The Charlie Gard Case: Behind the Hyperbole

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This post is intended to be both a reply to Jakob Cornides’s post on the judgment of the European Court of Human Rights (‘ECtHR’) in the case of Charlie Gard and, relatedly, to provide clarification on several points raised in that post (and pervading content elsewhere) regarding the nature of the decisions confronting both the domestic courts and the ECtHR.

There is no need to repeat the facts underpinning Charlie’s case. They have been canvassed in considerable detail in the judgments of the English High Court and the European Court of Human Rights (ECtHR). It is incontrovertible that Charlie suffers from a life-threatening illness which, at this stage, requires that he be ventilated and receive artificial nutrition and hydration to survive. The available medical evidence (which Charlie’s parents dispute) indicates that he is not responsive to his surrounds. Despite declarations being made by the High Court to the effect that maintaining life-sustaining treatment is not in Charlie’s best interests nor is proposed experimental treatment, and those declarations being upheld on appeal to the UK Supreme Court, the matter persists with experts meeting this week to discuss the medical evidence.

It is beyond the scope of this post to address each of the aspects of the reasoning (and practice) of the domestic courts and the ECtHR which Mr Cornides’s post flags as being extremely problematic in the depth they deserve. Instead, I will respond to three specific issues raised by Mr Cornides, issues which together I consider reflect a wider misunderstanding of the domestic law which has been repeated by various media outlets, and which are central to the broader discussion regarding assisted dying in the United Kingdom (particularly within the context of the European Convention on Human Rights (‘ECHR’)). Those issues are:

  1. Whether the declaration that life-sustaining treatment is not in Charlie’s best interests constitutes euthanasia;
  2. The true nature of the declarations made and the role of the best interests test; and,
  3. Whether the appointment of an independent representative for Charlie was unjustified (and a practice unknown to other jurisdictions).

Before moving on to consider those issues, it is important to first clarify a source of confusion which is apparent throughout the various writing on Charlie’s case; namely, why it is that the various courts have decided what is in Charlie’s best interests, as opposed to his parents making the decision.

Why is the decision that of the courts?

The jurisdiction of the domestic courts in cases such as Charlie’s was aptly described by the Court of Appeal in Wyatt (concerning treatment of a child) in the following manner:

[3]        As a small child, Charlotte self-evidently lacks the capacity to make decisions about her medical treatment. In these circumstances, such decisions are, in the first instance, taken by those having parental responsibility for her (her parents) in consultation with, and on the advice of, the doctors treating her. In the event of an important disagreement between doctors and a child’s parents, however, either side can invoke the inherent jurisdiction of the Family Division of the High Court relating to children, and a judge of the Division will decide what course of treatment is in the best interests of the child.

While Charlie’s parents and the doctors and nurses at Great Ormond Street Hospital (‘GOSH’) where Charlie is presently being treated agree on many aspects of his care, they fundamentally disagree as to whether certain treatment is or is not in his best interests. For a more thorough discussion of the areas of agreement/disagreement see the Position Statement of GOSH provided during the latest High Court proceedings (available here). The question of what is/is not in Charlie’s best interests is, then, at the centre of the dispute (both before the courts and in the media). How his best interests are determined will be considered further below.

Withdrawing life-sustaining treatment and euthanasia

Mr Cornides contends that, despite not making reference to ‘euthanasia’ in either the domestic judgments or the ECtHR judgment, the decision to withdraw Charlie’s ventilation and artificial nutrition and hydration constitutes euthanasia. It bears noting that both the UK domestic courts and the ECtHR have repeatedly and expressly rejected claims that withdrawing life-sustaining treatment in cases where such treatment is ‘futile’ constitutes euthanasia. Thus, in Lambert v France (referred to by the ECtHR in the Gard judgment), the Grand Chamber observed that there is a distinction (accepted by the applicants in Mr Lambert’s case) between intentionally taking life and ‘therapeutic abstention’ in the case of unreasonable obstinacy ([119]-[124]). The Grand Chamber in Lambert proceeded to hold that in circumstances where the domestic legislation criminalises the intentional taking of life and permits life-sustaining treatment to be withdrawn or withheld only in certain specific circumstances (as is the case in England and Wales), the State’s negative obligation under Article 2 not to arbitrarily deprive individuals of their lives does not arise (at [124]). Similarly, Lord Bingham observed in the seminal decision of Bland (which will be discussed in greater detail below) that the decision to withdraw life-sustaining treatment in respect of a patient in a persistent vegetative state  ‘is not … euthanasia, if by that it meant the taking of positive action to cause death’ (at [808D).

