File 20170711 29267 bzvxv.jpg?ixlib=rb 1.1

Charlie Gard: who is best placed to decide his fate?

Charlie Gard: who is best placed to decide his fate?

The tragic case of Charlie Gard will be reconsidered by the High Court in London on July 13. Since its first ruling in April, baby Charlie’s plight has attracted international attention, including comments from the Pope and Donald Trump.

The case is significant for its poignancy and its international profile, but its legal significance arises from the dispute between Charlie’s parents, Chris Gard and Connie Yates, and his medical team. This dispute includes their opinions on Charlie’s condition and the likely benefits of an experimental medical treatment. Such disagreements are uncommon, but when they arise there are a number of reasons why they need an independent arbiter to resolve the competing issues.

Charlie suffers from a rare and debilitating illness called encephalomyopathic mitochondrial DNA depletion syndrome. As a result of his condition, Charlie has already suffered irreversible brain damage. His parents wish to take him to the US for an experimental treatment, called nucleoside therapy. But both courts and the doctors at Great Ormond Street Hospital have so far concluded that it would be “futile”.

Charlie’s parents have the legal capacity to consent to the treatment or to the withdrawal of treatment on behalf of their child and some would argue that the parents’ view should prevail. But as Lord Justice McFarlane stated in the Court of Appeal:

It is well-recognised that parents in the appalling position that these and other parents can find themselves may lose their objectivity and be willing to ‘try anything’, even if, when viewed objectively, their preferred option is not in a child’s best interests.

Equally parents and patients should not be left without the ability to review the expert decisions of medical professionals. In this sense all power requires checks and balances even that wielded by those with nothing but the best of motives. The question then becomes who is best placed to resolve these competing but equally well-intentioned viewpoints?

Well intentioned. Andy Rain/EPA

Who decides and why?

As justice secretary, David Lidington, recently said, the government has “no role to play” in the resolution of this case. Rather the UK’s constitutional arrangements, government policy and the law all require that the courts are used to resolve such disputes. No one is above the law and the rule of law itself means that medical decisions are reviewable in the courts.

Importantly, when doing so, the courts are not asked to find in favour of either the parents or the medical team. Nor are they asked to consider what they would do as a parent or doctor. While they will consider evidence from both parties, the sole issue for the court is to identify what is in the best interests of the patient.

This process ensures that medical opinion is rigorously tested and, where appropriate, it provides legitimacy to the difficult decisions that doctors are called on to make about life and death.

For a liberal democracy it is crucial that all evidence is heard in a public forum that is independent and impartial, subject to an appeals process, and which regards the best interests of the patient as the paramount consideration.

The next hearing

So far the courts have concluded that it would not be in Charlie’s best interests to undergo the experimental treatment and that it would be in Charlie’s best interests, and therefore lawful, for his life support to be withdrawn. Before the court could change this view, additional evidence would need to be produced that undermined its earlier conclusion that the proposed treatment would be futile. The purpose of the July 13 hearing is to explore whether such evidence exists.

While the case has been emotionally fraught, evidentially it has been relatively straightforward as all the UK medical experts, including an independent consultant paediatric neurologist instructed by the parents, have agreed that the experimental treatment would have no benefit. Even the US doctor offering to treat Charlie agreed that the treatment had not been tested on Charlie’s exact condition. Mr Justice Francis summarised his evidence as follows:

While there was reason to be hopeful that the treatment might make a modest difference to life expectancy, it almost certainly could not undo the structural brain damage that had taken place.

If fresh evidence is now produced that supports the treatment and that evidence is disputed by the hospital doctors, the judge will have a much harder judgment to make. However, in a society that recognises the fundamental importance of the individual citizen and their human rights, it is a task that properly falls to the courts and no other.