Erin Collins is an end-of-life doula in Oregon — someone who, as part of a growing field, guides another person through their dying journey. I recently worked with a 91-year-old man who had Parkinson's disease and dementia and was concerned about how long it might take for him to die. Collins told him it would take about 10 days.
“He died 10 days after his nap,” she says. “He just needed someone he trusted who could ask that question without any judgment or warning. Finally he got the answer to the question that was causing him the most distress.
It's just one example of the comfort offered to the dying — and their loved ones — by end-of-life doulas, or death doulas, who play an increasingly important role in health care by providing a range of non-medical and comprehensive services. For people with a terminal illness.
“The essence of doula care is to provide non-judgmental support and guidance to individuals and families during times of critical and transformative life change,” according to the World Health Organization. National Alliance for End of Life Doulas (NEDA), a member-based non-profit organization that provides training and guides. Their role complements that of other services, such as hospice or palliative care, with physical, emotional, spiritual and practical support. This can include holding someone's hand, listening to the patient's memories, or simply being in a soothing place during the dying process.
On the practical side, a doula may assist the patient in drafting advance directives or family members with tasks such as care coordination, vigil planning, respite care, and bereavement support.
Although there are no firm statistics on how many end-of-life doulas exist, since the practice is unregulated and has no governing body, that number appears to be increasing post-pandemic, perhaps because more people have found themselves grappling with grief. And deaths. In 2019, NEDA had 250 members, and as of January 2024, that number has increased to 1,545 members. Likewise, the number of people who have been trained before International End of Life Association (INELDA), another member-based nonprofit, nearly doubled between 2018 and 2023, rising from 648 to 1,162.
Meanwhile, references to death doulas have officially entered the zeitgeist — part of the death positivity movement that took off more than a decade ago and has been identified as a health trend in 2019. Through the World Health Summit. In 2021, actress Riley Keough announced On social media She just completed her death doula training, and last month was death doula Alloa Arthur, founder Go with gracepublished a book, In short, completely human, Which received media attention in places from NPR to CBS.
“When people struggle with the choices they've made, my role is to be there with them,” Arthur told NPR. “Sometimes the greatest gift we can give is grace. … Part of the reason I called the work 'Going with Grace' is that grace has to be present at the end of life, so that people can let it go.
What does an end-of-life doula do for the dying?
The word “doula,” which comes from the Greek word “doula” meaning “caregiver of a woman” — and with the birth doula as its more well-known counterpart — is about the unique needs and requirements of each family served, according to Ashley Johnson, NEDA president and doula. Life in Florida. “It's my job to make sure you're emotionally and physically present in that moment. I can see you on your human side.
Doulas meet with patients, whether they are in a nursing facility or at home, to provide any non-medical support that may be desired, as often as desired. They help before, during, and after death, educate families about the dying process, help the person prepare for what is to come, advocate for the dying person's wishes, and collaborate with other members of their care team.
“We really provide support to the entire family, or what I often refer to as the circle of care. It can be biological family, chosen family, spouses, or caregivers,” says Collins, the program director at the institute. Peaceful Presence Project in Bend and also an experienced hospice and palliative care nurse, whose work in that field inspired her to become a death doula.
“From the holistic aspect of nursing, I saw that there was something bigger to do,” she explains. “I could make a broader community health impact by working to change the way people in my community talked about death and dying, planned for it, and ultimately experienced it with the support of Doula “I wanted to be alongside people as they navigated the entire disease process.”
While the concept may seem new, death doulas have actually been around in some form for thousands of years. There have always been dying and seriously ill people within communities. And while it became death increasingly medicalFor centuries, people have died in their homes, with their family and friends by their side, and often a village elder helping them with the final steps.
The doula's role at the end of life really comes down to that, says Collins, who works as an end-of-life doula End of Life Doula Council Vice President of the National Hospice and Palliative Care Organization (NHPCO). “It's that desire and openness and interest in supporting people.” Moreover, she says, this approach is driven by patience: “We always respect what the dying person wants, and support their values and beliefs.”
Support countries within the framework Doula model of care It also includes providing: 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 deeply personal experience with the death of a loved one. Johnson first connected with stories about death by reading obituaries every Sunday with her grandmother. Later, I helped a terminally ill friend and his family navigate the healthcare and funeral systems. Although 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 missions.
“As a doula, I helped with spiritual and ritual support. “That to me is cultural diversity — creating something spiritually meaningful, based on one’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 had some in-person or online training to gain basic knowledge and skills — such as NEDA, which provides competency assessment for its members.
Find a doula
To begin your search for a doula, consult the National End of Life Doula Alliance Guide, organized by name and state. You can also ask your hospice or palliative care team for suggestions. NHPCO has too Free Grief Support Project She can connect someone with a doula for short-term services for those experiencing grief or bereavement.
Be sure to interview the doula you contact to make sure they're a good fit (most will offer a free initial consultation). Ask questions that will help you evaluate the following:
- Do they align with your beliefs, values and preferences?
- Do they have the skill set and services you are looking for?
- What training have they gone through?
Set priorities, such as whether someone with a degree and multiple certifications is important to you or whether you prefer someone geographically close, from your religious community, or other criteria, regardless of certifications. Then make sure everyone on your team supports your decision.
Most health insurance companies, including Medicare, do not currently pay for doulas' end-of-life care. Fees for doula services vary, depending on the time and services involved, but many community doulas will work with patients on a sliding fee scale if necessary. It's all part of what many who do this work consider a calling and an honor.
“I am able to help families understand the connection between healing and peace when we talk about death and grief,” Johnson says. “And that's beautiful to me.”