The statement of Lord Bingham just cited raises a very important point: what is meant by ‘euthanasia’? Mr Cornides does not clarify what he means by ‘euthanasia’. As most texts on euthanasia note, the phrase (first appearing in contemporary writings in the 17th century) derives from the Greek eu meaning good and thanatos meaning death. It refers to a third party deliberately ending another person’s life (some definitions include reference to an intention to relieve suffering as a requirement for the act to constitute euthanasia). Whether or not removing life-sustaining treatment constitutes euthanasia (or, more accurately, ‘passive euthanasia’) has long been the centre of significant debate by ethicists, philosophers, doctors and lawyers. But the legal position is clear (at least insofar as England and Wales is concerned). A doctor who withdraws life-sustaining treatment either at the request of a capacitous patient or based on an assessment of best interests, and does so without intending to cause death, will not be taken to have killed (and, thus, not be considered to have euthanised) the patient. In such cases, the courts have held that the conduct of the doctors constitutes an omission (as opposed to an act) and the cause of the patient’s death is taken to be their underlying illness, not the withdrawal of treatment. Of course, much can be said about the merits/demerits of those (seemingly artificial) delineations but the legal position is clear: a doctor who withdraws life-sustaining treatment based either on a lawful request or a best interests assessment will not, without proof of intention, be taken to have killed the patient (for more on this, see the seminal decision of Bland further expanded upon in the Court of Appeal decision in Re A (Conjoined Twins)).

Mr Cornides also seems to suggest that not administering the purely experimental treatment also constitutes euthanasia. The above applies to this argument as well. Additionally, however, the following observation of the Court of Appeal in Re A regarding the Bland decision has direct application:

An omission to act would none the less be culpable if there was a duty to act… There was no duty to treat if treatment was not in the best interests of the patient … Since there was no prospect of the treatment improving his condition the treatment was futile and there was no interest for Tony Bland in continuing the process of artificially feeding him upon which the prolongation of his life depended.

The evidence that was available to the trial judge in Charlie’s case (and which was accepted by the courts of appeal thereafter) was to the effect that the experimental treatment would be effectively futile and may, indeed, subject Charlie to pain and suffering. While the proceedings have since been reopened to explore this issue, the determination that the treatment was not in Charlie’s best interests cannot, for the reasons given above and in light of the preceding observation of the Court of Appeal, be taken to constitute ‘homicide by omission’ or euthanasia.

What are the courts declaring? Treatment and the best interests test

Underpinning much of the criticism of the domestic and ECtHR decisions in Charlie’s case is a misunderstanding of the nature of the declaratory relief granted. Since at least the time of the House of Lords decision in Bland, courts exercising the declaratory jurisdiction regarding medical treatment of incapacitous patients have been at pains to emphasise that the question they need to ask is whether the proposed treatment (usually maintaining life-sustaining treatment) is in the patient’s best interests. The question is, thus, not whether letting the patient die (either by removing life-sustaining treatment or not administering such treatment) is in their best interests.

In Charlie’s case, the courts had to address two questions: first, whether maintaining life-sustaining treatment (ventilation, and artificial nutrition and hydration) was in his best interests; and, secondly, whether the experimental treatment proposed by his parents was in his best interests. In both instances the central question was whether the treatment was in his best interests.

In English law, the ‘best interests’ test – which underpins decisions about children and those who lack capacity – is a common law construct developed long before the Human Rights Act 1998 was enacted. The best interests assessment:

…include[s] every kind of consideration capable of impacting on the decision. These include, non-exhaustively, medical, emotional, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations (per the trial judgment in Gard at [39(v)]).

As numerous courts (both domestic and international) have recognised, the best interests test is intended to give effect to, inter alia, the principles of sanctity of life, autonomy, self-determination and dignity which underpin the ECHR, particularly the rights to life and private life enshrined in (respectively) Articles 2 and 8 (see, for instance, James [2013] UKSC 67; Briggs [2016] EWCOP 53; Lambert).

