Forcible “euthanasia”: the ECtHR´s Charlie Gard Decision

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When – first in the Netherlands, and later in other countries such as Belgium and Luxembourg – laws were adopted to legalize euthanasia, the selling argument was that this was a decisive step forward in order to ensure everyone’s self-determination. The ECtHR’s recent decision in the case of Gard and Others v. the United Kingdom reveals quite a different reality.

The decision is lengthy and contains a lot of medical terminology, but the underlying facts are simple: a child suffers from a medical condition that the treating doctors qualify as terminal, and for which no recognized treatment exists. Not only for argument’s sake, but also because we really have no reason to believe otherwise, let us assume that that assessment is correct and has been made by experts lege artis. Yet the child’s parents place their desperate last hope in an experimental treatment, which has so far never been tested on human beings (and, to believe what is noted in the ECtHR Decision, not even on animals). That treatment would have to be carried out, either in the UK or the US, by a leading researcher and expert on this kind of therapy, who has declared his willingness to administer it even though he qualifies the chances of success as “theoretical” and, on another occasion, as “unlikely”.

Given the unlikelihood of success, the treating doctors do not lend their support to the new therapy being applied to the child, but instead have filed an application to the competent Court, requesting authorization for life-sustaining treatment (artificial ventilation) to be withdrawn, so that the child might die. The Court granted that authorization. The desperate parents, who (quite bizarrely) were not considered to be the child’s natural representatives in this case, appealed this decision and fought their way up to the UK Supreme Court, but lost in all instances. They then filed an application with the ECtHR, but again remained unsuccessful. The outcome of all these decisions is that all involved law courts, as well as the guardian who had been appointed by the UK Court to supplant the parents in representing the child, are in agreement that it is “in the best interest” of their child not to undergo any further treatment, but to be euthanized.

It appears that in all these decisions a remarkable amount of words is spent on proving a point that nobody has seriously disputed: that “the best interest of the child” should be the paramount consideration. But the parents have never argued that their own interests should prevail over those of the child: this is simply a non-issue. The notion of a “conflict of interest” (see § 67 of the ECtHR’s decision) is apparently misconstrued. It is absurd, and indeed defamatory, to insinuate that the parents in this case are pursuing anything else but what they believe to be in their child’s best interest. They may hold a different view on what this interest comprises, but there is no reason to question their good faith.

Also, there is no dispute on who possesses the better medical expertise. Nobody doubts that the doctors know better than the parents which therapies are, or are not, likely to help. Besides, there appears to be an understanding shared by everyone involved, including the parents, that the chances for the experimental (“nucleoside”) therapy to save the child’s life are, at best, very faint. But the dispute in this case is not about which therapy should be applied – it is about whether any therapy should be applied at all. Even more than that, it is about whether the life-sustaining treatment, which is itself not a therapy but simple care-giving, should be ended.

In short, this is in fact a euthanasia case.

Euthanasia is not a therapy. It is a lifestyle choice. As such, it is contingent on certain moral and philosophical convictions that some people may have, but which others don’t share. Is it a choice that a law court, or a court-appointed guardian, are allowed to impose on someone?

Supporters of liberal euthanasia laws have always pitched euthanasia as a supreme form of self-determination. But this pre-supposes that euthanasia will take place only if the person to be euthanized has expressed a clear and determinate wish to die. It must be a will that is unambiguously expressed by the person itself, not by anyone else. But what has happened in the Charlie Gard case? Very obviously, the child itself has not expressed any will – it is unable to do so, given that it is less than one year old. His parents, if this is of any relevance, have expressed their opposition.

The ECtHR’s landmark case on euthanasia until now was Lambert and Others v. France, which is quoted extensively in the Charlie Gard Decision. The Lambert case was about a man who had fallen into a coma following a motorcycle accident, and whose close relatives were quarrelling whether the life-sustaining treatment should be continued or not. Like in the Gard case, the ECtHR decided that it shouldn’t. But the difference is that in the Lambert case there were claims according which Vincent Lambert, prior to his accident, had allegedly stated that in the (then hypothetical) case of him becoming permanently dependent on intensive care he would prefer to die rather than being kept alive. The Lambert Decision remains highly controversial until today, given that the alleged statements of Vincent Lambert, which some critics doubted he had ever made, provided only a very weak argument for assuming that he actually wanted to be killed. But at least there were allegations, however spurious, that such an statement had been made, which offered some kind of justification, if only a weak one, for claiming that euthanasia was what he wanted.

