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What Is A Death Doula?
Kacie Gikonyo • 2024-02-06
Dylan Carnahan:Welcome to the Simple Questions Podcast. This is your host, Dylan Carnahan. The question for this episode is, what is a death doula? You will learn in this episode a different perspective on death, different end of life services, and the importance of having a death plan. Our guest has over a decade of experience as a registered nurse, is the founder of the Death Doula School, and is a death doula. I introduce to you Kacie Gikonyo. I am sitting in the car with my mom after having shopped at Costco. When I discuss an article that is death related with her, she brings up the topic of a death doula, which is not something I'm familiar with, and it was immediately something that I just wanted to learn more about. It just seemed rather odd and about a sensitive topic. Therefore, I went home and read some stuff online about it, and that's kind of what's led us to the conversation we're about to have about death doulas or end of life doulas. So that's kind of my very deep exposure to this topic. Kacie, can you share how you became interested or exposed to this profession?
Kacie Gikonyo:Yeah, definitely. I love hearing that your mom kind of brought it up, right? Because when I started doing this, nobody had really heard of a death doula at all. So every time I hear that somebody brought up a death doula or started a conversation about a death doula, it always makes me happy because it happens more and more often nowadays. As far as how I landed in this role, first I'm going to tell you a little bit about what a death doula is, just to help understand a little bit more. So most people have heard of a birthing doula, and a birthing doula helps somebody labor into this world. So a death doula does the same thing just on the opposite end of life. So we work with people who have a terminal diagnosis or who are aging out of this world, and we help them organize critical next steps and really just make it a, I like to say I help people die better. So that's kind of what death doulas do. We help people labor out of this world. It is a profession that is growing at a rapid pace, but it is something that most people haven't heard of like yourself. And how I got into being a death doula. I'm actually a registered nurse as well. And I worked in the field of nursing for a long time. I held many administrative roles, but for the most part, I worked with people who were at or nearing the end of their life. And I was really good at that. Not everybody is able to be good in such heavy and emotional times. So even as a nurse, I kind of positioned myself in such a way that I was always working with people who were kind of at the end of life. But I did work the front lines of COVID as an infection preventionist at a long-term care facility. During that time, I saw so many people die in such a small amount of time. And their deaths were tragic, you know. They were healthy, and then they were all of the sudden sick, and then they were all of the sudden dying. And they were in a facility where, you know, because of the CDC and the rules and trying to keep everybody safe, family members weren't allowed to come in. So, I mean, these people were, you know, dying, but also dying alone. They didn't get to say goodbye to their family. They didn't have people there holding their hands. Some of them, you couldn't even get hospice services on board fast enough. So, I became a little bit hyper-focused with that, with the fact that these people were dying, these deaths that were so ugly. You know, they lived these long, beautiful lives, and now they're dying, just these tragic deaths. And so, I was really focused on trying to do anything I could to make their deaths a little better, even if it was just to be there with them or to hold their hand or to call their family and let them know they're not alone, whatever it is. But COVID is really what kind of helped solidify to me that this is where I'm supposed to help the world. This is how I'm supposed to help the world is at the end of life or in a death situation. So I eventually got laid off from my nursing job, but I knew that I needed to transform this into something different. And so I myself, even being a nurse, I had never heard of a death doula either. So I was just kind of doing some research on the internet, like you said, right? Just kind of looking in what types of jobs can you work with people at the end of life and so forth. And I ended up stumbling upon a death doula. And when I read what a death doula is, somebody who helps people to safely labor out of this world, it was like, oh my gosh, like that's it, this is it. This is what I'm supposed to do. This is what I've already been doing. Like, this is my calling. So I went to school, I trained to be a death doula, and I opened my company like almost immediately after I finished my training program. And it took off pretty quickly. There aren't a lot of death doulas in my area, particularly, I'm in Ohio. When I started, there were no death doulas in my area. So it's not like people are calling off the hook to get the help of a death doula because a lot of people don't even know that that is a thing or that you have this option available. So when I first started my company, the first thing that I really had to do was be loud and noisy and let people know like, hey, here's this option that you have at the end of life. You have somebody local who's doing this. You have this help available to you. And people were really interested in it. There's a lot of times mixed reviews because I'm coming at you pretty hard talking about death. And some people aren't into that and don't want to talk about that or think about that. But I think that the different generations are willing to look at things a little bit differently than maybe we always have in the past. So most of my clients are actually 60 and younger. So, I mean, I can work with people of any age, but most of the people that are seeking me out are people who are younger and have received a cancer diagnosis. And now there's this timeline on their life that they didn't have before. And a lot of times it's complicated. Maybe there's a husband and a wife or children or a whole life that they're gonna end up leaving. And so they just need all of this support around all of that. So that's kind of what I do.
