En español | Cheri Rigby always knew she wanted to work with the dying.
As a registered nurse, she was exposed to death frequently, but she believed that more support was needed for those who were facing it. Through an unfortunate circumstance, she was given the opportunity to make a difference.
“There was a tragedy — one of my very best friends,” Rigby says. “Her daughter was a special-needs child. She choked on a Fruit Roll-Up and died.
"This was a little girl who was at my house all of the time; we spent a lot of time together. When Sophia died, I was sort of the closest person to that, because my friend didn’t have any immediate family," Rigby says. "It was a life-changing experience for me. I saw that raw emotion firsthand with my friend, and quite honestly, instead of it scaring me away, it drew me in.”
For Alua Arthur, it was meeting a stranger on a bus in Cuba, a young lady who was dying of cancer. Arthur says she engaged the woman in conversation about her inevitable death, and it sparked a fire that she says could not be contained.
“I thought, 'Wow. We’re all going to do this at some point. Why aren’t we all talking about it now? Who are the people to support people through this?' On that bus I got super clear this was going to be my work, yet I didn’t really know how.”
Arthur and Rigby eventually found their way to becoming what is called an end-of-life, or death, doula — a professional who provides nonmedical caregiving services to people who are dying and to their families.
'Death midwives' complement hospice
Many end-of-life doulas, also known as death midwives, say they complement the care from hospitals, senior-care facilities and hospices, as well as fill in the gaps that occur during the dying process.
“Although hospice is wonderful in the death and dying field, they don’t have the hours and hours and hours that the doulas have to really, deeply, get into this work,” says Janie Rakow, a practicing end-of-life doula for nine years and president of the International End of Life Doula Association (INELDA).
How doulas assist
End-of-life doulas can provide several services to your loved ones and their family:
• Calming the terminally ill through guided visualization
• Comfort for the dying through massage
• Coordination of care
• Helping with legacy projects to memorialize the life of the soon-to-be deceased
• Respite care for family members
• Vigil planning
• Vigil sitting
“There’s a lot of medical support in dying, and there’s some emotional support, as well, but I find that death doulas do a great job of tying it all together and having knowledge about a vast array of subjects,” says Arthur, who has been a death doula for five years.
End-of-life doulas bring their skills and expertise to various environments.
“For the most part, I would envision that doulas would be practicing at someone’s home,” says Francesca Arnoldy, lead instructor in the University of Vermont End of Life Doula Professional Certificate program. “(It's) caring for someone who would want to die at home, ideally with the support of hospice or palliative care, who then adds the doula in as an additional layer of support.
"But a doula can be hired to go into an assisted living facility or independent-living facility or even a respite house, hospice house," she says. "All of those are also options for doulas.”
Larner College of Medicine at the University of Vermont and partner Cabot Creamery Cooperative offer an eight-week online End-of-Life Doula Professional Certificate program.
“Our program is comprehensive. On average, people probably spend about 80 to 100 hours on this work,” Arnoldy says.
The first thing an end-of-life doula does is work with the client to determine the services needed.
"They figure out with the family where they are at, what do they need, what’s causing them to become overwhelmed, what kind of services are they looking for,” says registered nurse Merilynne Rush, a practicing doula for 10 years and co-owner of the Lifespan Doula Association. “Different doulas offer different kinds of services.”
Care for stressed-out families, too
But a doula can see the big picture when family members might be overcome with emotion, sleep deprivation and stress, Rigby says.
“It’s being present enough to know what the patient and the family need — things like hand massage, foot massage, encouraging self-care for the family,” she says. She recently completed the University of Vermont program. “It’s not just about you and the dying person. You have to be able to read the situation well enough to fine-tune things.”
Many end-of-life doulas find similarities between their role and that of the more commonly known role of a doula, aiding with childbirth.
“Waiting for a baby to be born and waiting for a person to die are very similar in terms of the skill set required,” says Patty Brennan, an end-of-life doula with a background in birth and postpartum midwifery, and co-owner of the Lifespan Doula Association. Both circumstances require the ability to be fearless, patient and calm.
No government certification program
End-of-life doulas have no credentialing body, but programs such as those offered by INELDA, the Lifespan Doula Association and the University of Vermont offer training and certification.
Rakow, the INELDA president, says a demand for this type of doula service led to the creation of her organization, which, along with training and certifying individuals, educates organizations such as hospitals, hospices and senior-care facilities to start their own programs.
“People were hungry for it," she says. "We kept hearing from people, ‘How can I learn about this? Why doesn’t this exist anywhere else?’ “
Some doulas have private practices, and others work in connection with hospices, hospitals and community organizations.
“We try to forewarn people that if you’re planning to become a private-practice doula, it’s really going to take initiative,” Arnoldy says. “You’re going to have to develop your business and your role in the community and your reputation. You’re not going to look in the newspaper and find a job ad.”
'People don't know it exists'
In addition to services provided, many are spreading the word and trying to teach the public more about death and the role of a doula.
“Word of mouth has really been useful, but also creating opportunities for people to learn about the work,” Arthur says. “I think part of the reason why we’re not inundated with requests is that people don’t know that it exists. A big part of my work is in public education — letting people know that these services exist and that there are people to support them in their time of need.”
And practitioners say the work is its own reward.
“It's not depressing,” Rigby says. “It’s very powerfully motivating. It’s like a wake-up call that feeds your will to live fully. This is a common thread that folks who work with the dying understand.”
This article, originally written in 2018, was updated with services provided.