In the Gard case, by contrast, there is absolutely no claim at all that Charlie, who at the time of writing this is not yet one year old, has ever expressed such a desire. His parents, whom conventional wisdom would suppose to be best placed to speak for him, are clearly opposed to him being euthanized. What is happening here is that the doctors at the hospital, the guardian who has been appointed by the law court, and finally the judges in the UK and at the ECtHR make their decisions on the basis of pure presumptions, substituting their own moral and philosophical opinions for those allegedly held by Charlie: it is in his best interest to be left to die rather than undergo a therapy that in all likelihood will remain unsuccessful. (An interesting question here: how can it be inferred that an 11-months-old child has opinions that differ from those held by the persons whose natural right is to educate him? Is he already so emancipated from them? Is it implied that their education is in fact a dangerous manipulation which would cause him to have different opinions than he “naturally” would have?)

But although the ECtHR Decision makes abundant, if not outright repetitive, references to what it alleges to be “the child’s best interest”, it never comes out quite clearly who made determination and on which basis. No doubt, the experimental therapy that Charlie’s parents want for their child will very likely remain ineffective – there is no reason to doubt this. Yet conventional wisdom would hold that a therapy with a very low likelihood of success is ceteris paribus still better than certain death. The ECtHR Decision gives no hint as to why that should be different in Charlie’s case.

One is thus left to guess. Perhaps the doctors or the guardian believe that the therapy would cause immense pain and suffering to Charlie, and consider that this certain suffering outweighs his uncertain chances of being healed? Or perhaps what they really fear is not that that the therapy would be unsuccessful, but that it would be successful – with the result that Charlie, due to the damage he has already suffered, would be condemned to live a (potentially long) life as a handicapped person in a wheelchair? It never comes out quite clearly. But what does come out clearly even for someone who does not have the same medical expertise as the doctors who believe that Charlie should be euthanized is this value judgment: freedom from suffering is valued higher than life.

This is a very debatable world view, and certainly one that is not shared by everyone. On the basis of which authority can the UK judiciary, or the ECtHR, impose it on Charlie Gard and his parents?

What is striking about this case is that not even an argument is provided. Instead, the ECtHR reduces the “child’s best interest” to a merely formal requirement: the UK court has appointed an expert to be Charlie’s guardian, and he has decided that Charlie, if he could be asked, would want to die. So everything is in best order from a legal point of view, and no further questions must be asked.

This is not only callous, but it is outright absurd. At the hands of the ECtHR, the seemingly benevolent principle of “the child’s best interest” is turned into a weapon against the child and its parents. It is used to prevent a final desperate effort to save the child’s life from being made. It is used to dispossess the parents of their natural rights as parents: those who must be expected to love the child more than anyone else are replaced by a bureaucrat who, even in the best of cases, cannot be expected to have any particular feelings for the child. Indeed, he is praised precisely for this (cf., inter alia, § 65): he has no personal attachment to the child, so he can decide more “objectively”.

With all this I am not saying that in situations such as the one at hand parents are always right, and that States should never intervene to defend a child’s best interest against its own parents. I remember a case in Austria, more than twenty years ago, in which a 9-year-old girl was suffering from kidney cancer, and was treated with chemotherapy. Yet the parents had lost all confidence in classical medicine; they demanded that therapy to be stopped and instead wanted their daughter to be treated by a spurious “miracle healer” without any medical credentials. The public authorities thus suspended their parental rights and appointed a guardian, who decided that the girl should continue to be treated lege artis with chemotherapy. The whole incident then developed into a week-long saga, with the parents kidnapping the daughter from the hospital and bringing her to Spain, from where the family finally was extradited. No doubt the Austrian authorities’ intervention in that case was legitimate, and indeed life-saving. But the situation was different, indeed the very opposite, of the Charlie Gard case: in the Austrian case the dispute was not on whether the girl should receive therapy, but on which therapy it should receive – and there was no doubt that this was a question the doctors were better placed to answer than the parents; in the Charlie Gard case the question was whether Charlie should be given a therapy or be killed.

