Thursday, April 26, 2018

Alfie's Long Goodbye

What the British government is doing to a baby and his family is almost unbelievable. The government has determined that Alfie Evans, afflicted by a rare neurodegenerative disorder, has so poor a quality of life that no efforts should be made to keep him alive. He was taken off ventilation, but continued, surprising the doctors, to breathe. He has also been deprived of water and food. His parents want to take him to Italy, where a hospital is willing to treat him. The British government says no, and has police stationed to keep the boy from being rescued. It is, after all, in his best interest to die. They've even instructed the police to monitor social media and threaten anyone who dares to question their judgment and call them murderers.
How does a nation reach a point where it will essentially kidnap a child from a loving, functioning family, yank that same child off life support, deny him care as he unexpectedly fights to stay alive, and then block attempts by a foreign government to rescue him and provide him top-notch care free of charge? How does a great civilization sink to such barbarism and tyranny?
Rather than defending a right to life, the state has decided to define which lives are worth living. Rather than protecting the rights of the child only when the parents have manifestly failed, the state has decided that it is the greater, better parent. Why aren’t liberals horrified by the British Government’s behavior? Shouldn’t everyone be?
There are end-of-life cases that raise genuinely complicated issues. The same course of medical treatment might be obligatory in one set of circumstances, permissible in another, and cruel in a third. There are gray areas and judgment calls. This is not one of those cases. There is no allegation that providing the baby with nutrition and hydration, or treatment generally, will cause him suffering — or that extending his life will prolong his suffering, since there is no indication that he has been suffering.
The family is not asking the British government to pay for expensive treatments. They just want the freedom to take their boy to people who will try to keep him alive rather than cause his death. The considerations that move the government are that the baby’s doctors consider it unlikely that he will ever attain a high level of cognitive functioning or be able to survive on his own, and likely that his condition will eventually kill him. The courts have decided that Alfie Evans therefore derives no benefit from continuing to live.
It really is this simple: The government has decided that it is the baby’s best interest to die, and it is trying to ensure that he dies expeditiously. It is overriding parental rights in the process. The family and its supporters assert that it is barbaric to sentence anyone to death by starvation for the crime of being dependent on others, and that parents have a right to make medical decisions for their children.
Alfie, admitted to Alder Hey Hospital in December 2016, was diagnosed with a neurodegenerative disease associated with severe epilepsy and has been in a semivegetative state for more than a year. During that time, he has been kept alive by artificial ventilation in the critical care unit.
Based on "extensive damage" in the child's brain, the hospital recommended to the child's parents that active treatment be stopped. Disagreement between the hospital and his parents resulted in a referral of Alfie's case to the Family Division of the UK High Court for a judge to rule on whether active treatment is in Alfie's best interests.
When the court did not rule in their favor, the parents appealed the decision, and after that appeal was lost, the case was referred to the Supreme Court. While the case played out in the legal arena, the hospital continued to provide Alfie with artificial ventilation and assisted feeding, but his doctors said continued treatment was futile and speculated that, if they were to withdraw Alfie's ventilation support, the child would shortly die. Last week, Alfie's father traveled to Rome to meet Pope Francis, who expressed his support for their cause.
At that time, it was suggested that Alfie could be transported to Rome's Bambino Gesu Pediatric Hospital, a Vatican hospital and the main pediatric hospital serving southern Italy, for treatment.
However, a subsequent visit to Alfie and consultation with his doctors led the Roman doctors to conclude that the child's condition is irreversible and untreatable. Based in part on evidence supplied by the hospital, the supreme court dismissed Alfie's case. High Court Justice Anthony Hayden rejected the plan to take Alfie to Rome and said the order to end Alfie's life support should commence at 9 p.m. Monday.
In a last-ditch effort, Alfie's parents appealed to the European Court of Human Rights, which rejected their application on Monday, declaring the complaint "inadmissible." At 9:17 p.m. Monday, ventilation support was withdrawn. Contrary to all the expectations of the doctors, Alfie continued to breathe independently. Tom Evans posted a video on Facebook in which he said that his son had been breathing for himself and that the doctors were refusing to give him oxygen.
