For as long as humans have been living, they’ve also been dying. Many people, though, struggle to face their own mortality.
A new profession is gaining traction in America, taking a taboo topic and making it more accessible. According to the National End-of-Life Doula Alliance, 10,000 people turn 65 each day in the U.S. And with that generation come family caregivers, friends and others wondering how to navigate the unknown, all in need of an advocate.
Enter the end-of-life doula.
“I think it’s great that more people are interested in learning about death doulas, or end-of-life doulas,” said Kathie Beasley, who lives and works in Laramie as a certified massage therapist, acupuncturist and end-of-life doula with Quartz Hollow. She received her death doula training in January of 2018 in San Diego from the End of Life Doula Association (INELDA).
“My work includes doing community outreach through death cafes, book clubs and workshops, all free to the community,” she said.
She is one of two INELDA-trained professionals listed in the organization’s national directory for Wyoming.
The other, Liz Lightner, lives and works in Lander, where she operates LED with Love, and explains that an end-of-life doula is a “non-medical professional who holistically supports and guides a person and their loved ones before, during and after death, so that they may have the most loving, peaceful and painless experience possible.”
Lightner started her journey as a hospice volunteer in 2013, and felt called to become an end-of-life doula. She did end-of-life training with both INELDA and Doulagivers, and belongs to NEDA, a directory or alliance of doulas that also has a badge doulas can earn by taking an online proficiency test.
“When I realized during 2020 that I wasn’t going to be able to lead the public dementia friendly sessions that I had been doing, as I was heading out through the senior center after my last one on March 13 before shutdown, this idea of education and awareness was in my mind,” Lightner said. “I had been a hospice volunteer since 2013, and I love the idea of hospice, but hate that people wait so long to get on hospice. A lot of times, people are not having those conversations that are necessary to have with their families or medical providers until way late – or never.”
But to create a new profession to bridge the gap, people first must be aware of the need, said Merilynne Rush, an end-of-life doula and past president of NEDA.
“We undervalue caregiving, and that is a hard thing,” Rush said. “People don’t know what doulas are, so it’s hard to set an expectation of cost. But when it comes to medical providers, there is zero expectation that someone will actually be there when your person dies. That is also hard for people.”
To make space for a non-medical end-of-life doula, people must be aware of what they do, she said.
“Every doula who does it is going to offer something different,” Rush said. “Some doulas come into it because they really want to help people organize and get ready and do paperwork and clean their attic, do practical things like take them to the doctor. Other doulas are coming from a spiritual aspect, where they want to talk with people about grief or preparation and sit at the bedside and do legacy work with videos or letters or photo albums.”
NEDA and INELDA both offer online and in-person training, and Rush will help people get started on the business side of things.
“I have people in my classes that come from social work, massage therapy, nursing, as healers and ministers or chaplains, and they all bring their own unique perspective,” Rush said, adding that now she runs several small businesses as a sole provider.
“I absolutely intertwine how to do all of this, how to get started and get the word out about your services,” Rush said. Even with all her business experience, she understands that attaching a monetary value to what end-of-life doulas do can feel like a challenge.
“People feel undervalued as caregivers, but we do recognize the importance of people being with our loved ones, of being prepared and having support, and end-of-life doulas can do that,” she said. “So we talk about everything from how to do an initial meeting with clients and the importance of respecting the threshold into their home or space to the practicalities of should you form an LLC.”
Lightner formed an LLC, knowing she wanted to help people, and tries to do monthly education talks sponsored by the local medical clinic and by the local hospice. The model, Rush said, is to not do medical things, but to walk alongside people and do everything else.
“We are developing this as a profession,” Rush explained.
Karen Reppen, a board member with NEDA, said that she self-identifies as a death awareness educator.
“I get people who are dying, but the most effective work I do is with people who are curious or caregiving, or grieving, not necessarily needing immediate help, but to start people exploring their own personal death awareness, and their own belief systems,” Reppen said. “This can feel like stuff that shouldn’t have to be a job, but should be more of a community thing. … But we are sort of where hospices began, but now hospices have become so regulated.”
When a medical team is focused primarily on someone’s physical health, it can be easy for people’s emotional, spiritual and social needs to fall through the cracks.
“This is why people who are interested in making sure others die well are trying to supplement what is available,” Reppen said.
Many people start with the understanding that, “yes, we are all going to die and that is the only thing we all share. Start normalizing it and becoming friends with the fact of it, rather than being terrified of it,” Reppen said. That, she said, can have a positive impact on someone’s life going forward.
There are all kinds of people in the field across the nation, even if there are very few end-of-life doulas currently in Wyoming.
“There are people who call themselves death positive, or awareness advocates, but it is all this idea that we need to embrace the fact that 100% of us are going to die some day. We can’t deny that,” Lightner said. “Once we actually think about the end of our lives, we may allow ourselves to live more fully.”
On the practical side, she advocates for making decisions about who will be your health care proxy or who will speak for you when you can’t speak for yourself, and for writing your living will and digitizing your directives.
“You can create a QR code that will digitize your directives, because we are not carrying them around with us,” Lightner said. “You can pare things down to just two things: Do you want this, or do you want that? All an advanced directive is is an 'if/then' statement.”
An advanced directive, or written statement of a person’s wishes regarding medical treatment, often including a living will, can be nuanced. Lightner says it is also a document you can write once, update every few years, and save a lot of pain and suffering if, and when, it is needed.
“You can say if you don’t want to stay on life support after three months, and that can give your children something – a way to say, ‘This is OK, this is what Mom wants,"” she said. “It is facilitating those necessary conversations, those important and courageous conversations, because once you have had the conversations, you don’t really have to have them again. It is done.”