Recently, actor Riley Keough shared she had completed training to become a death doula.
"I just felt like writing such a deep thank you to this community who are teaching and training people in conscious dying and death work," she wrote on Instagram. "We are taught that its a morbid subject to talk about. Or were so afraid of it that we’re unable to talk about it... then of course it happens to us, and we are very ill prepared."
That caused many people to wonder: What are death doulas? Death doulas — or more accurately end-of-life doulas — help people navigate death. These professionals offer a variety of services that includes helping a person write their own obituary, completing legal paperwork and creating a peaceful, loving atmosphere at death.
“We get involved with someone who is dying, and their loved ones, soon after a diagnosis of a terminal illness as they recognized that they could use some support and guidance,” Henry Fersko-Weiss, a social worker and co-founder of International End of Life Doula Association (INELDA), told TODAY. “We help this individual really face what dying means to them.”
End-of-life doulas can offer a variety of services at a range of costs. INELDA has a directory of doulas across the country who practice adhering to the organization's code of ethics. But even a quick search online can help people connect to an end-of-life doula near them. Francesca Arnoldy directs the University of Vermont Larner College of Medicine’s End-of-Life Doula certificate program. She said most end-of-life doulas offer a free consultation so people can find the right match.
“That's a really good opportunity to see will this be a good fit,” she told TODAY. “(People can ask) 'Are you offering what I'm looking for?'”
The experts share what services end-of-life doulas might offer, the price range for such services and other information people might want to consider as they or their loved one face death.
Training to become a death doula
There’s no formal body that certifies end-of-life doulas. People can ask whether end-of-life doulas have taken INELDA’s training or participated in a program like the one at the University of Vermont medical center. Arnoldy worked as a birth doula and she said many end-of-life doulas also have experience in that field. Hiring someone to assist with death is just like hiring for any other position: People should ask the doulas about their professional experiences and for recommendations.
“It’s really asking for references and looking for recommendations in the community,” she said.
What does an end-of-life doula do?
End-of-life doulas can offer a variety of services to people who are dying and to their loved ones.
“End-of-life doulas talk about how we can best prepare you for this time. What would you like to know? What would you like to explore? What would you like to talk about?” Arnoldy said. “We think about advance care planning so those could be legal documents.”
End-of-life doulas can help with:
- Advanced medical directives
- Aiding in putting affairs in order
- Writing an obituary
- Creating a legacy project
- Determining who should be there during active death
- Making the space calm and comfortable during death, which can include readings, prayers, music or other rituals important to the person
Prior to death, Fersko-Weiss said he often works with people to understand what’s most important to them.
“One of the things we concentrate on is working with the meaning of a person's life and helping them explore it for what we call meaning-directed life review,” he said. “What kind of legacy is this person going to leave behind, which is focused on aspects of meaning as they see it in their life. How do they leave that in some way that their loved ones can continue to engage with that meaning?”
Depending on the person’s wishes, the end-of-life doula might be there until the very end.
“I might also be on-call for vigil time, so when someone transitions into active dying, which is generally the point where they can no longer communicate verbally,” Arnoldy said. “In advance, we've talked about how can we make you feel most comfortable and safe … We put that into place along with the loved ones and the support team that's involved.”
What does an end-of-life doula cost?
The cost for end-of-life doula services depends on where the person lives and how much the doula will be doing. Helping a person write an obituary would cost less than having a doula help with legacy work and active dying, for example. Arnoldy said that many times the price is comparable to what birth doulas charge and people can get a good sense of cost by comparing those services. Some doulas might have an hourly rate or a la carte price along with package prices for more extensive services.
“There might be an opportunity to book a doula by the hour,” she said. “Or a week-to-week charge depending on how the person is doing and if they need more frequent visits or longer visits and others charge for a package deal.”
The more involved an end-of-life doula is, the more expensive it might be. If a person only has one support person, a doula might be more involved than if there are 20 loved ones who can help with various aspects.
“I would say the range is probably somewhere between $800 to work with somebody up to several thousand dollars and an unusual case — where there was a tremendous amount of time of the doula being invested — then maybe $5,000,” Fersko-Weiss said. “It's a very wide open range.”
But experts say the bottom line is finding someone that feels right.
"They should feel very comfortable with this person. If there's any hesitancy about the person then they should keep looking," Fersko-Weiss said. "I've been with hundreds of dying people as a doula as a result of this work and they are our best teachers."