The British baby Alfie Evans has died, bringing into the spotlight a host of legal and ethical issues around the treatment of patients in a semi-vegetative state on life support. It also has placed hospitals and their staff at the epicentre of populist fury over medical decisions that are often poorly understood by the public.
Meanwhile, the Catholic archbishop of Westminster has suggested that some people who campaigned in the case of Alfie, “used the situation for political aims” and The Guardian reports that the hospitals are considering tightening security after the “unprecedented” abuse of medics treating Alfie.
The tragic case of a 23-month-old boy who died after spending more than a year in hospital attracted widespread media attention. Alfie Evans’s parents had been fighting to take the toddler to Rome for further treatment, but a court ruled his life support could be turned off several days ago.
According to a BBC News report, here is how the story unfolded. Alfie was born to parents Tom Evans and Kate James, from Bootle in Merseyside, on 9 May 2016. He was first admitted to Alder Hey Children’s Hospital in Liverpool in December 2016 after suffering seizures and has been a patient in the hospital ever since. Doctors diagnosed a degenerative neurological condition, which they have not been able to identify definitively.
The report says Alfie’s parents and the hospital clashed over what should happen to Alfie, who had been in a semi-vegetative state for more than a year. His parents said they wanted to fly him to a hospital in Italy but this was blocked by Alder Hey, which said continuing treatment was “not in Alfie’s best interests”.
The Alder Hey Children’s Hospital NHS Foundation Trust went to the High Court to seek a declaration that “continued ventilator support is not in Alfie’s best interests and in the circumstances, it is not lawful that such treatment continue”. The report says sitting at the High Court in Liverpool, Mr Justice Hayden began overseeing the case on 19 December.
Alder Hey said scans showed “catastrophic degradation of his brain tissue” and that further treatment was not only “futile” but also “unkind and inhumane”. But his parents disagreed and wanted permission to fly him to the Bambino Gesu Hospital in Rome in the hope of prolonging his life. The Italian hospital, which has links to the Vatican, suggested operations to help Alfie breathe and keep him alive for an “undefined period”. The judge said he would make a decision on what was best for Alfie if an agreement was not reached.
The report says one of the dilemmas Alfie’s case raised is whether doctors are the right people to determine if withdrawing life-support treatment is in “the best interests” of a terminally ill child. One of the key arguments presented by his parents was that they should decide what is best for their son. It was the same case made by the parents of Charlie Gard, the 11-month-old baby who died last year following a similar battle over his treatment.
The report says the law in the UK falls somewhere in-between. The 1989 Children’s Act makes it clear that where a child is at risk of harm the state can and should intervene. This means that the rights of parents are not absolute and the state has been emboldened to challenge the view of parents where they believe a child’s best interests are not being served. If a public body disagrees with the parents’ choices, they must go to court in order to override this parental responsibility.
On 20 February, Mr Justice Hayden said doctors could stop providing life support for Alfie against his parents’ wishes, saying the child required “peace, quiet and privacy”.
Mr Evans said he believed his son was still responsive, telling reporters outside court Alfie was “improving”. But Michael Mylonas QC, representing the hospital, said: “One of the problems of this case is they (Alfie’s parents) look at him and, barring the paraphernalia of breathing and feeding, he’s a sweet, lovely, normal-looking boy who opens his eyes, (and) will smile…” The hospital asserted that any movements by the child were “spontaneous seizures as a result of touching”.
The report says Mr Justice Hayden ruled in favour of hospital bosses and doctors were set to withdraw ventilation on 23 February before his parents embarked on a lengthy legal battle. Alfie’s parents refused to give up hope and took the case to the Court of Appeal on 6 March where judges upheld Mr Justice Hayden’s decision.
On 20 March, the couple appealed to the Supreme Court where justices refused to give the couple permission to mount another appeal. Despite this, their lawyers went to the European Court of Human Rights (ECHR) after exhausting all legal avenues in the UK. But three judges ruled the submission “inadmissible”, saying they were unable to find any violation of human rights.
