Following a prolonged and publically fought legal battle, Charlie Gard sadly passed away on 28 July 2017, following the court ordered removal of his artificial ventilation. Charlie's parents argued throughout the majority of the proceedings that it was not in his best interests for the artificial ventilation to be withdrawn, and that he would benefit from experimental treatment in America.
The case was appealed right up to the European Court of Human Rights, where it was held that a child's best interests are paramount, and that it was therefore not in Charlie's best interests for artificial ventilation to continue to be provided, or for him to travel to America to receive experimental treatment.
The matter was brought before the High Court once more in July 2017, following Charlie's parents' assertions that new evidence had changed the balance of Charlie's best interests. However, the court once again found that it was not in Charlie's best interest for artificial ventilation to continue to be provided, with Charlie and welfare and best interests being the court's paramount consideration.
Throughout these proceedings, Charlie had the benefit of being represented by a guardian who represented Charlie's best interests. In light of the national and international media outcry to the outcome of the proceedings, the judge at the final High Court hearing made it clear that in the UK, children are separate individuals to their parents, and therefore their best interests are considered in relation to them as an individual, rather than in light of their parents' wishes. Where there is a conflict between a parent's views and a child's best interests, the child's best interests must prevail. In line with this approach, Charlie's guardian argued throughout that it was not in his best interests to travel to America purely to receive experimental treatment which had no real prospect of improving his condition or quality of life; something which the media often chose to omit from their reporting.
How did the dispute begin?
Charlie Gard was born with mitrochondrial depletion syndrome, a rare and severe condition which causes the deterioration and death of fuel-giving mitochrondrial cells, depriving him of the essential energy for living. He had progressive respiratory failure and was entirely dependent on a ventilator. He had congenital deafness, a severe epilepsy disorder and none of the usual signs of normal brain activity.
Charlie's parents became aware of a form of therapy ("nucleoside treatment") which has been used on patients with a less severe mitochondrial condition. They contacted Dr I, Professor of Neurology at a medical centre in the US. He confirmed that the nucleoside treatment had not been used on either mice or humans with Charlie's specific gene mutation (and would therefore be experimental treatment), but that there was a "theoretical possibility" that the treatment might be of benefit to Charlie.
At the start of January 2017, a plan was devised for nucleoside treatment to be administered to Charlie in the UK. However, before the treatment plan could be agreed, Charlie experienced a devastating episode of brain seizures as a result of his epilepsy.
On 13 January 2017, Charlie's treating clinicians informed his parents that the nucleoside treatment would be futile, and would only prolong Charlie's suffering. Charlie's parents disputed this outcome.
Application to the High Court
In February 2017, the hospital where Charlie was admitted made an application to the High Court for an order stating that it would be lawful and in Charlie's best interests for artificial ventilation to be withdrawn and palliative care provided and that it would not be in Charlie's best interests to undergo nucleoside treatment.
The medical evidence heard outlined that:
- There were no further treatments available to Charlie which would improve him from his current situation;
- The nucleoside treatment could not reverse the structural damage done to Charlie's brain;
- Charlie was likely to continue to deteriorate, remain immobile, exhibit severe cognitive impairment, remain dependent on ventilatory support, continue to need to be tube fed, and would always be dependent on mechanical ventilation to maintain his life.
Dr I also stated that it would be "very unlikely" that Charlie would improve with the nucleoside therapy.
Charlie's parents denied that his brain function was as bad as the experts made out, but acknowledged and accepted that the quality of life that Charlie had was not worth sustaining without hope of improvement.
Throughout the proceedings, Charlie's guardian (appointed by the High Court to act on behalf of Charlie) argued that it was not in Charlie's best interests to travel to America purely to receive experimental treatment which had no real prospect of improving his condition or quality of life.
