SISTERS, Ore. — We’re all going to die. While we don’t know when or how, the sun will set on each of our lives.
American culture struggles with this, in turn making the inevitable insufferable. This is where end-of-life doulas are breaking new ground.
Cheryl Adcox has been working as an end-of-life doula in Central Oregon since 2018. That’s when the registered nurse opened Hand-in-Hand End of Life Doula Services. For her, death is “sacred and it’s magical and it’s part of the mystery of life.”
It’s a view that few people understand. It’s one these death doulas understand intimately.
“Part of this is about normalizing conversations around death, dying, loss, grief,” Elizabeth Johnson, the Executive Director of the non-profit Peaceful Presence, said.
Johnson opened Peaceful Presence, which offers end-of-life doula care, in 2019. It was founded just before COVID-19 shut down the world, but thrived as the world began to see death more regularly through the pandemic.
What are end-0f-life doulas?
End-of-life doulas are caregivers who help people find peace with the circle of life. Most often, they work with people who are dying, along with their families. But they also help healthy people come to terms with life’s inevitable end.
Erin Walker is one of those people who was deeply impacted by death during the pandemic. Before this, she hadn’t had any real life-changing relationship with death.
“I hadn’t had anybody close to me die,” Walker explained.
When her husband, Hans, became gravely ill in 2021, shortly after the two welcomed their first daughter, Harper, she had to handle death head-on.
“He didn’t care about what people thought, in the best way,” Walker said, describing her husband.
Hans was diagnosed with stage-four liver cancer in the middle of a pandemic. An already challenging time was made nearly unbearable.
The two decided an end-of-life doula could help them navigate this foreign path. The decided to work with Peaceful Presence.
“An end-of-life doula is a non-medical companion to someone,” Johnson explained. “We do a lot of legacy work, life review work.”
Doulas treat the family, not just the patient
For Johnson, the goal of a doula is to help families like Walker’s deal with death and all the logistics that come with dying. They treat the whole family unit, not just the patient, in a way that compliments medical care received in the hospital and hospice.
Walker said Hans was afraid of being alone as he got closer to death. Walker had to balance both being a wife and mom. Sometimes she couldn’t do it all, having to leave her husband in the hospital or hospice to take care of their daughter.
With Peaceful Presence, Hans didn’t have to be alone during these moments. As Walker explained, the doulas were “there to just be there, to just be that person in the room for when and if Hans woke up, to be present with him.”
Walker also got essential support.
“They’re there to hold your hand. They’re there to hug you when you’re crying. They’re there to get you tea,” Walker explained. “It was having people to call — not the friend, not the sister, not the people with baggage or their own relationships with Hans.”
In September of last year, Hans died. Memories of him sit on shelves and side tables throughout their Sisters home. His urn is below a pair of paintings the couple did together. His death still isn’t easy to talk about, but through the experience, she found a greater understanding of life.
“It can be a traumatic experience to have someone die, or it can be something that you can talk about and that you can share with others and that you can connect with them on,” Walker said.
That connection is catching on in Central Oregon.
“We actually have a lot of hospice and palliative care professionals who come and say, ‘I was in medical school. I learned a lot, but I didn’t learn, you know, some of these ways of just being with somebody during this end-of-life window,'” Johnson explained.
Johnson said when she joined the National End-of-Life Doula Alliance board pre-pandemic, they had about 250 members. She says that’s grown to more than 1,500. The International End-of-Life Doula Association says it had a 36% increase in learners between 2021 and 2022.
Adcox has found, since starting Hand-in-Hand back in 2018, that people are more willing to have these death conversations.
“People are much more receptive to it now than when I first started,” Adcox explained.
Death Cafés come to Central Oregon
In 2018, in addition to starting the doula service, she began hosting Death Cafés. The practice, which originated in Europe, offers free, public meet-ups just to dish about death.
“We have people in their late seventies, early eighties. We have people in their early twenties,” Adcox said of the cafes. “It’s so beautiful that we can all sit in a circle and share this one commonality that we all have as human beings.”
The meet-ups happen about once a month, except during the summer when they are paused. They’re also now sponsored by Deschutes Public Library. Plus, with their popularity, Adcox has expanded the cafes beyond Bend to Redmond. The next Death Café is on January 30. Adcox says this work is a part of a growing “death-positive movement.”
It’s a mission Peaceful Presence is also on. One way they help people of all ages and health do this is through their guidebook End Notes.
“What are all the life logistical things I might wanna have in place if I were to die tomorrow? What do people need to know about my life, right?” Johnson said, explaining End Notes. “Are there letters that you want to write? Are there things you want to communicate? Are there places where you need to ask forgiveness?”
Johnson also notes that the work is expanding across Oregon. Thanks to funding from three different foundations, Peaceful Presence is going to rural Oregon communities, not necessarily to establish more end-of-life doulas there but to embed the doula training into existing professions, helping people better handle death.
By May, Johnson says they’ll have trained 60 people in rural Oregon communities.
The death doulas, cafes and guidebooks — all changing the conversation around death in Central Oregon. Helping people, like Walker, change their perspective on dying.
“Do you feel like having worked with a doula that your perspective on death has changed?” I asked Walker.
“Yeah. I have a lot less fear, which I didn’t even know I was holding before,” Walker responded.