Charlie Gard: the wider implications

Whilst L&RUK has been following the recent Charlie Gard case, we have not reported on the developments; the issues are beyond our remit and the medical aspects are outside our expertise. Nevertheless, the circumstances surrounding the case have raised a number of wider, more general issues, and these are considered in the following discussion. A subsequent post will explore the use of experts and evidence-based information by the consistory courts.

Background

The judgment concerning the order sought by Great Ormond Street Hospital (GOSH) was handed down on Monday 24 July, Great Ormond Street Hospital v Gard [2017] EWHC 1909 (Fam) [2 and 14]. Former appeal court judge Sir Henry Brooke has given Four reflections on the Charlie Gard case, commenting on the conduct of the case by Mr Justice Peter Francis and the important issues raised; and in The End of a Chapter on the UKHR blog, Rosalind English notes “the question arguably at the core of the Charlie Gard case … the circumstances in which the parents’ autonomy over their own child can and must sometimes be overridden by the state, in the form of its medical services, this intervention supervised by the courts”.

No doubt other legal commentators will make their own analyses of the case. In this post, however, we will examine the broader issues of: the reporting of cases which are considered newsworthy by the media or attract a substantial following in the social media; and the evidence given to the courts by the parties, their “experts” and others with locus standi.

Reporting of judicial considerations

Francis J commenced his judgment:

“[1]. … A lot of things have been said, particularly in recent days, by those who know almost nothing about this case but who feel entitled to express opinions. Many opinions have been expressed based on feelings rather than facts. …”

Much the same could be said about much reporting of court proceedings, but this is particularly problematic in any case which is subject to consideration by a number of courts. Following the initial hearing in the High Court, the case of Charlie Gard was heard in the Court of Appeal, the UKSC, ECtHR, returning to the High Court following the GOSH appeal for a fresh hearing.

With regard to social media, Francis J said this:

“[10]. …Moreover, the case had by this stage [i.e. following the letter sent by the parents’ solicitors to GOSH ‘within a few days of the decision of the European courts’ [8]] escalated to an international scale and had even involved President Trump, the Vatican and Theresa May”.

“[11]. …The world of social media doubtless has very many benefits but one of its pitfalls, I suggest, is that when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence-based…”

The issue of evidence-based information is critical to any judicial tribunal, and we consider this below in relation to evidence submitted by various parties to the ecclesiastical courts. The manner of presentation of such evidence is also critical, particularly where different opinions are being discussed.

Whilst the social media came in for strong criticism from Francis J, there were two instances in which this was of benefit to the proceedings.

First, Joshua Rozenberg’s live Twitter commentary on the court proceedings [funded by @SkyNews] provided valuable authoritative insight to the arguments raised by the lawyers and their acceptance or rejection by the court. This was of great assistance to those following developments in the court proceedings.

Secondly, the high profile of the case enabled a high level of support to be provided for the parents, which would not be available in less publicized cases. Francis J commented:

“[17]. …It is not for judges to make political points and I do not now seek to do so. However, it does seem to me that when Parliament changed the law in relation to legal aid and significantly restricted the availability of legal aid, yet continued to make legal aid available in care cases where the state is seeking orders against parents, it cannot have intended that parents in the position that these parents have been in should have no access to legal advice or representation.

[…]

Mr Gard and Ms Yates have secured the services of highly qualified and experienced legal team whose lawyers have been willing to give their services pro bono. I am aware that there are many parents around the country in similar positions where their cases have been less public and where they have had to struggle to represent themselves.

