Subculture: End-of-Life Doulas - Pacific Standard

Subculture: End-of-Life Doulas

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The latest in a series of miniature portraits of life on the fringes.

As Told to Elena Gooray

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Deanna Cochran. (Photo: Jody Horton)

New technologies and medicines help us live longer then ever, but there’s a growing recognition that they don’t help us arrange for a more accepting, humane death. As the surgeon and bestselling author Atul Gawande wrote in 2014 of our reliance on dignity-sapping, scorched-earth treatments to stave off the inevitable: “This experiment of making mortality a medical experience is just decades old…. And the evidence is it is failing.” That’s where end-of-life doulas come in: They help the terminally ill and their loved ones coordinate living arrangements, family meetings, and medical care; at best, they help patients and families find the language to discuss the inevitable. And their numbers are growing.

  • Maybe I’m not your typical death worker, but I enjoy life. I still honor my own grief and sadness and whine about them like everybody else. But I have to be proactive about my healing so that I can help you.
  • Our popular culture is very death-phobic. People feel very free when they finally get to talk about death — like it’s a taboo that they get to go and explore. There’s a lot of intensity and catharsis and giggling, like, “Ooh, we get to talk about this.”
  • I am always thinking about death. Everywhere I go, I’m talking about somebody’s death. At the grocery store, the checkout person is telling me about someone dying, or their own illness. I don’t know how that happens.
  • We have an issue with dependency on all our innovations and technology to keep us alive. We are built to survive. But if we’re going to be making these choices to live at all costs, we also need medicine that’s going to give us the most peace around it. That’s palliative care.
  • If you get a terminal diagnosis and decide you’d rather take a cross-country trip or go to Disneyland, why feel like you’re suicidal for doing that instead of going through more treatment?
  • I encourage my daughters to come with me to hospitals or funerals, if they want to. One daughter likes to do it, the other doesn’t. I won’t push them either way. They do know they’re going to do a home funeral for me. We just talk about it as if it’s “What are we having for dinner?”
  • I have all of my feel-good stuff for my own death written down. I want light, I want sun. I want people there. I don’t want it to be so sacred people are afraid to open their mouths. I want them to laugh. I would love to be sung to.
  • I’ve seen so much death and how unfair it can be. When you see enough of that, you realize that every moment that you are breathing and comfortable is a beautiful moment. You say sorry, you ask for forgiveness, you live this moment and you think of the next one as “How do I really want to spend this time?”

Deanna Cochran, 55, Austin, Texas, end-of-life doula, hospice nurse, and founder of the End of Life Practitioners Collective (as told to Elena Gooray)

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