Kacie Gikonyo is a registered nurse, death doula, and educator with over 12 years of experience in end-of-life care. She is the founder of Death Doula School, offering training for death doulas, and leads The Death Doula Collective, a national network for practitioners in the field. Kacie’s mission is to demystify death and provide compassionate support to individuals and their families. In this episode, Kacie and I discuss how doulas, hospice teams, and the medical system can collaborate effectively, what doulas need to know, and how families can benefit from their expertise. We also delve into the “hot topic” of certification for doulas. What do you envision the future of death care could look like?

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Transcript:

DianerHullet: Hi, I am Diane Hullet, and you’re listening to the Best Life Best Death podcast. Today I am talking with Casey coo, and I’m so excited to have her here. We’ve been trying to make this happen for, oh, I don’t know, two years. We’ve bouncing back and forth on email, so welcome Casey. Yes, welcome. Thank you for having me.

I’m so glad to be here. Yeah, this is great. Casey’s an rn, a death doula, and the founder of the Death Doula School. And you know, recently you’ve been having a spate of publicity, which I just love because it puts the term death doula in front of all kinds of places. So we’re gonna talk about that. We’re gonna talk about how you got into this and you know, what you see as kind of the future of death, doulas among other things.

So yeah, so tell us. You know, how did you get into this work and why does it matter? 

Kacie Gikonyo: Definitely such a good question. You know, if we go way back, honestly, from a really young age, I’ve just kind of always been fascinated by death. My grandma lived by a a cemetery, like walking distance, and that’s what I did for fun as a kid all of the time.

I would walk to the cemetery. I love to like read the gravestones and see, you know, the lifespans going, the maza. So I would always be trying to get my friends to go there with me and they were like, you are nuts, right? Like, who actually wants. To go do this. But that was fun for me. But then, you know, as I got older, I went into healthcare and I got into nursing and I worked with people who are at or nearing the end of their life.

A lot of times when you hear that, people will think, oh, she probably worked in hospice, but I didn’t. I actually worked in long-term care and long-term care. And hospice actually worked beautifully hand in hand together to help people walk through the end of their life. So, you know, working in long-term care.

We would work with people for years, months, you know, for a really long time I worked in facilities, you know, that were county facilities where there were people that didn’t have any other loved ones. So you essentially become their family members, you know? So this was my kind of first, you know, inside.

Scoop into what it was like to walk somebody through the end of their life. But not only that, then being able to identify as a nurse. You know, I think this person might be ready for hospice and then approaching the doctor and saying like, Hey, here’s what I’m seeing and I really think hospice could be helpful here.

And then just coordinating all of that. So, you know, when you think of my nursing career and that aspect. It’s like, oh man. Kind of makes sense how she would end up here. I obviously saw, you know, many deaths throughout my nursing career, but I did work the front lines of Covid. I and saw a ton of deaths in a very small amount of time.

And those deaths were obviously, and of course, particularly tragic. You know, I was working in a long-term care facility in Philadelphia and. You know, CD, C guidelines, no one was allowed in. And so it was the worst thing in the world to have to call somebody and let them know, you know, not only does your person have covid, but now it looks like they’re dying and you can’t come see them.

You can’t say goodbye and, and you don’t even. Those people didn’t know that the last time they saw their person would be the last time. You know, everything was so crazy at that time. So I became hyper-focused on trying to help these people die better. ’cause they were dying alone. They were dying, scared and terrified.

That wasn’t really what I was supposed to be doing. I was supposed to be nursing. So it was kind of like, in this moment I realized, you know, I love everything that nursing has taught me along the way, but I feel like I’m, I’m meant for more. I feel like I’m meant to be this person here holding their hand and trying to help them not to be scared and feel alone.

And that’s what led me to the role of the death doula. So that’s kind of how I got here. 

DianerHullet: Wow. That’s, I mean, COVID really, I feel like I’m gonna state the obvious here, which as I like to say, my children say is my specialty, stating the obvious. But like Covid put death on the front burner in a culture.

I’m talking about the US culture and dominant US culture had kind of said, let’s not go there. Let’s not talk about death. That’s, you know, handled by the professionals over here on the side and we don’t really talk about it. And covid. I feel like it just put it in our faces in such a big way. So it was a really powerful time to shift into this kind of world.

So then did, and then, I don’t know who, I should know this, but I don’t know who you did your training with. Did you train with an el? So I went. I 

Kacie Gikonyo: did, yeah. I went through an elda. So right away I started Googling like, what could I do in the end of life? I had never heard of a death do lot, even as a nurse who had worked, you know, with people at the end of life for so long, I had never heard that term either.

