Who decides for Alfie?

A truly heartbreaking medical-legal drama is playing out in Britain, where the parents of 23 month-old Alfie Evans refuse to let him die:

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.

“Alfie has received the full support of Alder Hey’s medical and nursing teams since being admitted,” the specialist children’s hospital said in a statement. “Sadly he has remained unresponsive to treatment and his condition has rapidly declined.”

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.

[…]

…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, according to a statement from Alder Hey.

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.

As of this writing, Thursday evening, the little boy is still alive.

Unsurprisingly for such an emotional case, many members of “Alfie’s Army” have made threats against the hospital and its doctors, while some American conservatives are using the case to score points against “socialized medicine.” Would that they were so concerned about American children with pre-existing conditions, who were uninsurable until the Affordable Care Act (“Obamacare”) came along.

That said, the many problems with American health care don’t make this case any less disturbing. I could better understand the hospital’s position if they were being asked to use scarce resources to keep Alfie Evans alive indefinitely, but the Italians and the Vatican are willing to step in and take the case off their hands.

The parents’ right to decide their children’s medical treatment, even if based on deeply held religious convictions, is not absolute. But Alfie’s parents are choosing between an extremely faint hope and a situation where there is no hope at all.

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