The British government has decided that it is in the interest of 23-month-old boy Alfie Evans to die “with dignity.” Both the hospital treating the boy and Britain’s court system have rejected that the parents’ push for further treatment.
In a particularly ironic twist of fate, Evans has already survived longer than these experts predicted he would after the removal of his ventilator. Worse, London police announced they would monitor social media criticism of the decision. A doctor at the hospital even suggested that Evans would not be allowed to leave unless his father changed his “attitude.”
This tragic case echoes that of Charlie Gard, whose parents wanted to transport him to New York for experimental treatment. The British courts ruled that Gard be “allowed to die,” which he did shortly after being transferred to hospice. Unlike Gard, Evans is still alive.
This case draws into sharp relief the attack on parental rights in Britain, an attack which has also made terrifying headway in the United States.
Here are five things to know about this tragic case.
1. The court rulings.
Alfie Evans was born on May 9, 2016, and quickly deteriorated. His parents checked him into Alder Hay Children’s Hospital on December 14, 2016, and he has not yet left. Evans has drifted into a “semi-vegetative state,” and the team of professionals treating him came to the conclusion that he could not recover.
On February 20, 2018, High Court Justice Anthony Hayden — coincidentally an LGBT activist — ruled that doctors should no longer attempt to cure Evans, but rather to make his death more bearable. “He requires peace, quiet, and privacy in order that he may conclude his life, as he has lived it, with dignity,” Hayden wrote.
“I am satisfied that continued ventilatory support is no longer in Alfie’s best interest,” the judge declared. His ruling acknowledged that a team of doctors from Bambino Gesù Hospital in Rome said that some medical efforts could be taken to try to cure the boy, but also cited their finding that travel may further damage his condition.
This ruling dismissed the boy’s father — 21-year-old Tom Evans. “His core dilemma, from which he struggles to escape, is that whilst he recognises and understands fully that the weight of the evidence spells out the futility of Alfie’s situation he is, as a father, unable to relinquish hope,” Hayden explained (emphasis added).
From this viewpoint, Hayden patronizingly explained Tom Evans’ anger away. “Sometimes [the father] is fulsome and generous in his tributes to the doctors and medical staff, on other occasions his criticisms are vituperative,” the judge wrote. Contrary to the judge’s view, the father seems to appreciate the hospital’s care but to disagree with the notion that death is the preferable option.
Even so, the British Supreme Court rejected Tom Evans’ appeal on March 20. On Monday, the European Court of Human Rights also struck down another appeal, in which the boy’s parents requested he be taken to Bambino Gesù Hospital for treatment. Italy even offered the child citizenship to facilitate his treatment, and to pay for it.
2. A stubborn refusal to die.
On Monday, April 23, Alfie Evans’ life support was turned off. Doctors at Alder Hey had insisted that “once ventilation is removed, then depending on the situation of the child, we may have a period where they breathe for hours, days, sometimes much less.” The doctor even said it was possible Alfie Evans would only be able to breathe for a few minutes and die almost immediately.
As of Friday, April 27, Alfie Evans is still alive. According to his father, Alfie could live for “months, possibly years.”
“Alfie doesn’t need intensive care any more,” Tom Evans told the BBC. “Alfie is lying on the bed with one litre of oxygen going into his lungs and the rest is him. Some people say it’s a miracle, it’s not a miracle, it’s a misdiagnosis.”
In a statement, Alder Hey insisted that, while the doctors were unable to provide a specific diagnosis, they were confident he had a neuro-degenerative disease, and that “all treatable neuro-degenerative conditions have been excluded in Alfie’s case. Even if more testing is carried out it will make no difference to his treatment. This is agreed by all the experts.”
Alder Hey said it approached experts at Manchester Children’s Hospital and at Great Ormond Street Hospital, while welcoming further opinions from hospitals in Stoke, Rome, and Germany. The hospital recalled the September 2017 visit of clinicians from Bambino Gesù Hospital in Rome, and cited their conclusions that transport could result in further damage.
“The clinical team believe that continued active treatment is futile and not in Alfie’s best interests,” the hospital noted. While “the views of the parents will be very important in reaching a decision on ‘best interests,'” this consideration does “not give the parent an absolute right.”
The hospital insisted it was not “giving up” on Alfie Evans, but rather transitioning care to enable him to die peacefully. Despite the hospital’s insistence that death is in Evans’ best interests, the child has stubbornly refused to die.
3. “Alfie’s Army.”
The British government’s preference for Alfie Evans’ death has unleashed a global firestorm. A Facebook group called “Alfie’s Army” has amassed more than 617,000 members. A petition demanding that Alder Hey release Alfie Evans to the hospital of his parents’ choice has garnered nearly 600,000 signatures. A crowdfunding effort for Evans’ treatment has raised £131,423 ($181,319.32).
Pope Francis has also championed the cause. “Moved by the prayers and immense solidarity shown little Alfie Evans, 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,” the pontiff tweeted.
Moved by the prayers and immense solidarity shown little Alfie Evans, 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.
— Pope Francis (@Pontifex) April 23, 2018
Protesters have gathered around the world. Hundreds attended a candlelit vigil at the Vatican.
— Daily Mirror (@DailyMirror) April 27, 2018
Others stood up for Alfie Evans at the British Embassy in Washington, D.C.
— Nate Madden (@NateOnTheHill) April 26, 2018
Protesters made their voices heard in Poland.
