Terminally ill British toddler Alfie Evans has died just a little under one week after having life support withdrawn. The boy's father, Thomas Evans, annouced his passing on Facebook yesterday. "My gladiator lay down his shield and gained his wings at 02:30", he wrote. "Absolutely heartbroken".
The protracted legal dispute over the boy's fate reached its climax on Monday, with protesters attempting to storm Alder Hey Children’s Hospital in a bid to have the boy released. Footage showed dozens of angry protesters running towards a revolving door at the entrance of the hospital, with police forming a line to block them. The 200-strong crowd proceeded to form a human roadblock on the main road to the hospital, linking arms and chanting “save Alfie”.
Pope Francis expressed his sympathy for the boy's family in a tweet, writing: "I am deeply moved by the death of little Alfie. Today I pray especially for his parents, as God the Father receives him in his tender embrace".
The Italian government had gone as far as to grant the boy citizenship in the hope that his transfer to an Italian hospital would be approved.
Evans was suffering from an unidentified neurodegenerative disease, and was said by doctors to be in a “semi-vegetative state”. Specialists from Alder Hey Hospital said that “almost the entirety of Alfie’s brain has been eroded, leaving only water and cerebral spinal fluid”. The British Court of Appeal UK has told staff to move the child to palliative care and withdraw life support.
By the end of the week, the boy’s parents appeared to have accepted the court’s decision to discontinue treatment. On Friday, Alfie’s father Tom Evans thanked supporters for their solidarity, but told them “to go home”:
"We are very grateful and we 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...We would now ask you 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."British ethicist Iain Brassington criticised the responses of protesters and the Italian government, labelling them “horrible, irrational, indefensible, and – for want of a better word – nuts”. Readers of the blog responded spiritedly to Brassington’s rebuke (see the comments to his article).
Vox News journalist Tara Isabella Burton summarised the debate as a disagreement about whether parents or the state should decide what is in the best interests of a child:
Ultimately, however, the Evans case is about who gets to decide what the best interest of a child really is. When the view of the state and the view of a child’s parents are at odds, who gets to have the final say? The answer ties into wider questions — about medical ethics and what it means for a life to be “not worth living,” and about popular trust, or lack thereof, in the UK’s National Health Service, a paradigmatic example of both the pros and cons of socialized medicine.
“Die, my dear Doctor! That's the last thing I shall do,” said the 19th Century British foreign secretary Viscount Palmerston, not long before he slipped his cable. For all of us, dying is the last and perhaps most significant moment of life. Which is why recording the exact cause of death is a matter that calls for scrupulous accuracy – not just for epidemiological purposes, but also as part of our personal and social history.
But our disturbing lead story today – that Flemish doctors under-report euthanasia by a mind-boggling 550% -- throws all this to the winds. The most common practice, at least according to the latest research into the topic, is that most Flemish physicians who practice euthanasia lie on the death certificate.
Perhaps their offence is more understandable than jurisdictions which require doctors to lie. In many, like Oregon, they are told to record the patient’s underlying disease as the cause of death – as if JFK died of Addison’s disease rather than an assassin’s bullet.
Perhaps we should keep in mind the wise words of the author of a study on death certificates: “Death certificates are really important. We owe it to our patients to be able to accurately record why they die” — and thus to “help the living.”
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