As those same courts have also recognised, the nature of the best interests assessment is not the same in all medical treatment cases. Thus, in cases where the patient is minimally conscious (as was the case in Briggs), the best interests assessment involves a weighing up of the ‘strong’ (but displaceable) presumption in favour of the sanctity of life (i.e. Article 2) on the one hand against, inter alia, the right to self-determination protected by Article 8 on the other. In contrast, in cases where the patient is in a persistent vegetative state (as was the case for Mr Lambert and Tony Bland), ‘the decision whether to continue life-prolonging treatment does not involve a weighing operation of competing factors’ (per Lord Goff in Bland at 869A, emphasis added). As Lord Goff further clarified (at 869C):

Here the condition of the patient, who is totally unconscious and in whose condition there is no prospect of any improvement, is such that life-prolonging treatment is properly regarded as being, in medical terms, useless ….[F]or my part I cannot see that medical treatment is appropriate or requisite simply to prolong a patient’s life, when such treatment has no therapeutic purpose of any kind, as where it is futile because the patient is unconscious and there is no prospect of any improvement in his condition.

Thus, while in both cases (that is, where patients are in a persistent vegetative state or are minimally conscious) a best interests assessment will turn on an assessment of the factors in favour of treatment versus those against it, the reality is that in the case of patients in a persistent vegetative state or similar state, life-sustaining treatment will, generally, be considered futile such that there is no real balancing exercise. Based on the evidence before the trial judge, this was the case for Charlie. Indeed, ‘his parents agree that his present quality of life is not worth living’ (per the Supreme Court decision of 8/6/17). Despite Mr Cornides’s claim that ‘it never comes out quite clearly who made [the] determination [of Charlie’s best interests] and on which basis’, both the High Court judgment and the ECtHR judgment clearly set out the test being applied and the factors relevant to same (see, in respect of the ECtHR judgment paras [3]-[45]). Having ‘balanced’ the factors in favour of the experimental treatment (a ‘theoretical possibility’ of ‘some benefit’ without any indication that it would redress Charlie’s neurological deficits) and those against it (potentially subjecting Charlie to pain and suffering), the trial judge determined that the experimental treatment would be ‘futile’ in the sense of having no ‘effective benefit’ and would, thus, not be in his best interests. It is apt here to recall Lord Goff’s observation in Bland extracted above.

The appointment of an independent representative

Mr Cornides’s states that 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.’ The appointment of a guardian is a practice which is common in proceedings such as Charlie’s (and, indeed, in proceedings involving children in other common law jurisdictions such as Australia) and which, as Lady Hale observed, was necessary in Charlie’s case because:

…where there is a significant dispute about a child’s best interests the child himself must have an independent voice in that dispute. It cannot be left to the parents alone. This has happened in this case because Charlie has been represented by a guardian.

In an adversarial jurisdiction such as England and Wales courts are (generally) bound by the evidence tendered by the parties. In a case such as Charlie’s where the outcome has such profound consequences, the need to ensure that all the relevant evidence is put before the court and properly tested cannot be overstated. Indeed, the domestic courts have observed that the guardian ‘is on any view pivotal to the whole scheme’ as they are ‘both the voice of the child and the eyes and ears of the court’. Appointing a guardian for Charlie is entirely consistent with the obligation under Article 8 of the ECHR to ensure that the child’s interests are given paramountcy. In those circumstances it is difficult to understand how an issue can be taken with this practice. As Mr Cornides acknowledged, there is nothing to suggest that Charlie’s guardian has not carried out her duties (which include, fundamentally, to ‘fairly and competently … conduct proceedings on behalf of the child’) to the best of her ability. The sole basis of Mr Cornides’s challenge, then, appears to be that the guardian disagrees with Charlie’s parents as to what is in his best interests.

Indeed, Charlie’s parents submitted before the domestic courts of appeal and the ECtHR that the test ought not to be one of best interests. Rather, they argued that the proper ‘test’ in cases such as Charlie’s (that is, where both parents agree as to the treatment that should be undertaken) ought to be whether there is a likelihood that such treatment would cause ‘significant harm’ as opposed to whether the treatment is in the child’s best interests. In rejecting that claim, both the Supreme Court and the ECtHR noted the broad international consensus that the child’s best interests is the paramount factor. The courts also observed that even if the ‘significant harm’ test were to apply, it would be met in Charlie’s case given the likelihood that he would be ‘exposed to continued pain, suffering and distress’ (ECtHR at [119]).

Concluding observations

Charlie’s case is tragically sad. But the issues it raises are not unique. Central to the law as it pertains to medical treatment of incapacitous patients in England and Wales is the need to ensure that any such treatment is in the patient’s best interests. While it may seem unjust that Charlie’s parents are not ‘allowed’ to make decisions about his treatment, it is a consequence of a broader system aimed at ensuring that it is the patient’s interests, and no one else’s, which dictate whether treatment is given. Finally, as noted at the outset, Mr Cornides’s post, particularly as it pertains to euthanasia, has implications beyond Charlie’s case and the need for clarity in debates surrounding assisted dying practices is of particular importance in the UK, where a new challenge to the Suicide Act 1961 based on Article 8 of the ECHR is this week before the High Court.