I also know of another case, one that took place in my own wider family: a young girl was diagnosed with an aggressive form of leukaemia, which at that time (in the early 1970s) was considered incurable. Yet her father had heard of a new therapy that had been developed somewhere abroad (whether in France or the UK I don’t recall), and managed to get his daughter accepted in the test program. And lo and behold, she was healed: she is still alive today, leading a completely normal life. Every new therapy is, at some stage, new and “experimental”. With every new therapy, someone will be the first to whom it is applied, or who is healed by it. This is what they call progress.

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Matthew Happold says

July 14, 2017

FWIW, here's the link to the position statement filed with the High Court yesterday by Great Ormond Street Hospital https://t.co/X9WHHjhl3u

Stevie Martin says

July 14, 2017

A few points in reply. Firstly, it is by no means uncommon for the courts in England and Wales dealing with best interest issues to appoint a lawyer for the child. In an adversarial jurisdiction, the courts depend on the parties to provide the relevant evidence and, regardless of the parents' bona fides (or not), the child's lawyer provides a further opportunity for the court to receive relevant evidence and to have that evidence properly tested. It is by no means defamatory.

Secondly, to frame this as a euthanasia case without properly examining the act/omission distinction (and the merits/demerits thereof) and the wealth of jurisprudence domestically on causation in such cases is to significantly misrepresent both the Gard decisions and, indeed, the Lambert decision. That's not to say that there isn't merit in categorising the act of withdrawing life-sustaining treatment as euthanasia but the arguments are far more nuanced than your post suggests. Importantly, your post fails to distinguish between those cases in which a person is receiving life-sustaining treatment which can be removed so as to, as the courts would say, let the underlying illness run its course (ie death) versus cases involving the minimally conscious (eg the EWCOP decision in Briggs).

Indeed, to suggest even that Lambert and Gard are analogous is to ignore the fact that Mr Lambert was not ventilated; the case concerned removing his artificial nutrition and hydration (arguably more akin to euthanasia than removing ventilation as per Charlie's case). Hence the Court's focus on what constitutes "treatment".

Michael Plachta says

July 14, 2017

I am - a father of four - deeply disturbed by the way this case, and specifically the child, has been handled by the English judge and now, by the ECtHR. I consider this an open attack on family - a real foundantion of our civilization. I agree with Jacob that this case can easily be distinguished from earlier ones, most notably Lambert and an Austrian case. Therefore, I strongly oppose the ruling made by both the English judge and the ECtHR in this case.

Reto Walther says

July 14, 2017

The way I understand the decision on admissibility of the ECtHR in Gard and Others v. the United Kingdom is that it does not actually determine what the best interest of the child is. Thus, it is wrong to say that the ECtHR’s “decisions is … that it is ‘in the best interest’ of [Charlie] not to undergo any further treatment, but to be euthanized”.

In fact, concerning Article 2 the ECtHR deals with the following questions:
(1) whether Article 2 requires access to experimental treatment for terminally ill patients;
(2) whether Article 2 imposes on the State parties an obligation to regulate access to to unauthorised medicinal products for the terminally ill in a particular way.
(3) whether or not to permit the withdrawal of artificial life-sustaining treatment and how to strike the balance between patients’ right to life and the protection of their right to respect for their private life and their personal autonomy.

With regard to (1) the ECtHR simply held that the Convention does not grant a right to access to unauthorised medicinal products for the terminally ill (§§ 77-78).

With regard to (2), the ECtHR held that Article 2 cannot be interpreted as requiring access to unauthorised medicinal products for the terminally ill to be regulated in a particular way: to comply with Article 2, it is sufficient to put in place any appropriate regulatory framework governing access to unauthorized medicinal products. As the UK had implemented such a framework, Article 2 was not violated (§§86-87).

