who took the decision variously as ‘insane’, ‘demented’ and ‘barbaric’, while barely acknowledging that the condition is terminal – that’s not a balanced picture of what is actually going on, nor do I think it a fair description of public healthcare – I’m British, so while I’m happy to concede that that NHS is by no means perfect, I am still grateful to have access to (sort of) free healthcare.
I totally agree about all you say in that comment. . . but I still think the presumption should be much more strongly in favor of parents, so that when we’re talking about such a gray area, they should retain control. I’m actually Canadian, not American, so I know socialized medicine is not sinister in the sense of Nazi death-camps (although by the same token, I also know how inefficient and ineffective it often is. . . )
And I can’t help wondering whether the extent to which you in the U.K. have surrendered family and individual rights to the state and its “experts” – such that you’re comfortable assuming the state must mean well and can’t be doing any harm taking a 10-month-old from admittedly loving, stable parents – might explain the incredibly rapid disintegration of family and culture in the U.K. in the last half-century. At least from this side of the Atlantic, it kind of looks like you guys are so habituated to the rule of bureaucrats that you’ve stopped seeing it for what it is.
My ultimate feelings about it were actually determined by a family member who worked in healthcare for decades, and who stated right off the bat when I asked for their opinion that the decision was unquestionably the correct one – it’s the doctors I’m really siding with here, not the state.
I’m not sure that people here are as trusting in the state as your comment suggests – moaning about our politicians is a national sport (as in any country) and a big reason why many voted Brexit was a wish not to be run by EU bureaucrats. I don’t know much about Canadian healthcare, but I agree socialised medicine can be inefficient and overstretched. Not sure how Canadians see it, but over here in the UK we have something of an attitude that ‘American healthcare leaves people to die if they don’t have the proper insurance!’ – which I’m sure is just as simplistic as Matt Walsh’s apparent belief that state-funded healthcare means the government gets to dictate every aspect of someone’s treatment.
I apologize in advance for any spelling mistakes: English is not my native language.
I think there’s a pitfall here, that is, equating ventilation to a “medical treatment”. Oxygen is no more of a therapy than nutrition or hydration are, even when it has to be supplied artificially. Even the healthiest person on Earth would die for lack of oxygen. Food, drink and air are what makes any human life possible regardless of health conditions, so their administration can never be an “extraordinary or disproportionate” treatment (as per the Evangelium Vitae quote). Even less can it be considered as an “aggressive treatment”.
If Charlie’s ventilator is disconnected, he won’t die of his illness. He will die of asphyxiation. Therefore, his death in this case would have all the characteristics of passive euthanasia.
It may have to come to palliative care for Charlie, if the experimental therapy options are found to be ineffective or otherwise inapplicable. But palliative care cannot exclude basic human care, which includes air supply as well as nutrition and hydration. Until he dies, Charlie has a right to be fed, hydrated and oxygenated. All other treatment options must be evaluated, accepted or discarded according to Charlie’s specific situation. But this is the basis that can’t be touched.
The problem with this line of argument is that you can use it to define any and all medical care, however extraordinary, as ordinary, or even as you suggest, as not medical care at all. Yes, our organs and cells need oxygen just as much as our whole body needs food and water. In fact, they need any number of substances to function at all. But that doesn’t make any and every medical treatment that helps deliver those substances to cells and organs that, for whatever reason, aren’t getting them naturally, ordinary care like food and water. (Actually, for similar reasons, I’m not sure it’s quite right to define even nutrition and hydration as ordinary care, regardless of how they’re delivered.)
The entire point of this case is that the state are become arbiters of death in this situation. Not the fact that poor Charlie will surely die – as we all will – but that the state is stripping his parents of their legal rights as his guardians and protectors, violating their explicit wishes for their son’s treatment, and presuming to know better than his family what his best interests are.
All that considered, you close this piece with a fairly ironic line: ” and when the state appoints itself the arbiter of life and death, there is good reason to fear. We do well to be on guard.”
