What is happening now on the case of terminally ill baby Charlie Gard?

We’ve written about Charlie’s case before. This is an update, focusing mainly on recent developments, and recent press coverage and social media comment on the case, much of which has been misleading or poorly informed.

The current situation

There was a further hearing last week before the original judge, Mr Justice Francis. He briefly heard evidence by video link from the doctor in the USA who is offering to treat Charlie with experimental nucleoside therapy. That expert is visiting the UK this week at the request of the judge to examine Charlie and to meet with other medical professionals involved in Charlie’s care to discuss his case. See Daily Mail report here which gives an up to date account of what is happening. His mother will, unusually for this sort of court led meeting, be present at the meeting. There will be a further hearing next Tuesday (25 July).

Mr Justice Francis has made it clear that he will reconsider his decision if there is compelling new evidence that the prospects of the proposed treatment will benefit Charlie. Whether that evidence will materialise is far from certain at present – the expert has indicated a 10% chance of improvement in the patient group treated so far, but those patients have similar (but different) conditions, the expert has yet to examine Charlie, and there is a degree of dispute / uncertainty about whether or not Charlie has irreversible brain damage.

The media and political circus around Charlie Gard

Charlie’s case has become very politicised, and has been the subject of a lot of comment from international public figures, including Donald Trump, US Speaker Paul Ryan and the Pope. Katie Hopkins has also had her say. Not all of that comment has been well informed. Some of it seems to have been driving significant worries on the part of the parents and particularly sections of the public about what is happening in the Gard case. Some mainstream news media have themselves raised concern about the politicisation / recruitment of Charlie’s case to support other causes – see for example The Times – Charlie Gard and the pro life lobbyists.

Some of the misunderstandings / inaccuracies are :

• Charlie as a hostage of the state / a single healthcare provider (NHS) / state wants to allow him to die:
  • this seems to emanate from the US where the NHS is poorly understood and where other political issues around the US healthcare system / Obamacare are distorting the commentary on Charlie’s case. Charlie continues to be treated by the NHS and will continue to be treated unless permission is given for his care to be transferred elsewhere. The cost of his treatment is not an issue (the parents have the money for him to be treated) – the only issue is what treatment is in his best interests. The doctors have simply asked the court to resolve their ethical dilemma arising from the fact that they and Charlie’s parents disagree about what treatment would be in their patient’s best interests.
• Allegations of government interference:
  • The NHS is a state funded healthcare system but clinical decisions are independently made. Here the clinicians have asked the court to help resolve the dispute rather than act either against their conscience or against the wishes of those who hold responsibility for Charlie. The Government was asked to interfere – it declined, quite properly. It is no part of the government’s role to interfere here – it is the decision firstly of the medics and family (and only if they cannot sort things out, the decision of the court).
• Charlie’s barrister has a conflict of interest (see example news article raising this issue here:
  • Charlie is represented by his own childrens’ Guardian via CAFCASS. The Guardian in turn instructs the Official Solicitor to represent Charlie on her behalf. The Official Solicitor has instructed counsel (a barrister) to represent Charlie’s Guardian’s views at court about what would be in Charlie’s best interests. The things that Charlie’s barrister is saying at court are an expression of what the guardian rightly or wrongly thinks would be in Charlie’s best interests. The personal views of the barrister instructed (including her role in a charity related to end of life issues) are not relevant. If the barrister was putting forward her own views instead of the views of the Guardian on Charlie’s behalf we would expect her to be replaced. She does have the duty to explain the law to her client (the guardian), but it is no part of her role to impose her views on the guardian or the court.

We’ve just sketched out just some of the emerging challenges and issues above, wth a very brief response. The materials we suggest below may help those who are interested to reach their own conclusions:

Where can I read more? 

There is an enormous amount of material out there. We think the following are some key documents and views for understanding this case a bit better:

• Joshua Rozenberg QC attended the hearings last week and live tweeted them in detail. They provide an excellent insight into how the hearings unfolded. See @JoshuaRozenberg.
• Katie Gollop QC’s position statement prepared on behalf of Great Ormond Street Hospital for last week’s hearing can be read here.
• Matthew Scott (@barristerblog) wrote an open letter to US Speaker Paul Ryan, very politely correcting some of the misapprehensions and confusion in his own comment on the Gard case. It provides a very clear myth busting explanation of some of the commentary from the USA.
• Melanie Phillips has written twice in the last week or so about this case : see The hijacking of tragedy and The Calumny against Great Ormond Street Hospital
• Matthew Parris wrote about the best interests test in The Times here. A reply to counter his proposal came here.
• The view of a consultant paediatrician in the Independent As a paediatrician, I can tell you that the case of Charlie Gard isn’t as black and white as it seems
• Allan Norman of @CelticKnotTweet at the Transparency Project with The Supreme Court Is Wrong on Charlie Gard and Withdrawal of Treatment
• Allan Norman of@CelticKnotTweet at the Small Places with Charlie Gard and the Magical Mantra of Best Interests
• Allan Norman of@CelticKnotTweet at the Transparency Project with Charlie Gard – What Did The European Court Actually Say and Why?
• Dr Mary Neale, senior lecturer in law with The Charlie Gard case and ‘best interests assessment‘
• Daniel Sokol, medical ethicist and barrister with The Charlie Gard case—an ethicist in the courtroom at BMJ Opinion

Commentary about this case has moved from the basic legal framework to the moral and ethical issues which underpin the law. Some of that commentary has been thoughtful and intelligent, wondering if we could somehow do better or find a more humane solution – whilst other commentary has been critical of the role of judges, the law, of the hospital and medics, of the NHS and of the government – and has demanded that parental wishes should trump all and that neither government nor courts should not be involved in making decisions for children as vulnerable as Charlie.

On Tuesday next week we expect that Joshua Rozenberg will again be live tweeting the hearing for those who wish to follow events as they unfold.

Reporting restrictions

Unusually, the only reporting restrictions in this case protect the doctors treating or potentially treating Charlie. They must not be named. In the course of last week’s hearing the US doctor (Dr Hirano) agreed to his identity being published and so that restriction has been lifted. That happened shortly after it was said that the doctor’s name was circulating abroad.

In Charlie’s case there is no specific information available to tell us what the rationale was for permitting the identification of Charlie, but it is clear that a fundraising campaign in respect of the costs of the nucleoside treatment was underway before the court case commenced – and so it would have been practically difficult, and would have frustrated the legitimate attempts to fundraise to retrospectively impose a restriction on the publication of Charlie’s identity as a subject of proceedings.

Although the reporting restrictions regarding professionals appear to have been in place since earlier on before the case really attracted international attention and before the emergence of “Charlie’s Army” of campaigners, it was reported last week during the hearing that doctors at Great Ormond Street hospital (the treating team) had been the subject of threats. It is likely therefore that those pre-existing restrictions will remain in place. The parents have condemned the threat or use of violence by their supporters.

Feature pic : Royal Courts of Justice courtesy of Juuso Herranen on flickr (creative commons licence) – thanks!