So I was like, how can I help? And I knew I didn’t wanna do hospice, not ’cause I don’t like hospice, but because I was looking to kind of get out of the nursing role and into more of a. Now that I know the word doula type role, but at the time I didn’t know that word. So anyways, I just started Googling and that’s where I found end of life doulas.

And I read what they do, you know, just like a birthing doula helps somebody labor in a death doula helps somebody labor out. And it was like, ugh. This is me. This is who I am. Absolutely. And of course, Googling leads you straight to an elda, you know? Absolutely. The international end of life Doula Alliance.

Are you kidding me? So great. Like I enrolled right away, got into the first course that I could and it was interesting for me as a nurse, ’cause I had experienced hundreds of deaths. I mean, I had called time of death on hundreds of people already in my life. And so it was really crazy to think of what, like what is a program about death gonna teach me, you know?

But it was great. They taught me. A whole different side of death. You know, when you work with death as a nurse, it is very mechanical, you know, this is, it’s a different type of situation than kind of doing it as a doula. So it was great to go there and, and have them really kind of open my eyes to like this huge spiritual part of it.

And also I. I guess maybe bring to the forefront of my attention, you know, as a nurse, you’re so busy and you have to do this, and you have to do this, and you have to do this, but as a doula you don’t have to do that. You just get to be there. And so like that for me was like, wait, so I just get to be there?

You know? And then also understanding, ’cause again, I was coming from the world of healthcare, but understanding that you are in charge of how many people you work with. I mean, that for me was like, that’s one of my, my. Biggest problems with nursing is when you are torn between giving someone the compassion and care and time that they need and the other 30 people who are depending on you at the same time.

You know, that’s difficult, but being able to kind of determine that on your own, like, this is how many people I can give my everything to at the same time without, you know, being burnt out. That was really cool too. So I did, I went to Nelda and that’s where I got my training. 

DianerHullet: So awesome. Say, say again.

Nice and slow for people who are listening, like some people who listen are doulas are nurses, but some are just lay folks. Say what Inelda is again, just so they can hear that. Oh, I know I said it so fast. Inelda is the international end of life Doula 

Kacie Gikonyo: Alliance. I. Right? 

DianerHullet: Yes. Fabulous. Do you know where they’re based out of?

I can’t remember. 

Kacie Gikonyo: They do a touch time. I mean, they’re just very active for sure, and I have no idea. And they even have a lot of like in-person things too, but kind of all over the place. So I don’t even have any idea where they’re actually like located, located. 

DianerHullet: So super great hub of information and trainings and all kinds of things.

And then you launch the death doula school, which obviously is training doulas. Do you, does your death doula school take place in a location or online, or how do you arrange that? I. 

Kacie Gikonyo: So debt to school right now is all online. There are two different types of trainings available. I have a learn at your own PACE version for those of us who are kind of maybe working full time and juggling a family, but still wanting to take in this information, you know, when it’s convenient for them.

So I created the self-paced version first. And it was really, really popular, but, you know, some feedback that I got was that there were some people who would love a live course as well. So I did this year I’m starting a live online course, you know, where it’s more live cohort where, you know, we’re there together, we meet once a week for 12 weeks and kind of do it that way, that way, you know, I like to keep the classes small because I wanna be able to provide just individualized education and support.

For me, something that I think is really important is really, you know, teaching the deaf doula role. Of course, that’s, that’s super important, but also helping people to understand how to be successful in this role. I think that’s where a lot of doulas struggle right now is, you know, I have this education, I have this calling, I have this passion.

What do I do with it? You know, like, what, what do I do now? What do I do next? And so that’s kind of the goal of Death Doula School is not only to teach you what is a death doula but to teach you how to actually be successful in this work. Also with my nursing background, you know, there’s a lot of things that I think are really important for a doula to know.

So my school kind of just includes a little bit more of a comprehensive curriculum than others. And I can give you a for instance, you know. Obviously everything. What does the death doula, what does the death doula do? All of that stuff. But you know, I think it’s important for death doulas to know and understand the difference between long-term care, memory care, skilled care, home care, and hospice.

What are all of those things and what are the differences between those things? Because as a doula, I’ve been in a situation before. Where, you know, I was working with a client who had Alzheimer’s and his primary caregiver was his wife, and things became really unsafe at home. And I really needed to be able to carefully help her to understand that there are safer places for him and for her, because she shouldn’t have been taking care of him in this, in this, you know, situation anyway.