With regard to (3) the ECtHR had to answer three questions: first, whether the UK had put in place a regulatory framework compatible with Article 2; secondly, whether the wishes of the patient, those close to him, and the opinions of medical personnel have been taken into account; thirdly, whether there were ways to approach the courts in case of doubts as to the patient's best interest. Again, the ECtHR did not find a violation of Article 2, since the UK implemented an appropriate regulatory framework, considered all relevant opinions, and had the case heard in its domestic courts (§§ 88-98).

In sum, the ECtHR, under Article 2, did not determine the patient’s best interest but, granting a margin of appreciation, left it to the domestic authorities to decide on this question. Thus, when Jakob Cornides criticizes the ECtHR for making a “lifestyle choice … contingent on certain moral and philosophical convictions” in place of the applicants, implying that the ECtHR should have ordered the contentious experimental treatment be performed, it is in fact him who wishes that the ECtHR would have made such a “lifestyle choice”. The ECtHR itself abstained from doing so, leaving the matter to the domestic authorities. It should be noted that, under Article 8, the ECtHR neither ruled on the best interest of the patient. Quite contrary to that, it explicitly held “that it is not for the Court to substitute itself for the competent domestic authorities but rather to review under the Convention the decisions that those authorities have taken in the exercise of their power of appreciation”.

To argue, as Jakob Cornides does, that the “[a]t the hands of the ECtHR, the seemingly benevolent principle of ‘the child’s best interest’ is turned into a weapon against the child and its parents” is, in my opinion, a misrepresentation of the Strasbourg decision in Gard and Others v. the United Kingdom.

Jeremy Greenberg says

July 14, 2017

Not quite the same, but speaking of child leukaemia cases, readers should probably read up on Makayla Sault. An indigenous girl in Canada, she (i.e. her parents) refused chemotherapy, electing instead for "alternative" treatment. There was a huge court battle where "Makayla's" interests won out over the doctors treating her.

Which is to say, her parents won the right to withdraw her from medical treatment, and she promptly died.

http://www.cbc.ca/news/indigenous/makayla-sault-girl-who-refused-chemo-for-leukemia-dies-1.2829885

Jakob Cornides says

July 17, 2017

Stevie Martin writes that it is routine for the courts in England in cases like this one to appoint a guardian and thus dispossess the parents of their rights as parents. That may be so or not – she certainly knows better than I – but I doubt that this is considered normal in many other countries, and in fact I think that, rather than dispelling any concerns, this highlights why we should be very watchful when it comes to "Children's Rights" and specific mechanisms to protect them. Obviously, children do have rights that must be protected. But with every new law or international convention, and with every new enforcement mechanism, the question is: to whom do they give new powers, and against whom are these new powers directed? As one can very clearly see in this case, the subtext is to protect children against their parents – and of course this inevitably results in transferring new and unprecedented powers to the State at the expense of the natural family, which seems to be at odds both with Art. 16 UDHR ("The family is the natural and fundamental group unit of society and is entitled to protection by society and the State") and Art 8 ECHR.

This is not to say that the State must never intervene when parents make questionable decisions (see the Austrian case mentioned in my original post), but that it should only do so when there are weighty reasons for such an intervention. In the Gard case not only was there no reason to suspect a failure of the parents to discharge their duties, but it actually was the parents who want to make an extra effort in order to save the child, whereas the representatives (i.e., the guardian and the law courts) find that the child's interest is best served if he is … KILLED.

Which brings me to Mrs. Martin's second point: she says it is a "misrepresentation" to qualify the Gard case as euthanasia.

She is wrong on this, but maybe she is right that the matter might require some further explanation. The reason for me not to have provided it was that (a) perhaps too optimistically, I thought that the point was quite obvious and (b) the post already was much longer than what the editorial guidelines recommend. As it appears, it is not obvious for everyone.

It is true, the term “euthanasia” neither appears in the ECtHR Decision, nor does it seem to have been used in any of the decisions issued by the law courts in the UK. This is indeed remarkable - and makes one wonder about the reasons: was the term not used, and the matter not discussed, because the courts really believe this is not a euthanasia case? Do they have a different concept of what euthanasia is? Or did they avoid using the term in order not to stir up unwelcome criticism? Contrary to the Netherlands, Belgium, and Luxembourg, the UK does not seem to have a law that explicitly legalizes euthanasia – but the facts of the case provide clear evidence that the practice exists and is accepted: otherwise, why did the hospital make an official application for a declaration that it would be lawful to withdraw ventilation? It appears thus that UK legislation wants to have the cake and eat it: it accepts euthanasia, but avoids calling it by its name. Euthanasia exists, and at the same time does not exist, in the UK. (And perhaps that is the reason why Mrs. Martin is worried about my calling a spade a spade.)

