| But Few Can Make a Living Doing It (part 1 of 2)

| Bella Bromberg

| Six months after Lindsey Warren’s ex-husband died by suicide, she found herself, on a frigid October afternoon, opening her computer to begin asynchronous coursework for an eight-week end-of-life doula certificate program. 

Most end-of-life doula programs bar people who have experienced loss within one year from taking their courses, as it can complicate and jeopardize the learning process; therefore, Warren, 44, faced limited options. Ultimately, she enrolled in the certificate program at the University of Vermont, which does not exclude actively grieving students. 

A former music teacher and deathbed musician, the Vermont-based doula now dedicates her time to preparing families and clients for their final days. 

After receiving her certificate in the fall of 2023, Warren supported her first client as a death doula, a 95-year-old former violinist named Mabledean Hancy.

At the end of life, as the body slows into its final days, it becomes supremely dehydrated. One’s skin gets dryer, and terminal secretions can lead to snoring noises in the back of the throat, sometimes referred to as “death rattle.” To ameliorate this discomfort, proper mouth care is imperative. 

But when Warren first began visiting Hancy in her cramped room—drab walls, tile floor, cacophonous backing track—nursing home staff said she had been clamping her jaw and refusing to have her mouth swabbed. When Warren tried to administer mouth care on an early visit, however, Hancy accepted it gladly, sometimes opening her mouth and panting like a dog to indicate she wanted more time with the watery sponge and lip moisturizing cream. 

Warren attributes this to the fact that as a death doula, she was able to spend extensive time at Hancy’s bedside, allowing for Hancy to become comfortable enough to receive care. Nursing home staff, by contrast, are often overworked and unable to wait for a patient to feel completely at ease. 

“Someone at a facility won’t always sit and go slowly,” Warren said. 

But Warren, whose main objective was to keep Hancy at the center of care, had the time. 

“Lindsey was able to be so helpful in practical ways that lifted the burden and allowed me to be the grieving daughter and not just the one in charge,” said Dawn Hancy, 56, Mabledean’s daughter. “That’s just huge.”

During one session, Warren brought a battery-powered candle (because nursing homes don’t allow fire) so she could carry out a reiki ceremony for Hancy. 

“It meant so much that she knew about that and thought of that,” Dawn said. 

As of late, Warren said she is “swimming” in inquiries for her business. Even so, she cannot fully support herself—along with her teenage son and her 90-year-old mother-in-law—on deathcare work. 

Some doulas, like Jill McClennen, face no other choice than considering a pivot.

On a recent afternoon in New Jersey, McClennen, 47, sat at her kitchen table updating her résumé. For years, in the wake of her grandmother’s death and its profound emotional impact, McClennen had hoped to support herself as a death doula, first volunteering her services for free at hospitals and hospices. Compensated primarily in experience, she guided dying patients and their families through advanced directives, final wishes, bedside vigils, and, in several cases, New Jersey’s Medical Aid in Dying (MAID) process. Still, the work never paid enough to count as a sustainable livelihood. With her husband’s job in food imports destabilized by tariffs in early 2025, McClennen was now seeking full-time employment, ideally in elder care. The emotional labor she provided at the end of life as a doula, she had learned, was not considered billable care.

In the United States, most terminal care is funded through the Medicare Hospice Benefit, which reimburses providers a flat daily rate intended to cover all services related to a patient’s final months: nursing visits, medications, social work, and, sometimes, chaplains, in the case of pious patients. But because the per-diem payment is not itemized by service, hospices must prioritize what can be swiftly delivered and documented with ease. 

Aspiring private-practice death doulas like McClennen occupy a growing but economically precarious position within this end-of-life care landscape. They provide emotional, logistical, and spiritual support to dying people and their families, often supplementing hospice teams constrained by staffing levels and Medicare reimbursement structures. 

Yet because their services are explicitly nonclinical, death doulas are themselves excluded from Medicare and Medicaid coverage. As a result, doula care is almost always paid for out of pocket or not at all, reinforcing a system in which the labor of care is valued only when it can be medicalized, credentialed, and coded. This situation leaves families on the hook to pay for a doula’s services and practitioners to rely on volunteer work, spousal income, or secondary employment. Of the 37 doulas interviewed for this piece, none could support herself on doula work alone. 

For Lisa Nierenberg, 73, a retired family physician who volunteers as a doula at several hospices in New Jersey and Miami, this lack of formal reimbursement structure highlights a fundamental error in how this country addresses deathcare.

Nierenberg admitted the care a doula provides is fundamentally different from medical care. “A doula shouldn’t be doing wound care or showering or activities like that,” she said. “That’s not the training you receive. But the educational and emotional component that having a doula involved in a patient’s care provides is huge.” What Nierenberg provides in hospice settings often never appears in a medical record. “Calmness. Tranquility. This is normal. We expect this,” she said. “People are so much more relaxed when they feel like someone is in charge who’s been there, done it, and can reassure them and listen to them,” she said. She frequently tells families, “You’re suffering more pain than your loved one is.”

Such reassurance can reshape the emotional climate of a room. Moreover, the heaviness of the work is interspersed with moments of levity. “Tell me about mom when she was healthy,” she’ll often ask. “How many grandchildren?” 

But despite the technically non-medical nature of this work, she thinks it’s essential for insurance to cover it. “The biggest positive change would be to get covered by Medicare,” she said. But she doubts it will happen anytime soon. “Not in this administration,” she said with a mirthless chortle.

Medicare hospice coverage is provided under Medicare Part A for eligible patients; it covers a comprehensive set of services related to terminal illnesses but does not include non-clinical services provided by independent death doulas.

“I think our care system in this country is very piecemeal,” Nierenberg said. “And that’s a big problem, because you’re trying to literally patch together a lot of services for a family in need or a patient in need,” she said.

Medicare has two Advanced Care Planning (ACP) CPT codes—99497 and 99498—that reimburse for structured discussions about advance directives and end-of-life preferences. These are payable only by licensed clinicians: physicians, nurse practitioners, or physician assistants. Doulas, therefore, are not eligible to bill these codes.

However, regulation would bring more paperwork, and thus less freedom to practice the work of deathcare itself. “Because doulas have never been institutionalized in this country, I think we’ve been spared a lot of the charting and indicating our time spent with families for reimbursement,” she said. 

That sort of institutionalization could result in doulas succumbing to the bureaucratic problems of the greater medical system. “Often, you’re more likely to see nurses at a computer rather than at a bedside,” Nierenberg lamented. “If I had to write a ten page report every time I see a patient, I would see a lot less patients,” she said. 

The most challenging part of this work, Nierenberg said, is facing patients who die completely alone. “I’ve walked into rooms that are full of children,” she said. “And I’ve walked into rooms where people are alone. And that’s the hardest.” 

If nothing changes about how this country funds or values end-of-life care, Nierenberg thinks the future looks “pretty grim.” Lately, she’s been feeling cynical about American healthcare. “There are going to be more and more dying people,” she said. Then, referring—with slight jocularity—to death itself: “It’s a very common illness.”

Bella Bromberg is a freelance writer based in New York City. She holds a bachelor’s degree in English from Barnard College and is earning her master’s from Columbia Journalism School. She works at The Moth, the storytelling nonprofit.

Support for this reporting came from the Better Life Lab at New America.