Lessons From an End-of-Life Doula
A dispatch from the frontlines of death.
The first thing I notice when I meet Jade Adgate over Zoom is that, even in a two-dimensional world, she has a calming presence—a good thing, I think, considering what she does for a living. Jade is an end-of-life doula (also known as a "death midwife”), which means she guides people and families through the dying process, providing caregiver respite, emotional support, companionship, and more.
Jade was drawn to the profession after spending years as a caregiver to her elderly aunt, who died in hospice in 2018. “It was the first time that I was in a space of a dying person, feeling completely like myself, and like all of my scattered gifts made sense,” she says. “My calmness, my inquisitiveness, the way I like to research things, the way my mind works—I'm a good note taker, and very logical and pragmatic. I feel like all of those things kind of just fleshed out to be perfect for the space.”
She completed her training with the International End-of-Life Doula Association (INDELDA) in 2020. Jade and I spoke earlier today about the challenges of her job, the downside of dying in America, and more. This is an edited and condensed transcript of our conversation.
What do you remember about the first dying person you ever worked with?
I’ll call him Mr. B. to protect his privacy. He was a Vietnam vet, and he’d had a stroke and a heart attack 25 or 30 years before, and he had very limited memory and recall. When I first met him, I had just finished my death doula training and I was so excited. I knocked on his door and walked into his room, and he was like, “What do you want?”
And I said, “Well, I'm Jade and I'm here with Alive Hospice.” [Jade now runs a private practice, Farewell Fellowship, but she previously volunteered at a hospice near Nashville, Tennessee, where she lives.]
And he said, “Wait, you're talking too fast. I can barely hear. What did you say? You're from where?”
It took me 45 minutes to introduce myself.
That’s so funny. Did you get along?
We worked together for a year-and-a-half, and we built a beautiful relationship. The last conversation we had, he was being discharged from hospice because of extended prognosis, which means he wasn't dying fast enough. But for me, it was a really tremendous learning experience. He taught me a lot about slowing down. He's actually still alive.
Wow, do you still see him?
Not very often. One of the hardest parts of my work is balancing relationships and figuring out how to not overinvest myself. Sometimes when I'm hired by a family and then the person dies, I've become such a beautiful part of the family—a lot of times my role is similar to sister or sibling. And so then when Mom dies, it's hard to just sever the relationship in one fell swoop. And so that's a big part of what I'm always trying to negotiate. So with Mr. B, I’ll visit around Christmas.
What else is taxing about the job? What emotional toll does it take?
It is a hugely demanding job, and it has a huge cost, emotionally, to me. And I think that if you're doing this work right, it should be emotionally demanding. Because this is very heart-centered work.
I’m there for very tender, sacred moments, and I don't take them lightly. And I build relationships with people. Most of my clients I have for about six months before they die. And I really do feel like I've become a part of the family. And it's hard. I grieve a lot.
How do you get in the right headspace for the job?
I can't just get in my car and drive to a client's house. I can't just stop by while I'm running errands. My goal is always to show up, not as Jade, but as a vessel for the source of all energy. I want to show up being clear. I want my personality, my anxieties, my worries, my experiences—I want all of that to be left at the door. So for me, I have to be able to spend a fair amount of time in meditation and doing grounding practices and doing all of my spiritual care that allows me to do that.
Meantime, you have three kids and are on call for your clients as they move closer to death. What’s that like?
That’s really tricky. The last client I had who was actively dying, I had a sick kid, and I was so worried, like, “Am I gonna go into this space where someone is actively dying, and all the family is gathered around, knowing my kid might have COVID?” They had paid me to build a relationship so that I could be there in the capacity that they wanted for this moment. This is what all that work had culminated in, and so I had to show up. So I wore a mask, and it was a little awkward—especially for a dying person, it can be really disorienting. But we did what we had to do.
Do you ever have to navigate challenging family dynamics? Or family members who aren’t receptive to your work?
I have not been in a situation where there is someone on the caregiving team that wasn't so thankful for more support. A lot of the time, the family can have difficult dynamics, and I'm stepping into entrenched problems. That is a hard part of the work. Because a lot of it doesn't get solved. And I think sometimes the person that hires me is hoping that I'm going to be a magic elixir and come in and bless the space. But what really happens is I listen to each person and do what I can.
