As a local death doula, Rachel Wiley-Fenton provides non-medical support for people near the end of their lives, as well as for their loved ones. She helps with end-of-life planning, funeral planning and ‘legacy creation’ – putting together items that can be passed on after a person is gone, including stories, recordings, and photographs.
She also describes herself as a “grief guide.”
“I want to give people tools to help them form a relationship with their grief,” she said, “And I want people to have permission to grieve whoever and whatever they need to, and however they need to.”
On the second Wednesday of each month through December, from 6:30 to 8 p.m., she runs a community grief group at FireFolk Arts in Waitsfield. She will also host a grief writing workshop on October 26 at 9:30 a.m.
Wiley-Fenton came to this work following the death of her father in late 2020. He was diagnosed with ALS, a quickly progressing disease that affects the nervous system. Since there’s currently no cure, Wiley-Fenton’s grief preceded his physical death – what’s known as “anticipatory grief” – even before his diagnosis, when he lost his ability to speak.
In his final months, Wiley-Fenton cared for him in his Oregon home. While others around her had a difficult time accepting his end, she saw the need to be as present as possible with him, nurturing their relationship -- especially as they were previously distant from each other for about a decade.
Her former training as a birth doula served her well. She understood the need to track what was going on in every moment, rather than detaching or dissociating. Lacking the ability to speak, “his way of communicating required a lot of patience and attunement to him,” she said.
Her father died in an armchair in September of that year.
In 2021, Wiley-Fenton enrolled in an intensive 11-week death doula training program with Anne-Marie Keppel in Craftsbury, Vermont. Students engaged in daily mediation, developing awareness around “the things we inherited and carried within ourselves” -- including intergenerational trauma and other complexities. “There are all these forces that show up in how we are in the world,” she said, “and we can’t support others if we’re not tuned into ourselves and our capacities.”
The training also taught Wiley-Fenton how to better connect with people, how to forgive more easily and how the solitude of grieving, while necessary, is best when supported through community. She said her peers in the training were open about things that mattered deeply to them, “and people don’t often talk from that place.”
ROOTS IN HOSPICE MOVEMENT
Although death doula work has roots in the U.S. hospice movement, which began in the late 1960s, it was popularized further when a host of certification programs began cropping up around 2000.
The first was a pilot program in clinical care at the New York University Medical Center in which terminally ill patients were paired with doulas, with the goal of addressing the social, psychological, and spiritual needs of people who felt isolated during the dying process.
A multitude of trainings have emerged since then. The University of Vermont began offering its eight-week End-of-Life Doula Professional Certificate program in 2017. It covers knowledge around terminal illness, professional boundaries, and religious beliefs, as well as teaching skills in creating advance care plans, crafting obituaries, and writing farewell letters.
Wiley-Fenton said she was drawn to working as a death doula because while medical care is often necessary at the end of life, “there are other ways we can show up for people that just aren’t available in an institutional way.”
She said that one the most valuable lessons she learned during her father’s dying process was that “grief is an integral part of life, and is only here because there’s also love.”
“No matter how hard a situation is, there’s always a place where one can find that love,” she added. “And to actively seek that out is radical.”
Wiley-Fenton will be hosting a Death and Dying Open House at FireFolk Arts in Waitsfield on September 27 from 3 to 7 p.m. She will be giving short talks throughout: Planning for Death at 3:45 p.m., Green Burial at 4:45 p.m. along with Robin McDermott and Grief as a Landscape at 5:45 p.m.
The event will mark the fourth-year anniversary since her father’s death.
More information can be found on her website at wherethelovelies.com.
