The Uncanny Valley of Death

Heroic medical procedures can leave us in a limbo between life and accepting what's beyond.

This article originally appeared in Time Magazine, 20 January 2014.

Omari Sealey seems like a good man, the kind you’d want at your side during life’s hardest moments. He is the uncle of Jahi McMath, the 13-year-old who was declared dead by doctors three days after a tonsillectomy went horribly wrong on Dec. 9. He has bravely stepped before the cameras, along with Jahi’s mother Latasha Winkfield, to explain why they refuse to remove the equipment keeping Jahi’s body alive.

“Our faith is so strong that we don’t even think about the possibility of death,” he told CNN in December. “We believe with all the prayers from everyone around the world and the prayers with our family that she will wake up.”

I admire such faith. I am moved by the outpouring of love and concern from around the world and the donations (almost $55,000 and growing) to the family. But I’m afraid Jahi’s family is putting its faith in the wrong place, in technology that can never give them the miracle they seek.

Miracles are not the result of human or technological heroics. They come when we are at the end of our heroics.

There’s a phenomenon in computer animation called the uncanny valley. It describes an odd property of computer-generated representations of human beings. The closer the images get to total realism, the more disturbing they seem to become.

Today, more and more of us face another uncanny valley: the uncanny valley of the shadow of death. It’s the domain of those, like Jahi and former Israeli Prime Minister Ariel Sharon (since a stroke in 2006), who suffer grievous injury and are kept on this side of life by elaborate and increasingly heroic medical procedures.

Unlike the real valley of the shadow of death, which every human society has known, this uncanny valley is one that we modern human beings have created for ourselves. Far from solving the problems we want medicine to solve—our vulnerability and mortality—it can actually heighten them, leaving us more vulnerable and no less mortal.

Life in this uncanny valley’s shadow is neither death nor life. It calls forth mourning but also forbids it. It offers the slimmest of hopes, but in many, if not most, cases it slowly squeezes hope out of life one mechanically induced breath at a time.

A great deal is at stake in this uncanny valley’s shadow. Our society spends extraordinary amounts of money on care at the end of life. If all that money really did lead to flourishing health, it would be well spent.

But many families choose the uncanny valley without understanding just how hard the journey will be. Raymond Barfield, director of the pediatric palliative-care program at Duke, sees every day what researchers have documented: religious families are consistently the ones most likely to insist on heroic measures and most likely to resist doctors’ assessments of viability. It is the people with a “strong faith” who also want the most dramatic technological interventions.

“Medicine has access to massively powerful technologies that can keep molecules going in the right direction,” Barfield told me. “And when a family believes healing will come if they just demonstrate enough faith, they often believe they must use every possible technology to keep their loved one alive.”

I believe Omari Sealey when he says he has a strong faith. But a strong faith does think about the possibility of death. A strong faith accepts our limits as mortal creatures, including the limits of medicine and the ultimate limit of death.

Of course, a strong faith also accepts the possibility of miracles. I believe there are genuine miracles. Nearly every doctor can attest to having seen recoveries that had no plausible medical explanation.

But miracles are not the result of human or technological heroics. They come, if they come at all, when we are at the end of our heroics. And miracles are not magic. They do not come because we somehow persuade God to act by our strong faith. Sometimes, even for the most faithful, they do not come at all.

What we ultimately fear about death, I think, is that we will die alone and that we will die without meaning. The real promise of faith is that our deaths need be neither lonely nor meaningless.

The real hope for all of us is not that there is a machine that will save us but that even at the very end there will be someone who loves us, closer than our own breath. From what I’ve seen of those closest to Jahi McMath, that hope and faith is with her, stronger than any shadow.