But, you know, it dawned on me in that moment that, you know, a lot of doulas don’t have that education. And had I have not known that. What would’ve happened in this situation, you know, who knows? So I kind of go above and beyond just teaching way more things that I think doulas should know. Hospice.

I just think it is so, so, so important that doulas know that hospice is our friend and that hospice knows that we are their friend. And so for me, that’s a big thing that I focus on a lot is how you can get in front of hospice and let them know, hi, I, I advocate for you. I’m a friendly, I’m not trying to.

Do you know what you do or take clients from you? You know, if anything, I’m trying to help guide clients to you, you know, because there are a lot of misunderstandings and misbeliefs about hospice. So again, that’s why I provide a ton of education about everything hospice, what hospice is, what hospice does.

Because if we can get in before they’re hospice appropriate, or even before they accept hospice, you know, sometimes they’re hospice appropriate for a long time, but they’re not ready to like, you know, make that call. But I mean, I get in there right away and I really help to get them to understand what hospice is.

You know, everyone, oh, we’ll, we’ll bring hospice in and this’ll happen and that’ll happen. It’s like, let, let me really explain to you exactly what it looks like when hospice gets in here. You know, they’ll give you this. People think that, you know, hospice gives you medicine, but you’re forced to take this medicine.

Like actually, they’ll give you this medicine and you don’t ever have to touch it. It’s just a, if you want it, it’s completely up to you. You know, so just kind of explaining those things. People are like, oh, wow. And coming from somebody who’s working in a doula role, I don’t. Come from the healthcare system.

So sometimes people are like, okay, you know, she’s obviously not benefiting anything by telling me to go on hospice. So, you know, maybe this is some real, some real help. So, you know, I, I teach a whole lot about hospice and how we can really help and how much of they help. I teach a lot about the medical aspects of death and dying as well.

You know, we know that death is a human experience, not a medical one. But you know, you are going through a disease process and your organs are slowly shutting down. And I think that a doula who is educated on that and knowledgeable about all of those things and what those things look like and how to best support the family through that is just gonna be, you know, so much more helpful than a doula who’s kind of missing that little bit of education.

And then I also provide a ton of education about business. You know, how to run a business. Right now that’s, you know, for us doulas, that’s how we’re gonna make money. You gotta open a business. And I was really lacking that when I kind of got into this. And that was my big stopping point. You know, how do I move forward?

And I had to really do a lot of diving and, you know, seeking additional help to learn these things. And so for me, I think it’s important that all of that be included in your. Generalized education like here. At minimum, you’ve gotten all of these things, and also self-care coming from the healthcare world.

That was something that I had to learn really, really a lot, was self-care and compassion fatigue, and how to appropriately take care of myself. Because if I don’t, then I can’t appropriately take care of everybody else too. So I mean, I have a whole module really focusing on self-care and how to best take care of yourself in this type of situation.

So anyways, that’s kind of, you know, the ins and outs of death. Doula school, I try to be overly overeducate everybody about everything so that when you’re in any situation, you have more education than you need, as opposed to being like, oh my gosh, I don’t know what to do here. 

DianerHullet: There’s so much to all that Casey.

I think it’s so important, as you said, understanding different diseases and literally how you shut down physically with different diseases and this intersection of doulas and hospice, I think is so important. People often ask about that, and I think what you’ve brought up about the misconceptions of hospice is so interesting.

I, I find it fascinating to talk with people who say, you know, hospice killed my dad. Right. And they say it just like that Hospice killed my dad. My dad was doing okay, and then hospice got involved and now he’s dead. And there’s this, it’s, it strikes me as just this wild denial that dad was dying in the first place.

And so somehow hospice gave him a little morphine and that that sent him over the edge. People die of their disease process, or they die of their body shutting down from old age and frailty. Hospice comes in with meds, as you said, which are optional to take in order to make that a peaceful process, it, it does not hasten death, but people relax and sometimes that brings death.

So I just think that’s a super interesting misconception and I love that you’re saying that. Doulas can play a role in supporting that and both educating about it and being knowledgeable themselves and bringing that connection. But I do, there is this like heartbreaking thing to me, and you started out, as you said, in these rural county kind of places, these places where people did not have money, did not have family, they’re not hiring a doula.

And I think that what doulas and hospice can bring you know, it’s, it’s such a discrepancy in terms of economics and who can afford this kind of care and support. Definitely. 

Kacie Gikonyo: You know, I, I. I believe that the future of death care will include doulas for everybody. I think it’s just a matter of getting everybody to understand, A, that we’re here, that we exist, and B, what we do.