High Court's Decision
The High Court granted the hospital's application that it was not in Charlie's best interests for artificial ventilation to continue to be provided, and it was therefore lawful and in his best interests for it to be withdrawn and palliative care provided. It was also held not be in Charlie's best interests to undergo nucleoside treatment. These declarations were made provided that the measures and treatments adopted would be of the most compatible with maintaining Charlie's dignity.
The High Court confirmed that although parents with parental responsibility have the power to give consent for their child to undergo treatment, as a matter of law, the court (exercising its independent and objective judgment) has overriding control as to what is in the child's best interests. In making that decision, the welfare of the child is paramount.
Having regard to the fact that subjecting Charlie to nucleoside treatment would be to enter unknown territory and could possibly subject him to pain, the judge concluded that it was in Charlie's best interests not to put him through more pain and suffering, and therefore the nucleoside treatment should not take place, the artificial ventilation should be withdrawn, and palliative care provided.
Application to the Court of Appeal
Charlie's parents applied to the Court of Appeal, arguing that the High Court judge should not have relied on the "best interests" test alone. They argued that where there is a viable alternative treatment for the child, which the parents prefer, then the parent's preferred option should only be overridden if it is established that the option would likely cause the child "significant harm".
Charlie's parents argued that applying a "best interests" rather than a "significant harm" test interfered with their rights as parents under Article 8 ECHR (right to respect for private and family life). The hospital and Charlie's guardian remained of the view that the course of action proposed by Charlie's parents was not in his best interests.
Court of Appeal's Decision
The Court of Appeal dismissed the appeal, stating that the High Court was entitled to conclude that the nucleoside treatment would be futile and have no benefit. Nucleoside treatment was therefore not a viable alternative treatment. The factual basis for the parent's case was therefore undermined.
The Court of Appeal nevertheless considered the "significant harm" test proposed by the parents, and found that to move Charlie to America and expose him to treatment there would be likely to expose him to continued pain, suffering and distress.
On the basis that the human rights grounds supported the parent's primary grounds, the Court of Appeal found that they too should be dismissed.
Decisions of the Supreme Court
On 8 June 2017 Charlie's parents requested permission to apply to the Supreme Court, repeating the arguments they had made previously in the Court of Appeal. The hospital and Charlie's guardian remained of the view that Charlie's best interests were of paramount importance, and that taking him to the US for experimental treatment was not in his best interests.
The Supreme Court rejected the parent's request for permission on the basis that no point of law of general, public importance had been identified. It reiterated that where the Article 8 rights of the parents and child are at stake, the child's rights must be the paramount consideration. If there is any conflict between them, the child's interests must prevail.
A further hearing was held at the Supreme Court on 19 June 2017, following the government's request for directions on whether the Supreme Court could direct a further stay of the order previously made by the High Court.
The court held that granting a stay, even of a short duration, would be directing a course of action which would be contrary to Charlie's best interests, as this would be prolonging his pain and suffering.
However, the court also considered the importance of protecting the parent's rights to petition the Supreme Court's decision, and so granted a further stay until midnight on 10/11 July 2017.
Application to the European Court of Human Rights
Charlie's parents appealed to the ECHR on their own behalf, as well as on Charlie's behalf. They argued that the hospital had blocked life sustaining treatment to Charlie in violation of the positive obligation under Article 2 (right to life).
They also complained that the UK court had disproportionately interfered with their parental rights under Article 8 (right to respect for private and family life) as the courts' decisions had been taken in Charlie's best interests, rather than asking whether there was a likelihood that Charlie was "suffering or likely to suffer significant harm".
Charlie's parents also complained that the Court of Appeal concluded that their intended parental decisions (i.e. nucleoside therapy) would cause Charlie significant harm, without hearing witness evidence on this point – an interference with their Article 6 rights (right to a fair trial).
Decision of the European Court of Human Rights
The ECHR maintained that where there is a conflict between a parent's desire concerning medical care for their child and the opinion of medical professionals treating the child, the child's best interests must be paramount. In any event, the ECHR found that even if they adopted the test of "risk of significant harm" (as proposed by Charlie's parents) rather than considering Charlie's best interests, it would be likely that exposing Charlie to the experimental treatment would be likely to expose him to continued pain, suffering and distress. The ECHR reiterated that the child's best interests must prevail.