Even children in Africa stood in solidarity with Alfie Evans.
View this post on Instagram
#Repost @alfiesarmy (@get_repost) ・・・ Beautiful💙 "African street kids dreams. We are sending our prayers from Uganda (Africa) to Alfie Evans. We love you so much. May God be with you." #Africa #Uganda #children #child #prayer #prayers #community #communities #saveAlfieEvans #hesjustababy #alfiesarmy #keephimalive #prayforAlfie #AlfieEvans #blessing #blessed #Amen
Activists have drafted legislation to protect parental rights in cases like Evans’, and a member of the European Parliament introduced “Alfie’s Law.” The proposal would provide parents of children with terminal diseases more authority in their child’s care and treatment instead of leaving those decisions up to hospitals and courts.
Protesters oppose the British government’s rulings for a couple reasons: because they think doctors should always err on the side of life, and because parents should be able to defend the lives of their children, even if that involves experimental cures.
4. An Orwellian turn of events.
On Wednesday, the Merseyside Police issued an official warning that they would monitor social media posts about Alfie Evans and that any “malicious communications and threatening behaviour … will be acted upon.”
“Merseyside Police has been made aware of a number of social media posts which have been made with reference to Alder Hey Hospital and the ongoing situation involving Alfie Evans,” Chief Inspector Chris Gibson said. “I would like to make people aware that these posts are being monitored and remind social media users that any offences including malicious communications and threatening behaviour will be investigated and where necessary will be acted upon.”
Some protesters had reportedly threatened to “burn down” Alder Hey and wished harm on doctors, and the children’s hospital’s trust said “remarkable staff” had been the target of “unprecedented personal abuse.”
While Gibson may have meant to defend hospital staff from potential attacks, the warning came across as an Orwellian declaration that if anyone disagreed with the British government’s decision to let Alfie Evans die, he or she would face the wrath of the state.
But the story got worse. A doctor treating the boy, who could not be named for legal reasons, said that the boy would not even be allowed to go home. Such a decision “would require a ‘sea change’ in attitude from the child’s family, and they feared that in the ‘worst case’ they would try to take the boy abroad,” the anonymous doctor told The Telegraph.
This stray remark suggested that the very doctors treating Alfie Evans had a deep disdain and mistrust of the boy’s parents. The hospital would never actually say that the parents’ right to take Alfie home depended on the parents’ internal “attitude,” but this remark suggested exactly that.
This suggested that British doctors could make decisions based on animus and on other people’s emotions, and that those decisions would be upheld by the state.
On Wednesday, Alder Hey unceremoniously expelled Roman Catholic Priest Gabriele Brusco, without even giving him an opportunity to say goodbye to Alfie Evans’s parents, the Catholic site Aleteia reported.
“When he was disconnected, Alfie should have immediately died,” Brusco said. “They gave him 6 hours before his death. But he did not die. … Now Alfie is fine, but he is weak.”
The priest said that the boy’s parents asked him to “put his hand on the boy’s head and pray for him.”
Brusco also reported a large police presence. “In the resuscitation area where few people can get in, I found about 10 to 15 police officers in the hallway,” the priest said. “Earlier there was a sofa, which was taken out last night, and his father, Thomas, had to sleep on the floor.” Perhaps staff removed the sofa to effect a “sea change” in Tom Evans’ attitude…
5. Father caves, Charlie Gard’s parents weigh in.
On Thursday, Tom Evans called for “Alfie’s Army” to stand down.
“We are very grateful and appreciate all the support we have received from around the world, including from our Italian and Polish supporters who have dedicated their time and support to our incredible fight,” Evans read from a statement.
“We would now ask you all to return back to your everyday lives and allow myself, Kate, and Alder Hey to form a relationship, build a bridge and walk across it,” he added. “We also wish to thank Alder Hey staff at every level, for their dignity and professionalism during what must have been an incredibly difficult time for them too.”
“Our little family along with Alder Hey has become the centre of attention of the world,” Evans explained. “It has meant we have not been able to live our lives as we’d like.”
On Thursday, Connie Yates, the mother of Charlie Gard, expressed sympathy with Alfie Evans’ parents and urged “Alfie’s Army” to support existing campaigns for “Charlie’s Law.”
“With heavy hearts we have watched as Alfie’s case has unfolded. For those who have not been in a situation like this, it is impossible to understand the pain Tom and Kate are going through,” Yates said. “When we were fighting for our son, Charlie Gard, to be given a chance to try a treatment that could have improved his quality of life, we realised that cases like these would keep happening until the law was changed.”
Yates recalled that since “Charlie’s passing in July last year, we have been working with paediatric consultants, medical ethicists, senior lawyers, U.K. politicians and other parents who have suffered through similar situations as us, to try and propose a law that will prevent parents experiencing painful and prolonged conflicts with medical professionals.”
Both Charlie Gard and Alfie Evans demonstrate the loss of parental rights. In these cases, the logic of euthanasia has overwhelmed parents’s desire to keep their children alive at any cost. In the United States, however, parents lost custody over their 17-year-old daughter when they refused to support her transgender identity as male. The judge in that case similarly ruled that the child’s “best interests” as defined by doctors overrule parental rights.
Similarly, schools have been ordered by courts not to warn parents before their children are taught about LGBT issues.
Whatever happens with Alfie Evans, his case will likely not mark the end of the parental rights debate, nor will it reverse the creepy Orwellian expansion of government into such personal issues.