Legal update: The case of Charlie Gard: medical treatment decisions & the limits of parental autonomy
In recent months the tragic case of baby Charlie Gard has attracted widespread media coverage both nationally and internationally, with the perceived ‘rights and wrongs’ of judicial decisions authorising Charlie’s life support to be withdrawn being widely debated. The question which is repeatedly asked is ‘Why can’t parents have the final say in their child’s medical treatment?’
Eleven month old Charlie was born with a rare inherited mitochondrial disease – encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) – a progressive life limiting condition for which there is, currently, no known cure. As a consequence of this disease Charlie suffered severe progressive muscle weakness which meant that he was unable to move his arms or legs, open his eyes, or breathe unaided. In addition he had congenital deafness and an epilepsy disorder which had resulted in severe brain damage due to persistent seizures. His heart, liver and kidneys were also affected albeit to a lesser degree. Charlie’s life was being sustained by means of artificial ventilation without which he could not survive.
Charlie had been an inpatient at Great Ormond Street Hospital (GOSH) since October 2016. In February 2017 GOSH applied to the High Court for an order that it was in Charlie’s best interests for artificial ventilation to be withdrawn to enable him to die a peaceful dignified death. Charlie’s parents opposed the application, instead seeking permission to take their child to the US for experimental nucleoside therapy. After hearing evidence from the treating clinicians at GOSH as well as independent MDDS experts and the US doctor offering to provide nucleoside therapy, the High Court concluded that it was not in Charlie’s best interests to undergo a treatment described as futile. The court ordered that it was lawful and in Charlie’s best interests for artificial ventilation to be withdrawn.
Charlie’s parents pursued a series of unsuccessful appeals through the Court of Appeal, Supreme Court and finally the European Court of Human Rights all of which upheld the original High Court decision. In July 2017 Charlie’s parents gave up their legal fight after the US doctor came over to the UK to examine Charlie and review his MRI scans (for the first time) and announced that it was too late to give Charlie nucleoside therapy. Charlie was transferred to a hospice where ventilation was withdrawn and death ensued.
In law what entitles the court to intervene to override the wishes of parents in such cases?
In general, English law gives parents a broad discretion to make medical treatment decisions on behalf of their incompetent child and court intervention to override such decisions is rare. In all but the most routine day-to-day treatment decisions there is an expectation that parents will act in their child’s best interests. The court will only intervene where a treatment decision taken by parents is deemed to be manifestly contrary to the child’s best interests in particular when the child is likely to suffer significant harm or even death as a consequence.
The Children Act 1989 gives parents parental responsibility for their child. Parental responsibility enables parents to take decisions on behalf of their child until they gain sufficient maturity and understanding to make those decisions for themselves. Such decisions routinely include those relating to medical treatment, education, residence, and religion as well as more mundane day-to-day decisions which enable family life to function smoothly.
The law is clear that parental responsibility exists for the benefit of the child – not the parents. Parental responsibility does not confer on parents an absolute right to make decisions on behalf of the child – overriding control is vested in the court.
In practice, the majority of medical treatment decisions taken by parents are respected by clinicians and are rarely challenged in court. Those cases that do reach court invariably concern intractable disputes between parents and clinicians involving the giving or withholding of life-sustaining treatment or where the benefits and burdens of a proposed treatment are finely balanced. The court then becomes the decision maker of last resort.
When the court is asked to make a decision concerning a child, English law dictates that the welfare of the child shall be the court’s ‘paramount consideration’ – this requires the court to weigh up and determine the child’s best interests from an objective standpoint. This is by no means a straight forward undertaking. In the case of Re Wyatt  EWCA Civ 1181 Mr Justice Wall explained the role of the judge in this context:
The judge must decide what is in the child’s best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the patient. There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable. The term “best interests” encompasses medical, emotional, and all other welfare issues. The court must conduct a balancing exercise in which all the relevant factors are weighed…
Understandably, most parents feel that they are best placed to determine what is in the best interests of their child rather than the court.