On 11 April, Mr Justice Hayden then endorsed an end-of-life care plan for Alfie, setting a date to switch off life support. The report says this was the first time Alfie’s parents were represented by the Christian Legal Centre (CLC) in court.
The CLC is a sister body to Christian Concern and describes itself as an organisation that defends “individuals and churches who have suffered discrimination and challenges because of their desire to live and work according to biblical beliefs”. CLC lawyers began a final legal bid to the parents to take control over the treatment of their son on 16 April, claiming he was being “unlawfully detained”.
But, the report says, this was rejected for a second time by the Court of Appeal and the Supreme Court. Two days later Mr Evans flew to Rome for a meeting with the Pope, pleading with him to “save our son”.
Despite an urgent application to the ECHR on Monday, judges refused to intervene in the case, prompting angry scenes at Alder Hey Children’s Hospital. Within hours, the Italian Ministry of Foreign Affairs granted 23-month-old Alfie Italian citizenship, hoping it would allow an “immediate transfer to Italy”. Pope Francis then tweeted his support for the family: “I renew my appeal that the suffering of his parents may be heard and that their desire to seek new forms of treatment may be granted.”
But, the report says, this last-ditch appeal was dismissed by Mr Justice Hayden who stated that “Alfie is a British citizen” who “falls therefore under the jurisdiction of the High Court”.
The Italian Embassy has since clarified it was not trying to challenge any decisions made previously by the British courts. A spokesperson described the granting of citizenship as a “signal” to the judge that should he change his mind, they are ready to facilitate his transfer to the Italian hospital.
A further hearing then took place on Tuesday afternoon in which Mr Hayden said the case had now reached its “final chapter”. The report says he rejected claims by Mr Evans’s lawyers that his son was “significantly better” than first thought because he had been breathing unaided for 20 hours after doctors first withdrew life support.
Alfie’s parents then launched a further appeal against the order stopping them from taking him to Italy, which was heard on Wednesday afternoon by a panel of three Court of Appeal judges, headed by Sir Andrew McFarlane. The judges upheld a ruling preventing the 23-month-old from travelling abroad after life support was withdrawn.
The report says throughout its campaign the family has been encouraged by Alfie’s Army, a social media campaign whose supporters gathered regularly outside the hospital. But after claims that the protesters were verbally abusing staff and making visits “scary”, police launched an investigation into acts of intimidation. Alfie’s parents apologised, saying they did not intend to “harm or cause conflict or upset”.
Before their son was granted Italian citizenship, a group of protesters tried to storm the front entrance before police officers formed a line to block the entrance.
On Monday, Alfie’s life support was turned off at 21:00 BST after a High Court judge dismissed fresh submissions heard in private from CLC lawyers. Alfie’s father had said his son was continuing to breathe unassisted and his life support should be reinstated.
On Tuesday morning, Ms James posted a picture on Facebook showing him sleeping in her arms. “No matter what happens, he has already proved these doctors wrong. How amazing is he. How beautiful does he look,” she wrote.
Alfie was taken off life support on 23 April and survived for a further four days.
The Catholic archbishop of Westminster has suggested that some people who campaigned in the case of Alfie, “used the situation for political aims”.
The Guardian reports that Cardinal Vincent Nichols, the most senior Catholic cleric in England and Wales, said it was right for a court to “decide what’s best, not for the parents, but for the child”. He was speaking amid mounting criticism of Christian organisations that intervened in the case. Before Alfie’s death, Pope Francis said he hoped the “suffering of his parents may be heard and that their desire to seek new forms of treatment may be granted”.
The Christian Legal Centre represented the family in Alfie’s final days, and pro-life activists demonstrated outside Alder Hey hospital in Liverpool where Alfie was being treated.
But, the report said, Catholic bishops in England also came under fire for defending the hospital. The Conservative MP Nadine Dorries said bishops should “hang their heads in shame” after they said “all those who are and have been taking the agonising decisions regarding the care of Alfie Evans act with integrity and for Alfie’s good as they see it”.
