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The Charlie Gard Case: Behind the Hyperbole

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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