Shelby Kirillin is an “end of life doula.” Not a “death doula” or “death midwife.” To describe the particular kind of work that she performs, Kirillin prefers the more precise term. That’s because, to Kirillin, dying is in fact a significant part of living. The way she sees it, the end is a process, one that should be actively participated in by her clients and their friends and family alike. “Even when you’re on the journey of dying, you can still impact the world,” Kirillin says in the soft, patient tone of a nurse, counselor, healer, mother—all roles that she fulfills at one hour of the day or the other. Even in death, “you can still learn from your life.”
As the founder of Peaceful Passings in Richmond, Virginia, Kirillin serves a variety of individuals who choose to engage in their deaths as they did in their lives: open-eyed. “This is really a conscious dying movement,” says Kirillin. “It is not for the general population that wants to bury their heads in the sand. It’s for the people that say okay, this is happening, and it sucks, but I want to acknowledge it because I am still living.”
I spoke to Kirillin over the phone about labor, blessing ways, and the exuberance to be found in dedicating one’s life to helping others achieve a good death.
The Rumpus: How did you come to your work as an end of life doula?
Shelby Kirillin: I’ve been an ICU nurse for twenty years, and about seven years ago, I started getting fed up with how we do death in our culture. For every good death—and when I say good death, I mean like when you walk in, the room would be warm and inviting and comforting and just full of love—but for every one of those I’d get ten deaths filled with anxiety, sterility, pain, denial… and it would really make me mad. When I’d see a good one, I’d think, Why can’t everybody have a death like this? I’m sure if I polled most Americans, the death I’m describing would probably be the one that they would want, but that’s not what they’re receiving.
I did a lot of research. I talked to a few hospice nurses who described what they do and their patient load, and I was like, that’s not it, that is not this crack in the system that I’m seeing. Then, a close coworker was diagnosed at forty-four with Stage IV colon cancer. She wanted to die at home, but she had tumors in her lungs so she was short of breath. She went home on hospice but nobody could care for her. Hospice is there for an hour or two and then they leave, and the family is there twenty-two or twenty-three hours like deer in headlights. I and a few other nurses kind of took shifts. What I realize looking back now is that I was her doula. I didn’t provide a lot of medical support; it was a lot of emotional support. The time that she was sleeping, I was talking to the family of her daughter. I had table talk discussions—a whole bunch of fun questions for families like, What is your favorite memory [of Sherri]? Whether Sherri was listening or not, we would always do it in her room. Sometimes she’d laugh or smile. It was a beautiful time. She had a beautiful death and so I thought, Gosh, that’s it.
About three and half years ago I read a New York Post article on a death midwife in Canada. I contacted her and asked if she would be my mentor, and she agreed. We did mentoring via phone and then I hung a shingle and I started to do it. I put [out a call] on social media and said I was looking for clients—the first few would be pro bono, as this was a new venture for myself—and within five days I got my first client. It was someone I didn’t know but it was a friend of a friend of a friend. The mother had cancer. The patient and her husband weren’t yet talking about end of life stuff, but the daughters were the ones that contacted me because they saw the trajectory. They weren’t ready to say the word “hospice” but they knew it was coming down the pike, and they all wanted to be prepared and give their mom a good death. The daughters were like, what are we going to introduce you as? I didn’t lie! I just said I’m a nurse, but my role here is different.
When you get diagnosed with anything—but in her case cancer—you become, here’s your next chemo schedule, here’s your portacath appointment, here’s your radiation schedule—and the humility of the journey is completely removed. Our Western culture, and Western medicine, treats our end of life as a medical experience and it’s not. This woman was nodding and smiling like, Yes! You get it! I said, “My job is to put the humanity back in this journey, no matter when and where it ends.”
From then I just kept having clients who’d find me through word of mouth. I wanted to get a certification and study more, so I found INELDA (International End of Life Doula Association). I looked into a couple different programs but INELDA spoke to me the most, so I took the workshop with INELDA and became certified and I’ve been doing this ever since.
