Death doulas: Normalizing discussions of death and dying

An evolving profession aimed at planning for the end of life

Tayler Shaw
tshaw@coloradocommunitymedia.com
Posted 9/14/22

Although she’s healthy, Vanessa Johnston already has a plan for how she’d like to die. 

This item is available in full to subscribers.

Please log in to continue

Username
Password
Log in

Don't have an ID?


Print subscribers

If you're a print subscriber, but do not yet have an online account, click here to create one.

Non-subscribers

Click here to see your options for becoming a subscriber.

If you made a voluntary contribution in 2021-2022, but do not yet have an online account, click here to create one at no additional charge. VIP Digital Access includes access to all websites and online content.


Our print publications are advertiser supported. For those wishing to access our content online, we have implemented a small charge so we may continue to provide our valued readers and community with unique, high quality local content. Thank you for supporting your local newspaper.

Death doulas: Normalizing discussions of death and dying

An evolving profession aimed at planning for the end of life

Posted

Although she’s healthy, Vanessa Johnston already has a plan for how she’d like to die. 

She’ll be close to the outdoors, able to see the trees she loves. The smell of Nag Champa incense will fill the air, and a Spotify playlist she’s created will be playing. Her friends and family will visit, writing down funny stories or memories to share. 

Assembling this plan, which Johnston calls vigil planning, is part of her job as a death doula, a versatile and evolving role. 

“There are a lot of different names for what I do,” Johnston said, explaining other names include end-of-life doula, death midwife, exit coach and death companion. “The simplest way I can say it is that I provide emotional, spiritual and informational support for people at the end of life, and for their loved ones around them.”

Talking about death is hard, she said, but knowledge is power. When she works with clients, she aims to help them prepare for what’s to come and design an ending that best fits with the rest of their life, rather than experiencing a “default panic mode” about death. 

“Part of the problem of not being willing and able to talk about something scary, like death, is it just promotes more fear and anxiety. And I really wanted to dismantle that, if I could,” she said. 

"I tell my clients, I can’t take away the sorrow and the sadness, but maybe with more knowledge, we can focus less on fear and anxiety and more on love and meaning,” she continued. 

As a death doula, Johnston typically works with people who are in hospice, and she’s usually contacted by the child of the person dying, she said. 

She offers a variety of services including offering information about the dying process, addressing worries and issues, providing emotional support and planning and helping implement the atmosphere the client would like to have as they are dying.

“My ultimate goal is to help people have an empowered ending … to have a peaceful ending, whatever that looks like for them,” she said. 

In the five years since starting her business, Denver EOL Doula, with EOL standing for “end of life,” she has had about 15 private clients and serves people all throughout the metro Denver area. 

One of her recent clients was Michelle Smith, a 52-year-old veterinary technician and beloved friend who passed away on June 4. 

A warm and welcome friend 

Rose Barr, a 45-year-old veterinarian at Tender Touch Animal Hospital, met Smith in 2010 through work, and the two became close friends and eventually like family to one another. 

“She was very warm and welcoming. She valued having meaningful relationships with people,” Barr said, her voice filled with emotion. “She had this beautiful laugh, beautiful eyes.” 

A veterinary technician of about 20 years, Smith was great at her job — especially when it came to dealing with naughty cats, Barr said.

“She was the one that you could turn to every single time, and she’d be able to do what we needed to do," Barr continued. 

About 10 years ago, Smith was diagnosed with breast cancer, Barr said. She got a mastectomy and understood that the surgery was curative for her at the time, and she was put on oral medications to try and control hormones. 

Smith found out the cancer was back in about 2016, and around 2019, it had worsened and was in her spine. By November 2021, it started to change drastically and her doctor told her she needed to start the injectable chemotherapy treatment. 

“She started to feel better with some of the symptoms, and then in February, it just didn’t seem like it was responding anymore. And that’s when her doctor was like, you know, I think that you should go into hospice,” Barr said. 

Smith had a tense relationship with a lot of her family members, and her parents are elderly and didn’t really understand what was happening, Barr said. Smith relied on her friend network, including Barr.

Around this time, Barr was reading a fictional book, “The Book of Two Ways,” and through reading, she learned about the concept of death doulas. Her curiosity piqued, and she began Googling death doulas in Colorado to potentially help Smith come to terms with what was happening, as Smith initially was hesitant to acknowledge or accept she was dying, Barr explained. 

“What I was hoping to get out of it was just somebody who had experience with death that could help us in a way that wasn’t just, ‘Get your affairs in order,’” Barr said. “Somebody that could just listen to her, talk to her in her own home.” 

Originally, around February, Smith began working with a different death doula, but after that person had a family emergency, Smith was referred to Johnston in April. 

Although Smith was told to go into hospice around February, afterward, Smith’s doctor said chemotherapy may actually be working, and Smith continued getting treatment. However, on May 24, Smith collapsed in the parking lot as she was headed to an appointment. 

At that point, Smith stopped getting chemotherapy and she began hospice, which was done at Barr’s home. 