For hours, Alfie continued to breathe unaided, with hospital staff refusing to help with either ventilation or hydration despite his coughing. About 2 a.m. Tuesday, Alder Hey hospital staff provided some hydration and oxygen support. The Italian government granted Italian citizenship to Alfie on Tuesday and applied to the foreign secretary for permission to intervene to save Alfie's life. Once again, the courts had to decide, in an urgent hearing on Tuesday, whether this would be permitted, and it ruled to ban travel.
In Wednesday's appeal hearing, Alfie's legal team argued that the hospital's original end-of-life plan was based on suppositions that the toddler needed oxygen to survive, Kiska said. The fact that Alfie lived on even without ventilation support was a material change in circumstance and served as grounds for renewing the matter.
It is in Alfie's best interest to travel to Italy, where doctors are ready to care for him, the legal team argued in court. "We're still holding out hope because Alfie continues to fight," said Kiska. Since the toddler has been "denied nutrition" for more than 24 hours, he said, "we're going against the clock."
A representative of the Italian Embassy attended the hearing, while an air ambulance waited outside Alder Hey Hospital to fly Alfie to Italy. Andrea Williams, chief executive of Christian Concern, said, "it cannot be in Alfie's best interests to be left in Alder Hey where the court order is to let him die. Alfie's best interests would be served by allowing him to travel to Italy." Williams said the "common sense approach" would be for Hayden to discharge all the court orders which detain Alfie. Having failed to gain the court's permission to fly his son to Italy, Tom Evans told British media on Thursday morning that he will be speaking to the doctors at Alder Hey about bringing Alfie home.
Professor Dominic Wilkinson, a consultant neonatologist at the John Radcliffe Hospital and director of Medical Ethics at the Oxford Uehiro Centre for Practical Ethics at the University of Oxford, said, "In Alfie's case, none of the foreign experts have offered any new treatment or any new outlook for Alfie. The Italian specialists have apparently indicated that they believe that his care should be palliative."
The high court ruled on Tuesday that Alfie may be allowed home from Alder Hey, where his life support has been withdrawn following a long legal fight, but barred the parents from taking their son to the hospital in Vatican City.
On Wednesday, three court of appeal judges backed the decision made at the high court the previous day to deny the request to fly Alfie to Italy after he was granted citizenship there.
The ruling followed a flurry of legal arguments by lawyers for Tom Evans and Kate James, the parents of Alfie, who was said to be “struggling” on Wednesday after being taken off life support. On Wednesday, the appeal judges heard that James was now represented by a different barrister, Jason Coppel QC, who said she had told him by telephone: “Alfie is struggling and needs immediate intervention.”
Coppel advanced arguments on grounds that ranged from drawing on legislation governing EU freedom of movement through to suggesting that the child’s new Italian citizenship was a change in circumstances that should be taken into account.
An “erroneous” decision in the UK could open up the doctors who had been involved in treating Evans to criminal proceedings in Italy, he added.
He and Paul Diamond, the barrister representing Alfie’s father, both argued that there had also been a change of circumstances in that the boy had been surpassing expectations of how he would cope after his breathing tube had been removed 48 hours earlier.
The barrister for Alder Hey told Wednesday’s hearing that a focus on repeated appeals by Alfie’s parents meant they parents had been unable to engage in any discussion about withdrawal of care.
Rejecting the arguments put forward by legal counsel for the parents, Michael Mylonas QC, said that the doctors had never said that the child’s death would be instantaneous after his ventilator had been removed.
Contrary to what counsel for the parents suggested, there was no new medical evidence, he added. “It has never been said to this family that Alfie would die immediately or before sundown.”
Mylonas said nothing had changed in respect of Alfie’s ability to travel to Italy, telling the judges: “Alfie stands exactly the same risk of brain damage in transit.”
The Italian hospital has acknowledged it will not be able to find a cure, but has proposed maintaining Alfie’s life for about two weeks while doctors tried to investigate his condition. But the courts have accepted the view of the experts who have been treating him at Alder Hey that there is no realistic prospect of further treatment, other than palliative care.
Mylonas said the “tragedy” for the parents was that Alfie looked like a normal child. Lord Justice McFarlane said the family had the “awful journey” from getting to know their baby, only for signs to appear two or three months later that “all was not well”.

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