End-of-life doulas growing in popularity

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AURORA, Colo. (AP) — Ashley Scott describes the emotional side of her job as a death doula like a fountain in the middle of a lake.

Her job is to help shepherd a dying person through an experience that is so intimate, common and yet mostly taboo in American culture. Scott wants people to feel comfortable, safe and cared for in their last moments.

“You’re pouring out this energy and love and compassion and space for them to consume it all,” she said. “I really didn’t realize the amount of energy it took until my last client.”

The client, a woman who had outlived her husband and daughter, was standing up and alert when Scott first arrived at her home.

“I know who you are,” Scott remembers her saying. “I’ve been waiting for you.”

It gave Scott, who has worked in hospice care for over a decade, chills. She’d taken care of many dementia and Altzheimer’s patients and somehow, even as agitation and bursts of energy can be common close to death, this was different. The statement seemed “very cognitive,” she said.

The woman’s room was disheveled, stuffy and a daytime court television show was blaring, so Scott said she put her in bed, turned on some instrumental music, rearranged the furniture a bit, opened a window and dimmed the lights. She rubbed the woman’s arms and her face to make her comfortable.

“In that five hours we were able to hold that space for her and help her go into an active dying transition,” she said.

The woman had been in hospice care for more than a year before that day.

Scott officially started her journey as a death doula a year ago, but caring for people at the end of their life has been her passion since starting as a CNA at a nursing home.

“It was just so beautiful, like to help and be there and basically just prepare and honor the shell that this person had,” she said of the first death she experienced as a hospice nurse. “After that it was kind of just like if anybody was on the brink, I had this inkling of magnetism to them. I want to make sure they’re cared for and comfortable and loved and appreciated in their last days because it’s their most vulnerable point in life.”

Throughout her career at nursing homes Scott said she knew there was something missing in caring for the dying. There wasn’t anybody to “hold the space” — a phrase that many people involved in end-of-life care use frequently in reference to death doulas’ work.

It wasn’t until a friend had sent her a link to a Zoom seminar about death doulas last May that it all came together for Scott, who is 32 and lives in Aurora with her fiance. She’s part of a growing number of workers dedicated to making death a more comfortable experience.

Doulas, by loose definition, tend to all the duties of dying that medical personnel do not. In a lot of ways they’re equivalent to a wedding planner, but for your final living moments.

They can help arrange funeral services, help complete legacy projects, make sure the aesthetic of a death place is exactly what a client wants and help family members cope after the passing of their loved one.

“We treat dying like a fast food experience,” Scott said. “And it should be treated like a five-course meal.”

For people who work in hospice care, the arrival and growing popularity of the death doula is welcomed, and it’s changing the approach and culture around an experience everybody will have.

— Evolving Care

Katelyn Van Vulkenburg, the volunteer coordinator at Denver-based Namaste Hospice, jokes that she’s a little protective of Scott, who first started volunteering her doula services in November.

Van Vulkenburg said she doesn’t want Scott to become overworked or burnt out because it’s become obvious how necessary doulas are to hospice care. Prior to Scott, the organization consisted of nurses, social workers and volunteers, but after working with Scott they’ve welcomed five more volunteer doulas.

“Some of us in hospice have grown accustomed to the routine death,” Van Valkenburg said. “They force us back into thinking about making this unique.”

Scott arrived at Namaste after two waves of the COVID-19 pandemic, but it felt “kind of like a new beginning,” Van Vulkenburg said. For months hospice nurses had been scrambling to care for patients, some inside nursing or retirement homes. Early on in the pandemic, sometimes Namaste’s workers weren’t even allowed inside facilities and had to find ways to comfort their dying patients from bedroom windows or over the telephone or a computer.

“It shook us to our core,” she said.

Nurses and social workers had to become creative, Van Valkenburg said. They arranged the donation of more than 150 radios for their patients and they put aromatherapy diffusers in patient rooms when they could to make the atmosphere as comfortable as possible.

This winter, adding doulas to their care model helped hold the caretakers to “being fully present,” she said.

Even though neither private insurance nor Medicaid covers the cost of doulas, like it does for end-of-life medical care through a hospice organization, Namaste wants to eventually be able to pay their doulas. For now, they volunteer their services, mostly to meet requirements through certification programs.

Scott started her own private doula practice, called Benevolent Care, where planning services can range from $70 for one hour of Death Day planning to an extensive package where Scott is available around the clock. She said she usually works those costs out on an individual basis.

“Everybody is so different, and I don’t want to deny them,” she said.

While doulas don’t administer medical care, Nancy English, an assistant professor who teaches palliative care at the University of Colorado Anschutz Medical Campus, says there’s definitely a role for them in hospice settings.

“We need to look at death as important as birth, it’s a transition from one state to another. We know it’s a major transition, even if we don’t know what’s next,” she said. “The death doula helps us make it more sacred.”

English said she recently took a course for death doulas, and while she doesn’t plan on practicing as one, she wanted to see how it could help her prepare students for providing more holistic care.

“A doula can take the time to actually address some of the things that have been fragmented in care,” English said. “I think nurses are so creative and so caring as a group, and they want to do it, but you have one patient that’s dying in this bed and the next patient is coding. It’s just a difficult role.”

English, who was a hospice nurse herself for many years before becoming a professor, said the workload just doesn’t lend itself to the kind of one-on-one attention and comfort a doula can provide.

Scott said she believes her background as a hospice nurse has helped her in becoming a doula because she understands the medical jargon and also the struggle in not being able to comfort each patient as much as they might need.

It’s also good for the families of people in hospice care.

“Imagine having someone on your side, someone who is really right there with you walking alongside you in this process,” she said. “Someone that you could call who was there with you that saw certain things that maybe you missed, and you can call them and just be validated.”

“You’re drawn to it because either you have a curiosity or an experience,” she said.

— The Movement

The moment Scott learned that death doulas existed, she said she knew it was for her. That tends to be the case with most people who work in end of life care, said Cindy Kaufman, president of the Colorado End of Life Collaborative.

“You’re drawn to it because either you have a curiosity or an experience,” she said.

Kaufman and a small group of other doulas organized the collaborative because they saw a need for a common place for people working in the field. Somewhere they could connect services if they needed or just have a support system. The community has been steadily growing over the years, but Kaufman said she really saw an uptick about three years ago.

That’s in part due to a growing “death positive” movement, she said, which is largely credited to Los Angeles-based writer, activist and mortician Caitlin Doughty. In 2011, Doughty started a collective called The Order of the Good Death, which became a foundation for much of the crusade to see death in a brighter light.

Since then, death doulas have grown in popularity, according to Kaufman. There isn’t a sure way to tell just how many doulas there are in Colorado because they tend to work in their own private practices or through volunteering like at Namaste.

The movement has also birthed “death cafes” — groups where people can gather to talk about all aspects of dying — all over the country. English started a Denver-based death cafe in 2014, which typically met Sundays at the Tattered Cover bookstore before the pandemic. For the last year, she’s been hosting a small group on Zoom.

“They’ve been wonderful,” the professor said, echoing Kauffman that Westerners are beginning to view death in a different way.

Kaufman, English and Scott each say they see the shift, and maybe the pandemic — a collective experience of sudden death — may push forward even further.

“A life lost is a life lost and we need to honor that, and during COVID we didn’t get to,” Scott said. “We didn’t get to honor the dying process. It literally just happened, and I guess that’s what really drew me into being a doula. We get to honor the process.”

First published on: AP

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