You said something in an Instagram post that stuck in my head—“The way you live is the way you die.” I think that sort of speaks to what you're saying. You're not going to come into a situation and create a death for someone that reflects a life they didn't live.
That's such an interesting idea to me. When I ask people who are called into death work how they envision themselves working, something I hear a lot is [that they’re drawn to] the mystical, esoteric side of death work. But that [doesn’t apply to] the majority of the people that we serve. If I show up with a singing bowl and Reiki, and the person's never used those tools, they're completely ineffective. And so we have to figure out what we're starting with. Even down to the practical things—like, to bring someone physical comfort, you're gonna use their lotion. That’s what’s going to comfort them: The smell of their lotion. The tea that they drink. You can't just introduce all this new stuff when someone is leaving the world.
Is there anything unique about working with dementia patients?
Dementia is fascinating and devastating. So much heartache for me in dementia spaces. I had a client with dementia earlier this year. This woman was so sweet, and she was riddled with agitation and anxiety as she got closer and closer to death. She couldn't rest because she didn't know where she was or where she was going or who was coming. And I tried everything to bring her a little bit of comfort. I gave her a lot of hand massages, I would wash her face with a warm wash-cloth.
And one night, we were sitting up—this was probably two or three weeks before she died. She wasn't eating much and she was sleeping a lot, but her sleep was just so restless. And I tried everything to get her to rest. Finally, I just sat and listened to what she was saying. And she was saying, “Where are we going? Why are we on this train? When are we going to be there?”
Instead of trying to talk her out of it, I just went along with it. I said, “The conductor just said that we're gonna be here all night, and we need to go to sleep. So it's time to turn down the beds. Can I turn down the bed for you?” And she said, “Okay, yes, if the conductor said.” And so I turned down the bed for her. With dementia in particular, I'm not trying to argue or convince or deny.
How would you describe what death is ordinarily like in America? And how do you think it needs to change to become a better process?
So my dad has liver cancer and Parkinson's disease, and he knows that he won't have the same lifespan that he anticipated. But his current plan is to fight like hell to stay alive for as long as he can. And I think that's true for most people. I think that dying in America today is very institutionalized, and we have this almost blind faith that the medical system is going to know what to do, and it's going to take care of us through our end-of-life. But I think that most medical professionals are taught to cure and to treat. And I think there’s a huge gap there between what happens when you can no longer be cured and treated until death.
I would like for death to be more a part of life in a normalized way. I would like for us as a society to talk about death as a part of the life cycle. I would like for us to honor the relationship that we continue to have with our dead after they've died. And I would like to see grief be more supported.
Your kids are 13, 10, and seven. Do they know what you do? How do you talk to them about death?
We talk a lot about death, and I try to involve them as much as I can in my work, because they need to know that it's important—that when I'm not here for you because I'm on call, it’s important. That when I can't show up the way you want me to because I'm grieving or taking care of myself, it’s a beautiful gift that you're giving to someone else. And so I do talk to them a lot about my work.
And sometimes it can be a little tongue-in-cheek. Recently, I brought my oldest to go rollerskating with two friends, and I plugged my phone in for directions in the car, and I was driving to the skating rink and I wasn't really paying attention to the music. And so one of the girls in the backseat says, “What is this music? It sounds like something you listen to when someone is dying.” And I looked down and it was my vigil playlist.
How does dealing so much with death inform how you live?
I think memento mori is very real. Living in awareness of death really magnifies life. When I'm with someone who's actively dying, I find myself really passionate about the things that I love. It just makes me feel like, “I'm so glad to be alive.”
I will also say, I don't buy all of the death-positive movement. I don't think that the more you’re around death, the less scared of it you get. I know a lot of people say they're not scared to die, and maybe that's true—but I'm scared to die. I don't want to die. I don't want to leave my kids behind. I don't want my husband to be a widower. I feel like I still have so many things I want to do.
But I try to remember that I am here now, and I can use this body now. To me, that's really powerful.
Wow this was fascinating -- I had no idea such a job exists. Her job sounds so hard but also incredibly rewarding. (If the way you live is the way you die I think I’ll be dying with concerns about my to do list, but hopefully while on a gummie.)