Mahler’s Kindertotenlieder was on Radio 3 as I drove across London a week or so ago.  It’s music I’ve always found nearly unbearable to listen to, because it’s about the death of children. The poems Mahler set to music were written by the 19^th century German poet Ruckert on the death of two of his young children from scarlet fever in 1833-4. They are poems of acute grief, and were for the most part not written to be published but as private consolation, only appearing after his death.   Mahler himself told a friend that he was sorry that he had had to write the music for the poems and sorry for the world that would have to hear them, so frighteningly sad was their content. His friend wrote that the songs gripped her as the most personal and deeply distressing things he had ever written. A few years later, Mahler told another friend that he could not then have written the songs, when he had actually lost a child. Given the poet’s and composer’s thoughts on their subject, a listener’s reticence is unsurprising.

The timing of this broadcast had a particular resonance, as the tragic story of Charlie Gard was and remains prominent in the news and public discussion and it came immediately to mind. Charlie is a very young child suffering from an extremely rare genetic condition diagnosed when he was only a few weeks old, and now on life support in Great Ormond Street Hospital (“GOSH”), the well-known London children’s hospital. His future is the subject of a legal decision and appeals from that decision in the UK and to the European Court of Human Rights (“ECHR”), contested between his parents and the hospital as to whether it is in his best interests for his life support to be withdrawn, or whether he should be allowed to undergo experimental treatment in the USA, for which his parents have raised money and a US doctor has expressed willingness to treat him.

There have been a series of posts explaining the progress of the legal dispute on the Transparency Project blog.    The most recent update is here, and the authoritative legal commentator Joshua Rozenberg (@JoshuaRozenberg) and other journalists have also live-tweeted the most recent court hearings on 10, 13-14 and 21 July 2017. These hearings resulted from the application made by GOSH on 7 July 2017 to ask the High Court to assess claims which had been made to GOSH by two international hospitals and their researchers of fresh evidence in relation to the proposed experimental treatment for Charlie. A final hearing has been directed to take place on 24-25 July 2017. The judge, Mr Justice Francis, has made it clear that the purpose of this hearing is only to consider any new evidence that is likely to have a bearing on the best interests decision which he has already made “with the heaviest of hearts”, that it is lawful and in Charlie’s best interests for artificial ventilation to be withdrawn, a decision which has been upheld through an exhaustive series of appeals.

The purpose of this posting is not to discuss the law of best interests decision-making or the rights and wrongs of the case, or the wider ethical principles which are engaged in it, for which I recommend the links to resources on the University of Oxford’s Practical Ethics blog, but to consider the implications of the reporting and discussion of this case (1) for transparency in future cases of this type, and (2) for future public legal education and understanding of the law.

Transparency

Charlie has been identified as the child at the centre of this case throughout its reported progress, which began with an application to the High Court made by GOSH on 24 February 2017 and a directions hearing in early March.   His story has since become prominent not only through the activity of his family and their publicist, and supporters in “Charlie’s army”, but also as a result of comments about him made via Twitter in early July 2017 by two world figures whose words are observed by millions of people: the Pope, and US President Donald Trump, as well as by innumerable other voices.  I cannot think of, and it is hard to imagine, any other English legal decision which does not involve the state as a party but which is essentially a private law case about an English child, which has attracted the same degree of publicity and comment and prominence in the news and social media here and abroad.

Both lawyers and non-lawyers are increasingly questioning whether it is right or necessary for the story to have had this degree of exposure, or whether greater privacy should attach to such cases in the future. This is in noticeable contrast to calls in the media – and the response to those calls from the judiciary and from organisations like the Transparency Project – for greater transparency in the family courts when making decisions about children, and in the Court of Protection when making decisions about adults who lack capacity to make decisions for themselves. Both are often inaccurately criticised as “secret courts”, with a degree of what appears to be wilful obfuscation between “secret” and “private”.

The extent to which the details of these cases should be made public involves a balance between Article 8 of the European Convention on Human Rights (right to respect for private and family life) and Article 10 (freedom of expression), in which neither starts with greater weight over the other. Cases involving serious “life or death” medical treatment are usually heard in public, recognising the genuine public interest in the legal and ethical issues that they raise, and judgments in them are published and accessible online via BAILII or the judiciary.co.uk website. But even cases heard and reported in public may be and frequently are subject to various reporting restrictions, in particular restrictions which prevent the identification of the child and of the individual doctors and other people who are central to the narrative. For example, in the recent decision of Mr Justice Baker in the Family Division in An NHS Hospital Trust v. GM [2017] EWHC 1710 in which an order was made authorising doctors not to make any further neurosurgical intervention or to attempt cardiac resuscitation of a 3 month old child “with a very grim prognosis”, both the hospital and the child concerned are anonymised. This case appears to have had very little news coverage or discussion at all, despite the presence of a Press Association representative, and the fact that it involved a very ill baby, the opposition of parents to the doctors’ proposals, and very similar life-and-death ethical issues (although not raising any issue of experimental treatment).