Furthermore, Connie Yates and Chris Gard raised £1.3M on a crowdfunding site which would have paid for experimental nucleoside therapy in the US. Nevertheless, global awareness of the case resulted in a number of comments “based on feelings rather than facts”. The point is well made in An open letter about Charlie Gard to House Speaker Paul Ryan [Speaker of the US House of Representatives] which concludes:

“So finally, just to re-emphasise this Mr Ryan, Mr Cruz [Senator Ted Cruz] and Mr Carlson [Fox News Presenter Tucker Carlson]: I am sure you want to be helpful, but if you are going to comment about a case like this you have to be particularly careful with your facts so that you don’t accidentally mislead or over-simplify … Our government is not trying to kill Charlie; our doctors, who have dedicated their lives to treating thousands of children, are not doing the government’s bidding by trying to kill Charlie; and of course nobody with the slightest knowledge of our legal system thinks that our judges, as they wrestle with an intensely difficult and emotional case, are the government’s stooges”.

Subsequently, Melanie Phillips has written A cruel and ignorant campaignin which she reflects on the “staggeringly ill-informed” commentary emanating from America and suggests that:

“the statement put out by the hospital after Ms Yates’s emotional words is worth reading in full. It addressed head on the key questions posed by the parents and their supporters: why not give Charlie at least the chance of further treatment? What did he have to lose? And if he had been treated months ago, would this terrible situation have been avoided?”

The points made by Melanie Phillips are echoed in the post by Charles Arthur: Charlie Gard: facts, medicine, and right-wing fictions.

Another significant consequence of the media exposure was “the unusual application by Great Ormond Street Hospital (GOSH) asking for an order, rather than a declaration, that Charlie Gard should be allowed to slip away quietly”. Rosalind English notes:

“the involvement of the White House, the Vatican, the Bambino Gesu Children’s Hospital in Rome and Dr Hirano and the associated medical centre in the USA in this story demonstrates the fact that a mere declaration carries too much ambiguity to allow the hospital staff to do what the courts have approved. The terms in which GOSH put its application were unambiguous indeed:

‘Therefore orders are sought to remove any ambiguity; orders are enforceable. Despite all of the hospitals best endeavours, this appears as potentially necessary. Not for the first time, the parents through their solicitors raised the prospect of criminal proceedings against the hospital and its staff. The Hospital understands that no court order best interests proceedings can afford it or its staff from prosecution.'”.

In the future, other hospitals and similar institutions in this situation may seek such an approach in order to safeguard their staff.

Experts and evidence-based information

Francis J stressed:

“[11]. …From the outset of [the] second hearing, I made it clear that I could only change the decision that I made on 11 April on the basis of compelling new evidence. No one has sought to assert that this approach is incorrect, nor could they, given the detailed judgment that I gave in April, having considered all of the medical evidence, and the review of that judgment by the three layers of appeal to which I have already referred. I also made it clear that I could only consider the case on the basis of evidence and not on the basis of partially informed or ill-informed opinion, however eminent the source of that opinion.

Throughout, the assessment of Charlie Gard’s condition has been subject to the consultation of several groups of acknowledged experts:

  • The declaration made by Francis J on 11 April 2017 was made on the basis inter alia of “detailed oral evidence from a number of experts, including an expert independently instructed by Charlie’s parents, who agreed with the experts from GOSH” [3];
  • A multidisciplinary meeting of “other eminent practitioners both from GOSH and from around the world” was held on Monday 17th July 2017. “There was a considerable degree of consensus but the view was taken that further scans needed to be carried out to establish whether the position that GOSH has for some time been maintaining is correct”.

As a consequence of the MRI scans, there was a consensus “between parents, the treating doctors and even Dr Hirano” [our emphasis] that “Charlie is beyond any help even from experimental treatment” [14]. Whether on not one subscribes to the analysis of Melanie Phillips or GOSH on the role of Dr Hirano, (as many legal commentators appear to), the judge made the observations [our emphasis]:

““[12]. …It seems to me to be a remarkably simple proposition that if a doctor is to give evidence to this court about the prospect of effective treatment in respect of a child whose future is being considered by the court, that Dr should see the patient before the court can sensibly rely upon his evidence. My task has always been to determine what is in Charlie’s best interests, not what benefit there could be to scientific research.”