“And hospice, I kind of always thought they would just be there all the time, and that’s not how it works,” Barr said, explaining the nurse came over about three times and the chaplain and social worker each checked in once. “And so just having another support system was huge.”

Barr said it was valuable to have Johnston around, who had been through the process before and would often reassure everyone that they were doing a great job. She said Johnston offered emotional support to people, often explaining what was happening to visitors and helping remove some fear about the situation. 

Having a death doula helped get Smith to a point where she could talk about her death and share her wishes with others, Barr said. Johnston also helped Smith’s family and friends navigate the final days, encouraging people to talk about what was happening and to share happy memories of Smith. 

Johnston also helped get a lawyer and a notary to visit Smith and Barr to complete Smith’s will, something Barr said they were panicked about beforehand.  

Early in the morning on June 4, Smith passed away in Barr’s home. Upon her passing, Barr asked Johnston to check in with Smith’s parents, as she didn’t have the emotional bandwidth to do so. Johnston also came to Smith’s celebration of life, held at Hudson Gardens.

“I feel like Vanessa gave us a lot more support than hospice was able to, and even if it was just talking and checking on us and trying to help facilitate things with visitors,” Barr said. 

Barr describes death doulas as wonderful people who can guide others through the dying process, whether it be navigating the paperwork, the emotional part or the physical part. She said she’s considering hiring a death doula again to help her get her own affairs in order before this year is over. 

“I think that it’s a great thing to help you on that part of the journey, to have a death doula,” Barr said. “I think that it can help with all of the feelings and fears and emotions.” 

Becoming a death doula 

Before entering the death doula profession, Johnston worked as a high school English teacher. 

In 2015, she was looking for a different career outside of teaching, and a friend asked if she would be interested in serving as an assistant to a man who had amyotrophic lateral sclerosis, or ALS, a progressive nervous system disease. 

“And so I said, ‘I’m happy to do that. I have no medical experience whatsoever, but if he’s just looking for a companion, I can do that,’” Johnston said. 

While caring for the man, she heard about a book called "Caring for the Dying: The Doula Approach to a Meaningful Death." Through reading, she learned “death doula” was the term for a person who serves as a compassionate companion to someone at the end of life. 

“And I thought, ‘Oh, that’s what I’ve been doing.’ So it kind of gave a name to the role that I had been kind of fulfilling intuitively anyway, and really helped me understand what that role was,” she said. 

Johnston decided to pursue training with the International End of Life Doula Association, which she completed in the summer of 2017. She began volunteering in hospice and applied her new skills towards helping care for the man, who passed in October 2017. 

“And I felt like I had really helped him and his wife just go through that last milestone in a way that honored his story. And I thought, 'Well gosh, I really want to continue to do this if I can,'” she said. 

The following year, Johnston established her business, which she said was a complicated process. Part of the difficulty was convincing people that her services were valuable and something everyone would benefit from. 

She began connecting with other doulas in the Denver area, and in 2020, they decided to form the Colorado End-of-Life Collaborative, a nonprofit membership organization. She explained it helped create a support network for the doulas and get the word out about their profession. 

“We figured that our voices together would be louder than our voices separately, so that was the impetus for just, let’s get together and cultivate a community,” she said. “We want to provide a community not just for the providers who are doing this work, but for people who need these services.” 

A network of support

Originally, Johnston said the idea was to only have a directory of doulas in the nonprofit, but then the members saw there was a need to also have a network of other providers, called affiliate members, such as people working in funeral homes, grief counselors, notaries and so on. 

Now, there are more than 35 affiliate members across Colorado, and the number is growing, she said. 

One affiliate member is Crispin Sargent, a certified grief yoga instructor who worked for 30 years as a geriatric care manager, offering services such as advance care planning and acting as power of attorney or conservator for some clients. 

“During that 30-year period of time, clients would come to us because of dysfunctional family, or because they had no family, or where the court made a determination that a disinterested third party was needed to serve in the role of conservator,” she said. 

She has since begun a new company, Chun Hwa LLC, which focuses on offering yoga and grief counseling, she said. However, as an affiliate member of the nonprofit, she still offers services related to advance care planning and the “business of death,” as she calls it. 

“It’s that community that says, nobody can do this work alone,” Sargent said about the nonprofit, explaining members of the collaborative can call on one another for assistance. “All of the members of that group have a specialty, have a passion.” 

Death is a life experience, she said, and she knows from personal experience the value of planning and preparing for death before a person is close to it or is in crisis. 

“You want to do all of your planning at a time where there can be stories that are told,” she said, explaining planning ahead of time allows for more consideration of options and for a person’s loved ones to understand the plan as well. 

“If you try and do all of that at the deathbed, your brain isn’t functioning, nothing is functioning, nothing is in place, and you don’t have that opportunity,” she said.  

Although Sargent had previously done the legal parts of planning and preparing for her death, she said she hadn’t thought about the actual time of death and the type of environment she would like. 

Earlier this year, she began working with her friend, Karen Keeran, who recently became a death doula. Together, they began discussing Sargent’s wishes, such as having a calm and quiet environment when she is close to passing. 

“I have a very significant level of gratitude to her because she knows that I can be a different kind of challenge because I know too much,” Sargent said, explaining she looks at situations from every angle. “She keeps me on track.” 

