All About End-of-Life-Doulas (Or, Everything You Need to Know About Dying, But Didn’t Know to Ask)
I’m excited to kick-off a new monthly series called Grief Guides.
I’ve had the privilege of meeting so many kind and amazing people working in the grief and bereavement space, and I’m a firm believer that knowledge is power. When it comes to grief and death, there is so much I didn’t know until I went through it.
Truly hoping that by putting some resources here for others to share can help someone else on this journey.
I wish I had known about End-of-Life Doulas when Daryl was dying, because it would have helped me immensely in processing and understanding what we were going through.
As the saying goes, “You don’t know what you don’t know.” I hope this interview will help you learn about death and the ways you might support a loved one.
I met Shelby Kirillin, End-of-Life Doula with A Peaceful Passing here in Richmond, VA a little over a year ago when she taught a workshop on the grief journey at the Innerwork Center. And then, last summer, I attended my first RVA Death Café which she hosted. (You can read more about my experience here). She is kind and insightful and funny.
What does an End-of-Life Doula do, exactly?
Like a birthing doula celebrates someone who is laboring into life, we labor out of life. Because our culture has lost that knowledge, we no longer know how to labor our last year of life. Whether you’re the person whose doing it or you’re the friends and family of the person.
An End-of-Life Doula can do a lot of different things. One, for the person who has a life limiting illness, to walk through and reflect, and look over their life and think what was this all about? What was the meaning of their life? What have they learned? Is there a legacy project they want to leave behind when they are no longer here? Or, writing a vigil plan, asking how do you want your last days to look? Where do you want to be? What do you want to hear? Who do you want there? How do you want to make it sacred? Are there any culturally or spiritually significant items or rituals that you want involved? It’s really to give people back the control, so they know there is some control they have in end of life.
At the same time, supporting their loved ones, and what they are experiencing, educating them on what they are seeing and normalizing the dying process and then after the death, re-processing the death with the loved ones, because, so often it happens so fast that it helps them unpack that. It’s not just one or two things.
I’d been a nurse for over 20 years, but about ten years in I really saw how we died as a culture, how unprepared we were, and the side effects and symptoms of not being prepared and not acknowledging it and not talking about it are so immensely negative. I wanted to have an impact there.
We are all going to die, there’s no cure for that. So, when it unfolds I want to give people the option of having it unfold on their timeline the way they see it, because it’s their story and they get to end it the way they want and to know that they have autonomy and they have agency over it if they want.
I read an article about someone doing this in Canada, it was in the New York Times and I was like “This is it!” All the years I kept thinking, “Do I want to be a hospice nurse or a chaplain? Or a social worker?” and then I read this article. I called the End-of-Life-Doula and she mentored me. Then I found the End of Life Doula Association (INELDA) who trained me.
How do you suggest people describe you when they know someone else needs your services?
A lot of times I tell people, don’t call me anything. You can say, “I know someone who is trained to support us right where we are in this ambiguous space. There’s a lot of things going, and there’s a lot of things I think we might be missing or forgetting about, and she kind of sees the whole umbrella, do you want to talk to her?” A lot of times, I say just describe me, don’t name me.
I had a woman in her 40s who was dying, and her girlfriends were like, we don’t want to give anymore casseroles. They knew she didn’t need anything else, so, they each pitched in some money and got five sessions with me. That’s a way they could show up for their friend and she got my services for free.
What’s the most rewarding part of your job?
Just showing people that we have another option with how we die in our culture, and that there are options to experience in ways you do have control over. Not everyone wants a birthing doula and not everyone wants a death doula, and I honor that. For those who are looking for more, who are in the “Okay, this is probably my last year of life. What do I do?” and they’re like “Who do I go to? Do I go to a therapist?” But a lot of therapists don’t specialize in end-of-life. It’s seeing someone having that space held for them so they can arrive at those conclusions on their own.
The biggest challenge for me is when people don’t really understand what I do, and a lot of times it’s people who don’t have experience. They’ve never seen someone die who’ve never had to support a close loved one through the dying process. You won’t get it until you get it.
Who tends to reach out more?
The person who is dying or their family or friends. It’s about 50-50. If it’s the person who has the life-limiting illness reaching out, they might have the most amazing support system, and it’s not to negate them. But they think they need more support as we tend to buffer pain for our loved ones, emotionally, spiritual, psychological. To have someone sit opposite you who is empathic and is there with you, but there’s a thin veil of objectivity, is quite a gift.
