A graceful goodbye: End-of-life doulas bring comfort to the dying 

In 2000, Lauren Sample got pregnant. She was ready to welcome her baby girl into the world, with dad and two siblings waiting for her. 

But still in the womb, the unborn daughter was diagnosed with trisomy 18, an abnormal genetic condition described to Sample as “incompatible with life.” No more than 10% of children survive past their first birthday. 

Struck by fear, Sample’s mind raced. Her daughter could die before or during labor. If she survived long enough to open her eyes, how much time did she have? Minutes? Hours? Days? The mother was terrified of losing the baby girl she loved. 

“I found my fear about death just fall away,” Sample said. “I wasn’t afraid anymore.”

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Her daughter Nora lived until 15. She had a “green burial,” where her body was laid to rest in a wildflower meadow at White Haven Memorial Park in Pittsford, New York, uniting with the soil, serenaded by the chirps of bluebirds. 

“It’s just a lovely spot,” Sample said. “We can just be reminded that there’s still life, even in the midst of sadness.” 

‘People don’t want to die in a hospital’

The loss of Nora forced Sample to conquer her fear of mortality. Sample has committed herself to bestowing grace to the dying, becoming what’s called an end-of-life doula, or death doula. Sample dislikes the latter term, arguing it’s too blunt for families or hospital systems. 

The word “doula” derives from Greek, meaning “women who serve.” 

The natural birth movement of the 1970s popularized the term, researchers note. End-of-life doulas borrowed language and models from this movement, providing “informed companionship.”

Communal traditions of dying can be traced to ancient times, and some end-of-life doulas seek to restore natural death practices.   

Sample founded In Due Time in Rochester, New York, to guide people through the dying process. An emotional, spiritual and physical practice, doulas fulfill the wishes of dying people and their families, ebbing and flowing to their morphing needs, instead of imposing their will. 

Sample can rearrange a dying person’s room to feel less confining, less sterile by moving a client’s bed near a window so they could gaze at a garden outside. 

Typically, end-of-life doulas offer a holistic battery of services: comfort care, care advocacy, vigil planning, healthcare system navigation, grief support, death education, creating legacy projects or planning home funerals. “People don’t want to die in a hospital,” said Kirsten Hagemeister, 56, an end-of-life doula from Bloomfield Hills, Michigan.  

Some end-of-life doulas found a purpose in caring for the dying after death touched their inner circles. They’ll spend weeks, months or up to a year caring for a dying person and their family, viewing their labor as a complement to hospice, a type of care focused on quality of life versus treating an illness or palliative care, a specialized form of medical care for people with serious diseases such as cancer or heart failure. Doulas also serve grieving families in the aftermath of a sudden and traumatic death. 

But doulas stress they are not medical professionals.

Rise of an ancient practice

The COVID-19 pandemic propelled end-of-life doulas into the national consciousness at a time when the threat of mass death dominated the news. As the virus raged, the profession bolstered its ranks, as enrollment in doula training programs rose. The National End-of-Life Doula Alliance, a nonprofit membership business organization, has roughly 1,800 members from the United States and 13 other countries in 2024. The alliance had 200 members in 2019 and provides resources and a directory of doulas. 

“The reason there’s so many doulas is because everybody recognizes that medical care alone isn’t enough. And we need more people,” said Merilynne Rush, founder of The Dying Year, an end-of-life doula training program based in Ann Arbor, Michigan. Training lessons include racism and bias in care settings, living with serious illness, establishing a doula business, natural death care, and more.

Many doulas are entrepreneurs, running private businesses and receiving client referrals through word-of-mouth advertising. Medicaid and Medicare don’t cover end-of-life doulas, which constrains the potential reach of their care. Clients usually pay out of pocket for services. Some doulas offer a sliding fee scale if clients struggle financially. Rates vary, with some doulas charging at least $35 an hour. 

Michigan and New York are among 15 states actively reimbursing birth doulas through Medicaid.