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    Matthew Happold says

    July 21, 2017

    FWIW, Pope John Paul II's enyclical Envangelium Vitae (1995) states that:

    'Euthanasia in the strict sense is understood to be an action or omission which of itself and by intention causes death, with the purpose of eliminating all suffering. "Euthanasia's terms of reference, therefore, are to be found in the intention of the will and in the methods used".

    'Euthanasia must be distinguished from the decision to forego so-called "aggressive medical treatment", in other words, medical procedures which no longer correspond to the real situation of the patient, either because they are by now disproportionate to any expected results or because they impose an excessive burden on the patient and his family. In such situations, when death is clearly imminent and inevitable, one can in conscience "refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted". Certainly there is a moral obligation to care for oneself and to allow oneself to be cared for, but this duty must take account of concrete circumstances. It needs to be determined whether the means of treatment available are objectively proportionate to the prospects for improvement. To forego extraordinary or disproportionate means is not the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death.'

    Matthew Happold says

    July 21, 2017

    Opps, I meant Evangelium Vitae

    Jakob Cornides says

    July 21, 2017

    I am grateful for Mrs. Martin’s reaction to my post of 14 July. However, I note that much of what she is writing here was already said (albeit more concisely) in the comment she posted in the combox below my post, and I already provided a very (perhaps overly) lengthy reply to that. So I will not repeat myself here; instead I will limit myself to some very essential points:

    1. Mrs. Martin writes that my original post “seems to suggest that not administering the purely experimental treatment also constitutes euthanasia”. This clearly appears to be a misunderstanding of what I have written. I fail to see how this could be read into my original post; but in addition I have – already in response to Mrs. Martin’s comments to my post - provided the necessary clarifications. I am therefore surprised to see this apparent misunderstanding re-appearing here again.

    2. Nonetheless, I think one should distinguish between “not administering a purely experimental treatment” and effectively preventing a patient who wants such treatment from having access to it. The Charlie Gard Case is rather less about “not administering” treatment, and rather more about preventing access to it.

    3. The focus of my post was not so much on the hospital withholding experimental treatment from Charlie, but on the fact that - besides not allowing Charlie to be brought to the US and treated there - it had requested, against his parents´ wishes, an authorization to withdraw life-sustaining treatment.

    4. The nub of the matter, then, is that Mrs. Martin, as well as the domestic and ECtHR case law she quotes, are in flat denial about the Charlie Gard Case being a euthanasia case. If I understand her correctly, her (very positivistic) argument is that it is not euthanasia because the law does not define it as euthanasia: “the legal position is clear: A doctor who withdraws life-sustaining treatment … based on an assessment of best interests, and does so without intending to cause death, will not be taken to have killed (and, thus, not be considered to have euthanised) the patient.”

    This is where we disagree. Mrs. Martin may well be right insofar as she speaks about the situation under positive law in England and Wales – but the failure of law-makers or judges to recognize it as such does not change the fact that what we are facing is, in its essence, a case of euthanasia.

    It is good that Mr. Happold has posted relevant parts from “Evangelium vitae”, which, whilst stemming from a religious authority, nevertheless has the merit of explaining what euthanasia is without falling into the trap of terminological positivism (…”it is what an author, or the legislator, deems it to be”), and of making the very important distinction between, on the one hand, killing someone (by action OR omission) and, on the other, abstaining from therapeutic excess. Note, in particular, the important reference to the “normal care due to the sick person in similar cases”.

    Whether or not euthanasia in a case like this is “in the best interest of the child”, and who should make that determination, and on what grounds he should make it, is still another matter. But for the time being we seem to disagree on what euthanasia is.

    Stevie Martin says

    July 22, 2017

    Thank you for your further reply, Jakob. While I have debated whether or not to reply as I do not want to contribute to the hyperbole I sought to step behind, there are two points which I consider must be addressed so as to maintain the clarity I have sought to achieve:

    1. The intention of my post was to provide a high level overview of the law in respect of three issues which arose in your original post. To that end, while there is certainly room for debate surrounding whether or not withdrawing treatment/not administering treatment constitutes euthanasia, the law as it stands is clear. More importantly, as I made clear in my post, contrary to your claim (implicit in your post and initial comment and explicit in the above comment), the courts are not in 'denial' about whether or not withdrawal of treatment constitutes euthanasia; they have dealt with the issue directly since at least the time of the Bland decision in 1993 and have determined, for the reasons I extracted in my post, that such conduct does not, provided certain factors are evident (e.g. a lack of intention to cause death) constitute killing and, thus, cannot constitute euthanasia. Indeed, you cite in support of your position the Evangelium Vitae but that is entirely consistent with the domestic law insofar as it requires intention and causation. Nothing you have said thus far appears to grapple with those legal issues (e.g. intention, causation and so on) either at a domestic level or under the ECtHR jurisprudence.

