Midwifery is one of the oldest professions – it’s been around since the Paleolithic era, and most would agree that birth is an intense process that requires assistance. But who’s there to help with dying? “That’s just as challenging a process as coming into this world,” says Sandra George, a former firefighter who now acts as a witness, advocate, and empathetic ear to dying people – in other words, an end-of-life doula. They stick by the dying person’s side long before the actual day comes. Doulas come to this work in myriad ways – for George, who was with the Austin Fire Department for seven years, it was facing a fear. “Being a firefighter, I really struggled with seeing so many people who were alone, sick, not being cared for. I always felt like I was leaving the job undone.”
After talking with some friends who worked in the hospice industry, George obtained a certification through INELDA, the International End-of-Life Doula Association, taking classes on active listening, as well as how to assist with more practical concerns like composing a living will, helping fill out a do-not-resuscitate order (DNR), and creating a legacy project (a photo album, video, or writing project). A growing number of organizations have begun to offer trainings in end-of-life care, including INELDA, the National End-of-Life Doula Alliance, the End-of-Life Doula (EOLD) Advisory Council at the National Hospice and Palliative Care Organization, and the University of Vermont’s Larner College of Medicine. However, the field remains unregulated. Some prefer it that way, fearing administrative requirements and seeing it as an alternative to a stressed and bureaucratic medical system.
Others feel that the growing popularity of online courses means fewer doulas have the experience necessary to do the job well – as one doula with 20 years of hospice experience put it, “A role that was once fostered within an organic community is now being sold to those who can afford the ‘training.’ Where is the time in the trenches, so to speak, for these newly minted death doulas?” Some funeral directors feel they’re incompetent or “money-grubbing.”
Deanna Cochran, the first chair of the EOLD and the founder of her own training organization, Quality of Life Care in San Marcos, has worked as an oncology nurse, and emphasizes that doula care can address quality of life in the dying process in a way that medical professionals can’t. As a nurse she saw “a lot of issues a doctor has to face, working fast-paced, squeezing people in two minutes at a time. … There’s a lot of reasons why, by the time someone gets to hospice, they’re pretty mangled physically – forget emotional and spiritual.”
Sometimes, even if the dying person has loved ones around, the key is that the doula is not related. “Caregivers are often exhausted,” says George. “Maybe they have moments where they’re like, ‘I hate my mother, when is this going to end?’ So an end-of-life doula can also sit with the family members and remind them everything they’re feeling is absolutely normal.” They can also help ease fears about leaving tasks unfinished: George has helped a woman write out lists of her dogs’ favorite toys and treats, and helped a husband create practical step-by-step instruction manuals for household tasks for his wife – “every time she gets to use that notebook of his how-to notebook, she feels connected to him, and he felt like he got to take care of her.”
Many doulas come to the work after a personal experience with mortality. Jason Tifford lost his father a few years ago to esophageal cancer and began volunteering at a hospice facility soon after. He’s just now finishing his INELDA training and says his approach comes down to “being curious and not labeling them. I’ve noticed there’s this stigma around people that are dying. So for me, it’s really about trying to be as present with somebody as possible, respecting their boundaries, and treating their information confidentially.”
Since the industry is unregulated, there are a wide range of approaches to payment. The question of charging at all for such an intimate service, at one of the hardest times in a person’s life, looms large. George operates on a sliding scale. Tifford, who volunteers only, says “if someone is dying, and the first thing someone does is say, ‘Pull out your checkbook,’ that doesn’t feel right to me. I think the way in which death doulas are brought into work could be improved upon, in terms of feeling less transactional.” George says she has struggled with the same discomfort, but says, “the fact of the matter is, how many people do you know in your everyday life who would be willing to sit by the bedside of a stranger while they die?”
“We’re someone who doesn’t come with baggage, who isn’t speaking in medicalese, who isn’t speaking in legalese … who has the capacity to just sit and listen,” says George. “It feels like a really big deal to be able to help put people’s minds at ease so they can be present at the moment of death, as opposed to terrified.”
This article appears in October 11 • 2024.