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?
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.
The Conversation , Nicholas
Clapham, Teaching Fellow, School of Law,
University of Surrey
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