Why Are so Few People Signing up to Be Organ Donors?

Have a heart.

Photo Credit: Michael Fenton/Unsplash

When friends asked Greg Segal, whose father waited five years for a heart transplant, how they could help, his answer was immediate: “Register as an organ donor.” Obviously, Greg didn’t expect anyone to actually give a heart to his dad, but it bothered him that only twelve percent of his fellow New Yorkers were registered donors. When his friends didn’t follow through and register he would often feel betrayed. So he stopped asking. “It was too painful to have that experience. I felt like people didn’t care to do something that was literally costless,” Greg said recently.

There is a profound disconnect in our society. Ninety-five percent of American adults support organ donation, but only fifty-four percent of us are officially signed up as donors. I could go on for hours about the long waitlists of sick people, and the number who suffer and ultimately die while waiting for a transplant, but we would arrive at the same place. People know organ donation is important. The better question is, why aren’t we registering?

Part of the answer is logistical. We record this decision at the DMV, and most of us avoid the DMV until we absolutely have to pick a number and stand in line. Greg, inspired by his dad’s experience and after many sleepless nights, cofounded Organize with Jenna Arnold to revolutionize the donor system and make organ registry available through something as simple as a tweet. Greg and Jenna are making tremendous strides, but I believe there’s a deeper mindset we need to address when we consider why more people don’t register. And I don’t think it’s apathy. For many of us there is a cognitive bias deep in our mental architecture that feels like instinct, and tells us, If I don’t think about my death, maybe it won’t happen. It’s the same reason more than half of Americans don’t have a will.

I am a huge cheerleader for Organize, but I don’t think we’ll ever fully solve this problem until we make the topic of our own deaths less taboo. A UK company, Beyond, that offers price comparisons for funeral services agrees, and created an advertising campaign meant to break through the discomfort. It included ads and billboards such as two people running into the surf, but carrying coffins instead of surfboards. Or another that read, “Don’t get R.I.P’d off.” The campaign was met with significant push-back from a culture that is still deeply triggered by frank discussion or even humor about our inborn mortality. “Truly awful,” “vile,” and “insensitive” were just a few of the negative reactions.

Billboards are one indicator that we are moving toward an authentic cultural shift towards open death discussions, yet I think we need an approach that’s a little more interactive and more grassroots. When Angel Grant and I started Death Over Dinner, a platform that guides users through having conversations about death, our goal was to change the way we talk about our mortality, one conversation at a time. We can make it safe to talk about death, whether we do so over candlelight, wine, and good food, on a walk, or in a social media post that signifies our wish to be a donor. Talking about death can bring us closer together, put us in touch with our humanity, and remind us what’s really important.

The more we perpetuate the myth that not talking about our death will keep it at bay, the more we lose. When we live within the contradiction that organ donation statistics suggest, we lose the chance for connection, communication, and the richness that comes from facing our mortality head-on. We lose the chance to connect with the best part of ourselves, a part that could save a life. 

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