Birthing doulas are common when helping mothers bring children into the world. They ensure the expectant mother has everything she needs for a comfortable and empowering childbirth.
Death doulas do the same thing for people at the end of life.
Kacie Gikonyo was a nurse for 13 years, providing care in end-of-life situations. She was working as a Centers for Disease Control and Prevention certified infection prevention specialist when the COVID-19 pandemic hit, thrusting her to the frontlines at a long-term care facility in Philadelphia. She recalls the volume of terrible, sudden deaths in which pandemic protocols prevented patients from hearing goodbyes from their loved ones.
"Everyone was so focused on COVID and so afraid of COVID, and all I could think about was like, these people are humans that live these long, beautiful lives and they're dying in this terrible way, and I hated it," Gikonyo said. "And I became almost hyper-focused with trying to help them die better."
Gikonyo says that work taught her how to be comfortable when witnessing death. While others fear death or consider it to be creepy, she provides comfort.
"Since most people are afraid of death, you know, a lot of times when people are dying, sometimes people really want to be hands off and that's OK. But I want to be totally hands-on so that everybody can experience the most beautiful death ever," Gikonyo said.
Death doulas are traditionally non-medical roles, although, they are certified, they are not necessarily medical practitioners and can not accept health insurance. Some charge rates and others charge an upfront fee. But training is essential, Gikonyo said, noting various programs are available to become certified. She graduated nursing school from Kent State University and received her death doula training from the International End of Life Doula Association.
"There is a vast lack of education regarding everything end-of-life and death related," Gikonyo said. "It's my belief that end of life and death are two different things."
As a death doula, Gikonyo meets with clients and their families to build a trusting rapport. She also educates her clients on hospice options, noting that some people who receive terminal diagnoses simply opt for the first hospice care provider recommended by their doctor without exploring other options.
"A lot of times, there's just so much education needed around that before somebody is even hospice-ready or hospice-appropriate, so a lot of educating. I do a lot of educating," Gikonyo said.
Emotional support is a significant portion of the role for a death doula. Gikonyo said people are often afraid to discuss death with their loved ones, so they may keep their thoughts and fears to themselves.
"This is where I come in, right? Because we can talk about it. I'm not going to get emotional. It's not going to be like a big production, having this conversation. I'm just going to be able to kind of hold space and educate and help walk you through it," Gikonyo explained.
Overall, Gikonyo says her goal is to reduce all of the unknowns and anxieties that accompany the end of life. Sometimes, that means her role is to simply help someone clean up their home or walk their dog. Other times, it's accommodating religious or cultural backgrounds or creating an environment that comforts patients.
"I mean, if you're just laying in a bed staring up at the ceiling, do you love the beach? Have you always been one of those beach people who that's like, your go-to place? Perfect. I'm going to totally make a whole beach scene in your house and that's what we're going to do for the last days of your life," Gikonyo said, adding that she'll project ocean views on the ceiling accompanied by sounds of crashing waves and scents of saltwater mist.
"If it's a calm and beautiful experience like that for the person who's dying, it's going to be so much more calm and beautiful for all of the other people as well."
The number of death doulas has increased since the height of the pandemic. TIME reported that the National End-of-Life Doula Alliance grew to more than 1,000 members in 2021, from just 200 in 2019.
Gikonyo also hopes to expand the impact of her care. She says when she completed her training in September 2022, there were no death doulas locally. She created the Death Doula Collective, a nationwide group for death doulas, and is working to found her own death doula school in the Cleveland-Akron area to provide clinical hands-on training. She currently offers three courses to death doulas who have already completed their training.
"The most rewarding part is that I know that my clients died better because of me," Gikonyo said.
