Alfie Evans shows we don't do death well

A little boy in Britain named Alfie Evans hadn’t reached his second birthday when he died April 28. His well-documented medical struggle sent ripples around the world, including in the United States, where a growing chorus of well-wishers rallied to the toddler’s side. His sympathizers said they were arguing for the sanctity of life and the rights of his parents.

I suspect it wasn’t life, but death, which motivated them most.

Evans had a degenerative neurological condition so rare doctors were unable to definitively diagnosis it. He spent more than a year in a semi-vegetative state in a Liverpool, England hospital. Eventually, his parents and doctors could not agree on what should be done after tests detected brain impairment so severe Alfie was unlikely to recover and that further treatment may even cause the toddler pain. The hospital said it went out of its way to accommodate the parents’ wishes, including allowing doctors of the parents’ choosing to consult on the case. Alfie's parents said that wasn’t enough and wanted a chance to try other, long-shot experiments elsewhere. Courts decided it wouldn’t be in the child’s best interest to be moved to another facility, given his condition.

The reaction was sharp. A former U.S. congressman said Alfie's case proves why Americans need access to AR-15s, to make sure what happened to the boy doesn’t happen here. Former Republican Arkansas Gov. Mike Huckabee tweeted that the story illustrates why “we should not let gov’t make decisions that only God should make.” Texas Sen. Ted Cruz used Alfie to argue against “socialized medicine.” Even Pope Francis got involved, as the Vatican offered to take the boy and his parents in to keep him breathing on a ventilator, to make sure his heart kept beating.

Though I don’t doubt the sincerity of some of those who were outraged by Alfie's predicament, something else was also at play, beyond the naked politics. They were likely motivated less by trying to beat back a supposed “culture of death” than by an irreconcilable fear of death itself, or the inability to have final say over when we leave Earth.

We don’t do dying well. It’s one reason we spend more on medical costs than anywhere else on the planet – for outcomes not nearly as good as those in other developed nations. No matter the medical system, end-of-life care decisions will be affected by conflicting spiritual beliefs; emotional eruptions; seemingly cold-hearted (but often necessary) cost analysis; family considerations; and the persistent wish that we could somehow cheat death, even though we know we can’t. Not too long ago, I thought death had come for me.

A few years ago, I was in a hospital for nearly two weeks thinking I might not live. I didn’t think about Heaven or Hell, but about whether my wife could find the life insurance policy. Knowing my family would have a bridge to the other side of their grief was the only thing that could give me comfort. I’ve also seen a grieving mother standing alone in an intensive care unit struggling to decide whether to take her dying daughter off a ventilator. She didn’t want to be seen as “giving up” – even though she had done everything she could – but neither did she want her daughter to suffer unnecessarily or remain in a state she would not have wanted.

I’m glad there was no one threatening to overrun the hospital or use my predicament, or that grieving mother’s, to score political points. Those moments are hard enough. Our fear of death makes them more difficult still.

This story was originally published May 4, 2018 at 1:12 PM with the headline "Alfie Evans shows we don't do death well."