Erin Collins is an Oregon-based end-of-life doula—a person who, as part of a growing field, essentially guides another through their journey of dying. Recently, she worked with a 91-year-old man who was suffering from Parkinson’s and dementia who was anxious about how long it might take for him to die after he’d stopped eating and drinking. Collins told him it would be about 10 days.
“He died in 10 days, after taking his nap,” she says. “He just needed somebody that he … trusted who he could ask that question without any judgment or alarm. And he finally got the answer to the question that was clearly giving him the most distress.”
It’s just one example of the comfort brought to the dying—and their loved ones—by end-of-life doulas, or death doulas, who are increasingly playing an important role in health care by providing a range of non-medical, holistic services to people who are terminally ill.
“The essence of doula care is to provide non-judgmental support and guidance to individuals and families through times of critical, transformative life change,” according to the National End of Life Doula Alliance (NEDA), a member-based nonprofit that offers trainings and directories. Their role complements that of other services, such as hospice or palliative care, with physical, emotional, spiritual, and practical support. That can include holding someone’s hand or listening as a patient reminisces, or simply being a calming presence during the dying process.
On the practical side, a doula might help the patient draft advance directives or family members with tasks like care coordination, vigil planning, respite care, and bereavement support.
While there are no firm statistics on how many end-of-life doulas exist, as the practice is unregulated and has no governing body, it’s a number that appears to be growing post-pandemic, perhaps because so many people found themselves grappling with grief and mortality. In 2019, NEDA had 250 members, and as of January 2024, that number had risen to 1,545. Similarly, the number of people trained by the International End-of-Life Doula Association (INELDA), another member-based nonprofit, nearly doubled between 2018 and 2023, rising from 648 to 1,162.
Meanwhile, mentions of death doulas have officially entered the zeitgeist—part of a death positivity movement kicked off over a decade ago and identified as a wellness trend in 2019 by the Global Wellness Summit. In 2021, actress Riley Keough announced on social media that she had just completed her death doula training, and last month death doula Alua Arthur, founder of Going With Grace, released a book, Briefly Perfectly Human, which has been getting media attention on venues from NPR to CBS.
“When folks are grappling with the choices that they’ve made, my role is to be there with them,” Arthur told NPR. “Sometimes the greatest gift that we can offer is grace. … Part of the reason why I named the business ‘Going with Grace’ is because of the grace that needs to be present at the end of life, for people to be able to let go of it.”
What end-of-life doulas do for the dying
The word “doula,” which comes from the Greek for “woman caregiver”—and with the birth doula as its more well-known counterpart—is all about the unique needs and requirements of each family served, according to Ashley Johnson, NEDA president and an end-of-life doula in Florida. “It is my job to make sure that you are emotionally, physically present in that moment. I get to see you on your human side.”
Doulas meet with patients, whether they’re in a hospice facility or at home, to offer whatever non-medical support might be desired, as often as desired. They help before, during and after death, educate families about the dying process, help a person prepare for what’s to come, advocate for the dying person’s wishes, and collaborate with other members of their care team.
“We really do provide support to the whole family, or what I often refer to as the caring circle. It could be biological family, it could be chosen family, spouses, or caregivers,” says Collins, program director at the Peaceful Presence Project in Bend and also an experienced hospice and palliative care nurse, whose work in that realm inspired her to become a death doula.
“In the spirit of the holistic aspect of nursing, I saw there was something bigger to do. That I could make a broader community health impact by working to transform the way people in my community were talking about death and dying, planning for it, and ultimately experiencing it with the support of a doula,” she explains. “I wanted to be alongside people as they navigated the entire trajectory of an illness.”
While the concept may sound new, death doulas have actually been around in some form for millennia. There have always been people tending to the dying and seriously ill within communities. And while dying has become increasingly medicalized, for centuries, people died in their own homes, with family and friends by their side, and often with a village elder helping with the final steps.
The end of life doula role really goes back to that, says Collins, who serves as end of life doula council vice chair at the National Hospice and Palliative Care Organization (NHPCO). “It’s that desire and openness and interest in supporting people.” Further, she says, the approach is patient-led: “We always respect what that person who is dying wants, and support their values and beliefs.”
Doula support under the Doula Model of Care further includes offering: a calming presence, emotional support, unbiased and evidence-based information as desired, proactive guidance, resources and referrals, comfort measures, and logistical support, including household help and errands.
Training and education
Many doulas, like Collins, have professional backgrounds in nursing or social work. Others may feel called to this profession because of a profound personal experience with the death of a loved one. Johnson first bonded over stories about death by reading obituaries every Sunday with her grandmother. Later, she helped a terminally ill friend and their family navigate the health care and funeral systems. While she didn’t know it at the time, she was already doing end-of-life doula work. It wasn’t long before Johnson was supporting other families with similar tasks.
“As a doula I’ve assisted with spiritual and ritual support. And that, to me, is the cultural diversity—to create something meaningful, spiritual, based off of the individual’s beliefs and traditions surrounding death and dying,” she says.
There are no formal national or state training programs for end-of-life doulas, but most have taken some in-person or online training to gain fundamental knowledge and skills—such as through NEDA, which provides a proficiency assessment for its members.
Finding a doula
To start your doula search, consult the National End of Life Doula Alliance’s directory, organized by name and by state. You might also ask your hospice or palliative care team for suggestions. NHPCO also has a free grief support project that can connect someone with a doula for short-term services for those experiencing grief or bereavement.
Be sure to interview the doula you connect with to make sure that they’re a good fit (most will offer a free initial consultation). Ask questions that will help you assess the following:
- Are they in tune with your beliefs, values and your preferences?
- Do they have the skill set and service offering you’re looking for?
- What training have they gone through?
Determine priorities, such as whether someone with a clinical degree and many certifications is important to you or whether you prefer someone who’s geographically close, or from your faith community, or other criteria, regardless of certifications. Then make sure everyone on your team supports your decision.
Most health insurance, including Medicare, does not currently pay for end-of-life doula care. Fees for doula services vary, depending on the time and services involved, but many community-based doulas will work with patients on a sliding fee scale if needed. It’s all part of what so many doing this work see as a calling—and an honor.
“I’m able to help families understand the connection between healing and peace when we’re talking about dying and grief,” says Johnson. “And that’s beautiful for me.”