If that’s the entire point of this case, Jenny, it’s strange that so many Catholics are using the words “murder,” “euthanasia,” and “eugenics.” Are you comfortable with the use of these words to describe Charlie’s case?
Absolutely – understandably emotions can run high over cases like this, but I’m uncomfortable with people using that kind of language with respect to Charlie. I saw a pro-life blogger whose opinions I normally respect accuse those who disagreed with her of ‘supporting a baby’s death’, wanting someone else’s child to die and sharing the same mindset as supporters of abortion and euthanasia. Not only is this an offensive misrepresentation of the actual attitudes of those who felt it was time to let nature take its course, I imagine that, whilst it undoubtedly was not her intention, such words would be incredibly hurtful to those who have agreed to withdraw treatment in similar situations.
I thought Simcha’s piece made clear that she does NOT believe it’s right that the state has seized control of the child, rather than leaving it to the parents. That’s a separate question from whether it’s murder to let nature take its course at this point.
For instance, I don’t think it is euthanasia, but I do think removing Charlie from his parents’ guardianship was egregiously wrong Whether their wish to continue treatment is the best decision or not is a pretty gray area, and certainly not grounds for terminating parental rights, even if the doctors are right.
It’s particularly horrifying if it’s true – as I read in one story – that the parents are not even being permitted to take him home to die in peace with his own family. But still, that doesn’t change the bioethical issue Simcha is addressing here.
I do understand concerns about the hospital acting against his parents’ wishes. However, in the UK, it’s normal practice in situations like this when doctors and patients simply cannot agree to refer the matter to the courts. Sometimes they decide in favour of the patient, in this case, it’s with the doctors. That’s all. It’s not a sinister conspiracy to strip parents of any say in their child’s treatment the moment they enter hospital, more a case of calling in a neutral third party to resolve an intractable dispute.
I do sympathise with concerns that this could involve yet further state intrusion into deeply private family matters, but insisting on finding in favour of the parents against expert opinion, could also set worrying precedents – potentially it could lead to a child being denied life-saving treatment or a doctor forced into carrying out procedures they are convinced are against the patient’s interest because of the sincere but mistaken convictions of desperate parents.
Okay, maybe it’s not a “sinister conspiracy” but it might still be a sinister general practice to strip parents of their rights. The courts’ deciding would be one thing in very clear-cut cases like refusing to let a child have a necessary blood transfusion or chemo that has a very high rate of success to cure a fatal cancer. But it seems bizarre and – yes – I’d say sinister, in fact, to override the parents’ wishes in a matter that involves as much of a subjective judgment call as the case we’re talking about.
As for the issue of his parents not being allowed to bring him home to die, my initial response was to feel that this was cruel and unreasonable. However, it may well be the case that, in order to keep him as comfortable as possible after removing life-support, it would be necessary to keep him in hospital under medical supervision. As I’ve been saying before, while doctors are of course not infallible, these kinds of decisions are not made lightly or out of sadism or a God complex.
I do sympathise with your concerns – that was my intial response to the case. However, after some reflection, and discussing the matter with people who work in healthcare, I changed my mind. The overwhelming evidence is that the treatment will be of no benefit and the matter has been considered carefully. Personally, while I certainly don’t think the parents’ wishes in cases like this should be ignored, I feel that going too far down the ‘let the family have the last day’ route risks a perception of patients as primarily consumers, where the doctors’ sole duty is to do whatever they ask, even against their own judgement, which is far more informed than that of most patients.
No, probably not out of sadism or a God complex, but do doctors often make decisions lightly, and with an arrogance that makes them disinclined to listen to patients, or reassess their first snap judgment when questioned or even simply asked for a few minutes of explanation? And do they often respond peevishly and vindictively when patients have the nerve to do anything but bow down to them? I fear I’ve spent enough time in hospitals in critical life-and-death situations (cancer, specifically) to know that very, very often, doctors do indeed make decisions and react that way.
