For those whose bodies are riddled with disease, [Aclepius] did not attempt to prescribe a regimen in order to make their life a prolonged misery. Medicine isn’t intended for such people. . . even if they are richer than Midas.
Plato, The Republic, Bk III
Last month, many people, on both sides of the Atlantic, were gripped by the Charlie Gard case. The nine-month-old baby grabbed hold of countless stranger’s hearts, forcing us to question how far we would go to save the life of our child.
His parents fought all the way to the Supreme Court and lost. Baby Charlie passed away in his family’s arms on the 28th July 2017, at a hospice, shortly after his life-support was withdrawn.
For many, the case illustrated what can be a brutal parallel between law and morality. Should it be the parents who decide what is best for their child or the courts? And at what point should the court’s override parental wishes?
Charlie Gard was not the first child to be unwittingly placed at the centre of a legal battle, resulting from parental love and conviction of what is best for their child and health professionals, basing their opinion on expertise and research, stating the opposite.
And unfortunately, he will not be the last.
Hopefully, however, this case will help bring some clarity to the issue and assist legal professionals with managing these types of cases with the dignity and sensitivity they deserve.
Background to the case
Charlie Gard had been in Great Ormand Street Hospital (GOSH) for six of the nine months of his life. He suffered from a rare genetic condition called Encephalomyopathic Mitochondrial DNA Depletion Syndrome (MDDS), which progressively causes brain damage and muscle wasting.
His physicians and several external consultants unanimously agreed that there was no known treatment for the disease.
Doctor’s believed that Charlie was probably experiencing pain and any further medical treatment would be of no benefit to him. They wanted to withdraw Charlie’s life-support and let him “die with dignity.”
A doctor in the United States had offered to conduct experimental treatment on Charlie, and his parents desperately wanted to take him to America to have this done. They had raised £1.3 million to finance the trip.
GOSH opposed any attempt to take Charlie to the United States, arguing that any further treatment was futile.
Medical professionals have a legal duty to act in the best interests of a child in these situations. Where a conflict or a lack of consensus exists between the parents and the medical team, an application will be made to the court, seeking declarations and directions vis-à-vis the care of the child.
The journey through the courts
The court battle was long, gathering up media and public interest like moss on a rolling stone as the case progressed, putting enormous strain on all involved, especially Charlie’s parents.
The medical evidence as presented by Great Ormond Street Hospital in the High Court was that Charlie no longer had any movement nor any evidence of a sleep/wake cycle. Doctors were of the opinion was that there was no further treatment available to Charlie which could improve his current situation. They believed that Charlie could probably experience pain, but was unable to react to it in a meaningful way.
Charlie’s parents obtained support from an expert in the US who was prepared to offer Charlie nucleoside therapy. The evidence from the doctor in the US was that:
‘It is very difficult for me never having seen him, being across the Atlantic and seeing bits of information. I appreciate how unwell he is. His EEG is very severe. I think he is in the terminal stage of his illness. I can appreciate your position. I would just like to offer what we can. It is unlikely to work, but the alternative is that he will pass away.’
There was no suggestion that there could be any reversal of the structural damage to Charlie’s brain and the probability of benefit was described as ‘low but not zero.’
Charlie was represented by a guardian who had been appointed by the court. They argued that it was not in the infant’s best interests to travel to America to receive invasive treatment for which there was no evidence any benefit would be received.
In giving his ruling, Mr. Justice Francis acknowledged that although parents with parental responsibility have the power to give consent for their child to undergo treatment, as a matter of law, overriding control is vested in the court exercising its independent and objective judgement in the child’s best interest. In making that decision, the judge said the welfare of the child is paramount. He confirmed that the starting point is the strong presumption of the sanctity of life, and a course of action which will prolong life. He confirmed that in considering Charlie’s best interest, that phrase encompassed medical, emotional, and all other welfare issues. The judge concluded that it was not in Charlie’s best interest to be taken to the US for treatment which he described as “problematic, but possible.”
The parents appealed on the basis that Justice Francis had made an error by relying on the “best interests” test alone. They argued if different viable options of treatment were available, such preferred treatment options should only be overridden if it is established that the option would likely cause the child ‘significant harm’.
The Court of Appeal held that the High Court Judge was entitled to conclude that the experimental treatment would be of no benefit and therefore there was no viable option before the court. It also rejected the ‘significant harm’ test in this particular case but did agree it was a valid argument. However, the judges felt it was clear that even if the “best interests test were replaced with a test of significant harm,” it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement.
The case then proceeded to the Supreme Court. They rejected Charlie’s parent’s request for appeal, stating:
“…… the European Court of Human Rights has firmly stated that in any judicial decision where rights under Article 8 of the parents and the child are as at stake, the child’s rights must be the paramount consideration. If there is any conflict between them the child’s interests must prevail.”
At this point, the British government requested a further stay of the directions from the High Court to move Charlie into palliative care and remove his life-support. This was granted, and the case moved on to the European Court of Human Rights (ECtHR).
The ECtHR carefully reviewed how Articles 2, 5 and 8 of the European Convention on Human Rights (ECHR) would apply to Charlie’s case. However, it held that it would not interfere with the English Court’s decision.
It did consider whether the relevant test should be based on ‘best interests’ or ‘significant harm.’ The judges ruled that there was a broad consensus that when matters regarding a child were decided in law, the minor’s best interests should be paramount. The ECtHR went on to conclude that it did not need to determine which was the appropriate test because it was clear from the decisions of the Court of Appeal and the Supreme Court that there was, in any event, a risk of ‘significant harm’ to Charlie.
In mid-July, the parents returned to the High Court with fresh evidence that Charlie could be saved. However, a final scan made for “very sad reading.” In his final judgment, dated 24th July 2017, Justice Francis stated the parents had accepted it was now too late for their baby and had abandoned their legal fight.
What does this case illustrate regarding the extent of the court’s intervention in these types of cases?
The way this case was decided throughout the process highlights the sensitive nature the courts will apply to cases involving a conflict between parents and a child’s medical team. Expert evidence was continually sought and thoroughly examined throughout the trial.
Mr. Justice Frances made the point that in these types of cases, mediation can help parties reach a mutual understanding and help avoid some of the distress and media attention that can accompany proceedings of this nature. It is likely that this point will be picked up and mediation will play a much greater role in these types of cases in the future.
Rosie Bracher is specialist family law solicitors based in Barnstaple. We have the knowledge and expertise to advise you on all matters involving children and family law. Please contact our office on 01271 314 904 and arrange to speak to one of our team.