In whose best interests?

Best interest cases, where life-sustaining treatment “can lawfully be withheld or withdrawn from a patient who lacks capacity in circumstances where commencing or continuing such treatment is deemed not to be in their best interests”, tend to garner widespread attention. Most recently, the plight of the parents of Alfie Evans, who died following a tumultuous legal battle with the doctors of Alder Hey Children’s Hospital in Liverpool, has attracted global interest.

The legal grounding

Medical cases concerning terminally-ill children are usually resolved by parents and doctors behind closed doors. However, a spike in the number of high-profile legal battles in recent years has raised questions about the need for clearer legislation.

Currently, the legal foundation for the withdrawal of parental rights relies on the 1989 Children’s Act, which permits state intervention if a child is “at risk of harm”. The Act, whilst broadly providing parents with the right to choose what happens to their child, can be challenged if doctors believe their decision could lead the child to suffer from significant harm (defined as ill-treatment or the impairment of development). Parental rights may only be overturned by a ruling from the Royal Courts of Justice, which depends heavily on complex medical opinion to determine what lies in the child’s best interests.

Legal disputes of this nature have become increasingly prevalent as advances in paediatric medicine provide new opportunities for successful treatment. The case of Charlie Gard, who died from a rare genetic condition in 2017 following a five-month legal battle, draws many parallels to that of Alfie Evans. Charlie’s parents believed that their son could receive life-saving treatment in the US, but his transfer was prevented when a decision by the Royal Courts of Justice found that they had been misled on the treatment’s success rates by a doctor from Great Ormond Street Hospital. The decision, which generated public outrage, has raised questions about the ethical implications of judicial involvement in such cases. 

Alfie’s case

Alfie Evans was seven-months old when he began to suffer seizures and was admitted to Alder Hey Children’s Hospital in Liverpool in December 2016. A year later, in December 2017, disputes over Alfie’s treatment between staff at Alder Hey and Alfie’s father Tom Evans resulted in the involvement of the Family Division of the High Court, overseen by the Hon. Mr Justice Hayden. Legal representatives for the doctors at Alder Hey believed that Alfie’s condition was untreatable, and any further medical intervention would be futile. Alfie’s parents argued that they should be allowed to fly Alfie to Rome’s Bambino Gesu Paediatric Hospital to pursue further treatments.

Following an extensive review of evidence from medical professionals at Alder Hey, doctors from Bambino Gesu and paediatric specialists from around the globe, Mr Justice Hayden ruled against the wishes of Alfie’s parents, stating that the child should not be removed from Alder Hey. Further appeals by Alfie’s parents were rejected by Supreme Court justices and judges from the European Court of Human Rights, and Alfie died on the 28th April, five days after the removal of life-support.

State vs. individual rights

At the centre of the dispute over Alfie’s case lies a deeply philosophical and politicised conflict regarding the role of the state versus the rights of the individual. The state, represented by the court and the doctors of Alder Hey, determined that transporting Alfie to Italy would not be in the child’s best interests. This was due to extensive medical evidence which indicated that Alfie could not be cured due to significant, irreversible brain damage. Indeed this was even accepted by the doctors at Bambino Gesu who were only able to offer Alfie an alternative form of palliative care. Furthermore, medical professionals believe that moving Alfie was likely to induce further seizures, and there was a very real chance of Alfie dying while being transported to Italy.

Nonetheless, some observers believed that parents should always have the final decision on the welfare of their children. The Spectator’s Fraser Nelson believes that “bad law” like this should not be allowed to stand in the way of a parent’s choice – especially when other sources of care are proffered from around the globe. When it comes to human rights, he argues, the removal of fundamental parental choice is markedly regressive. Simultaneously, a campaign led by MEP Stephen Woolf is calling for the introduction of ‘Alfie’s Law’, to allow parents to make the final decision regarding their children’s care. Similar to the legal initiative started by Charlie Gard’s parents, the campaign seeks to prevent prolonged legal disputes between hospitals and families and return full rights to the parents of sick children. 

However, there remains significant concern about this ‘parents know best’ approach. A good proportion of best interest cases, so far, have involved parents who are Jehovah's Witnesses. Jehovah's Witnesses believe that their religion requires them to refuse certain medical treatments, such as blood transfusions. Allowing parents to always have the final say on their child’s medical treatment could therefore lead to the unnecessary deaths of many children of Jehovah's Witnesses – even when they require relatively simple medical procedures.

Conclusion

High-profile quarrelling - especially that which inspires vitriol and abuse – should not overshadow the suffering of a vulnerable, grieving family, and the medical professionals who face a barrage of conflicting opinions as they make life-changing decisions on the welfare of very vulnerable children. In almost all cases, both doctors and parents obviously hold the child’s wellbeing in the highest regard. It is important that, when reviewing or challenging the legislation surrounding these cases, those with significant public profiles are more respectful of those most closely involved. 

Amabel Scott is a research assistant at Bright Blue