Bree Crutchfield, a 56-year-old end-of-life doula based in Ypsilanti, Michigan, hopes her field gains the same healthcare recognition for the end of life’s journey, which she believes is just as vital as its beginning. Reimbursement would aid in legitimizing the profession. “This is a service that’s needed. That is not a fad. We’re not going away,” she said.  

For families, the news of a loved one’s imminent death can bring confusion, a haze of emotions and trauma. “The expected mental status is devastation, denial,” Crutchfield said. 

An end-of-life doula tries to relieve the pain, physical and psychological, a dying person feels until their final breath and brings calm in a storm of stress. “With every family, everything is happening so fast for them. And it’s a huge emotional burden,” Hagemeister said. “The goal, too, is to alleviate their burnout.” 

At the thought of a home funeral, some family members couldn’t say goodbye. “I’ve had a lot of people tell me, ‘I don’t want to be there. I can’t. I can’t do it,’” Hagemeister said. But once they saw their loved ones pass away, they felt appreciation rather than dread. 

Hagemeister’s earliest brushes with grave illness happened during the peak of the AIDS epidemic when she saw people with the virus denied care at hospitals. “It was ugly. It was really ugly,” she said. Hagemeister began informally caring for sick and dying AIDS patients inside care homes erected by the LGBTQ+ community.

Hagemeister received her doula training from Lifespan Doulas in Ann Arbor, Michigan, in 2013 and another credential from the National End-of-Life Doula Alliance. Many end-of-life doulas gain formal training and certification, although it’s not required. The profession lacks government licensure and remains unregulated by state agencies. 

Her clientele comprises mainly older adults, and some were dementia, cancer and multiple sclerosis patients. She’s admired and cared for the elder generation since she was a restaurant and bar manager after college. She doesn’t sugarcoat death facts, nor does she cast judgment on the dying people she serves, hoping to foster trust and intimacy. “It’s really a special bond you create,” she said.  

Using intuition and sensitivity, end-of-life doulas will engage the subject of mortality with a dying person, which can spur a sweeping reflection of one’s past. Doulas call these “life reviews.” What will I be remembered for? Who do I love? 

Hagemeister has witnessed confessions. Some clients faced death alone, often riddled with regret. Regret for never having a family. Regret for alienating their adult children. She’ll sit by their side, moments imbued with a tenor of atonement. “People sometimes just want to talk or ask forgiveness,” Hagemeister said. “They need to get it off their chest before they die.” 

Buoyed by optimism, doulas see death as a natural end of a cycle, a milestone that can be free of macabre thoughts. 

“If you have any semblance of control of your demise, dying doesn’t have to be a sad, depressing thing,” Crutchfield said. 

“Even in the midst of death, there’s gratitude.”

Embracing death without stigma

Physical manifestations of the dying process aren’t pretty. A dying person can stop eating or drinking or forget to swallow. Then the major organs stop functioning—the lungs, the heart. 

Poised to allay any anxieties, end-of-life doulas help families brace for what’s to come and reassure this phase of decline is normal.  

The topic of one’s passing can be a delicate matter met with silence, a symptom of a “death-denying culture,” said Patty Brennan, owner of Lifespan Doulas. 

Roughly 1,000 people have taken Lifespan Doulas’ end-of-life doula training courses since 2016. Brennan believes many trainees seek death education rather than an alternative career path. “People are starting to witness and feel ill-prepared for their own passing,” she said. 

End-of-life doulas are torchbearers for the positive death movement, where mortality is not a taboo talking point. Movement advocates said honest, compassionate death talk is a pillar of healthy communities. “I really think doulas are trauma prevention,” Brennan said. 

Another sign of cultural change: the emergence of the death cafe, a casual gathering for people to discuss death without stigma. The website Deathcafe.com states more than 18,000 death cafe gatherings have popped up globally since 2011.

In 2012, Rush started the Ann Arbor Death Cafe, which convenes once a month. Some attendees are healthy people without a terminal diagnosis. “Real heart-to-heart conversations with life-and-death matters with people can be very life-affirming and invigorating and uplifting,” Rush said. “That helps you make the most of every day.” 