You know, people hear the word and it’s like, I, I don’t, everyone’s afraid of death, you know? So you hear the word and you’re like, death. What is that? I don’t know what they are, what they do. Let me explain it to you. ’cause it’s beautiful and I’ll make you cry. I’ll make you cry beautiful tears by explaining to you what we do.

And then you’ll be like, e every single person in the world needs this. You know? So I do believe that whether it’s five years, 10 years, 20 years down the road, that death care will look like that and people will have doulas. And you know, right now, only a certain percentage of people can afford us, like you mentioned.

But I do believe that that will change as more and more people become aware of us and what we do. Part of what I’m passionate about is integrating us into the medical system. And not only that, but educating the medical system about death and dying. You know, you go to med school, you go to nursing school, and you receive no education about death and dying.

And so you know, doctors themselves, they’re very educated about trauma deaths, traumatic deaths, s gunshot wounds, car accidents. Things like that. They see that stuff all the time. What they don’t see and what they don’t necessarily understand is a natural death. Somebody laboring out of life for, you know, a week, two weeks, or even that two or three month period before there, you know where you can tell we’re getting there, but we’re not there yet.

A lot of times doctors can’t even identify that only because they’ve never been trained and also because there’s this stigma in healthcare where. We’re supposed to save people, you know? And so sometimes there’s this feeling of I can’t give up on them, but like sometimes you have to, you have to flip that switch.

Every single person is going to die, and you absolutely cannot save every single person. So you can do your best until a point. But then at that point, we can’t torture them to death. We have to. Let’s let them be comfortable. Let’s help them to understand where they’re at. You know, that’s a huge thing that.

In the healthcare system, if the healthcare providers themselves don’t understand, hey, we’re probably a month or two away from death, neither is that person, you know, they need somebody there to help them understand, here’s what we’re looking at and what do you want this to look like? You know, your last couple months of life, do you wanna spend it?

Here in the hospital doing every trial that you can do? Or do you have bigger dreams for what you want the, the rest of your life to look like? So, you know, I believe that the more I rattle cages and the more I get in there and the more I work hard to get into the medical system and to get them to understand who we are and what we do, the more that this is just gonna grow, grow, grow exponentially.

DianerHullet: I love Js Park. I’m pretty sure it was at the end. Well, conference in 2024 had this beautiful phrase where he said, we have to guide people to relocate hope, moving Hope from being about cure and save, as you say, to being about hope for a calm death surrounded by loved ones. If there are loved ones to be surrounded by, are they there?

Are they present? Can they take that in? And what a gift that could be. But we have to relocate hope and make that about a different trajectory than saving. Right? Yeah. That, that is somehow the enemy. Well, so, okay, so. You know, hot topic in the doula world right now is certification or accreditation, right?

So doulas right now do not have a certification. And to me, this is sort of like massage therapists. Like originally massage therapists did their thing. There wasn’t a certification, and then certification came into being a different states I think probably have different levels, but this hot topic in the doula world is.

Should things be accredited, what would that look like? What would certification by some national board be? So you’ve gotten kind of involved in that. What’s your, what’s your take on the pros and cons of that? I will 

Kacie Gikonyo: be so honest. I am on the board and working towards that, but I understand the pros and cons of both, so I don’t want people to think that I’m kind of one sided in that because I absolutely can see the cons of that, especially coming from the healthcare world.

I believe that. The best way to integrate us into the medical system and the healthcare world is for us to have some type of certification or board. And that is coming from the horse’s mouth. I mean, I’ve been educating at hospitals and and stuff around here and that’s what hospices even say. You know, we’ve been told not to mess with death doulas ’cause there is no board, there is no certification.

And that’s what the hospitals and the doctors are saying too. So I do believe that fighting. Some type of standardization, some scope of practice, some curriculum standards, some accreditation. That is the road to us being, you know, that end of life care that I picture in the future. Now, the National Doula Certification Board, what they started doing is they’re doing that for birthing doulas, ’cause birthing doulas, similar to like massage therapists like you were mentioning.

There was n nothing like that for them either. But now that’s what they’re moving towards. So now you know the National Doula Certification Board, they are, they are in charge of birthing doulas and they are accrediting birthing doula programs. I. It started by a couple nurses who worked in labor and delivery and then transitioned into being doulas, which is what kind of drew us together in the first place.

Like, Hey, I did that too, just on the other end of life. You know? And that’s just kind of their goal is to, you know, develop standard of care and get these, programs accredited and all of that. So anyways, they’re doing that all for the birthing world. And so it’s my goal to kind of bring that over to the death world too.