The legal team representing Charlie’s parents argued that the court had no right to interfere with parental medical treatment decisions save where such decisions placed the child at risk of significant harm. They argued that in a situation where the parents propose a viable alternative treatment option then that proposal should not be overridden by the court (unless it places the child at risk of significant harm). The Court of Appeal dismissed these arguments reiterating that it is the child’s best interests which are at the heart of the judicial decision making process – not the reasonableness or otherwise of the parents preferred treatment option. In his judgment Lord Justice McFarlane explained:
When thoughtful, caring, and responsible parents are putting forward a viable option for the care of their child, the court will look keenly at that option… The court evaluates the nitty-gritty detail of each option from the child’s perspective. It does not prefer any particular option simply because it is put forward by a parent or by a local authority. The judge decides what is in the best interests of the child by looking at the case entirely through eyes focused on the child’s welfare and focused upon the merits and drawbacks of the particular options that are been presented to the court…in the end it is the judge who has to choose the best course for a child.
While the starting point in any consideration of whether it is a person’s best interests to withdraw life-sustaining treatment (be they an adult or a child) is the strong presumption in favour of a course of action which will prolong life, in Charlie’s case this presumption was rebutted. The High Court, Court of Appeal, Supreme Court and European Court of Human Rights were unanimous in their judgment that the nucleoside therapy sought by the parents was not a viable treatment option as the prospects of success were considered to be so ‘close to zero as makes no difference.’ In other words the treatment was considered to be futile and as such was not in Charlie’s best interests. The parents’ wishes were overruled by the court.
During the course of the legal proceedings the family’s legal team argued that – the imposition of withdrawal of life-sustaining treatment upon parents who hold a legitimate contrary view favouring an alternative viable treatment – amounted to a breach of their right to respect for private & family life under Article 8 of the European Convention on Human Rights. This argument was dismissed by the Supreme Court and subsequently the European Court of Human Rights. Lady Hale stated:
The European Court of Human Rights has firmly stated that in any judicial decision where the rights under Article 8 of the parents and the child are at stake, the child’s rights must be the paramount consideration. If there is any conflict between them the chance interests must prevail.
This approach is mirrored in the United Nation’s Convention on the Rights of the Child which states at Article 3.1 that in any official action concerning a child, the child’s best interest shall be a primary consideration.
Charlie’s case attracted widespread international media/social media coverage which unfortunately included ill-informed condemnation of the decisions taken by GOSH and the UK courts. In other legal jurisdictions, including the US, the rights of parents to decide what is best for their child are much more enshrined, which has no doubt fuelled much of the public misunderstanding.
It is important to note that throughout the judicial process Charlie Gard was separately legally represented by an independent Guardian who was wholly supportive of the stance taken by the clinicians at GOSH and the judgments of the courts.
A role for mediation?
At the final court hearing in the Charlie Gard case Mr Justice Francis underlined the important role that mediation can play in resolving such disputes and minimising the need for court involvement:
I recognise, of course, that negotiating issues such as the life or death of a child seems impossible and often will be. However, it is my clear view that mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other’s positions.
In medical treatment dispute cases, mediation can provide an effective alternative to the court process or, at the very least, has the potential to narrow the issues between the parties before court proceedings and prevent a complete breakdown in parent/doctor relationships.
What impact will the Charlie Gard case have on medical practice?
The fallout from the Charlie Gard case is likely to be keenly felt by those NHS clinicians routinely required to make difficult treatment decisions on behalf of very sick children. Sadly, the adverse publicity surrounding Charlie’s case is likely to fuel a longer term trend towards greater scepticism of medical opinion which will inevitably see decisions of clinicians increasingly subject to challenge. This serves to highlight the importance of effective communication between clinicians and patients – and in the case of children, their parents. A breakdown in communication will often lead to a loss of trust, and this is the root cause of many parent/doctor disputes that end up in court. It is important always to carefully manage parents’ expectations when discussing treatment options and prognoses. These are desperately difficult highly emotive cases and, sadly, on occasions intractable disputes will be unavoidable despite best efforts on the part of treating clinicians. That is when court intervention is required.