    2. You suggest that I have misunderstood your original post and subsequent comments; apparently you do not claim that refusing to administer the experimental treatment constitutes euthanasia. I'm afraid I cannot see that in any of your writing. In your initial post you state 'in the Charlie Gard case the question was whether Charlie should be given a therapy or be killed' and in your initial reply to my comment you observe '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'. I think it clear from both of those comments that you contend that in determining that Charlie's best interests are not served by him being subjected to the experimental treatment, he is being 'killed' which you appear to use interchangeably with 'euthanise[d]'.

    Jakob Cornides says

    July 22, 2017

    Dear Mrs. Martin:

    At the risk of repeating myself: you seem to continue rebutting a position I have never taken.

    I am making a distinction between (1) not administering the experimental treatment to Charlie, (2) preventing him from having access to that treatment elsewhere, and (3) withdrawing artificial ventilation. (1) is not euthanasia, and I have never claimed it is. (2) might with good reasons be qualified as euthanasia. (3) without doubt is euthanasia, despite what domestic lawmakers or the ECtHR might have said. Beware of ontological nominalism, even if it comes along with high institutional authority: it ultimately results in - intentionally or not - disconnecting one’s views and opinions from reality.

    As for intention and causation: Yes, you are right that these two criteria are decisive. We are not in dispute about this. But both the ECtHR and the domestic law courts appear to apply them incorrectly. Let us therefore try to apply them correctly to the case at hand:

    Causation: if ventilation is withdrawn, Charlie must be expected to die. If it is not withdrawn, he might still continue living for an indeterminate period of time. In that respect, I refer you to the statement of facts in the ECtHR Decision, especially §§ 9-15: if you read it carefully, you will notice that nowhere it is said that Charlie’s death is imminent. On the contrary, one of the experts (at § 12) warns that (if he is not treated, but very probably even if he is treated) “he is likely to remain immobile, that he will exhibit severe cognitive impairment, that he will remain dependent on ventilatory support to maintain respiration, will continue to need to be tube fed and that he will always be dependent on mechanical ventilation to maintain life”. In other words, what this expert really appears to be worried about is not that Charlie might die, but that his life might still be long if ventilation continues. In other words, it appears to be beyond dispute that withdrawal of ventilation will cause death, whereas maintaining it means to maintain Charlie Gard alive.

    Intention: There might be two different reasons behind the decision to withdraw ventilation from a patient: (1) because it is believed that he does not need it anymore, because his respiration has recovered, or (2) because it is expected that without it he will die of asphyxiation. Which of the two is the case in Charlie’s case? As far as I am concerned, I believe it is (2). Don’t you?

    Basically, your argument, and that of the case-law you are quoting, is that “the cause of the patient’s death is taken to be their underlying illness, not the withdrawal of treatment”. This is a bit like saying that “it was hunger and thirst that caused the death of Count Ugolino and his four sons (Dante, Inf. XXXIII), not the withholding of food and drinking water.”

    Jakob Cornides says

    July 22, 2017

    With regard to your point 2, it suffices to refer you to my original post. What I actually wrote was this:

    "...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."

    I think that this very clearly expresses the view that what turns this into a euthanasia case is the withdrawal of life-sustaining treatment."

    Marko Milanovic says

    July 24, 2017

    I agree with much of the substance of what Stevie has written, although I am not confident that the terminological/framing questions are either clear (e.g. is this a case of euthanasia) or whether anything should really hinge on them. I would only add a couple of points.

    First, this is a case that does - or unfortunately, did - hinge on a series of contested and complex factual questions - for example, the effectivness of the proposed experimental therapy, or the extent of Charlie's existing brain damage.

    Second, many people have felt able to pass strong value judgments on the case as a whole without having seen the evidence in detail, and have done so in a way that confirms their pre-existing tendencies or beliefs. This extends to the good faith, or lack thereof, of the primary actors involved. This spiral of confirmation bias was exacerbated by the often sensationalist media coverage and the echo chambers of social media.

