By Anthony Ha
Top image: Virginia Chang, from A Good Death by Jean Chapiro and Alison Boya Sun
Virginia Chang’s first real exposure to death came in 2016, when she lost three family members in seven months—first her father, then her mother-in-law, then her mother.
“I was wholly unprepared, grief-stricken, with no coping skills,” she recalled.
But in this pain, Chang found a new purpose. As she grieved, she said she was “fortunate” to learn about end-of-life doulas—a relatively new role in the United States (albeit one that draws from older traditions) with a focus on providing emotional, practical, and spiritual support to people who are dying, and to the loved ones around them.
“The first thing that came to mind was, why wasn’t there someone like that for me?” she recalled. “Someone to educate me, to inform me, to advocate for me, or just to give me a hug and say ‘I’m sorry.’”
Even though Chang didn’t get that support when her parents died, she resolved to provide it to others, eventually becoming an end-of-life doula herself.
Drawn to Be a Doula
Others have been drawn to similar work after their own confrontations with mortality. For another doula, Diane Button, it was a breast cancer diagnosis. For Douglas Simpson, executive director of the International End-of-Life Doula Association (INELDA)—and a trained doula himself—it was his father’s death, followed by his son’s birth a year later.
In fact, since its founding in 2015, INELDA says it’s trained nearly 6,500 doulas worldwide. And the National End-of-Life Doula Alliance, which was founded in 2018, has grown to more than 1,400 members.
The field’s growth reflects a broader “death positivity” movement that advocates for more candid conversations about mortality. For Chang, these trends represent a shift away from an overly medical and diagnostic approach to death—an approach that has obvious value, but also risks eliminating “human-to-human, family-to-family, community-to-community contact” in how we care for each other.
“What’s happening is, the pendulum is swinging back, and we’ll find a good balance,” she said.
The Independent Lens documentary Sister Úna Lived a Good Death explores these issues in the context of a real death, following the titular Catholic nun in the final months of her life, after she’s received a terminal cancer diagnosis. Sister Úna prepares for her death with profanity, humor, and even joy—planning her funeral, singing karaoke, and taking a final trip to say goodbye to longtime friends.
Sister Úna mediates at the sea, in the documentary Sister Úna Lived a Good Death
“It’s their journey”: Companions to the dying
In essence, the end-of-life doula’s goal is to help a dying person find their own version of Sister Úna’s good death. That help can take many forms: Doulas can work on “legacy projects,” allowing a dying person to explore how they want to be remembered; they can help plan end-of-life care; or they can simply sit at someone’s bedside.
Chang, for example, said she focuses on emotional support, working with the dying to help them move from fear to acceptance, peace, reverence—and in some cases, “even joy and celebration.” (Though she acknowledged not everyone can get there: “It’s their journey, it’s what’s within their capacity.”)
“Death is just one day,” she said, while a doula’s work can start weeks or months before someone dies; it can even start before they’re sick.
Button said the work differs depending on how close someone is to death. If they still have months to live, she might start with a legacy project. Then, when death is more imminent, her role shifts to “offering respite for the family members” and discussing the logistics of the death itself—who the dying person wants in the room, how to make them comfortable, and so on.
One key distinction: Whatever support the doula provides, it’s not supposed to be medical. In addition, Button argued that the work has to be driven by the dying person’s desires and beliefs, not the doula’s.
“We’re companions to the dying,” she said. “We’re never in charge, never take the lead.”
An end-of-life doula is there to provide guidance and support throughout the dying process. Button said that while hospice provides “the medical layer,” a hospice nurse “doesn’t have time to sit with a client to write letters to family or help them with a legacy project, or go through their life and review some of those areas where they may need forgiveness.”
You may have heard other terms for this role, such as death midwife or death doula, but Button argued that “end-of-life” better captures the full scope of the doula’s work.
“Death is just one day,” she said, while a doula’s work can start weeks or months before someone dies; it can even start before they’re sick. “Working with an end-of-life doula is about preparing and planning so that each day can be as meaningful and as full as possible.”
Virginia Chang
Training to Be an End-of-Life Doula
Currently, anyone can call themselves an end-of-life doula, no license or training required. Indeed, anyone can offer their own training—a recent essay by a retired nurse and trained doula complains that “a role that was once fostered within an organic community is now being sold to those who can afford the ‘training.’”
But as the field grows, it may shift towards more professionalization and standardization; Button and Chang both noted that they’re INELDA-certified, and they both teach at the University of Vermont’s Larner College of Medicine, which offers an end-of-life doula certificate.
With this shift comes the question of who can afford to do the work. Simpson said there are similarities between the majority of doulas who have trained with INELDA—”white women over 65 who see this as almost a second career, and who also have the financial ability to do volunteer work.” But the organization is “making every effort to change that,” for example by offering 130 training scholarships in 2022.
At 36, Rebecca Wagoner is hoping to become part of the next generation of doulas. Like Button, she’s a cancer survivor—she said she “felt really at peace with dying,” with her real challenge being how to “bounce back to living” once she was cancer-free.
“Everyone deserves to die a death that’s honored.”
Wagoner attended Alua Arthur’s Going with Grace training retreat and currently participates in an online “death cafe” (a discussion group whose participants meet regularly for unstructured conversations about death and related topics). She said she’s starting to figure out where she wants to focus her end-of-life work—likely somewhere around green burials, natural death, grief, and bereavement. She’s also thinking about how this work can intersect with social justice.
“I don’t want it to be a career where you have to work for wealthy clients,” she said. “I think everyone deserves to die a death that’s honored.”
To that end, Simpson said INELDA supports pro bono doula work, including in prisons, and is also having conversations around insurance reimbursements for these services. But he acknowledged that some doulas are wary of this shift.
“They fear it will turn into hospice, with all the administrative requirements and all this paperwork, and it gets away from sitting with the dying person,” he said.
Chang’s ambivalence is more philosophical, and tied to her belief that an end-of-life doula’s role involves sharing “lost knowledge” about an older, more communal way of dying.
“This isn’t something that you need to hire people to do, that you have to have trained professionals to support your grandmother who’s dying,” she said. “If we all knew how to care for each other, if we didn’t need end-of-life doulas, that would actually make me the happiest. Hopefully, we can get to that place. But I don’t think it’s going to be in my lifetime.”
Learn More
International End-of-Life Doula Association or INELDA
National End-of-Life Doula Alliance
Going with Grace training retreat
Virginia Chang: Till the Last Doula
Tricycle Magazine: “Doulas at the Other End of Life“
NPR: “A Death Doula Says ‘Get Real’ About the End” (April 17, 2024)
Anthony Ha is a New York-based journalist focused on the intersection of culture and tech. He previously worked for TechCrunch, Adweek, and VentureBeat. His work has also appeared in BuzzFeed and Engadget, and he currently co-hosts the Original Content podcast.
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