At the same time, this is certainly not the first time for the ECtHR to decide a controversial issue by NOT addressing it. Think of the Court's case law on issues such as abortion (Vo v. France, § 85: "it is neither desirable, nor even possible as matters stand, to answer in the abstract the question whether the unborn child is a person for the purposes of Article 2") or surrogacy (in cases like Menesson, Labassée, or Paradiso and Campanelli the Court pretends not to discuss the practice as such, but in fact obliges States to accept it). In the Gard case, the word "euthanasia" appears not even once – yet the Court effectively seems to approve that the representatives of a State, based on feelings of "mercy", can order the killing of an infant child against the will of its parents. And the rebuttal of the application is to not a small extent due to the fact that the case is mis-framed by the Court as a case in which the parents are pushing for some kind of "therapeutic excess" against which the child must be protected.

The Gard case in fact compounds both issues, raising the following questions:

1) whether the hospital is, or should be, obliged to administer the nucleoside treatment on which Charlie’s parents have placed their last hope, and

2) whether Charlie should effectively be prevented from receiving that treatment elsewhere (i.e. at another
hospital, by a doctor who is willing to perform it), and

3) whether life-sustaining treatment should be withdrawn and Charlie be left to die.

I would agree that in the present case the nucleoside treatment – given its very low probability of success and (perhaps, although it does not come out quite clearly) the pain and suffering it might cause - could be qualified as acharnement thérapeutique, and that doctors at the hospital (the Grand Ormond Street Hospital, GOSH) should not be obliged to administer it if their conscience tells them otherwise. By withholding from their patient a life-saving treatment of proven efficiency they would be committing homicide by omission, but this is not such a case.

But another question is: would the doctors at GOSH, or anyone else, have the right to prevent a patient from seeking and undergoing such an (experimental, probably unsuccessful) treatment if he so desires? What if Charlie were a grown-up, capable of expressing his own will, and desperately attached to his life (even if that were a miserable life in a wheelchair)? I suggest that in such a hypothetical situation any action that directly prevented him from having access to that treatment would indeed very clearly violate his right of life under Article 2 ECHR, because it would deprive him of his last (even if minimal) chance to hold on to that life. Thus I think that, despite what Reto Walther writes, the ECtHR got it terribly wrong on this one, too. Article 2 may not as such confer an entitlement to experimental therapies, but the Right to Life does at least imply a right not to be prevented from having access to them if one wants to and is willing to afford it.

(...)

Jakob Cornides says

July 17, 2017

(cont.)

Yet this was not the focus of my original post. Beyond refusing to administer the experimental treatment (or at least allow others to administer it), GOSH “made an application to the High Court for an order stating that it would be lawful, and in CG’s best interests, for artificial ventilation to be withdrawn” (see the ECtHR Decision at § 7).

Although this distinction may not be of particular relevance (as one can kill not only through action, but also through omission), let us note that withdrawing artificial ventilation is a positive action, not an omission. Not having provided it in the first place would have been an omission, but that’s not the case here.

More importantly, let us also note that Charlie is apparently depending on artificial ventilation (cf. § 12 of the Decision), so that withdrawing it would inevitably cause his death. In this case, if artificial ventilation is withdrawn it is not because it is hoped that Charlie does not need it anymore, but in order to accelerate his death. On the other hand, if it is not withdrawn, Charlie might continue living for some weeks, or months, or perhaps even years. (Note in this regard what is said in § 12: “he will always be dependent on mechanical ventilation to maintain life.")

Finally, let us re-iterate that artificial ventilation is in and by itself not a therapy, but a (routine) life-sustaining treatment: it is apparently needed to keep Charlie alive (just as food and hydration are needed), but it is not expected to heal him from his condition. Nor is it “experimental”. Therefore, it very obviously cannot be qualified as “therapeutic excess / acharnement thérapeutique”.