    Third, in cases such as these I think we need to maintain a degree of respect for people - such as the High Court judge in this case - who have looked at all of the evidence carefully, rigorously, and in much detail, and also have the experience of many other case as fraught as this one.

    Fourth, a key aspect of this case is that the hospital team believed not simply that the experimental treatment had no prospects of success, but also that prolonging Charlie's life was actively causing him pain and suffering. His inability to express his subjective sense of pain and suffering in any way meant that this had to be inferred from observation etc but again this is the factual judgment that those who were best placed to make it actually made. And this is what the 'best interest' legal issue revolved around; waiting for any further treatment would have prolonged Charlie's suffering today, in the hospital's view.

    Finally, I would invite all readers to read the hospital's final submission to the Court from earlier today: http://www.gosh.nhs.uk/file/23731/download?token=TWJkSxZu

    I am copying paras. 7 (which sets out the hospital's view regarding Charlie's continued suffering) and 10 (pretty damning about people involving themselves in the case without due regard for their responsibilities) below.

    7. At the first hearing in Charlie’s case in March, GOSH’s position was that every day that passed was a day that was not in his best interests. That remains its view of his welfare. Even now, Charlie shows physical responses to stressors that some of those treating him interpret as pain and when two international experts assessed him last week, they believed that they elicited a pain response. In GOSH’s view there has been no real change in Charlie’s responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judge’s finding, in April, that since his brain became affected by RRM2B, Charlie’s has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering.

    ...

    10. When the hospital was informed that the Professor [Hirono] had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.

    Miroslav Baros says

    July 25, 2017

    I was talking to my wife yesterday about this tragic case and after I provided my better half with the chronology all she said in her response was: "Come on, anyone can decide to take their child to somewhere else for an alternative treatment; what do you mean the parents could not do that?!"
    I realised that there is probably a high degree of public misconception of the law and this was precisely when I decided to express my humble view, not really on the case itself but on the debate taking place on the blog. I am doing this in order to rephrase the very essence of the debate; from identifying the valid law to examining the very rationale of such law. And my first impression after reading several good contributions was that the apparent disagreement among the participants was not as serious as it appeared, but that the participants were not asking the same question: to me, it all started looking as a typical positivist - naturalist debate! While Mrs Martin provided an excellent, comprehensive and pretty precise outline of the law, Mrs Cornides questions the appropriateness of such legal determination and the very rationale and foundation of such determinations. To some extent Mr Milanovic touched upon the issue by trying to justify the law and institutions.
    Personally, I am closer to the position implicitly taken by Mr Cornides, because identifying the valid law is only the first, necessary step in examining compatibility of the rules with human rights as you will appreciate; a valid law (in force) still does not mean that a human rights violation is absent unfortunately. "There are rules and reasons for the rules" as D. Kennedy said. "Legal reasoning refers to interpretative fidelity of judges who are bound by the legal formulation of the right; the duty to be faithful to it in their interpretation and application; this duty is counterbalanced so to speak by legislative duty, which is appealing to the political values of the community." („A Critique of Adjudication‟ 1997). In other words, the principal problem with the legal determinations that refer to identifying the valid law only is that we do not (often) question the secondary purpose of the rules, only the primary ones.
    "I am a progressive positivist!" my former supervisor claimed long time ago: I always liked and kind of adopted this description to summarise my legal philosophy. Human race have seen unfortunately many instances of extreme violations of human dignity by sticking to a crude positivism; this is neither the place nor occasion to remind the readers of those episodes. That is why, among other reasons I am a "progressive positivist".
    My principal problem with the case relates to the wisdom of circumventing biological parents' views, position and intention in the final determination of their child's fate. I am not questioning the expertise; opposite I do believe that it was surely given in good faith and that it was correct. I am questioning the rationale for ignoring, almost humiliating and inflicting further and unbearable psychological pain on the parents by rejecting their intention to try something else? Why would this particular aspect be left for the final determination to an authority other than biological parents? The reason is actually pretty obvious, but it is somehow absent from the participants' debate: it is pragmatism, a political choice, apology and the protection of domestic institutions, rather than any particular moral standing or a result of widely debated issue in the society. And this is why inevitably the legal determination may conflict with human rights.
    Then it reverberated in my mind: "What makes the GOSH so special? It has a lot of toys and it doesn’t smell funny". Is it that we bring hope to thousands of children with complex and life threatening illnesses"?...And then a financial plea at the end…see: https://www.youtube.com/watch?v=BpphGTnt42c )
    "Of course, I will not allow the parents to go somewhere else for help because that may have negative consequences for the trust people have in my own hospital". OK, I see, but this does not mean that there is no tension between this political convenience and human rights; opposite, there is a pretty serious potential problem with this. For the sake of widening the debate I am going to suggest the following potential tensions between this pragmatism and human rights:
    1. Article 3 ECHR - appointing a guardian absent situations of inappropriateness, child abuse or other illegal patterns of behaviour by parents inherently constitutes a degrading treatment.
    2. Article 2 ECHR - an authoritative determination that no alternative treatment exists conflicts with a positive duty to protect life.
    3. Article 6 ECHR - a lack of sufficiently independent body to rule on the rationale of such legal determination.
    4. Article 8 ECHR - for obvious violation of respect for private and family life.
    Mr Milanovic provided with his post a relevant part of GOSH's statement yesterday; I am including the family's part of the statement that fits into my position and argument below:
    "Charlie had a real chance of getting better. It's now unfortunately too late for him but it's not too late for others with this horrible disease and other diseases. We will continue to help and support families of ill children and try and make Charlie live on in the lives of others. We owe it to him to not let his life be in vain'.