In Charlie Gard’s case, the Transparency Project wrote in its first piece on the case that it was “easy to see that there could be no purpose or justification” in maintaining the anonymity of a very young child who was unconscious.  Such a child would not be at the direct risk of harm through identification that school-age children might be, for example as a result of bullying or embarrassment at the knowledge of private family issues being published and identifiable as relating to them.  Another reason why it may have been decided that Charlie’s name should not be anonymised is that his parents had already begun their fund-raising campaign and contacted a publicist “to get their story out to the world’s press” as described by their publicist in this account. They were legally perfectly entitled to do that, and their publicist explains that they followed her advice not to seek publicity until a court hearing had become inevitable.  She writes:

With media coverage it would mean the story and ethics around it – surely in the public interest – would be in the public domain and not going ahead secretly behind closed doors.

This is a publicist’s statement and not a lawyer’s, so it doesn’t attempt to distinguish between what is in the public interest as a lawyer would see it, and what interests the public as a non-lawyer or journalist would see it, and it doesn’t refer to anything in between “the public domain” and “behind closed doors” i.e. the possibility of the story and the ethical issues it raises being in the public domain but without identifying Charlie and his family.  It also seems to mistakenly assume that the hearing would be “behind closed doors”.  She goes on to say that

In addition if the family were to raise the money needed to take Charlie to the States for treatment it would need a massive input of generosity from the public to make it happen.

It would be understandably difficult to reach that level of generosity without identifying Charlie and personalising the campaign to raise money for his treatment.  Media publishers also know that a story involving people who are identifiable and who can be shown in photographs as well as described in text will interest the public more than a story involving people who remain anonymous.

Has the identification of Charlie as an individual, rather than his anonymisation behind a set of initials been in his best interests?

As a very young and sadly unconscious child, with no awareness of the legal proceedings at all, he is primarily unaffected by publicity. The pathos of his story, and of the photographs of him with his parents, who have been devoted to his care and to prolonging his life, have moved many people to take an interest in the case and the issues it raises, and to express support for the family and for their successful fund-raising for the treatment they wish him to have. His parents made the decision to take the story to the public and understandably (apart from a request for privacy following the rejection of their application to the ECHR, and through another family member, distancing themselves from statements made apparently on their behalf, but it appears without their authority, by Alasdair Seton-Marsden on 22 July) have not commented on how they now regard that decision. Once a story is public, there is very little limit on how it is presented and discussed, particularly in a world which includes international social media. If greater reporting restrictions had been imposed, Charlie’s family  might have felt understandably resentful that they were not free to tell their story in full. The judge has made it clear that he will decide the case on the evidence and not on tweets, or by necessary implication, any other public statement or comment made outside court, so the weight of comment and publicity will make no difference at all to the actual decision that he takes.

Beyond Charlie and his immediate family, and the courtroom, the publicity of the story has had some unhappy consequences.

Firstly, it has led to appalling abuse, even extending to death threats, rightly deprecated both by the judge at the hearings on 14 and 21 July, and in the public statement made by GOSH on 22 July, against doctors and other hospital staff at GOSH, and to distress for other parents with children being treated at GOSH. There has also reportedly been equally unforgivable abuse of members of Charlie’s family, and of the advocates acting for GOSH and for the CAFCASS-appointed guardian representing Charlie himself, and of the judge. The tone of many discussions is increasingly febrile.

Secondly, it has been taken up by many people who appear to primarily wish to promote a specific political agenda, particularly in the USA, where healthcare policy is currently a subject of acute legislative debate.  Much of the commentary, even from high-ranking politicians such as the Vice-President and House Speaker Paul Ryan, is based on an entirely incorrect factual premise that appears to be widely believed. The original judgment of Mr Justice Francis published on 11 April 2017 made it clear that the case had never been about affordability of treatment, yet innumerable statements have been made by American politicians and citizens that the decision is evidence of the harm caused by “socialised medicine”. Matthew Scott’s 16 July open letter to Paul Ryan, who had tweeted “health care should be between patients & doctors – govt has no place in the life or death business”, eloquently dissects these misconceptions about the case. Much of what has been said by commentators in America and elsewhere on social media and in published newspaper articles shows both astonishing ignorance of life in the UK and ludicrous disregard for the sovereignty of the UK’s courts acting within their jurisdiction. Many people in an English-speaking country with which the UK has a “special relationship” appear not to understand that our government has no involvement in deciding the case but is entirely independent of the judiciary and courts, or that a country which has had a Conservative or Conservative-Liberal Democrat coalition or New Labour government since 1979 can only laughably be described as “socialist”.

