End-of-life doulas support people emotionally, physically, spiritually and practically: sitting vigil, giving hand massages, making snacks.
By Abby Ellin
As parents of a child with a progressive and potentially fatal illness, Maryanne and Nick O’Hara lived on hope. Hope that their daughter, Caitlin, who was diagnosed with cystic fibrosis at age 2, would prove the statistics wrong and live longer than the 46 years expected. Hope that she would receive the lung transplant she spent two and a half years waiting for in her early 30s. Hope that her body wouldn’t reject it.
That hope faded on Dec. 20, 2016, when Caitlin O’Hara died of a brain bleed at the University of Pittsburgh Medical Center, two days post-transplant. She was 33.
Shattered, her mother decided to try to give meaning to her grief. And so she signed up for a certificate program at the University of Vermont’s Larner College of Medicine to become an end-of-life doula, or “death doula,” working with individuals and families as they moved from this life into whatever is next. (The terms “end-of-life doula” and “death doula” are used interchangeably, though some find the latter a little too blunt.)
“In our culture, we go overboard preparing for birth, but ‘hope for the best’ at the end of life,” said Ms. O’Hara, 62, who lives in Boston and Ashland, Mass., and is the author of “Little Matches: A Memoir of Grief and Light,” published in April. “The training was really a way of going even deeper into my own grief and realizing how I could take my own experience and help other people have a better end of life.
“I saw for myself how horrifying it is during a medical crisis and then after a death, to realize that life keeps going and needs attending to,” she continued. “As soon as Caitlin passed, suddenly it’s over and the person is gone and you have to deal with the business of living. A good doula will support you with that.”
The word “doula” comes from the Greek word meaning “woman who serves,” though most people associate it with someone who helps during birth to usher in life. In recent years, however, more people have come to recognize the need for as much assistance at the end of life as the start, part of the so-called death positivity movement that is gaining momentum in the United States and other countries. The movement, popularized by the mortician and writer Caitlin Doughty, encourages open discussion on death and dying and people’s feelings on mortality.
“The beginning of life and the end are so similar,” said Francesca Arnoldy, the lead instructor at UVM’s End-of-Life Doula program. “The intensity of it, the mystery, all of the unknowns. You have to relinquish your sense of control and agenda and ride it out, and be super attentive in the moment.”
Unlike hospice workers, doulas don’t get involved in medical issues. Rather, they support clients emotionally, physically, spiritually and practically, stepping in whenever needed. That could be a few days before someone dies, sitting vigil with them in their last hours, giving hand massages, making snacks. Or it could be months or even years earlier, after someone receives a terminal diagnosis, keeping them company, listening to their life stories or helping them craft autobiographies, planning funerals. Prices range from $25 an hour on up, although many, like Ms. O’Hara, do it voluntarily. And like Ms. O’Hara, many have signed on to help give new meaning to their own grief while helping others in the process.
More than 1,400 people have graduated from the UVM program since its inception in 2017. Coursework, which costs $800 for eight weeks, includes writing farewell letters to loved ones, crafting their own obituaries, completing legacy work or a “Life Story Project” with a trained volunteer, and starting or updating their own advance care planning files. The program also recently started a “StoryListening” research project in which mourners across the country are invited to share their stories of loss during the pandemic with a trained doula. At the end of the hourlong session, participants are given a recording of their own conversation.
Since its founding in 2018, the National End-of-Life Doula Alliance, a professional organization of end-of-life practitioners and trainers, has grown to nearly 800 members; membership nearly doubled in the last year, said its president, Angela Shook. Interest has increased in training programs with the International End-of-Life Doula Association, Doulagivers, and the Doula Program to Accompany and Comfort, a nonprofit run by a hospice social worker, Amy L. Levine.
Much of the growing interest in these programs has come from artists, actors, young people and restaurant workers who found themselves unemployed during the pandemic and recognized that they could still be of service.
“People were reaching out from a variety of different ages, younger than we would normally see, because they realized that people were dying in their age category, which doesn’t usually happen,” said Diane Button, 62, of San Francisco, a doula facilitator at UVM and a member of the Bay Area End-of-Life Doula Alliance, a collective of death workers. “It made them more aware of their own mortality and really made them want to plan and get their documents and advance directives in order.”
Rebecca Ryskalczyk, 32, a singer in Vergennes, Vt., had always felt “kind of comfortable” with death. She lost two cousins in a plane crash when she was 12 and a friend to suicide four years later. When Covid put her performing schedule on pause, she enrolled at UVM. Her goal is to let people know that they don’t have to be afraid of death; nor do they have to do it alone. “Being able to help advocate for someone and to spend the last moments of their life with them and help them stick to their plan when they may not be able to express that is an honor,” she said.
Before the pandemic, Kate Primeau, 35, also worked in the music industry. Last June, after her grandfather died of Covid-19, she began researching how to host a Zoom memorial and came across the concept of a death doula. “I felt a huge gap between the amount of grief everyone was feeling and the resources available,” she said. She got certified as an end-of-life doula through Alua Arthur’s company, Going with Grace, and also volunteers in a hospice program. “I can’t believe how much I’m geeking out over all this death education.”
During the pandemic, of course, doulas had to shift the way they worked. That was one of the main challenges: They couldn’t interact in person. So like the rest of the world, they resorted to Zoom calls and FaceTime. Families often reached out for their own healing.
“A lot are coming to me for ritual and ceremony when they can’t be with their loved one physically and they’re alone in the hospital room,” said Ash Canty, 34, of Eugene, Ore., who refers to himself as a “death walker.” “There’s a curiosity that wasn’t there prior to Covid. They’re wanting to know, ‘How do I make sense of this spiritually? How do I be with this? Because I’m really struggling.’”
As for Ms. O’Hara, who is also a novelist, she is primarily helping people write their life stories. Her training at UVM was “humbling.” “I went into it thinking ‘I’ve been a volunteer with people who are dying, I’ve lost my daughter, I’m an expert in grief,’” she said. But the longer she studied, the more she realized that she was only an expert in her grief.
“You really can’t tell anyone else how to grieve,” she said. “You can offer advice, but there’s no timeline for grief. As soon as people get a diagnosis, they’re grieving. Their way of life is over. Everyone has suffered some kind of grief with the pandemic, even if they haven’t lost a person.”
She believes that grief and joy can coexist. “My grief is never going to go away,” she said. “I wouldn’t want it to. Grief and joy and love — it’s all part of the same spectrum. I’m grieving because I loved someone so much.”
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