    Jakob Cornides says

    July 25, 2017

    Marko:

    I am not a medical expert, but – I believe – you are not one either. When we as lawyers discuss a case like this, we should not be discussing whether or not the prospective for healing Charlie through a given experimental therapy are high or low, or whether he is, or is not, feeling pain. We must make some assumptions (or better, take for granted the factual assumptions as they are discernible from the ECtHR decision), and discuss the case on that basis. This is what I have done, and I believe Mrs. Martin and everyone else who contributed to this debate on this forum would (with right) make the same claim.

    As far as I am concerned, I have made the underlying assumptions very transparent right at the beginning of my original contribution (see there): “a child suffers from a medical condition that the treating doctors qualify as terminal, and for which no recognized treatment exists. … 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”.

    Is there anything in this on which you believe the doctors at GOSH would disagree?

    On Charlie’s ability to feel pain, the statement of facts in the ECtHR Decision are (to say the least) somewhat opaque – so I had to make some presumptions about what may have been GOSH´s line of reasoning: “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?” By and large, this seems to converge with what you are suggesting. Again, do you think there is something in this that treats GOSH unfairly?

    You say you are “not confident that the terminological/framing questions are either clear (e.g. is this a case of euthanasia) or whether anything should really hinge on them.” But that is precisely the key question to be discussed: Is this a case of euthanasia or not? What do we mean by euthanasia? Do we believe that euthanasia requires (as Ms. Martin appears to believe) the act of putting some poison into Charlie’s blood infusion, or does it suffice (my view) to “pull the plug” on artificial ventilation with the intention of letting him die?

    And please could you explain why you deem that question irrelevant?

    Finally, I fail to see what Dr. Hirono's conduct, or alleged misconduct, has to do with that key question. At best, you could use these allegations as further proof that the prospective of improving Charlie's condition were very low from the outset - but that is what we all have assumed anyway.

    You are welcome to contribute to this discussion with arguments. But simply decreeing the key question to be irrelevant without offering any argument for that assessment does, in my humble opinion, not do justice to the discussion that has evolved so far.

    Sarah MC says

    July 25, 2017

    Thank you for posting this comment, Stevie. Domestic and international law concerning end of life decision making is highly complex and differs by jurisdiction. I was dismayed to see the withdrawal of life sustaining treatment conveyed as euthanasia, since it has long been considered distinct in many jurisdictions (as regulated medical assistance in dying, where there is consent, is now also), however "artificial" these distinctions may be.

    Just a further note that in many other jurisdictions, including some Canadian provinces and Australian states, family members do automatically have authority to consent on a child's behalf to the withdrawal of life saving or sustaining treatment, if they are legal substitute decision-makers. This is an active area of debate as medical professionals are seeking to gain authority to make such decisions on behalf of patients, in some circumstances. Of course, where disputes arise, administrative tribunals or courts may intervene. You may be interested in the recent report reviewing laws in this area released by the Law Commission of Ontario, as Canadian jurisdictions are currently grappling with such issues following a Supreme Court decision that permits medical assistance in dying (which has opened up other questions relating to end of life decision making): http://www.lco-cdo.org/wp-content/uploads/2017/05/LCO-Last-Stages-of-Life-Discussion-Paper-1.pdf

    In any event, I appreciated your detailed response that clearly sets out existing law, thereby providing a basis for informed critique.