The ECHR also found that the UK courts had been meticulous and thorough, had accorded weight to all the arguments raised and had clear and extensive reasoning giving relevant and sufficient support for their conclusions at all three levels of review.
Charlie's parents' application to the ECHR was therefore dismissed.
Further application to the High Court
On 7 July 2017 the hospital made a further application to the High Court, requesting affirmation of the declarations made when this matter was first considered by the High Court, once it had heard further evidence.
The hospital requested a further order echoing the initial High Court declarations due to the judge previously stating that it was in Charlie's best interests to be allowed to "slip away peacefully". The hospital submitted that it would be better placed by the judge expressing this as an order, rather than a declaration. The previous declarations of the High Court had been interpreted by Charlie's parents as permitting Charlie's transfer to another hospital for NBT treatment. The hospital sought these orders to ensure that there was no ambiguity, and as necessary in the context of Charlie's parents raising the prospect of criminal proceedings against the hospital and its staff.
Following the decision of the ECHR, Charlie's parents contacted the hospital stating there was a duty to refer this matter back to court due to new evidence. The new evidence Charlie's parents asserted was as follows:
- The Bambino Gesu Children's Hospital in Rome was willing to accept the transfer of Charlie;
- Dr H and the associated medical centre in the USA remained willing to accept the transfer of Charlie;
- On the basis of new laboratory findings, Dr H considered (despite not having seen Charlie) that:
- The likelihood of a positive effect and benefits to Charlie of the proposed nucleoside therapy to be markedly improved compared to the views expressed in court;
- The likelihood that the proposed nucleoside therapy will cross the blood brain barrier to be significantly enhanced
Charlie's parents continued to assert that the best interests assessment and declaration had been overtaken by events and were potentially unsafe. They considered that the best interests assessment was now weighted significantly in favour of preserving Charlie's life and providing NBT treatment.
The court heard evidence regarding recent MRI scans which were conducted of Charlie's entire body. These indicated that in some places Charlie had no muscle at all, and in other places there was significant replacement of muscle by fat. The reality at this stage therefore was that Charlie was now beyond any help, even from experimental treatment. The judge therefore upheld and confirmed the previous declarations that he had made in the very first High Court hearing earlier in the year.
Given the high profile this case had and the input from various well-known public figures, the judge took time to stress that in the UK, children have rights independent of their parents, and that in accordance with section 1 of the Children Act 1989, "when a court determines any question with respect to the upbringing of a child the child's welfare shall be the court's paramount consideration". He stressed that the experimental treatment had not even been tried on mice with the same strain of mitochondrial disease as Charlie, let alone humans.
Lastly, he also highlighted the importance of mediation in all cases such as this one, even if all it achieves is a greater understanding by the parties of each other positions.
Charlie sadly passed away on 28 July, following the removal of his artificial ventilation.
How does this apply to you?
These proceedings make it clear that when considering any decision regarding a child's medical treatment, the child's welfare and best interests must be the paramount consideration. If there is any conflict between the child's best interests and the parent's preferred option, the child's best interests must prevail, and takes precedence.
Where there is a dispute between a parent's view and medical opinion, the court maintains the overriding control as to what it is in the child's best interests. However, parties should do whatever possible to resolve the dispute outside of the court process. The importance of mediation in these cases has been stressed, even if it only achieves a greater understanding by the parties of each other's positions. It was the court's view that anything which helps parents (or other parties) to understand the process and the viewpoint of the other side, even if they profoundly disagreed with it, would be of benefit.
Where there is an ongoing dispute with parents regarding the treatment of the child which cannot be resolved outside court, a timely application to court should be considered for a determination as to what it is in the child's best interests. A guardian is appointed to represent the child to ensure that there is someone who can independently report to the court as to what is in the child's best interests.