Dylan Carnahan:Well, very, very well said. And really a powerful story. It's unfortunate that the catalyst for that has to be so much death, but I definitely, I think anyone listening can hear the passion in your voice. And kind of the strength it takes to fill that role. And not only that, but to also be a business owner and to step out and kind of, as you said, you've had to be vocal about this. And death is not necessarily something that makes people feel comfortable for the most part. So I want to get to some just some quick facts, some things that are tangible to help contextualize this for us. So what are some services that an end-of-life doula would perform?
Kacie Gikonyo:Yeah, definitely. The easiest way to answer that is that we spend time with the people, but the roundabout answer, most of the things that death doulas do, they are non-medical. So that's important to note first. Hospice is there for everything medical. So death doulas don't replace hospice in any way. We just work alongside of them. But death doulas are there to kind of help people understand their diagnosis, work through their diagnosis, accept their diagnosis, and then plan for everything. So a lot of what people don't realize when it comes to kind of end of life planning is that there's all of these parts and facets to it that most people don't have any idea about until you're kind of in the thick of it or until it's too late to do anything about it. And so the first thing that most death doulas do when they get involved with a client is to really figure out what type of planning do we already have in place and what type of planning do we need to have done. And everybody needs to have planning for the end of their life. So everybody should have a health care power of attorney. Even you as a healthy 20-something-year-old, if something were to tragically happen to you and you couldn't make medical choices for yourself, most people assume, well, they'll just ask my mom. But without that legal document there where your mom is allowed to make choices or your dad or your sister or whoever it is, these things really need to be in place. And especially when I get into a situation where somebody has been given a terminal diagnosis, you never know what's going to happen after that diagnosis, and you never know how long someone's going to have. And so you have to get that planning out of the way, because a lot of times as somebody declines, their cognition declines with it. So there's increased confusion or they're just physically not able to do these things. So the very first thing that death doulas do is just let's make sure we've got all of your planning out of the way. So I always recommend people meet with an estate attorney. Most people do have a will that they've made up, but a lot of times it's very old. You know, we made our will 20 years ago. That's great, but it needs to just be reviewed by an estate attorney. So not only do I kind of help people walk through these plans, but I also have my little black book of helpful people. So if you don't have an estate attorney or the one you worked with is retired and you don't even know who to call, that's perfect. I can give you three people here to call. Go ahead and give them a call, get this reviewed so that we know everything's beautiful, perfect, and in order. And then we also work through advanced directives. So, you know, if your heart were to stop beating, do you want CPR? If you were to need dialysis, would you want dialysis? If you were to need a feeding tube or intubated, you know, are these things that you would want? Are they not things you would want? Once we get through all of the bigger planning, then what we do is really work on a life review, which is just learning about the person. As people are nearing the end of their life, it's just natural for them to remember all of the things that happened in their life, to have all of these memories. And most of them are good, but not even all of them. You know, when you're facing the end of your life, now all of a sudden, maybe you've got these regrets. Like, I thought I had more time. I never did this and I never did that. Or I wish I had a better relationship with this person or whatever it is. So these are things that we kind of work through. We talk about their memories, anything that's bothering them, that's heavy on them. We talk about guilt, shame, and regret. And then also, death doulas work on legacy projects. So they say that each person dies two deaths once when you physically die, and then once when you're spoken of for the last time. So what type of legacy do you want to leave behind for those people that you're leaving behind? I mentioned most of my people are younger, so there's usually people that are being left behind, whether it's a spouse or children or sisters, brothers, whatever that may be. And so we are able, before the person dies, to work together to create a project of types that is something tangible that can be left behind for those that are left behind. So for instance, I had a client who was a poet. She was actually a professor at a university. She taught poetry. She wrote poetry. She loved it. But she had a real long and hard cancer journey where she didn't write poetry for a while because she was very sick. But in her last month, she started telling me that