‘We’re not the grim reaper’

The messiness of death didn’t scare Bree Crutchfield. She cared for her grandmother who had Alzheimer’s complications, changing her diapers and combing her hair. Crutchfield cleaned her grandmother’s skin. “She wasn’t very verbal, but she still knew who I was,” she said. “I felt like I was paying homage.” 

The pandemic made Crutchfield rethink priorities. “Death became larger to me,” she said. “I was very frank about talking about death, like talking about the weather.” 

LGBTQ+ elders are more likely to live alone than straight older Americans. The pall of loneliness raises worries, and Crutchfield sees holes in care for some older LGBTQ+ folks reaching the end of life. “They’re still being discriminated against in the medical industry, just as there’s racism,” Crutchfield said, adding some hospice nurses won’t care for LGBTQ+ patients. Crutchfield came out as a lesbian in the ’90s.

Life as a doula taught Crutchfield to reclaim the nature of her demise, her mind vaulting toward the future. “When I die, the organ donor team is going to come out,” she said. She hopes loved ones will sign the paperwork and save their tears. “This is what I want to happen.”

After leaving a corporate job in 2020, Crutchfield pursued end-of-life doula work. Her clients have represented a range of racial and ethnic backgrounds. Through social media, she’ll also advertise her services and recently hosted a death cafe gathering. 

Crutchfield said people still hold misconceptions about what an end-of-life doula is. “We’re not the grim reaper,” she said. “We’re just a coach. We’re here to support. We’re on the sidelines, cheering for you every step of the way.” 

But sometimes enthusiasm may be ineffectual. One memorable client was a beautiful, tough, mean woman who lost her independence, her kidneys failing. “She rejected me,” Crutchfield said. One day, the woman gazed at Crutchfield, put her hand to her cheek, and told her she loved her. 

“I just lost it. And I said, ‘I love you too.’ And she kissed me on my forehead, and we just went to the bathroom,” said Crutchfield, trying not to cry over a Zoom call as she recounted the story. 

“I miss her.”  

Enshrining a legacy

Legacy projects for dying people can take many forms, but they all aim to remind them of special, defining moments in their lives. Sometimes, they’re creative expressions of a dying person’s sense of self. 

Hagemeister once compiled movie tickets and playbills of Broadway shows into a booklet for a dying person, which triggered her memories. She started telling stories her family never heard before. 

Crutchfield is still learning the craft of legacy work. She wants to sew teddy bears and pillows using old T-shirts or take pictures of dying people alongside their loved ones. 

Brennan helped a dying person, a baker and a cook, publish all their recipes. One man was a singer and had his performances recorded. One woman rode an ocean liner to the United States after World War II. Brennan helped the woman publish a memoir available on Amazon and a gift to her relatives. 

Diane Cicchini remembers the delicate, hand-painted flowers of the china placed across her mother Yvonne’s room. Cicchini said her mother, a French immigrant, had elegant taste. 

Cicchini is a 72-year-old retired administrator in the medical industry living in Berkley, Michigan. Hagemeister is her sister-in-law and cared for her father Paul, a custom tailor from Italy and her mother, a homemaker who was active in the Catholic church.  

In 2021, Cicchini’s family knew her father’s time was coming to an end. He had a few heart surgeries, but his body couldn’t take another. Cicchini didn’t want both her parents spending their final days in the hospital. “Those cold floors,” she said, her voice drifting over the phone.  

Hagemeister connected the family to hospice care and made sure classical and opera music was always playing inside the parents’ home, the pieces they loved. “She prepared their meals and just made everything really beautiful and comfortable for them,” Cicchini said. 

Facing death made Cicchini less afraid of her own. She thinks of dying “more as a transition than just flat-out, ‘OK, you’re alive and then you’re dead.’ That’s a comfort,” she said. 

But the grief still stung. 

“Maybe this is selfish, but I just never thought about a life without my parents,” she said. 

Cicchini’s thankful her father and mother had graceful exits from this life. Her father died in September 2021. Her mother died two months later, on their 76th wedding anniversary. 

“She passed in her bed, surrounded by her beautiful things,” Cicchini said. “And her family who adored her.”