(While Mrs. Martin is right in noting that in the Lambert case Mr. Lambert was not ventilated, but only received artificial nutrition and hydration, one fails to see – and she offers no argument - why this distinction should be of particular relevance. We are still in the domain of “life-sustaining treatment”, not “therapeutic excess”.)

Drawing together these elements, it is not only arguable but indeed undeniable that what we are facing here is indeed a case of intended euthanasia, even if that word appears nowhere in the ECtHR’s Decision: the intentional KILLING of a person for reasons of "mercy". There is absolute no “misrepresentation” here. If anything, one must criticize the Court for having mis-qualified the situation.

When the Netherlands became the first country in the world to legalize euthanasia, critics warned that this was a slippery slope. The problem with slippery-slope arguments is that they are never accepted at the time when they are made, yet almost always turn out to be right in hindsight. In the case of euthanasia, the claim of the politicians and media supporting it was that it would be applied only in cases of terminal illness, and only upon the clear and determinate request of the person to whom it is administered. It was only a matter of a few years that this promise has been hollowed out completely: gradually, euthanasia has been extended to patients who are not terminally ill but suffering from chronic diseases, then to people with depressions or other psychological conditions, then to people suffering from a feeling of loneliness, then to those who are not ill at all, and ultimately even to a convicted criminal serving a life-long prison sentence, as a form of self-chosen death penalty. Regarding informed consent, while the original claim was that euthanasia would be administered only to adults who had clearly and serenely expressed their will to die, it now is administered also to minors (who due to their age are normally considered incapable of forming a legally relevant will even when it comes to merely buying a pack of chewing gums), to people suffering from dementia, to the unconscious, until finally we are now reaching the point where - with the ECtHR's rubber stamp - it can be administered to an 11-month old child against the will of its parents. All this happens not on the basis of the concerned persons’ stated will, but on the basis of presumptions on what their will might, or should, be.

The most astounding part of the ECtHR Decision is in § 92:
“(The Court) notes that whilst C(harlie) G(ard) could not express his own wishes, the domestic courts ensured that his wishes were expressed through his guardian…”

With all due respect to the Court, this is pure and unfiltered nonsense. What the guardian expressed was not Charlie’s wishes. We certainly do owe this guardian the respect of assuming that he is acting professionally, to the best of his knowledge, and with good intentions. But of course the truth is that he has absolutely no means of ensuring that what he expresses are actually Charlie’s wishes. What he expresses is perhaps what he presumes his own wishes might be if he were in Charlie’s position. Or maybe it is what he believes Charlie’s wishes should be if (if only!) the poor child were able to correctly figure out his own best interest. But whatever it is, it remains that the Court’s claim that “the domestic courts ensured that his wishes were expressed though his guardian” is pure fiction. The ECtHR cannot possibly know what Charlie’s wishes are, nor whether they are expressed by his guardian.

But the Court here also misses out on another important point, namely that the decisions of the UK judiciary were in fact not at all based on Charlie’s wishes (as expressed by his guardian), but on his “objective best interest” (see, in particular, §§ 20, 27, 43, and 44). That is not quite the same. In fact, it might at times even be the direct opposite.

A person’s wishes can be very subjective, and widely divergent from what is in that person’s objective best interest. But while we have every reason to doubt that the UK courts, or the guardian, or the ECtHR can make any serious claim to know what Charlie’s innermost wishes really are, it is in fact the UK judiciary’s claims about his “objective interests”, and the ECtHR’s silent acceptance of these claims, that turn the Charlie Gard Decision into a dangerous judicial miscarriage that even those who (unlike myself) have no fundamental objection against euthanasia should hasten to protest against.