she was hearing her poems again, like I can hear them in my head again, but she was too weak to get them out to write them in any way. So we did it together. She recited all of her poems to me. I recorded them. She was leaving behind children, so her poems were very much so about her children. So we were able to kind of make a book for her son and a book for her daughter of these poems that not only their mom wrote, but also wrote about them or about their life or all of these memories that they had. And then after the person passes away, I'm able to kind of present or give the legacy project to their loved ones. I also help people get help, if that makes sense. So I usually come into this situation before someone is hospice appropriate. So maybe you got a cancer diagnosis, but there's these chemo treatments that we can do and there's some other stuff that we can do. So you're not quite hospice appropriate yet, but you still have this really scary kind of diagnosis looming over you. You could still use a little extra help and support. So that's usually when I come into the picture just to kind of provide a lot of help, guidance, support, make sure plans are in order. But at some point, my clients then end up needing hospice services. You kind of make that transition from doing these treatments to not doing the treatments anymore. And I'm able to really help walk them through that. Hospice is a whole thing about end of life that people are really not educated on. They know that when I'm sick and when I'm dying, I'll call hospice, but do you know what that means to call hospice? Do you know how much support they're going to provide you? Do you know you have your choice in hospice company? There's all of these hospice-related things that people just don't know because we don't talk about it. So another way that I kind of help support my clients is to really help them through that, help them to identify when it's time for hospice. A lot of times people think that you wait until the last days of life to call in hospice, but hospice can provide so much support for up to six months. So when we kind of check all those boxes to where now someone's hospice appropriate, I can kind of help them identify that I think it might be time to give them a call now. And then I can also help connect them with hospice companies in the area, and I can be involved in the interviewing process if they'd like. And then that way, you know, we're all a team, the person themselves, the individual, me and hospice, and we're all kind of working together to make sure that this person dies their best death.
Dylan Carnahan:There is a lot of nuance. It's evident in kind of everything that you said, and I think another good point you brought up was, you know, it's kind of overriding, is this lack of exposure, lack of discussion around these things, which inhibits people's knowledge in how to make informed decisions on this. So it's good to have someone such as yourself that does have that exposure, that can provide that clarity. I think another thing is, you know, you mentioned a couple of things in there, such as just the estate planning or the legacy projects. How do you approach those difficult conversations with that individual and their family?
Kacie Gikonyo:Oh, I have a very... I just have a way about me, is kind of what I'll say. I'm very calm and collective, but I'm also very forward thinking and forward in my speaking as well. So I mean, sometimes when someone gets into a situation where they're nearing the end of their life, everybody wants to tiptoe around talking about that, you know, but that's not really where I'm at because I'm here to help. And in order for me to help, we have to be realistic about what's going on here. I always like to say to choose your heart, right? So it is really, really hard to have conversations with people about death, especially when it's like a loved one, but it's a lot harder when that person dies, and we've not had those conversations. We haven't gotten that planning in place, and now everything's really chaotic. So for me, it's not really so hard for me to have those conversations because that's really what I'm there for. You know, by the time they've brought me on, they're already facing, you know, an uncertain future, and so I'm just kind of here to organize it. You know, let's get these things in place. And I always like to say, you know, doing it is not definitive. We can still do all these things and get these things in place, but still have hope, you know, and if something does change and you don't need these things right now, well, perfect, you know, we got them done for no reason whatsoever. So I just try to keep it calm and lighthearted, but also very, you know, factual and down to business.
Dylan Carnahan:Yeah, this may be more of a personal question for you, but, you know, to no degree to which you've been exposed, but, you know, as someone that's volunteered on the Crisis Text Line, there are some conversations that I've had on there that admittedly I think about occasionally, and I could not imagine developing a relationship with someone and having such a large stake in their care. That's a degree that I can't understand fully, although I know what you're saying. So how do you decompress and kind of navigate this really difficult emotional role?
