Responding Better to Desperate Parents: Warnings from the Alfie Evans Saga

The end-of-life litigation involving Alfie Evans (9 May 2016 - 28 April 2018) from Liverpool, England, who suffered from an incurable and degenerative neurological condition was extraordinary. It emerged in the shadow of comparable but not as extensive litigation enabled by crowdfunding in relation to Ashya King and Charlie Gard. Although Alfie's parents lost repeatedly in the High Court, the Court of Appeal and the Supreme Court of England, as well as before the European Court of Human Rights, they persisted in bringing more legal challenges. The public relations campaign on their behalf at times was threatening and accusatory of the clinicians and of Alder Hey Hospital. Both persons employed at the Christian Legal Centre, which represented the parents at times, and medical practitioners from Europe who participated in forensic assessments behaved unethically. There are many lessons to be learned from the Alfie Evans saga. If we are to maintain morale and commitment among those who provide paediatric clinical services to the very ill and the dying, they must be protected from the public relations and litigation campaigns deployed by those purporting to represent the Alfie Evans family, and better non-adversarial methods need to be constructed as a matter of urgency to resolve matters involving disagreements about the treatment of terminally ill children.