Similarly, an open letter written by a number of MEPs who are members of the European People’s Party Group in the European Parliament, of which the only UK signatory was the formerly UKIP, now Independent MEP Steven Woolfe, expressing dissent with the ECHR and UK courts’ decisions, reflects the views of its conservative Christian signatories and cannot be said to express the mainstream view of UK political leaders or public opinion in the UK as a whole.

The case has stimulated a wider debate about the ethical principles engaged in it, but this is a debate which bioethicists and the public could no less have participated in if Charlie’s identity had been anonymised, but the ethical issues and the court’s approach to them published.

Finally, for some people, the news story and public debate which has taken on a life of its own increasingly peripheral to the child at the centre of it, has brought a sense of uncomfortable over-intrusion into a family tragedy and of painful over-exposure to Charlie’s parents’ confrontation with decisions that no-one would ever wish to have to make. I think some of the calls for greater privacy come from this discomfort, and a sense that, like Ruckert’s decision not to publish his poems, and Mahler’s declaration that he could not have written his songs after the actual death of one of his children, there are some experiences that are too painful to express and share more widely and which for some people will always call for some privacy.

Public understanding of the law

A principal purpose of transparency in court proceedings is to promote public understanding of the law and trust in the work of courts and judges in the administration of justice. Lawyers who support transparency are always hoping that it actually does serve this purpose, and dismayed by evidence that it does not. Public understanding is especially important in a case that deals with decision about life and death. As Lord Justice Hoffmann (then in the Court of Appeal) said in 1992 in the case of Tony Bland (the teenager who suffered brain damage in the crush at the Hillsborough stadium disaster and remained in a persistent vegetative state until his death following the decision permitting the doctors to withdraw life support from him):

The decision of the court should be able to carry conviction with the ordinary person as being based not merely on legal precedent but also upon acceptable ethical values.

A lot of the public comment and discussion about this case shows that the court’s original decision, upheld on appeal, doesn’t carry conviction with every “ordinary person”. For some, the reason for that will always be that they don’t accept its underlying ethical values – either because they consider that life-support should not be withdrawn in any circumstances, or should not be withdrawn when there is any alternative treatment possibility, or because they do not accept that anyone other than parents should be entitled to make decisions about children’s medical treatment. But it is important that people who do or would accept that there are circumstances in which it is right to withdraw life-support, and that the court should ultimately rule on a child or incapacitated adult’s best interests, understand what the decisions made by judges say and do. The judgments in this case are all publicly accessible. They set out the facts, not in an emotionless way but one which recognises the sadness of the story and difficulty of the decisions to be faced, and the individuality of the family at the heart of it; the legal principles, and the reasoning which leads to the decision ultimately made. The first judgment, that given by Mr Justice Francis on 11 April 2017, gave his decision and summary reasons, for quick reading and understanding, before going on to the full judgment. GOSH has also published its advocate’s position statement prepared for the 13 July hearing – accurately described by a lawyer unconnected with the case as “precise, clear, powerful and moving” and by non-lawyers as “very clear and informative” and “respectful of Charlie and his family”.

But for all this transparency and accessibility, it’s clear that quite a lot of the public debate about the case hasn’t been informed by careful and open-minded reading of the judgments or this position statement, or by wider understanding of how courts, judges and independent advocates work. I have read many comments which have been both vicious and vacuous in their attitude towards the work of the court – ignoring or contesting its record of facts, and challenging its impartiality. There is a great deal for the government’s new public legal education panel to do to help some people understand this sort of case and the roles of everyone involved in it better. And a greater concern than pure ignorance is the evidence of mistrust and denigration of the law itself, hand-in-hand with some of the denigration of medical expertise at GOSH, because it is seen to fail to satisfy what an emotional impulse demands. There is a sort of immature belief in fairy-tales and miracles in preference to a coherent, universal system of law and impartial judgment, expressed by this comment:

What a sad world we live in, where judges merely look at legal arguments set out by professionals and not into the eyes of a baby they have the power to save.

Whatever the ultimate decision and its aftermath in this sad case, it has provided much to reflect on in similar future cases. If it strengthens arguments for anonymisation, this should not and must not be at the expense of transparency in the service of its proper purpose.

Feature pic : Gustav Mahler as child (wikimedia)