Rumpus: Who typically reaches out to you, the family, the spouse, or the patient themselves?
Kirillin: Half the time, it’s the individual and the other half—it’s always the daughters. I hate to cast a big net, but it’s typically the daughters who tend to be the caregivers towards the end of life.
Rumpus: Is there any religious influence within the practice of an end of life doula?
Kirillin: There is no religious aspect at all because we’re there to support whatever their journey is. I had a client who was a Baptist missionary. I’ve had agnostics. I’ve had people who follow Zen Buddhism. I’ve had the whole gamut. Certainly we borrow from the Buddhist mindset of mindfulness and consciousness. As doulas, we see the dying process as a life process, not as a medical experience. Our bag of tricks doesn’t include morphine and Ativan, which are great drugs, don’t get me wrong—but I’ll do guided imagery instead.
I had one woman who, even though she was on a Fentanyl drug, was still in excruciating pain. The Western nurse in me was like, there is no way I can help alleviate this woman’s pain, but as a doula, I came to her bedside and asked if she wanted to do guided imagery. She had told me about this special place in New Hampshire, a camp that she and her family always went to, and so I’d had time to research it and could see in my mind’s eye. I led her on a guided imagery and she fell asleep, which just blew my mind.
There are so many comparisons between birth and death. I’ve had three children, and I can study all the breathing techniques I want, but when I’m in the throes of a contraction that goes out the window! But for someone to sit there and say, Shelby, return to your breath. It’s okay, allow it to come. Relax your face, relax your shoulders, allow it to come, there is something so soothing about that.
I’ve seen a lot of death. Most people in our culture don’t labor death—I say labor death; we labor into the world, and we labor out—and we don’t know what to do with our loved ones anymore, which is sad. A hundred, two hundred years ago, if someone was dying, everyone knew their role; everyone pitched in. Now most people just see death in a funeral home dressed up pretty. People are scared to touch their loved one in fear they’re going to hurt them. Sometimes, just to be like, Do you want to get in bed with your mom and hold her? Do you want to massage her? It’s about normalizing the dying process.
The death midwife who mentored me calls us death tour guides. She’s like, you’re the driver of the death bus, and you just open the door and tell everybody get on. Just like birthing, death sometimes doesn’t smell good or look good or sound good, but it’s natural, and our bodies know how to die. We just need to step out of the way. We need to get out of our own way and appreciate it for what it is.
Rumpus: I’m interested in the relationship between your work as an ICU nurse and your work as an end of life doula. Do you feel like patients take more comfort knowing that you have that experience as a nurse? Because you have this experience as a nurse, do you feel like you’re better equipped for the role? How do you envision the relationship between those two practices?
Kirillin: That is a really good question. What I always tell my patients that hire me as a private practice doula is that yes, I am a nurse, but I am not functioning in that role. So any time they have questions about medicines—especially when they get into hospice and they’re like, I’m taking four Zoran and I don’t know if I can take another two, I say, That’s a really good question, let’s call the nurse.
I always make it a very, very black and white line: I am here as a doula, not as your nurse. But as far as coming to this practice, it does help because I’ve had twenty years of seeing people and families deal with death in a multitude of different ways. I have practiced sitting with somebody and being on that journey, but having a veil where I’m not in their quicksand. I’m the empathic person that can be there and empathize but still know that it’s not going to come into my heart. I’m not saying they don’t mean anything to me, but it’s a protection of my own heart.
Being a nurse also helps because medical stuff doesn’t scare me, but I think anybody could be a great doula. The end of life process, you can learn. The biggest tool we have is being an active listener and anybody can do that.
Rumpus: On your website, you say you offer clients blessing ways and forgiveness circles. What do these rituals entail?
