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‘It’s your life, it’s your death': NYC’s end-of-life doulas are trying to make dying a little better
By
Kerry Shaw
Published Apr 1, 2023
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Briana Elledge/Courtesy of Virginia Chang
By
Kerry Shaw
Published Apr 1, 2023
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For nearly a decade, Stevie Santangelo was a popular SoulCycle instructor who helped New Yorkers get fit. Now, in a new career, she’s learning to help them deal with death.
Santangelo knows that SoulCycle – the company that elevated spinning classes to a lifestyle – may seem an unlikely launch pad for death work. Yet the two are not wholly dissimilar; she describes both professions as “very emotional, very rewarding, very revealing, very intimate.”
Santangelo is part of a small but growing field of end-of-life doulas, who support dying people and their loved ones. That support can take many forms: staying at the bedside, helping navigate hospice options, listening to grieving loved ones, making a playlist, acting as a buffer between difficult relatives.
“It's more than a listening presence. It's more than an understanding ear,” said John Schmidt, an Episcopal priest at All Angels’ Church, who has worked with end-of-life doula Emma Acker through an outreach program at his church aimed toward people dealing with food or housing insecurity.
“I would use a phrase like incarnational,” said Schmidt. “They're able to really be fully there with you in a way that's both specialized in knowledge, but it's also personalized.”
“I actually don't want Uncle Bob to speak at my funeral.”
Ashley Johnson, president of the National End-of-Life Doula Alliance
The term “end-of-life doula” may be relatively new, but the idea isn't. People have been doing this work for as long as people have been dying, said Kris Kington-Barker, director of outreach and care provider programs at the International End-of-Life Doula Association, or INELDA, which offers trainings.
There are no national certifications to become an end-of-life doula, nor is there a governing agency, but there are indications that the field is growing: INELDA trained 1,281 people in 2022, up from 25 in 2015.
The National End-of-Life Doula Alliance, a nonprofit membership group, boasts a membership of 1,500 — compared to 300 four years ago, according to its president, Ashley Johnson.
Most of that growth was driven by the COVID-19 pandemic, said Johnson.
“People had to face their own mortality,” she said. “And the possibility of mortality no matter how young, old, healthy, able-bodied you were.”
Stevie Santangelo says she "would like to make people's second most profound moment in their life, better somehow."
An overarching theme expressed by doulas is choice – specifically helping people understand that they have choices, even amid a terminal prognosis.
“It's your life, it's your death,” said Johnson. “I am just there to empower that reality.”
She said she talks to dying people who realize, “I don't want that damn casket,” or “I actually don't want Uncle Bob to speak at my funeral.”
That desire for empowerment is what inspired lifelong New Yorker Virginia Chang to become an end-of-life doula.
“I really never thought about death and dying,” said Chang, who is 59. But, within a span of seven months beginning in 2016, she lost three family members. Two of the deaths “did not go well” and she recalls feeling powerless and hopeless as her wishes for her loved ones were ignored by medical staff.
While trying to process her grief months after the third loss, Chang attended a lecture where the speaker described end-of-life doulas.
“My one takeaway from that talk was, why wasn't there someone like that there for me during this past experience?” Chang said.
Though she couldn’t rewrite her own story, Chang realized she could help others with theirs.
“I literally changed my whole life and I started exploring the path to becoming an end-of-life doula,” Chang said.
Doulas are also part of a larger effort to change the conversation around death — some call this the “death positivity” movement. The idea is not to be positive about death, but rather to speak openly and honestly about it, because death is universal, expensive and complicated.
Resham Mantri got into this work after experiencing care from end-of-life doula Jae Carey during her father's death.
Courtesy Resham Mantri
For Resham Mantri, a death doula in Bed-Stuy who hosts online talks about death and grieving and writes regularly about the topics, changing the conversation around death includes discussing the fact that many deaths are caused by racism and systemic oppression, and that many people are denied a “good” death.
“I would start with: who is dying and how in this country? I don't actually think that's separate from death work,” Mantri said.
Rates for these services vary: Some end-of-life doulas work pro bono, some barter and others offer packages, usually on a sliding scale. Most doulas said it was a calling, and almost everyone interviewed for this story mentioned other income sources.
Although dealing with death can seem macabre, doulas describe it as life-affirming.
Emma Acker, a mom of three in Brooklyn who has been an end-of-life doula since 2019, said the work has shifted her perspective, trickling down to mundane moments like riding the subway. She said when she started working as a doula, she’d observe strangers in a crowded train car and her mind would wander to imagining them on their deathbeds.
“It sounds morbid,” she said, “But it actually helped me really value and see human beings in a very different way.”
Chang sounded a similar note: “Being aware of your mortality only enhances how you live your life by being able to appreciate living every single day … You can’t imagine how much richness you can bring to your life by just being aware of your death.”
Santangelo, the former SoulCycle instructor, said people tend to be very curious about her death work — she sometimes doesn’t mention it for fear of monopolizing a conversation.
“You would be surprised at how exciting death is for some people,” she said. “When you speak about end-of-life transition — personalities, family, da-da-da-da — you're not talking about death anymore. You're talking about life. We are talking about life.”
An earlier version of this story misstated where Emma Acker is based.
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Kerry Shaw
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