Most people have heard of birth and postpartum doulas: trained, non-medical professionals who support parents welcoming a new child into their family.
End-of-life doulas aren’t as common, but they see their work as parallel to that of their colleagues who focus on birth. Death, after all, is a transformation, one that we are all guaranteed to face.
The end-of-life doula association INELDA says the doula’s role is to “provide companionship, comfort, and guidance to those facing a terminal illness or death.” The care doulas give is “non-medical” and may be “emotional, spiritual, and practical” in nature.
HuffPost spoke to several end-of-life doulas about their work and what they have learned by supporting the dying and their grieving families.
Garrett Ellis
A lot of people really do understand the term “doula” in regards to birth: someone who’s supporting an individual as they’re coming into life. Honestly, an end-of-life doula or death doula is kind of the same thing but on the exact other end of the spectrum. I consider myself a labor and delivery companion of sorts, helping individuals to experience as graceful and peaceful of a death as possible. Being a support person, being that companion and showing up in different ways, whether that’s bedside vigil, planning, grief support.
Like many end-of-life doulas, I’ve experienced a personal loss. When I was a child, my mom died pretty violently. She was hit by a car in front of me. Initially, I stopped speaking. Then one of my counselors gave me a notebook and a pencil and told me to write until I felt better. I’ve been doing it ever since. I was also that kid who people were inviting to funerals, oddly enough. I think I gave my first eulogy when I was 14. I felt very comfortable not only navigating my own grief but helping others to navigate theirs.
One of the things I do most frequently as a death doula is to normalize grief. Most individuals need to be assured that their responses to their grief are normal. That it shows up as anger, resentment, depression, whatever the emotion is. People desire to be seen and heard while they’re experiencing those feelings. The culture that we live in is so death-phobic, so many people feel like their reactions aren’t natural, that their grief is supposed to end quickly or they’re not supposed to feel what they’re feeling. I find myself frequently assisting individuals in owning their emotions.
I also find myself very frequently providing what we call presence ministry. When someone’s grieving or when someone is terminally ill, they’re losing control over things in their life. They need someone there that is going to be a stable force and a person whose perspective might be a little detached from their grieving process. I think those two things are woven throughout whatever activity I’m actually doing. I’m always normalizing emotions and always providing just a stable presence.
In the doula world, we often have the vision of an ideal death. But death is messy. It is hard to watch at times, and I’ve seen some hard days. One in particular was an individual who was dying from a bowel obstruction — that was very hard to watch. During the pandemic, I was able to do postmortem care for individuals on a COVID unit in the hospital. I was washing bodies, transporting them to the morgue. The frequency of death on a daily basis was hard. I actually took a break after that.
When we think of a good death, we try to define what that means for an individual. But I’ve had clients that didn’t want a funeral. They didn’t want a memorial service. They didn’t want a big group. They didn’t want people in the room with them when they passed away. As a doula, you have to understand that every individual’s desires and wants are different, and you are coming in with no agenda.
To the family member of a dying person, I would say: Be a son, be a daughter. Don’t feel like you have to be a care manager or a social worker, just experience the loss, because grief does not go away. It may be prolonged or held off, but there will most likely come a time, after the casseroles are gone, where it’ll hit you. The sooner that you engage your intense feelings, the sooner you can start to process. Not that you can hurry up your grieving process, but be where you are. Have a doula or other outside person if possible to take off some of the weight. A couple years ago, I actually experienced the death of my father. Everything in me just wanted to say, like, “Hey, I’m a doula. I know what to do, right?” All of that is true. But once you’re in it, you want to be a son grieving a loved one.
Grief is common, and it is natural and it is not limited to time and space. It evolves and it changes. You learn to manage it. A perfect example is my grief for my mom, which was very different when I was 7 and now, when I’m 40. I’ve grieved at different times. I have kids now, and they won’t meet their grandmother.
There’s a great book called “The Sixth Stage of Grief,” by David Kessler. It’s about individuals having the right to assign whatever meaning they want to a death experience. That in and of itself can be healing and part of their journey. Now, that might mean they assign no meaning to it. It’s up to them. But there is something to be said about finding a motivation out of very painful experiences and that helping you to move forward.”
Dawn Betts
I was drawn to hospice work. My dad was on hospice, my grandma was on hospice — two completely different scenarios. I started out doing hospice massage. That was kind of my entry into this profession. As a massage therapist, I’m there massaging their hands and a lot of times they just talk, so the work just naturally happened. It wasn’t like, “Oh, hi. I’m here as your end-of-life doula.” It just naturally occurred. There were times where I would be able to get information and the social worker and spiritual counselor were, like, “We can’t get that information. How did you get it?” I was just there, as a non-threatening presence.
My dad was younger when he passed. He was only 63 or 64, so there were a lot of doors that he had to close before he could transition on, and it took a while for him to decide that this was it. Our hospice nurse at that time, I’ll never forget, she came in she said, “OK, you’ve served your family well. Your family will be OK. You can you can move on now.” And he passed within the next half hour, I think.
Everyone dies differently. Some people go so quickly and some people it’s like, “What are you waiting for? What do we need to do? Who do we need to bring in to let you finally say, ‘It’s OK, I can go.’”