The basic argument in favour of legalizing euthanasia used to be that euthanasia should be made legal (indeed, recognized as a “right”) because a person may want it, and because no one else should be allowed to make that decision on behalf of that person – irrespective of what is in that persons objective best interest. But all of a sudden, everything must be “objective” rather than subjective: we are asked to accept that it is on grounds of his “objective best interest” instead of his clearly expressed will that a person can (or must?) be euthanized. What this really means is that it becomes plausible and acceptable to euthanize any person even against his explicitly stated will: it is the “experts” who decide according to their own criteria. In a recent case in the Netherlands, a doctor “euthanized” an unsuspecting elderly patient by putting drugs into her coffee to tranquillize her, and when this didn’t work out asked her family to hold her down as she fought desperately against getting the lethal injection. The doctor was subsequently cleared by a review panel, which found that she had “acted in good faith”.

This seems to be more or less the direction where the ECtHR is headed.

Luca Ratti says

July 18, 2017

In principle I would say that there are questions that a Court should not engage with, and in this I might agree with Jacob.

My questions for the author is, however, what if the parents pushed for an 'alternative' treatment - e.g. homeopathic?

Does not a treatment whose efficacy is deemed to be only theoretical or unlikely amounts in essence to an 'alternative' treatment?

Therefore, in this case, can we still argue that the parents' interest coincide with the child's interest? I doubt so...

Jakob Cornides says

July 18, 2017

Luca: that situation (i.e., parents pushing for an "alternative treatment", while doctors want to treat the child according to the established lex artis) would be identical or at least similar to the Austrian case (Olivia Pilhar) that I mentioned towards the end of the original post. As I wrote there, I agree that in such a case the State may have to intervene in order to protect the child against its parents.

However, the Gard case is different, essentially because the State and its representatives intervene not to preserve the child's life, but to kill it.

You will find some more detailed answers in the very lengthy reply I gave to another contributor.

Luca Ratti says

July 18, 2017

Jacob, I agree. The core of this case is exactly whether 'pushing for a treatment whose efficacy is only theoretical' equals to 'pushing for an 'alternative' treatment' or to 'pushing for stopping the treatments altogether'.

I am not sure on the answer. The line between 'treatments which do not work' and 'end of any treatment' seems quite blurred from my point of view - as you know in Italy there is this ongoing debate on parents not vaccinating their offspring, which somehow reminds the case you discuss.

In any case, thanks for your thoughts.

EL EL says

July 24, 2017

Very insightful observations, Jacob.

The position paper filed at Court by GOSH (the British hospital where Charlie Gard currently remains) was certainly a window into its worldview that: (a) the hospital - a government institution - is on the same footing to decide a child's best interests as the parents, even where the parents are acting reasonably and seeking another alternative grounded fully in medical science; and(b) that an infant by virtue of being an individual is entirely emancipated from the parents, and ought to be vested with fictional autonomy.

What is perhaps most worrying is that the hospital, in this case, is not being asked to perform any treatment it ethically opposes and the state is not being asked to expend resources. Rather, the hospital itself has now twice adopted the aggressive stance of going to Court ostensibly to 'defend' the rights of an infant who is most naturally aligned with his parents rather than a state institution. One would think that the most logical, rational and gracious approach by the hospital would have been to say that it disagrees with the proposed treatment but respects that another world-class clinical has offered a reasonable alternative and that the parents ought to be allowed to pursue that alternative. The result would be that the hospital would discharge the baby and have no further involvement in his care. Why it is that the hospital has taken it upon itself to act effectively as a stand-in parent for this child is most puzzling and concerning. It speaks to a very troubling kind of paternalism from the 'experts'.

Jakob Cornides says

July 24, 2017

"What is perhaps most worrying is that the hospital, in this case, is not being asked to perform any treatment it ethically opposes..."

A very interesting remark. I personally dislike the idea of asking healthcare professionals to perform any action they oppose. But you are right that at least the hospital should then allow the parents to seek further treatment for their child elsewhre.

A parallel that immediately comes to mind are the attempts of supporters of liberal abortion laws (in politics, media, the courts, and even within the healthcare sector itself) to enforce a principe according which doctors should be obliged to perform abortions whenever they are asked to do so, irrespective of any conscientious objections. The ECtHR has at various occasions pushed in that direction. The difference, however, is that abortion is the killing of a (perhaps perfectly healthy!) child, so that any objections of conscience would appear far more reasonable and justified than in the Gard case, where doctors are objecting against a further desparate effort to preserve a child's life.

Is no one noticing this contradiction?