The plight of Charlie Gard has attracted worldwide attention that has unfortunately seen his increasingly desperate parents pitched against the medical profession.
Who is Charlie Gard?
Charlie was born on the 4 August 2016 with an exceptionally rare genetic condition called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”.
Great Ormond Street Hospital (GOSH) said the moment Charlie was diagnosed, his prognosis was bleak. Unfortunately there is no cure for Charlie’s condition which is terminal. Whilst GOSH explored various treatment options, it was found that the experimental treatment offered by one hospital in the US would not improve Charlie’s quality of life.
What the law says
In a nutshell the law says the best interests of the child always come first. However, deciding what those are can unfortunately be a matter of contention.
What appeared extraordinary to many was that, although the court rightly felt it had a duty to protect Charlie, it had no power to make sure that his parents’ views as to what was in his best interests were properly represented.
His parents were not entitled to legal aid and it was only through solicitors acting for him pro-bono (meaning that they were prepared to work for free) that they were able to have the benefit of legal representation. Fortunately they did not end up, as people in private law cases often do, being faced with the choice between representing themselves or not going to court at all.
Why was there a court process?
When parents do not agree about a child’s future treatment, it is standard legal process to ask the courts to make a decision. In this case, the parents agreed among themselves but the hospital did not agree with them.
What happened in the court?
GOSH applied to the High Court for judges to decide whether withdrawal of ventilation and providing palliative care instead of experimental treatment was in Charlie’s best interests.
The High Court ruled this was in Charlie’s best interests on 11 April 2017.
The Court of Appeal ruled on 25 May 2017 that the High Court decision still stood and that it would be in Charlie’s best interests to be allowed to die with dignity.
The parents then applied to appeal to the Supreme Court. The Supreme Court ruled on 8 June 2017 that the Court of Appeal and the High Court decisions still stood and that it would be in Charlie’s best interests to be allowed to die with dignity.
The courts have been clear that, in their view, Charlie has been served by the most experienced and sophisticated team that the country’s excellent hospitals can offer (including being under the care of a world leading expert on mitochondrial disorders).
Parental Rights of Charlie’s parents?
Although Charlie’s parents have parental responsibility (defined in s.3(1) Children Act 1989 as being “all the rights, duties, powers, responsibilities and authority which by law a parent of a child has in relation to the child and his property”), overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interest.
The High Court and Court of Appeal decision have ruled it is not in Charlie’s best interests to proceed with the experimental treatment in the US and it was unfortunately only left to decide whether Charlie’s life support will be withdrawn at a hospice or at his own home as his parents have requested.
Up until only 26 July 2017, lawyers acting for Charlie’s parents were still in dispute with doctors over the detail of care plans.
As of Thursday, 27 July 2017, the court has formally approved the plan for Charlie to be moved to a hospice and allowed to die.
High Court decision can be found at http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html
Court of Appeal decision can be found at http://www.bailii.org/ew/cases/EWCA/Civ/2017/410.html
The Supreme Court Judgement can be read at charlie-gard-190617