Kirillin: Traditionally, the Navajo performed a Blessing Way. It was a time to honor the woman who was about to give birth. [Now, this idea has been brought into mainstream culture and adapted.] You invite your very close girlfriends (if there’s a guy he can come) and first, you feast. You feed each other as a community at the table, and then you go around and say how you came to know the mother-to-be. Then, you are asked to read to the mother. You don’t bring gifts—you bring scripture, a poem, a song, a letter. I had a blessing way for my third child, and someone gave me mantras to read during labor. It’s a celebration of womanhood.
During one of the blessing ways that I was a participant in, I remember sitting there and being so moved, because people were saying things to their friends that they don’t take the time to say in everyday life. I remember thinking, We need to do this for the dying. This is a living eulogy. It’s really sad that people have all these wonderful things said to them but they’re dead and they don’t get to hear them. I wanted to do this for the dying and so I’ve replicated that ritual.
It definitely takes a special patient and special friends—it’s not a blubber-session where you sit there and tell them how much you’ll miss them—it’s about saying what made them special. I will never forget this, you have taught me this, my children still remember you because... The goal is to reinforce for the person who’s dying how amazing their life has been, that they have touched all these people in the room.
The forgiveness circle is just that: we all have regrets and unfinished business and shame, and at the end of life, it’s important to say I forgive you and I love you. It’s allowing family or close friends to have that moment.
The other kind of ritual we do is a vigil plan. When someone is working with me who is not actively dying—they are otherwise healthy but living with cancer—we do a vigil plan. Basically, we ask, how do you see your death? Where do you want to be, not just at home, but in what room? How do you want the sunlight to be? We can move beds. A lot of people put the things they like to look at in their kitchen or hallways, so let’s bring those things into where you are. What do you want to hear? What do you want read to you? I’ve had people pick out specific hymns or bible verses. Some people want a book of poetry. One person wanted NPR playing [laughs] or the newspaper read to them.
We also do legacy projects. A couple of my clients have written an email to all of their friends throughout their entire lifetime, asking to send in letters of moments they’ve shared together. The families bind these together and their memory book is read to them at the end of life. We keep the book at the bedside so when people come to visit—a lot of times, they don’t know what to do after they say I love you, I’m going to miss you, but they want to stay—to keep gossipy talk from invading the dying space, to keep that space sacred, there’s a whole book of things that you want to hear that can be read to you.
The only ritual that I really encourage my clients to do when I do a vigil plan is an ending ritual. I envision everything as a book and this is your book of life. When we’re writing your vigil plan, we are writing the very last chapter. After you take that last breath, we are closing the cover, and so that last ritual is your loved ones closing the back cover of your book of life. I’ve had clients pick specific poems to be read while everyone stands around them. I have had clients who chose specific songs to be sung. It can also be as simple as blowing a candle out. Another doula’s client loved the element of water, and after she passed away they took a bowl of water from a creek that was on their property and they put some petals in it and everybody stood around and picked a petal and put it on the part of the body they were going to miss the most. Someone put it on her mind because they always had deep discussions. Someone put it on her lips because she always spoke kind words, and someone put it on her hands because she always loved and cared with her hands. When they were done, there was this body covered in petals.
Rumpus: How do you feel like your work as an end of life doula has changed your own views of death?
Kirillin: It’s changed me in every way. Being reminded of your mortality on a constant basis makes your life so much better. When you’re constantly reminded that this has an end, you feel so thankful. When I know my client can no longer walk outside, I don’t take going outside for granted anymore. Some people are like, isn’t your work sad? and it’s really not, because I’m reminded so often how I’m not going to take anything for granted.
Rumpus: Do you talk to your children about death on a regular basis?
Kirillin: I think on a regular basis it always comes up. When you don’t talk about the elephant in the room, you can’t achieve that level of beauty. The people who are hiring me are the ones who, while they’re kind of scared to look at the elephant, they know they have to. There’s still a large amount of people that really like that elephant and I’m not good for them. [Laughs] I put neon lights on it and I dance around it and paint it pink.
Rumpus original art by Kara Y. Frame.
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