This photograph is from an article in Wired ‘How Facebooks Fake News fix made the Alfie Evans story go viral’ 

The sad case of Alfie Evans has attracted world wide attention in the last few days. There is a useful summary of the last year on the BBC news site. 

We will update this post with additional commentary as it becomes available.

Alfie’s life and death

Alfie was born on 9th May 2016; his parents are Tom Evans and Kate James. He was admitted to Alder Hey Children’s Hospital in December 2016 after suffering seizures and remained a patient until his death on 28th April 2018. He was diagnosed with an unspecified degenerative neurological condition and remained in a semi-vegetative state.

The parents thought that Alfie was responding to them at times and wanted to take Alfie to the Bambino Gesu Hospital in Rome for further interventions that might keep Alfie alive for ‘an unspecified time’.but Alder Hey hospital believed he had no hope of recovery and further medical intervention, such as keeping him on ventilation,  was not in his best interests. Alder Hey said scans showed “catastrophic degradation of his brain tissue” and that further treatment was not only “futile” but also “unkind and inhumane”.

When doctors and parents can’t agree what happens to a child in this situation, they have to apply to the court to make a decision about what is best for the child. The hospital therefore made an application to the High Court before Mr Justice Hayden to ask for a declaration that continued ventilator support is not in Alfie’s best interests and therefore not lawful. Hayden J agreed.

Alfie’s parents appealed on 6th March to the Court of Appeal who upheld the initial decision. They then appealed to the Supreme Court on 20th March 2018, who refused leave for another appeal. The parents then went to the European Court of Human Rights on March 28th, who ruled their submission ‘inadmissible’ as they could find no violation of any human rights. On 11th April 2018 Mr Justice Hayden approved an end of life care plan and set a date for Alfie’s life support to be switched off.

On 12th April crowds began to gather outside the hospital and the Merseyside police had to warn people about their conduct, both outside and on-line, hospital staff and Mr Justice Hayden having been singled out for particular abuse.

The Christian Legal Centre [CLC] then argued on the parents behalf that Alfie was being ‘unlawfully detained’. That argument was rejected by the Court of Appeal on 16th April and on 20th April 2018 by the Supreme Court.

Mr Evans flew to Rome on 18th April to meet the Pope, who tweeted that he ‘renewed his appeal that the suffering of the parents may be heard…’ On 23rd April the Italian Ministry of Foreign Affairs granted Alfie Italian citizenship as a ‘signal’ to facilitate his ‘immediate transfer to Italy’. However, Mr Justice Hayden was clear that Alfie was a British citizen and remained under the jurisdiction of the High Court.

Alfie’s parents made a final appeal to remove Alfie to Rome; this was rejected by the Court of Appeal on 25th April. Further attempts to make submissions to the European Court failed.

Alfie died in the early hours of 28th April 2018.

What were the legal arguments in this case?

The legal position regarding Alfie is clear. Medical treatment of any child is only lawful if it is ‘in his best interests’. The view of the court, after hearing medical evidence was that almost all of Alfie’s brain had been destroyed and no one knew why. He was never going to get any better. Continued ventilation was therefore not in his best interests.

The attempt by the CLC to make the hospital release Alfie to his parents was under a writ of ‘habeas corpus’. This means ‘who has the body’ and used to be a way, for example, that a father could enforce his right to have custody of his child. However, this right has long been subsumed by more recent statutes, the most recent being the Children Act 1989 which makes the child’s welfare the ‘paramount consideration’ for any matter relating to the upbringing of a child. The Supreme Court declared that the hospital ‘must be free to do what has been determined to be in Alfie’s best interests. That is the law in this country’.

Why were so many people upset about the courts’ decisions?

There has a been a considerable amount of comment about this case; some sensitive and well informed and some ignorant and inflammatory. We can do no more than summarise some of the concerns and provide links to some of the commentary we think you will find helpful.

One serious concern appears to be unease that the ‘best interests’ test appeared to be acting to reduce the ability of the parents to act in the way they thought was best for their child. This was difficult for many to understand or accept. A number of family lawyers expressed unease on-line and wondered whether in fact the test should be ‘significant harm’ – as is required in care proceedings. Therefore, so long as the parents’ proposed treatment regime did not cause ‘significant harm’ they should be allowed to proceed.