I also know from experience that pain management is often neglected with babies like this one (the hospital refused to give a friend’s similarly disabled and terminally ill child even so much as a baby Advil or Tylenol though he was screaming in pain, because they didn’t believe he could feel pain based on his neurology), so I’m also a bit skeptical that refusing to let him die at home is about pain management so much as its about control and defending their turf from uppity, rebellious lay people.
The reporting isn’t very clear about what the parents want regarding taking Charlie home. If they’re willing to discontinue ventilator support and are only asking that it be done at home, then I agree that it would be cruel to deny them that assuming it’s technically feasible. On the other hand, if they’re asking the hospital to provide continued ventilator support at home, I think it’s within the hospital’s rights to refuse.
Though the issue of who has decision making authority in this case is a bioethical issue. From the National Catholic Bioethics Center:
“The decision to discontinue such interventions ultimately lies with the patient—or in this case with the parents as the child’s proxy—as noted in the Ethical and Religious Directives for Catholic Health Care Services of the US Conference of Catholic Bishops (http://www.usccb.org/about/doctrine/ethical-and-religious-directives/): “Proportionate means are those that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden” (directive 56). With no evidence that the continuing interventions are physically doing harm or causing significant pain, the judgment of the patient or the patient’s proxy should be followed, rather than that of a court or hospital or insurance company.”
Source:
https://www.ncbcenter.org/resources/news/statement-national-catholic-bioethics-center-charlie-gard-case/
It’s refreshing to read something clearheaded on this very sad case after the understandably emotive accusations that the big, scary doctors and courts wish to kill a sick, disabled child (at times glossing over the fact that he is not merely ill, but only barely alive due to ventilation, tube-feeding and expert medical treatment).
I am not a healthworker myself, but I’m concerned by the number of people who insist that ‘doctors don’t know everything’, or not-so-subtly imply they are Mengeles on the make gleefully planning to toast the switching off of Charlie’s life-support with cocktails made from his parents’ tears. Yes, doctors are human, some make mistakes, some really are just heartless bastards, but most are responsible, caring professionals who funnily enough don’t actually want their patients to die. I also trust the judgement of someone with years of expertise over a non-medic with an internet connection and an agenda. Of course doctors are sometimes proven wrong, but I suspect the media skews perceptions of this – ‘Doctor said experimental treatment wouldn’t work and it didn’t’ doesn’t exactly make for a thrilling headline.
All of which, apart from the many other upsetting aspects of this case, leads me to wonder whether this will result in a growing lack of respect for experts, and people from non-medical backgrounds insisting they know best because their second cousin’s wife’s niece had such-and-such an unusual treatment for a completely different illness and got better, ergo the same will work for me, with the unintended consequence that parents will be less likely to follow sensible medical advice when making vital decisions on behalf of a sick child.
Tanya Cleary, I think about your mom every day and what you must have gone through and are still going through. Your mom was so full of life and always had a great big smile, she loved to laugh, she loved adventure, and she loved her family. I know that in those 5 weeks when she was in pain she was also full of joy knowing where she would spend eternity. There will always be family members who are in denial, “not MY mom, this isn’t happening to MY mom”!! I was in complete denial for a year after losing my mom and I believe it was because she wasn’t sick and it was unexpected. Yes, my mom was 79 years old but like your mom, she loved adventure and was always ready to “go” whenever and wherever one of her children invited her to go. Like your mom, my mom knew where she would spend eternity and she wasn’t afraid to leave this earth. Keep up the great work taking care of Bob, I know he loves you and your family with all of his heart and I know that he…and your mom….appreciate everything you’re doing for, and with, him <3
Thanks for this – it needs to be said. If we pro-lifers insist that every possible treatment must be tried, extending life as long as possible at any cost, to the bitter end, we’re actually adding fuel to the fire of the euthanasia movement. People rightly perceive that the long medicalized misery in which many people die today is inhuman.
It’s also worth noting that many studies have found that switching focus from life extension to palliative care for terminal patients often extends life, as well as improving it, while last-ditch treatments frequently don’t extend life and can even shorten it, besides destroying the person’s final days.