Kacie Gikonyo:Yeah, so I always tell people that I think I'm a little different than other people are, especially when it comes to things like grief and death, and especially when it comes to working with clients. So I do get so close to my clients, and I get close to their family too, because I'm there to kind of help everyone in the situation, not just that person. And when they do die, there is like a little bit of a hole there, right? Because now that person's missing in my life and even that family, because I'm not spending as much time with them as I was. But for me, my goal and my job and my duty and my life purpose, as far as I'm concerned, is to help people die a better death. So when I get really close to my clients and then they die, in a way, there's a sense of accomplishment for me, because I know that I helped them die better. I know that I was there and that everything went beautiful, and there was all of these wonderful, amazing moments with their family that I was able to kind of facilitate. And so I don't carry it so heavy on me in that way, because it's almost like an accomplishment. I did a good job. You know, they died this beautiful, peaceful, calm death, and their family had these beautiful moments with them before they were gone, and now there's this beautiful legacy project. So, you know, some people who have experienced deaths of a loved one, you know, they'll be like, man, I remember when my dad was dying, and it was so chaotic, and there was this and there was that. You know, people don't usually look back on that moment with fondness, but when you work with somebody like me, I can change that situation and I can change the narrative so that when you do look back at it, like, yeah, it was really sad, but it was also really beautiful. You know, we also did a lot of things to make sure that it was a beautiful transition and that we spent beautiful time together. Another thing that really helps me from not being so, like, sad or taking in too much of the heaviness is that I believe that when somebody dies, I believe we're all energy, and so when somebody dies, their energy just changes into something else, you know, so that person necessarily isn't gone forever. It's just their physical body that's gone. And I always like to believe that a little bit of them stays with me forever, whether that be something that they taught me that I can use with another client going forward or whether it's a beautiful moment that I literally hold in my heart and remember, you know, on repeats these stories that I have that are just incredible. And I always like to think, you know, we don't know what happens after someone dies, right? We don't know what happens to their energy. So what if it's still around? You know, what if I help these people die a better death and somehow their energy is still around me, helping me in return? So these are things that I think of and how I kind of manage to compartmentalize those feelings in such a way that it's not, you know, heavy or depressing or sad for me all the time.
Dylan Carnahan:Yeah, and there's definitely a paradigm shift, right? I think, you know, someone that's not in your profession when they hear some of those things that may give them pause. And again, I think this goes to the whole taboo, you know, there's negative connotations with death and the discomfort there. So, but it makes sense the perspective that you would have to have in your line of work. And it makes sense to kind of the framing of things that you can provide being that you are, there's some level of control that's being gained there, you know, with the planning and all these kind of aspects that can remove some of that turbulence throughout that end of life experience. So I know we've kind of talked about the emotional challenge that you as a doula face. What are some other challenges that death doulas commonly face and how do you navigate them?
Kacie Gikonyo:So, let's see. Sometimes family dynamics can be really tricky. So there can be all kinds of dynamics throughout family, you know, units. And so that is sometimes something that can be difficult to manage because sometimes there's negative conflicts or people that they don't want around or people they do want around or people they haven't talked to or whatever. So sometimes that can get really tricky kind of trying to navigate and maneuver that. I'm a real no-nonsense person. And so, you know, if I'm with a client and their family is kind of arguing or making a fuss or something near them, I mean, I'm just kind of like, you're going to need to take that outside or take that somewhere else. You know, we can't bring that energy here right now. Being a nurse, I'm used to dealing with all kinds of family dynamics and talking people down off of ledges. And this isn't the place for that. So for me, it comes kind of easily. But that is something that a lot of doulas, you know, they face out there is dealing with the drama from the family. Also, there's not such great education out there for death doulas right now. And so there is no death doula training that gives you actual experience with people who are dying. So for me myself, you know, I had experienced probably close to 200 deaths by the time I took my death doula training. But most people have experienced no deaths or one death, you know, maybe their mom or their grandma or somebody. But to really be good at this and excel at this, you have to have all of those different experiences. Everybody dies differently, you know, it doesn't ever look the same twice. So that's a challenge that a lot of death doulas are facing is that they've taken their training, but they kind of moved to are struggling to move forward because they don't have all of the hands on experience that they really need to kind of feel confident in what they're doing.