However, as other commentators pointed out – substituting a ‘significant harm’ for a ‘best interests’ test in reality just shifted the test a little further along. Difficult decisions would still have to be made about how to care for terminally ill children and how best to deal with disagreements between parents and doctors. The Italian hospital were not proposing any further ‘treatment’ but just another form of palliative care.

A considerable amount of emotion has been generated by this case and there are some worrying signs that the tragedy of an individual family has been appropriated by various special interest groups with their own agenda. In particular it seems that the CLC may have encouraged Alfie’s father to consider a private prosecution against various judges, alleging they murdered Alfie.

The answers to these particular human tragedies do not appear to lie in the law – but in the ability of parents and doctors to communicate and to trust each other. Sadly, the amount of emotion and suspicion generated by this case make it likely such a necessary goal is now even further out of reach and have caused considerable harm to public trust and confidence in the rule of law.

 EDIT 1st May 2018 The final judgment of the Court of Appeal – 25th April 2018

The Court of Appeal were concerned to note the quality and nature of the ‘support’ that was now being offered to the parents, noting at para 39:

…in relation to the first appeal, that there was some coordinated organisation of potential medical experts in relation to more than one of these vulnerable families, the same expert being covertly introduced to Kings College Hospital to examine secretly one child in the paediatric intensive care unit there and the next day to go to Alder Hey, again covertly and secretly, to purport to examine Alfie there.

The Court of Appeal did not see it within their remit to investigate these matters but stated their concern that “that the representation of the parents may have been infiltrated or compromised by others who purport to act on their behalf” and contemplated that the time may now have come that this requires further investigation:

It may be that some investigation of whether, in this country, at this time, parents who find themselves in these awful circumstances, and are therefore desperate for help and vulnerable to engaging with people whose interests may not in fact assist the parents’ case, needs some wider investigation, but I do no more than draw attention to the concern that this court has at what seems to be an unhelpful development which may, in reality, be contrary to the interests of such parents.

Further reading

• What are the nature of and limits to parents’ rights? – Child Protection Resource Online 27th July 2017
• Alfie Evans – a case of exploitation by pro-life groups The Times comment 24th April 2018
• On the naughty step – the questionable ethics of the Christian Legal Centre  – Giles Peaker 28th April 2018
• The Tragic Case of Alfie Evans – Matthew Scott 28th April 2018
• The agony of Alfie Evans’ parents was made worse by bad law – Fraser Nelson, The Spectator 28th April 2018
• As Alfie Evans dies, calls grow for better ways to support grieving parents – The Observer 29th April 2018
• A court is an unfit place for a case like Alfie Evans and its moral complexity – Kenan Malik 29th April 2018
• Broadcasting House – BBC Radio 4 (Including Katie Gollop on mediation) on 29th April 2018
• Alfie’s Army and the long term implications – mumsnet thread April 2018
• Alfie’s Army, misinformation and propaganda, the need for critical media literacy in a mediated world – Ranjana Das University of Surrey 30th April 2018
• The Exploitation of Little Alfie – ‘pro life zealots who manipulated the end-of-life tragedy of a British toddler – Robert Mickens La Croix International 30th April 2018
• Alfie Evans and Charlie Gard—should the law change? – Professors Dominic Wilkinson (Medical Ethics) and Julian Savalescu in the British Medical Journal 1st May 2018
• Are you sitting comfortably? The Art of Storytelling – Child Protection Resource Online 2nd May 2018
• Why the parents of both Charlie Gard and more recently Alfie Evans should have been allowed to decide about their son’s best interests – Raanon Gillon Journal of Medical Ethics 1 May 2018
• There will be another Alfie Evans: Experts need to engage –The Science Media Centre, guest post by Tom Sheldon, Senior Press Manager 10th May 2018
• Alfie’s law could undo decades of progress on children’s rights – Carolyne Willow The Guardian 10th May 2018
• Alfie Evans, best interests and parental rights – Polly Morgan The Transparency Project 18th May 2018
• The Abuse of Alfie’s Rights – a Gilded Death is still a Death – Allan Norman The Transparency Project – 18th May 2018
• The Ethics of keeping Alfie alive -Saurabh Jha The Health Care Blog 21st May 2018
• Charlie Gard, Alfie Evans and Re R (A Child): Why a Medical Treatment Significant Harm Test would Hinder not Help – Katie Gallop QC and Sarah Pope The Transparency Project 22nd May 2018

UPDATE 1 June 2021. This post has been amended to update the featured image used. Photo by Anthony from Pexels, reproduced with thanks.