On a visit to Poland this weekend, Nichols said: “Wisdom enables us to make decisions based on full information, and many people have taken a stand on Alfie’s case in recent weeks who didn’t have such information and didn’t serve the good of this child. Unfortunately, there were also some who used the situation for political aims.”
Speaking to the Polish church’s Catholic information agency, KAI, he said: “It’s important to remember Alder Hey hospital cared for Alfie not for two weeks or two months, but for 18 months, consulting with the world’s top specialists – so its doctors’ position, that no further medical help could be given, was very important.
“The church says very clearly we do not have a moral obligation to continue a severe therapy when it’s having no effect, while the church’s catechism also teaches that palliative care, which isn’t a denial of help, can be an act of mercy. Rational action, spared of emotion, can be an expression of love; and I’m sure Alfie received this kind of care.
“It’s very hard to act in a child’s best interest when this isn’t always as the parents would wish – and this is why a court must decide what’s best, not for the parents, but for the child.”
Alder Hey Hospital is, meanwhile, to consider tightening security after the “unprecedented” abuse of medics treating Alfie, amid warnings that other children’s hospitals could soon follow suit. The Guardian reports that it is understood that senior staff at the hospital in Liverpool, where 23-month-old Alfie died on Saturday morning, will discuss introducing more rigorous procedures in the coming weeks. Security concerns at children’s hospitals have been further raised by claims that foreign-registered doctors have been posing as family friends to conduct unauthorised examinations in cases involving severely ill babies.
Peter-Marc Fortune, a senior consultant and spokesperson for the Royal College of Paediatrics and Child Health, said he was quite alarmed by the assessments. He said: “I fear this might end up with us tightening security in children’s hospitals which I think is really unfortunate because what we aim to do is make children’s hospitals less scary and as friendly as possible. We try to make it a very unchallenging environment for people.
“In light of what’s happened, I think there will be some pause for thought and reflection and discussions. I don’t know how that might manifest but it seems to me it might mean we tighten things up a bit.”
The report says at least three foreign doctors carried out unauthorised medical assessments on Alfie under the guise of being family friends in visits arranged by “pro-life” campaigners. There have also been concerns about the actions of supporters in other high-profile life-support cases, including the cases of Charlie Gard and Isaiah Haastrup, who both died in the past year after acrimonious legal battles between their parents and doctors.
In the Charlie Gard case, one of the family’s key campaigners was found roaming the wards of Great Ormond Street Hospital asking the parents of seriously ill children to sign a petition.
The report says Alder Hey staff were alarmed about the presence of two German air ambulance officials who were ejected from the hospital last week. It is understood they were previously in the hospital on 12 April when it was granted an emergency High Court injunction to stop the baby being flown overseas by his father, Tom Evans, who was acting on legal advice from the Russian law student Pavel Stroilov, who works for the Christian Legal Centre.
The report says it has been revealed how an international network of Catholic fundamentalists played a key role in advising Alfie’s parents, including organising a meeting with Pope Francis, arranging a string of medical experts to assess Alfie and replacing the family’s Liverpool-based legal team.
Fortune, who is president of the Paediatric Intensive Care Society, said he and fellow medics had been alarmed by the personal abuse directed at staff in the Alfie Evans case.
The report says the scale of the attacks were described as “unprecedented” by Alder Hey’s chair and CEO and condemned by Alfie’s father. For several days, Merseyside police stationed officers outside the hospital where hundreds of protesters gathered. At one point, dozens tried to storm the front entrance.
Fortune said almost 20% of trainee roles in paediatric departments were unfilled and that the abuse faced by Alder Hey staff could further damage recruitment. “The other thing that worries me, as an established professional who is ready to have the difficult conversations, this makes it very scary when you’re not just potentially going to put yourself in a very difficult conversation but end up with hate mail and things coming your way,” he said.
“The saddest thing of all of this is that all the people at the centre of this all wanted the same thing, which is the best thing for the child.”