Dylan Carnahan:Yeah, those are two really interesting points. And I think to the last point you made, I think there's a big distinction between knowing and understanding. Right. And I think ultimately understanding the best way to obtain that is through experience. And as you pointed out, there's all kinds of things within that experience. There's a psychological impact that you can't replicate by doing a web based training or something, you know, or having that moment and feeling your heart rate go up and to kind of see the things that maybe weren't discussed in that training. So I think that's an excellent point, and that can be applied to any and everything, really. And then also, yeah, I think, you know, each new client, I would imagine you have your own family dynamics, which, you know, you can inherit some kind of issues there. And I'm sure that that may be a topic for potentially reconciliation or something within your services as well.
Kacie Gikonyo:Yeah, so I've actually done that before, where, you know, I've started working with a client, and it kind of comes up that there's, you know, a family member that they haven't spoken in many years, and I don't know how they'll take it. And so I do always kind of, for me, I love for people to be able to reconnect if that's possible. And so I'm always open to getting in the middle of it, is what I say. Like, it's up to you if you want to handle that on your own, or if you want me to kind of be the in-between person where I can say, you know, I'm so-and-so's death doula. Here's what we're looking at. You know, they'd love to communicate with you. It is my understanding that most conflicts are based off of miscommunication in some way. You know, you thought this person thought they meant this, and this person, you know, and a lot of things are able to be easily. But some things are not. I mean, sometimes there's some very significant trauma and other things involved where it's not the right thing to do to kind of reintroduce family members. But I do like to encourage that and foster that and help that in any way that I can.
Dylan Carnahan:Now, you mentioned earlier, you spoke a little bit about your perspective, you know, on death. I want to come back to that again, because as you mentioned, you know, you've had a lot of experiences with death prior to entering in this profession. But I want to kind of go back to before you had all those experiences. And can you explain how your perspective on life and death has changed through having all those experiences?
Kacie Gikonyo:Yeah, that's a really good question. So the biggest thing that I can tell you is that being around all of those deaths, it really makes you face your own mortality, right? So like I say, death doesn't discriminate. You have no idea when your time is going to come. And because of that, it makes me or seeing that head on all of the time, it makes me look at my life differently. And when I was a nurse and when I was experiencing all of those deaths, I don't know that it necessarily hit me then until I started being a death doula and being more just really wholly and fully involved in the whole situation. And also working with a lot of people who were younger, who were very healthy marathon runners, you know, never smoked, never drank. And now at 40 something, they're dying from this terrible cancer. So that really helps me to put my mortality and everyone else's into perspective, right? We have absolutely no idea how long we're here. So for me, that's helped me to do a lot of things. First of all, is to draw boundaries about what I am willing to accept and what I'm not willing to accept, what's important to me, what's not important to me. I will admit I was a workaholic for, you know, a long part of my life, but in doing so, I missed precious time with my oldest child as he was growing. So now, you know, I'm able to see that what should really be important in life, right? After sitting with so many people who are on their deathbed, I can tell you that zero people talk about their job and how happy they are that they worked so hard or that they stayed late or that they worked overtime. That's nothing that anyone ever brings up, you know? It's always the memories of the times you spent with your children or your vacations or your loved one, your husband, your wife. So for me, it really helped me to live my life more meaningfully. So everything that I do, I see the beauty in it, and I make sure that it's meaningful. You know, even something as silly as like taking a walk at the park on a beautiful day, there is so much to take in there that you're so lucky to have, you know, the smell of the clean air, the beautiful blue sky, the sun on your skin, the birds, like all of it, you know? Whereas before it was like I would take stuff like that for granted. Now I see it all with a different light. And also, what was the second part of that? Oh, I just make sure to make the memories, I guess, is what I want to say, because that's what you're remembering at the end of your life, is all of these beautiful memories that you've made. So make the memories, you know, don't work your whole entire life away, because when you're on your deathbed, that's not what's going to be important to you. The number one biggest deathbed regret that everybody always says is I wish I worked less and, you know, played more or traveled more or spent more time with my kids. Whatever it is, it always starts with, I wish I worked less and did more of this. And so it's really easy for me to put that in perspective, and owning my own business really gives me the capability to make sure that I have a beautiful work-life balance so I can work and bring meaningful helpfulness to the world, but at the same time, make it to my kids' school for all of their school functions, or take a day off if I got a kid home from school sick, or whatever it is. So those are my biggest things that have changed with kind of facing death the way that I do.
