PHILADELPHIA — Bill Siemering found himself Googling what age people die of natural causes in their sleep. He'd tell his wife where to find salmon cakes at the farmer's market when he was no longer alive. He was certain death was drawing near, though he had no terminal diagnosis.
"I had been talking to my wife about dying and she was not pleased," Siemering, 88, said in a recent interview near his Wyndmoor, Pennsylvania, home. "People don't like to hear about this."
So Siemering decided to work with Belle Sandella, a death doula who lives around the corner.
Death doulas are non-medical guides for the end of life. Drawing their name from the work of birth doulas, they help people plan for their final moments, advocate for them in hospitals, and sometimes sit with them as they draw their last breaths. Part spiritual teachers, part practical helpers, they also support grieving families.
Such guides are part of a growing "death-positive movement" that encourages people to talk openly and frankly about a reality we will all face. (Mortician Caitlin Doughty cheekily gave the movement its name to mirror that of the "sex-positive" movement). As hospice has become a multibillion-dollar industry, some see the work of doulas as an antidote to highly-medicalized or profit-driven treatment that pursues fixes even at the end of life.
"You can't fix dying. It just doesn't work," said Kris Kington-Barker, director of outreach and care provider programs at the International End of Life Doula Association (INELDA), which has trained more than 5,000 end-of-life doulas since 2015. Instead, she said, doulas help people "become more familiar with how to take care of each other and our own."
Though organizations that lead doula training, like INELDA and the University of Vermont, say they've seen a spike in demand for classes since the beginning of the pandemic, there's no state licensing or required training for the role. INELDA has trained 225 death doulas in Pennsylvania since 2015. But insurance doesn't cover the work, meaning it's hard for people to make a living at it, and many potential clients don't even know it's an option.
Sandella, 46, worked as a cardiac and telemetry nurse before training with INELDA in 2021. In sessions in her living room, Sandella talks clients through regret, unresolved tensions, and anxiety. She declined to comment on her fees though she works on a sliding scale, which INELDA recommends. Each week, she also visits with a client who has dementia; kneeling in front of her, wearing the same floral barrette, Sandella introduces herself.
"I'm going to be taking care of you today," she says. "And I'm so happy to be here."
Siemering, one of the founding fathers of NPR and now a fellow at the Wyncote Foundation, has found his work with Sandella meaningful in both sweeping and small ways. With a renewed focus on being present and observant, he notices the skeleton of the trees behind his house and also how his fingernails keep growing, he said. Some of his anxiety about death has receded.
Other death doulas work with clients who have a terminal diagnosis or who are actively dying. Rev. Jamie Eaddy-Chism of East Falls has worked as a death doula for almost 10 years and founded the business "Thoughtful Transitions" in 2019 to help people deal with loss.
Her work never fits into a single genre: sometimes she declutters a room or lights a scented candle; sometimes she acts as a kind of translator between families and medical workers.
"It's helpful for someone who makes it very plain," said Eaddy-Chism. "You see what's happening with their skin. You see what's happening with their breathing."
Recently, a mother hired Eaddy-Chism to serve as a death doula during the final three weeks of her 27-year-old son's life. Facing his fourth round of cancer, the young man had chosen not to undergo further treatment. While he could still speak, Eaddy-Chism talked with him about his fears (would there be pain?) and hopes (he wanted his young daughter to be cared for).
After he died, Eaddy-Chism met privately with the family matriarch, who found herself overwhelmed with anger that her son had died.
"The work with her was really to affirm that anger," Eaddy-Chism, who is also trained as a minister, said. "We normalize grief and cultivate space for people to experience and express it."
Some decide to train as doulas because of their own experiences with the end of life. Annie Wilson, 37, sat with her sister, Torrie, who died of a heroin overdose in 2016 after being brought to the hospital.
Wilson was struck by the juxtaposition she experienced at her sister's bedside: sitting with her felt like holy work, but the bustle and chaos of the hospital distracted from it. After volunteering as a hospice worker, Wilson started "Sunset Companions" with a former co-worker just before the pandemic.
"There were all these extraneous details that made this very important moment a lot more mundane and stressful," Wilson said. "I just wished so much that there had been a death doula present."
