The consequences of disputes, often, are contrary to the best interests of the children at the centre of them

Since December 2016, Alfie Evans—who is nearing his second birthday—has been treated at Alder Hey Hospital in Liverpool. He is terminally ill, with a severe and progressive neurodegenerative condition. In his High Court judgment of 11 April 2018, Mr Justice Hayden remarked that “almost the entirety of Alfie’s brain (has) been eroded leaving only water and cerebral spinal fluid.”  The medical experts agree that Alfie’s condition is untreatable.

Mr Justice Hayden held that continued ventilation was no longer in Alfie’s best interests and declared as lawful the withdrawal of ventilation and the provision of palliative care. Transferring Alfie elsewhere was also deemed irreconcilable with his best interests. Higher courts upheld that decision, rejecting legal arguments about the rights of the parents by stressing the paramountcy of the child’s welfare and dismissing submissions of unlawful detention.  

On 23 April 2018, with all legal routes seemingly exhausted, 200 or so protesters turned up outside the hospital.  At one point, dozens ran towards the main doors of the hospital only to be stopped by a row of policemen. Outside the hospital and on social media, protesters hurled verbal abuse at hospital staff: “kidnappers”, “murderers”, “executioners”.  On Twitter, thousands returned insults to the protesters: “ungrateful”, “morons”, “pathetic losers”.

Although Alfie was a British citizen, under the jurisdiction of the High Court, the Italian government granted Alfie Italian citizenship that evening with a view, one assumes, to facilitate his transfer to Italy.  Alfie’s lawyers lodged an emergency application hours later, which was dismissed by Mr Justice Hayden.

The amount of judicial, police, and NHS time spent dealing with this case must run to the thousands of hours. The NHS must also pay its lawyers, depleting its limited resources by six figure sums.

The whole situation—full of inflammatory language, misinformation (how many commentators have actually read the judgments?), and delaying tactics—is profoundly distasteful, but this circus is becoming the norm in “best interest” cases involving children, fuelled by social media and the public appetite for such stories. The creation, mainly through social media, of a maelstrom of opposition to the actions of the treating clinicians, with support from high profile figures such as the Pope, celebrities, and even governments, has become a strategy to pressure hospitals into submission. It is guerrilla warfare. Alfie’s Army against the NHS.  

These ugly wars do shed blood. The consequences, often, are that the children at the centre of the dispute receive burdensome treatment for longer than they should, treating hospital staff feel victimised and demoralised, and hospitals in the future will think twice about taking cases to court for fear of damage to their reputation even when continued treatment is contrary to the child’s best interests.

Ideally, brewing disagreements between parents and paediatricians should be addressed early on, with unresolved cases escalating to meetings with a clinical ethicist or hospital ethics committee. Once the matter reaches court, the “we are on the same side” stance is replaced with an adversarial one, with lawyers on each side. Hence why the courts should only be used as a last resort, when nothing but judicial intervention will resolve the disagreement.

In the final pages of Saint-Exupéry’s The Little Prince, the pilot narrator stranded in the desert senses that “something extraordinary was happening” to the Little Prince. He had to return to his star, but was unable to carry his heavy body. Worried, the narrator refuses to leave the Little Prince alone. That night, the Little Prince walks away unnoticed. The narrator manages to catch up with him. The Little Prince takes his hand and says “You will be sad. I will look dead but it won’t be true…”. “Here it is. Let me take a step alone.” The narrator, full of grief, is unable to move.  A snake with “good venom” bites the Little Prince’s ankle, who stands still for a moment, without a sound, before falling softly like a tree onto the sand.

For Alfie’s parents, they will be saying their own goodbyes. Alfie must be allowed to make that final journey in peace and dignity, away from the chaos of the outside word, the chanting crowds, and tweeting masses. 

Daniel Sokol is a medical ethicist and barrister. Follow Daniel on Twitter: @DanielSokol9