Dylan Carnahan:I really appreciate you sharing that perspective, because again, it goes back. The amount of experiences you have had that have shaped that, you won't, you know, a layman such as myself, I'm not going to experience something like that. So I really appreciate you sharing that perspective. With people that haven't been as informed pertaining to death. So what resources do you recommend for those interested in learning more about death doula services?
Kacie Gikonyo:Absolutely. There are, I mean, right now, there's a lot of death doulas out there. So if you're interested in finding a death doula in your area, while it's not the most professional response, I always say to Google it because that's going to pull up everybody who's nearest to you. Death doulas do provide virtual and in-person services. So if you want somebody to physically be there with you, then definitely you can find somebody local. But, you know, if you can do it virtually, that's possible with anybody all over the place. There are a lot of people who are interested in becoming a death doula. So I get it's a mixed bag. Half of the people that reach out to me are looking for a death doula, and the other half are trying to become a death doula. So if you're looking to become a death doula, you know, there's quite a few training programs out there, but I'm actually opening my own death doula school in the spring. And I'm hoping that my school will be a little more comprehensive and complete than some of the other ones out there because I have all of this experience that I can share. But I also my I will have virtual and in-person courses, and my in-person courses will have hands-on experience with people at various stages of death and dying. So there's a big gap there missing for most death doulas who've taken a program because they don't have that experience. So yeah, Google. Google is my best answer. Google to find a death doula near you or anyone who's listening. You could always reach out to me, and I can try to help find somebody near you. I have I created the Death Doula Collective, which is a collective of death doulas from all over the country. And we just work together to support each other and empower each other and help each other grow so that we all kind of grow together as a profession as opposed to one or two people making it big and the rest of us struggling. But because of that, I have death doulas that I'm connected with all over the world, but definitely all over the country. So if you're interested in reaching out to me for any reason whatsoever, I'm at Death Doula Kacie on all of social medias, TikTok, YouTube, Facebook, Instagram, even LinkedIn, I'm there. So I'm easy to get to. My website is deathdoulakacie.com, and that can link you to my email. So anyone who's interested and can't seem to find what they're looking for, if you reach out to me, I'd love to help.
Dylan Carnahan:Yeah, and I'll make sure that all of those resources that you mentioned are included in the show notes for our listeners to look at. Kind of last thing here, you know, and going back to kind of the perspective that you have on life and death and how that's changed, you know, I think that's actionable that people can take away from this as well. You know, based on your experience, in what ways can someone support people in the grieving process for families after they've lost a loved one?
Kacie Gikonyo:There's not really an easy answer for supporting someone who's lost a loved one. That's kind of what I always say. Everybody grieves in their own way, and everybody's looking for that magic phrase that they can say to somebody that's going to make them feel better, but there just aren't any words that are going to make them feel better. I always say to be there for them, for whatever it is that they want, whatever it is that they need, and to just give love. But also, don't be overbearing, and don't think that there is some magical phrase that you can say to make them feel better, because there really isn't anything. Something that most people don't know, though, is that Hospice offers free bereavement counseling for people for one whole year after they've lost a loved one. And Hospice always tells people this, but I think you don't hear it when your person's still alive. You need to hear it after your person's gone. So I also, you know, I love to kind of push people in that direction to just go get some free grief counseling, because honestly, what could it hurt? You know, it can't really make things, can't make things any worse, so give it a shot.
Dylan Carnahan:Kacie, thank you so much for sharing your knowledge and time today. This has been, this is a fascinating topic, and I'm sure people really appreciate the role that you have filled in their lives, as well as a lot of the information that you're sharing with others.
Kacie Gikonyo:Absolutely. Thanks so much for having me. I appreciate being here.
Dylan Carnahan:That wraps up our conversation with Kacie. We talked about legacy projects, how some people want to reconnect before passing on, and how people handle their emotions as a death doula. Go to this episode's show notes to see any resources Kacie mentioned during our episode. And lastly, subscribe to the Simple Questions Podcast to get notified when our latest episodes are released. Thank you for listening, and remember to keep asking questions.