Prioritizing education around death and dying  

Choosing to become a death doula was a spiritual type of decision for Keeran. 

In 2020, a year before she retired from her career in business, Keeran was meditating and asked the universe what she should do next. She said she woke up the next morning and it was like a light switch had been turned on — she should become a death doula. 

She had learned about death doulas a few years ago from a friend, she said. Following her retirement in 2021, she began her six-month training with the Conscious Dying Institute, as well as began training to become a certified nurse aide. In February 2022, she also completed training through the Conscious Dying Institute as a conscious dying educator.

“Knowledge and information, I’m a big believer in, reduces fear,” she said. “I want to be able to bring that planning to the fore and have that in place before we reach (the) end of life.”

A main focus for Keeran, she said, is targeting education efforts toward older generations, communicating the value of putting together an end-of-life plan and exploring topics of pain, caregiving and Medical Aid in Dying. She also helps people learn about the variety of body disposition options available to people in Colorado, such as water cremation

With this goal of educating and helping others, Keeran launched her business, Golden Heart Transition, this spring. She offers a range of services including grief support, doula services, end-of-life planning and coaching using the “best three months” model developed by the Conscious Dying Institute.

One of her first clients was her friend, Maxine Wagoner, an owner of a yoga studio in Golden that Keeran is a member of. Wagoner said she had never heard of a death doula until Keeran approached her. 

“When she introduced it to me, what she was doing, it was really interesting. I was kind of surprised, but yet, at the same time, I was like, wow, that’s a really unique business and a unique way to help people,” Wagoner said. 

While Keeran was completing her training last year, she needed people to practice her skills with, Wagoner said. Wagoner volunteered, and they did the “best three months” course.

“You have to put yourself in a mindset of, you have three months left to live. And then, in that three-month time, what practically do you want to accomplish?” Wagoner said. “And it was good to be able to do it without actually being in that situation.” 

As part of the experience, Keeran gave Wagoner a map to write down what Wagoner’s wishes were so her family would know, helping alleviate some of the stress her family would experience following her death. 

“We don’t know when we’re going to pass unless we’ve been given that kind of diagnosis. So for me, it was really powerful and … made me feel strong about it,” Wagoner said. “It’s just a very comforting feeling, and empowering yourself to be able to express what you really want, because to family members sometimes, you can’t express that.’ 

The future of death doulas 

As educators about death and dying, both Johnston and Keeran expressed the importance of changing how people discuss death and dying, such as not associating it with giving up or as a failure. 

“We know it’s inevitable, so let’s work on our approach to this inevitable thing,” Johnston said. “A big part of what I do is to normalize this for people, which it seems strange to say that this thing that happens to 100% of us needs to be normalized, but it does because we don’t ever talk about it.”

There has been some progress, as Keeran said she remembers a time when death and grief were hardly ever talked about, especially in the 1970s. 

“I have a deep background in death. My childhood was full of death and loss,” Keeran said, explaining she was basically on her own at 19 years old.  “Who I want to be now, is that person that I didn’t have, and my family didn’t have when I was growing up.” 

The death doula profession has also evolved over time, Johnston said, and as an emerging profession, discussions continue about how it may change in the future. 

Although she said she wants to legitimize the profession, she’s hesitant about the idea of establishing a national certification board for death doulas, as there currently is not one. 

“The tricky thing is, is that people have done what I do for millennia,” Johnston said, explaining she doesn’t want to create further barriers to entering the profession. 

Currently, death doulas are outside of the medical care system, and Johnston said she thinks it should stay that way. 

“I’m very hesitant to get into any kind of a role in the medical care system,” she said, explaining she worries about over-regulation. “If I were to be, like, a Medicare benefit, then I would have this obligation to follow these strict rules, which really hampers my ability to meet families where they are, to serve whatever their needs are.”

In her current role, Johnston has maximum independence and flexibility, she said. However, being outside the medical care system can hinder people’s willingness to pay for the death doula services since it’s out-of-pocket, she said. 

“It’s this tricky thing of establishing value while providing the service, but I really think that the future of death doulas remains outside the medical care system just because that independence and flexibility, I think, is how we serve our clients the best,” Johnston said. 

Keeran agreed, saying she has seen how hospice nurses and aides are limited in how much time they can serve clients. She said she sees death doulas as offering specialty services, also noting that limiting death doulas to hospice care could reduce the number of people the doulas can serve.

Although working as a death doula can take a lot of emotional capacity, it’s a job Keeran and Johnston feel called to. 

“This is me doing my heart’s work now, and it’s just super exciting,” Keeran said. 

Despite what others may think, Johnston embraces life because of her job, she said. 

“When somebody says, ‘That must be so depressing,’ I’m like, actually it’s the complete opposite,” Johnston said. “When you deal with death on a daily basis, it really makes you value life.”

Death doula, end of life, death, dying

Comments

Our Papers

Ad blocker detected

We have noticed you are using an ad blocking plugin in your browser.

The revenue we receive from our advertisers helps make this site possible. We request you whitelist our site.