    Marko Milanovic says

    July 26, 2017

    Jakob, again I'm not sure that the key question to be discussed here is whether this is a case of euthanasia or not, i.e. that the legality/morality of what is to be done to Charlie depends on this terminological issue. Let me explain. If, under the exact same circumstances of the theoretical availability of an unproven experimental treatment in America, Charlie's parents had actually agreed with the hospital that Charlie's life support should be suspended, from Charlie's perspective the withdrawal of artificial support would look the same. In other words, if the hospital's decision would properly be qualified as euthanasia, then so would the parents' (if the parents' had so wanted, as they in fact do now, after this protracted dispute with the hospital). But my impression is that for most people criticizing the hospital this would have made a fundamental difference. Whether X qualifies as euthanasia does not seem to depend on the (theoretical) availability or non-availability of future treatment Y.

    For most people the issue therefore is not whether this is euthanasia, but whether the wishes of Charlie's parents/their appreciation of what is in Charlie's best interest can be overridden by the doctors/experts/judge. You expressly said in your post that in SOME cases the parents' wishes can be so overridden. I completely agree (some/many people don't). The big issue then is in WHICH cases can this happen. But this question cannot in turn be answered by asking whether the proposed course of action qualifies as euthanasia, since it would be euthanasia (per my point above) whether it is the parents or the hospital who decide. This is is why, in my view, the terminological issue does not have the importance you have argued it does.

    Jakob Cornides says

    July 26, 2017

    Marko:

    "...i.e. that the legality/morality of what is to be done to Charlie depends on this terminological issue."

    We should distinguish:

    The legality (under positive law) of a given act often depends on terminological issues. As I have noted with horror, under UK legislation euthanasia (even for those not asking for it) apparently is legal, precisely because it is somehow pretended that withdrawing life-saving care with the intention of ending a patient's life is not euthanasia.

    By contrast, the morality of such an act depends on its substance, not on how legislators or legal bloggers choose to call it.

    "For most people criticizing the hospital this (i.e. the decision being made by the parents instead of the hospital) would have made a fundamental difference."

    Not really. If the intention were to end Charlie's life, then it would be euthanasia, irrespective of who makes the decision. (Even if Charlie himself were able to ask for the ventilation to be withdrawn, it would still be euthanasia.)

    That said, I think that you are right in saying that there is a difference. You will agree that there is a difference between someone being euthanised because he himself actually asked for it (as was the claim, if perhaps not the reality, in the Lambert case), and someone being euthanised because parents/ doctors/ judges/ journalists/ say it is "in his best interest". In the first case it is at least in part self-determined, in the second it is based on mere presumption.

    Beyond that, I think for many people it is easier to accept that such a decision is made by the parents rather than by some state-appointed judge or guardian. I should myself not have a strong opinion about this, because I find that euthanasia (i.e. the deliberate act of killing, as opposed to "acharnement thérapeutique") is wrong under ALL circumstances. Still I believe - and I am probably not alone in this - that generally parents should in principle be presumed to be better judges of their child's best interest than any bystander, given the natural bonds of love. (That might of course be different if we were not discussing the case of parents desperately fighting for the life of their infant child, but the case of adult children deliberating about the fate of a wealthy parent from whom they might expect a big inheritance...)

    Joel says

    July 28, 2017

    what is very sad in all this, is that we are hiding behind legal concepts to justify a court decision that got it TOTALLY wrong. I am not an expert in legal issues related to dying practices and human rights and Ms. Martin and Mr. Cornides may be best placed to argue one way or another but I can't understand why the standards used to determine what is or is not in the best interest of a child patient (that is in a vegetative state) is primarily based on the fact that a life sustaining treatment is or is not futile. Surely the question should be more about whether a treatment has the merit to protect life (even if such chance is very remote). Life should always be more important than death, event more in situations where conventional medical treatments are not able to cure patient's illness. Who is it to say that Charlie may not wanted to fight at any costs and try untested medical treatments as a measure of last resort. I am totally convinced that in the case at hand Charlie's parents had and continue to have Charlie's best interest in their mind so why do we need to interject a medical authority in the form of a guardian and leave it to the court to decide what is or is not in Charlie's best interest. The message given by the domestic UK and the European courts goes against the basic values developed and nurtured during the Age of Enlightenment. Hope (even if it represents a low chance of success) and life should always come first. Instinctive and emotional considerations are as important as medical or sensory ones. It is sad moment for humanity and in particular for the affected parents who are fighting to give Charlie the dignified life he deserves.