Or, the family members will contact me, saying a variety of things. “The wheels are coming off the bus and I don’t know what to do.” Or, “I don’t understand, the oncologist says we should come in and get another PET scan or go to hospice? I don’t know which one is best. You have the umbrella, can you help talk us through what our choices are?” Or, “I’m at the end of my rope, I’m tired, we don’t know what to do.” Or, “My dad is dying, he will not talk about it, but my siblings and myself know it’s happening and we need support.”
There have been times when I’ve never ever seen the person who is dying. It’s me meeting with the loved ones and doing the questions for them. Or, I’ve gotten, “My mom is dying, she’s good with it, and I’m not.” It’s normally daughters who reach out, this is the one son. “How do I make this time with my mom beneficial? How do I talk with her? I want organic, deep conversation with my mom.” I’ve had a number of client visits coaching on how to support his mom who is dying.
How can people find out about your services?
It really is word of mouth, either from friends, or hospice knows about me now. A lot of times you have to ask the hospice, and if you ask for an End-of-Life Doula they’ll say, “Yes, here’s Shelby.” But it’s not like they offer me as (an addition to the care). I get it, I’m a different entity, and if you’re working with a nationwide hospice, they haven’t vetted me. I’m not part of say Hospice of VA or Bon Secours. However, a local clinic that deals with neurologic diseases gives my brochure out to almost all of their clients.
Before you enter into hospice, you have to ask, unfortunately. The big question is, “How do I know to ask?” That is a question where, if I compare the birthing doula and the death doula movement, where we were with how we birthed and how far we’ve come, it was from the ground-up. It was from birthing people saying, “This is what I want to do. Get off me, don’t use forceps, I want to be at home.” Demanding it, and saying, “If you don’t give it to me, I’m going to find someone who will.” I see that’s going to happen with death, it’s going to be from the ground up. People hearing about death doulas, and working with death doulas and asking where to find a death doulas.
How does payment work? Do you accept insurance?
Birth doulas can now be paid via an HSA account, but that was only after research proved they decreased maternal mortality and caesarean rates and stuff like that. So, there are a number of research projects going on right now to support the same thing in the End-of-Life Doula space—decreasing ER Visits. Once that comes to fruition, I’m hoping in a couple of years, we can get paid out of HSA accounts. Until that time, I work on a sliding scale, I always have pro-bono cases all the way up to full-pay. I prefer doing packages, that way you can pay for a full package and we don’t have to worry about money again.
I always do a free consultation that’s about 45-minutes to see what (does the person) need from me? Sometimes, the person who is dying or with a terminal illness is the one who is hiring me, sometimes it’s their loved ones. I can ask what is that they need from me and how can I show up. And then I’ll say, “Okay, I think we can do this in five sessions.” We normally sell in sessions of three or five or ten. Every now and then, we have someone who just wants to work an hour with me, but I would say packages are my norm.
What do you wish people knew?
I wish they knew a couple things-- the earlier we come in the more deep work we can do, the more time we have, and you can graduate from us. We have two people who we’ve done all of this beautiful work, and they are still stage IV, but as one them said, “I’m getting done the work of dying so I can just do the work of living.” And two, and this is from feedback I’ve gotten, it’s actually really enjoyable to work with an End-of-Life Doula, because we don’t talk about death, we talk about the life that was lived. We talk about life meaning, we talk about what your life themes are, what did you learn, how did you grow? A lot of times for people who don’t have this dialogue in their life, it becomes so easy to focus on the life that is being lost, the physical abilities that are being lost, what you no longer have control over. Instead we turn around and we look back and talk about what was. A lot of people say it’s so uplifting to have this space and they look forward to these conversations. I wish people knew it is an enjoyable experience to work with an End-of-Life Doula. It’s not about death, it’s about life.
We’re all going to die and working with an EOLD does not expedite it, it makes the time you have left, it offers the ability for it to be more valuable for the person dying and the loved ones.
For the person who is dying, just like birth, that’s natural, it’s what our bodies do. But to be there for the loved ones who are laboring the death and to explain to them what they are seeing and that, this is natural. And some people have never given medicines and hospice comes in and they leave, but being able to come in and see they are grimacing or making sounds and teaching people how to read someone who is dying, supporting them and letting them know they are doing a good job.
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Additional Info:
Learn more about Shelby and support services offered: https://www.apeacefulpassing.info/
More information, resources, podcasts and books about End-of-Life Doulas or to find one to work with in your area: INELDA
The Bereavement Coalition of Central Virginia is also a great grief resource to find therapists, end-of-life doulas, hospice and grief support in the Central VA area.
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