We last wrote about the case of Charlie Gard when the European Court was still considering Charlie’s parents’ application. Since then the European Court of Human Rights (ECtHR) have rejected the application as inadmissible (decision here), meaning that the parents have no further route of appeal open to them, and the medics at Great Ormond Street Hospital are permitted to withdraw life sustaining treatment. The Independent was one of the few papers to tackle the legal and moral issues in this thoughtful way following the ruling : The instincts of Charlie Gard’s parents should echo in courts.

According to reports in the mainstream media the life support treatment has not yet been withdrawn, and having initially planned to withdraw life support on Friday 29 Jun, subsequent reports say that GOSH have given the parents more time to say their goodbyes, and via a youtube video the parents tell the world that the hospital would not agree for Charlie’s parents to take him home to die. Such is the human interest in this case that even the Pope is reported to have intervened.

See for example :

• Mail : Pope Francis helps Charlie Gard’s parents win more time to say goodbye to their dying son – and create ‘precious memories’ – as the Vatican says it is NEVER right to deliberately end a human life

• Telegraph : Charlie Gard’s parents spend last days with their terminally-ill baby son

• Mirror : Charlie Gard’s devastated parents given more time to say goodbye to their terminally ill son (which links to the video)

For those wondering why the ECtHR said the appeal was inadmissible, it is because the ECHR gives a wide “margin of appreciation”. In layman’s terms this means the European Court will give a national court a bit of leeway in terms of how it interprets the European Convention on Human Rights when it goes about applying that law in practice. It will only interfere with the decision of a national court if it has gone pretty far off track. Here the European Court thought that the British judicial process had been very thorough and “meticulous”. It considered that each of the grounds presented by the lawyers acting for the parents was “manifestly ill founded”.

Meanwhile, some lawyers have expressed frustration that the judgment of the ECtHR leaves open certain legal questions which may mean there is a lack of clarity about the law in future cases. See this thread for example, from Allan Norman (@celticknottweet, who wrote a blog about this case for us here, before the ECtHR decision was known) :

The parents had argued on appeal that where there was an alternative treatment option put forward by the parents that choice should only be overridden where it would cause significant harm – they said that to simply take a “best interests” decision would interfere with their rights to make decisions as parents – in essence they said that as long as their plan wasn’t actively harmful they should be allowed to get on with it, as Charlie’s parents. The problem with this argument was that the High Court had already decided (based on the medical evidence it had heard) that the alternative treatment option was pointless, and therefore wasn’t really an alternative option at all.

The original High Court judge who made the decision that has now been appealed three times, did not use the words “significant harm”, although it is implicit in his judgment that he accepted the medical evidence which suggested that Charlie would suffer harm from continuing treatment. The Court of Appeal (the first appellate court) said that the logical conclusion of the unanimous medical evidence was that the US treatment would expose Charlie to “treatment [that] would be likely to expose him to continued pain, suffering and distress”, and that “It [was] clear… that if the judge had been invited to form a conclusion on whether Charlie was or was not suffering significant harm currently, that finding would have been made”. So, not only was there no real alternative treatment option, but the “option” proposed would be actively harmful. The Supreme Court on the second appeal said that the concept of “significant harm” that the parents relied upon was not really relevant – it comes from s31 Children Act 1989 which applies when social services (not hospitals) wish to take action to protect a child from significant harm, usually by removal from the parents car and by the sharing of decision making power. That was a different scenario from one where medics were asking to stop a treatment they were giving because they didn’t think it was ethical to continue it. And again, the Supreme Court took the view that even if the test was significant harm it wouldn’t help the parents – because their plan would be likely to expose Charlie to significant harm.

The ECHR judgment is based on the working assumption that Charlie would suffer significant harm as a result of the continuation of his life sustaining treatment, and that therefore it was not in his best interests for it to continue. Some lawyers have complained that it doesn’t deal with the question of whether or not in a similar case involving two competing treatment options where the parents’ chosen option would not expose the child to the risk of significant harm, the answer would be the same – that is to say would the decision of loving parents still be overridden by the courts?

No doubt these legal issues will rumble on until another case arises that requires that very question to be answered – we don’t know when quite the same issue will arise or be resolved, but news reports of another case with some similarities this week are a reminder that these sorts of difficult decisions have to be made by High Court Judges with some regularity where parents and medics disagree about treatment : see Daily Mail Judge rules doctors can limit treatment to brain-damaged three-month-old boy in emergency hearing despite father’s ‘profound’ plea that he had ‘promised my baby life’ (There is no judgment in this case available yet, but it is likely to show on BAILII soon. According to the report there will be a further hearing on Monday, as this was just a holding order made at an emergency telephone hearing – although the hearing was by phone it was held “in public”, so the court made arrangements for a journalist to attend by phone).

In the meantime Charlie’s family are going about the heartbreaking business of saying good bye to their darling son who they have fought so hard for.

Feature pic courtesy of Abhijit Chendvankar on Flickr (via Creative Commons Licence) – thanks!