The plight of the little Charlie Gard touched the hearts of people all round the world – and rightly so. And there has been no shortage of blogs and articles on the humanitarian aspect of the subject. But what I deal with here are the legal issues involved, which have been strangely ignored.
Charlie was suffering from terminal mitrochondrial disease and his parents wanted to fly him out to America for the revolutionary Nucleoside Bypass Therapy offered by the distinguished Dr Michio Hirano, which was Charlie’s only hope of survival. Although this therapy is experimental, it could possibly, according to Scientific American, have counteracted a mutation in Charlie’s genes that inhibited the mitochondria from replacing damaged DNA. But London’s Great Ormond Street Hospital refused to allow Charlie to go and instead took Charlie’s parents to court.
The court decided that Charlie’s best interests could not be represented by his own parents, and appointed a ‘guardian’ to represent him, who in turn was represented in court by a barrister who happened to be the chair of trustees of an organisation called ‘Compassion in Dying’, a sister organisation to ‘Dignity in Dying’, previously known as the ‘Voluntary Euthanasia Society’. Charlie’s parents were concerned at this appointment, because they were anxious to keep their little boy alive. ‘Compassion in Dying’ denied that there was any conflict of interest, because, unlike Charlie Gard’s case, their organisation is about ‘adults with full mental capacity’ being ‘allowed to plan their own death’. They may be right in denying a conflict of interest, but was it really necessary to choose this particular guardian?
For that matter, was it necessary to appoint a guardian at all? There was no disagreement between Charlie’s parents, who believed, as quoted in the Telegraph, that “they, as his parents, should speak for Charlie in court hearings that are deciding his fate”. This accords with the government website on ‘Parental rights and responsibilities’, which lists ‘agreeing to the child’s medical treatment’ as a parental responsibility – and of course, every responsibility has a reciprocal right.
The High Court and all the other courts involved agreed with the hospital that Charlie should not be allowed to go to America but should be disconnected from his life-support and left to die. In support of this decision, the judge cited a number of authorities which he characterised as ‘the law’ on the subject. The common thread running through these was that there was a ‘strong but not irrebuttable presumption in favour of prolonging life’. So this presumption can supposedly therefore be set aside in the face of contrary evidence. But what was the evidence? In fact, there was none.
What the court was concerned with above all were pain and suffering, and quality of life. Was little Charlie in pain? There was no way of knowing – and Dr Hirano’s treatment was not painful in any way. As for quality of life, this was so poor that it could not possibly have been made any worse by Dr Hirano’s treatment but it could have been made spectacularly better. As Charlie’s father said in evidence in court: “My son is the apple of my eye. I would do anything for him and I just want him to be given a chance. He deserves a chance.”
All the authorities cited by the judge were previous court decisions – in other words, judge-made law. But judges are not supposed to make law. Making law is legislation, which is reserved to Parliament. And there is no shortage of real law in this area, which disagrees with the court decision but which was not cited in the High Court judgments:
- The Right to Life, Article 2 of the European Convention on Human Rights, incorporated into the Human Rights Act 1998: “No one shall be deprived of his life intentionally…”
- The Children Act 1989, which envisages only two situations where the court can intervene: (a) in regard to the upbringing of a child; and (b) in regard to the administration of a child’s property and income. Neither of these situations is relevant to Charlie Gard’s case.
- The UN Convention on the Rights of the Child: Article 6: Signatories to the Convention, including the UK, “recognise that every child has the inherent right to life” and they “shall ensure to the maximum extent possible the survival and development of the child”. This is pretty strong language and must surely include resorting to revolutionary or experimental treatment if there is the slightest prospect of success.
In Britain most things come down to a question of money. But that did not apply in this case. Donations totalling £1.3 million were received, so Charlie’s treatment in America would not have cost the NHS one penny. In addition, a petition in favour of Charlie was signed by no fewer than 558,446 people. Both the Pope and President Trump came out in favour of Charlie as well. And, most significantly of all, the Appropriations Committee of the US House of Representatives unanimously (a rare event) offered Charlie and his parents permanent residency in America to enable him to receive the Nucleoside therapy – in the knowledge that no American court would claim the kind of power being wielded by the English courts.
Amidst the clamour of support for Charlie one voice was silent: that of the British government. If ever there was a time to use the nuclear option available to Parliament, this was it, because, as Lord Neuberger, President of the Supreme Court, reminded us in a recent Oxford lecture, Parliament has the power to revoke by statute any court decision. See my YouTube video: https://www.youtube.com/watch?v=OR1FtW3YBkw&t=7s.
Dr Michael Arnheim is a Barrister at Law and sometime Fellow of St John’s College, Cambridge.