Doulas are tasked with maintaining a sense of calm for the dying, and those around them and open the conversation about death and loss
In October of 2016, Gregory Gelhorn ran the Twin Cities Marathon. Seven months later, he was diagnosed with ALS, a progressive neurodegenerative disease that causes nerve cells to break down, resulting in muscle weakness and atrophy. The average life expectancy of an ALS patient, once diagnosed, ranges from about two to five years. The cause of ALS is not fully understood, and no cure is known. Gelhorn was in his mid-40s.
It was a shock, said Kathy Fessler, Gelhorns sister. He was always the one who took the best care of himself.
Dying from ALS is a singularly awful experience; the disease causes the body to progressively deteriorate while the mind remains clear and lucid. Gelhorn had loved being active. He had played three sports in high school, coached girls basketball and served as a travel director at Lakeville North high school in Lakeville, Minnesota. The disease progressed rapidly; soon, he was using a wheelchair and relied on a BiPAP machine to breathe. Doctors estimated he only had a few months left. Gelhorn and his family his two teenage children, wife, parents, and siblings began to grieve.
In the midst of it all, Fessler happened to see an article in the Star Tribune about Christy Marek, a certified end-of-life doula who lived only a few miles away. Fessler contacted Marek, who soon took on Gelhorn as a patient.
A doula, typically, is a professional who helps mothers during pregnancy and childbirth. Unlike midwives, doulas do not serve in a medical capacity; rather, their primary role is to provide emotional, physical and psychological support.
The practice originated in the natural childbirth movement in the US in the 1970s, alongside the Lamaze method and the popularity of alternatives to hospital birth, like water birth and home birth. That same generation of Americans who were having children in the 70s are now approaching their twilight years, and the practice of serving as a doula has expanded in scope. End-of-life doulas use the same concept as birth doulas: they provide support for the dying.
On all sorts of levels, I think the Baby Boomers, that generation has just been here to shake things up, said Marek. The natural birthing movement, they did that. And now its the same thing. Theyre saying, no, I dont want the death my parents had. We are rich in possibility, why cant I make this whatever I want it to be?
End-of-life doulas are sometimes called death doulas, though many have reservations about the term.
To me, end-of-life is a process, said Marek. The work I do with people isnt just about that one point in time when somebody dies.
Although doulas are not required to have medical training, many come from the healthcare field. Shelby Kirillin, an end-of-life doula based in Richmond, Virginia, has also been a neurointensive trauma nurse for over 20 years. It was her experiences in the neuro-ICU that led her towards becoming a doula. Many of the deaths she had seen there, she explained, struck her as cold, sterile and lonely.
I just couldnt imagine that the person dying had ever envisioned their death to be like that, she said. Dying isnt just medical. Its spiritual.
Fascinated by the idea of a structured approach to end-of-life care that prioritized the individual wishes of the dying, Kirillin enrolled in a doula training course with the International End of Life Doula Association (Inelda), a not-for-profit that promotes the approach. Although there is no centralized regulatory body for doulas, training and certification programs are offered by a number of organizations, including Inelda and the Larner College of Medicine at the University of Vermont.
Theres so much fear and anxiety about death, said Janie Rakow, the president of Inelda. The doulas are there to calm everyone down. They work with the dying and their families to educate, to explain whats happening. That what theyre seeing is part of the dying process.
Rakow and her business partner, hospice social worker Henry Fersko-Weiss, founded Inelda in 2015 to train doulas and promote their use in hospices, hospitals, prisons and homeless shelters. Their training program covers topics like vigil planning, active listening and doula self-care.
Part of what doulas do is open the conversation about death and loss, topics that can often be taboo or deeply uncomfortable for the dying or their family.
Can you imagine if a woman was going through labor and no one around her was talking about it or preparing for it? Thered be an uproar if we treated birth like we treat death, said Kirillin. You have to talk about it. Youre dying and youre no longer going to be here.
Doulas help their patients plan out their deaths: talking with them about their wishes, and how they would like to spend their last day. Some prefer to die in a hospital, others at home. They decide who they want around them, whether its with all their family and friends, or a religious figure, or alone. They choose the details of the setting, whether they want to hear music, whether they want to have someone hold their hand, and what rituals religious or secular they want performed.