“[15]. I remind myself, and others listening to this judgment, that the nucleoside therapy for which the parents had been contending has not even been tried on mice with the same strain of mitochondrial disease from which Charlie suffers, let alone humans.

Two evidence-related criteria relating arise from this in relation to evidence that is to be of value to a court: [i] the person submitting the evidence must have the necessary expertise, which Dr Hirano apparently was; and [ii} the evidence he/she submits must have direct relevance to the issue being considered by the court, on which Francis J was not convinced.

Postscript

Since no agreement between Connie Yates and Chris Gard, and GOSH was reached on Charlie’s end-of-life care by the deadline of 12:000 BST on 27 July 2017 Francis J issued a Declaration with a Confidential Annex which detailed Charlie’s continued treatment at GOSH, his transfer to an approved hospice and the withdrawal of artificial ventilation after the period set out in the Confidential Annex. On 28 July it was announced that Charlie Gard had died after his life-support was withdrawn soon after he was moved to a hospice.

David Pocklington and Frank Cranmer

Cite this article as: David Pocklington, "Charlie Gard: the wider implications" in Law & Religion UK, 28 July 2017, https://lawandreligionuk.com/2017/07/28/charlie-gard-the-wider-implications/
 

7 thoughts on “Charlie Gard: the wider implications

  1. A reflection rather than a comment. Watching the 10 o’clock news on BBC TV last night, I could not but help noting the contrast between the immense time, care and resources (medical, legal and judicial) devoted to one terminally ill infant in the Charlie Gard case, and the inability of our government and other world governments effectively to intervene in war-torn Yemen and prevent the daily and preventable death toll of children from cholera as a result of what is a wholly man-made crisis.

  2. I think this case is concerning for two reasons:

    1. As a matter of law, the Court does not passively sit back and let the “evidence” speak for itself. Under CPR Rule 32.1 and its statutory underpinning, the Court controls the evidence which it will admit when determining a case. Not only that, but the Court creates a legal fiction under CPR Part 35 whereby the opinion of experts is considered by the Court to be “evidence”. Given the heavy reliance on this type of expert “evidence” in these proceedings, the criticism of other “opinions” by the judge rests on the Court’s own elevated view of what an “expert” is. This is, of course, currently a controversial area and public reverence for so-called experts is on the wane. As with all legal fictions, we should be careful of how far we take them – not losing sight of the overriding objective of administering justice.

    2. There is an apparent lack of willingness to set out clear principles which would take the emphasis away from expert evidence. The result of an over-reliance on expert evidence is, in the end, the determination of the case by the experts (or a “consensus” of them) rather than by the Court. In this context, the question of “what is in the best interests of Charlie Gard” becomes solely a question of predicting the likely medical outcome of Charlie Gard’s proposed treatment – which is, in my view, a very unsatisfactory position to be in. At the very least, the Court should begin with a principled starting point which can be rebutted. It seems to me that the reason why the question of criminal proceedings against GOSH has arisen is precisely because of the unwillingness to apply principle to the case. One can see the tension: who has ultimate wardship of Charlie – his parents, the Court or GOSH? Allowing the Court to take control of the lives of children at the behest of hospitals and making decisions on their future solely according to expert opinion is possibly the most toxic position that could be taken in the eyes of informed members of the public. However, allowing parents to have the ultimate say goes against the tide of increasing state interest in the upbringing of children, beginning with compulsory education 100 years or so ago and now sitting at the brink of the “named person scheme” in Scotland.

    The interesting circularity in this is that despite the “experts” becoming the effective arbiter in this dispute, they are asking the Court to bear the legal responsibility (in order to avoid criminal responsibility). So we end up with another unsatisfactory outcome – the Court effectively defers to the experts to make the decision and the experts defer to the Court when it comes to taking responsibility. Whatever the “evidence” is, the reasonably informed bystander will see that this case leaves a moral vacuum which reflects badly on both the Court and GOSH.

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