Sometimes people hang on for some reason. Sometimes it’s a date, or they’re waiting for a family member to get there. My mom and I were with my grandma when she took her last breath because we happened to have been woken by a neighbor at three-something in the morning. My grandmother was the type of person who never wanted to be alone. Whereas when my dad died, he waited until we came back downstairs. We were with the nurse. We had a baby monitor, and I remember looking at the monitor and all the lights lit up as if there was a noise happening in the bedroom, and we knew that my dad did not have enough energy to make any noise. The nurse was getting ready to leave, so I ran upstairs to check, and my dad had passed. He did it on his own. He didn’t want anybody to be there, and, in hindsight, I knew my dad would do it that way.
The advice I would give someone facing a terminal diagnosis is, live your life. Hospice and end-of-life work isn’t focused on the end of life. It’s focused on living the life that you have left. There’s a huge misconception that you come on hospice and you’re going to die immediately. A lot of times it’s not the case. To someone who has a terminal diagnosis, I would remind them to live their life and enjoy every moment that they have.
I think that death needs to be more normalized. And spoken. People wait until they’re in a crisis moment. We did it as a family. I wasn’t really involved in hospice at the time when my dad got sick, and it was, like, “OK, the chemo is not working, and he’s going to die in six weeks.” If I only knew, I would have had conversations with my dad prior to that moment because he was not in a good place at that time. He was so sick from the chemo that we really did think he was going to die in those six weeks, and he didn’t. He actually lived another two years.
I feel like my dad prepped me for this work because he’s a perfect example of the work that we can do, even if you’re not on hospice. He came off of hospice, and then my mom was, like, “OK, let’s plan that trip.” They were able to go to see the Grand Canyon. We’re in Jersey, so that was quite a drive. She took him out there and he saw the Grand Canyon, and he lived his life.
A couple of weeks ago, my husband and I unfortunately witnessed a very bad motorcycle accident. They were trying to revive the person on the side of the road. My daughter said, “I don’t know why you had such a hard time with that. You deal with death every day.” I said, “I deal with death every day with a patient that knows they’re dying. This person wasn’t supposed to die. They didn’t get time to prepare.”
When I had my third child is when they started doing those birth plans. We really need to encourage people to have an end-of-life plan.
Karen Bellone
My role as an end-of-life doula is to be present in all ways possible to another human being, to walk alongside them in the last part of their journey of this lifetime. I hold space for them. I’m there to provide comfort for emotional, psychological and spiritual concerns. I’m also there to accompany the circle of loved ones before, during and after the death. So we’re holding space for all of those lives together as the dying person is on their journey.
One of the mantras of working as a death doula is to meet people where they are on their journey. We’re not there to fix anything. We’re there to be present, to listen without judgment, to help the person integrate their lives and to ease their distress. We help them honor the life they’ve lived and discover and integrate meaning and significance from the life that they have lived. We also work with them on what may become a commemoration or a legacy. That might be a video or a collage of photographs. Some people make scrolls that can be rolled up and unfurled and so you can just be looking at a piece of it or you can look at the entirety of it. It’s about working with them and listening to them and their stories, to glean what will honor them and be something that will bring comfort and remembrance of the essence of their life. I’m also there to help them make peace with regrets or things they feel are left undone. It doesn’t matter how long we live, I think we all get to that point where we feel that we’re not finished.
Some of the common themes are: the road not taken, shame and regret about wrongdoings. I think one of the biggest things is love and the expression of love. Did the people I love know I love them? Did I make it clear to them by my actions, by my words? Did I love enough? Was I loved enough? Do I still have time now to remake or undo things? That is a big part of the work that I feel is our responsibility as doulas, to accompany and offer assistance so that someone who is nearing the end of their life can find some closure.
Once you’re walking the path with someone, nothing seems unusual because it’s all coming from an authentic place of need. Even the most mundane or painful things become beautiful. One man who I spent nine months with before he passed, we both had a love — or an addiction — to Pepsi-Cola. So one of the ways that we became comfortable together was in sharing a nice icy cold Pepsi every time we met. It was kind of our ritual. He had Parkinson’s, so it was difficult for him to drink the Pepsi. I had to mix it with the thickener that is often used for people who have swallowing issues. Even that was irrelevant because he still experienced the joy.
One woman I was with had young children, a 14-year-old and an 8-year-old. She asked me to just be present and bear witness to her when she was saying goodbye to them before she felt she was going to slip into a place where she wouldn’t be able to be present in the way that she wanted to be. It was the most painful and simultaneously beautiful experience I’ve ever had rolled up in one moment. She she was a Buddhist. She was very conscious about her death. She wanted to let them know that they should not mourn her, but they should be rejoicing for her because they love her and she will no longer be in pain, she will be moving on to a different part of her existence, and that she was looking forward to that as much as she would miss being with them.
Education and death awareness is a big part of my job. I think the earlier we start these conversations, the better chance we have of being able to walk a path of least resistance when we get there. To accept that we are walking towards that transition is actually a gift. Death can be not the end only of this mortal life but also could be the culmination of a life well-lived. If we start looking at it from that perspective, maybe we move away from the fear and the denial.
If we do that exercise to envision ourselves in the last three months of our life, if we received a terminal diagnosis, let’s say, I think the things that would bubble up in our consciousness would be so surprising to us. The needs that we have that we did not heed or listen to or connect with when we were so busy leading our lives.
We celebrate birth because it’s the beginning of a life, and I contend that we should bring celebration to the end of life because it is about the beauty of that life. Of course, there’s going to be sadness, there’s going to be tears. There’s going to be regret. There’s going to be all of these feelings that we’re mostly uncomfortable with. We labor in birth, too. We just don’t concentrate on that because at the end of it, it’s a new life. But it’s really the same process because we labor in death.