Like I said, I do see the cons of that. You know, it almost feels like when you bring a board involved I don’t know, it makes it like I. Political in some type of way or something. You know, where someone’s gonna be saying, this is how many people you have to take on, and, and there’s gonna be all these guidelines.

You know, that’s where healthcare fails a lot of people is with all of these strict and ridiculous guidelines. And so it is my goal and hope and as a member sitting on the board to make sure that these things don’t happen because. I don’t want that anymore than the next person does. And so my hope is that by getting in front of this, I can protect us in such a way that hopefully we don’t end up in such a bad situation.

So, you know, I do see the pros and cons of both, but I do honestly believe that having a board and having accredited programs is the way of the future for, for all doulas. 

DianerHullet: Interesting. Yeah. And that it allows for that validation, so to speak, by the medical system. I think if the goal is to be supporting and supportive of hospice and medical programs, then that’s probably gotta happen and I.

I guess the argument on the other side would be, well, maybe we don’t wanna be part of the medical system. Right. I, I think people might say that. So, super interesting. Well, I I can’t wait to see where that all goes. And, and so the board is the National Doula Certification Board, is that what it’s called? 

Kacie Gikonyo: I.

Yes. And my understanding is the way that they’re doing it now for the doulas is like, you don’t have to be board certified. You can work as a doula. And so I don’t wanna work in the medical system, you know, that’s not important for me. I wanna do my own thing. So I like that too, because I don’t want to force everybody into something that they don’t wanna be into, you know?

So that’s kind of my hope too, is that if you wanna be board certified, perfect, here’s how you have to do it. But if you kind of wanna be able to just do your own thing on the side and not. You know, be a part of the medical system and whatever else, then hopefully that will still be available for people so that they have the choice to do whatever they want.

DianerHullet: Right. That’s actually kind of interesting ’cause I could like a spectrum of doulas that work in different ways. So a private doula working with a family perhaps in a very you know, with some spiritual components and some ritual components and kind of a very specific depth of family work is different than a doula who’s sporting.

Deaths that are happening around an ICU and there are different needs and there are different you know, qualifications maybe for that. Yeah. Super interesting. Well, so you’re, you’re a little busy, Casey because you’re like, you’re like a little bit, we haven’t, 

Kacie Gikonyo: we haven’t even started the half of that.

I’m in the middle of Bright in the book. I’ve got all this stuff going on. Right. But yes. Right. So a lot going on. 

DianerHullet: So cool. So you recently were in a People Magazine article. How did that come about? That’s so awesome. Oh man. 

Kacie Gikonyo: So this is crazy and one of the biggest things that I stress to a lot of my doulas is that you have no idea how much social media will bring you.

The people Magazine reporter had been following my TikTok for years, and obviously unbeknownst to me, I have no idea. You don’t know who’s following you or what they do for that matter. And she just reached out one day and she was like, listen, like I’ve been following you forever and I really love your content and I would love to do a story about this.

I think it could be big, like, are you down? Which I thought was hilarious. ’cause who says no? You know, who’s like, Ooh, people, people magazine? I don’t think so. Like, are you kidding me? Of course I’m down. Like, of course. So that was just kind of. Awesome. And a lot of the media that I get comes from social media.

You know, I, I’m a signed author with Josie Bath Bass publish company, and they found me from my Instagram. One of their workers had been following me on Instagram, so I. You know, it’s free advertising and it’s a great way for those of us who are in this death positive movement. You know, ’cause my social media has a lot of different, you know, points to it.

I am educating, I love to educate people about death and dying. There’s just this generalized need for education about everything, about hospice, about death and dying. But then also trying to, you know, get people to understand, here’s debt to us. Well, if you wanna be a debt, you can go there too. So there’s just kind of this large depth of people that really follow me, and it’s crazy how many people come from that.

So anyways, that’s how the People Magazine thing came about from TikTok. 

DianerHullet: It’s so, it’s so interesting and, and you know, as, as, as I’ve observed it, I think it’s interesting that young people are having a different relationship to death. And part of that is I think that they have experienced more, I don’t know if this is accurate, but I’m just gonna say it like this.

I experienced that people in their twenties have more experience with difficult things like overdose and suicide than I did in my era of being in my twenties. I’m now 59. And so they just have a different relationship to it. And I, and I’m bringing that up in part because they’re the ones on TikTok, social media.

Mm-hmm. Follow these things. So people that I work with who are in their. Seventies didn’t necessarily find me or find you through social media, right? But they’re us through articles or maybe through LinkedIn or maybe through Facebook. And so there’s this wide range of what’s out there to tap into if you’re interested in getting this information, whether you’re in your twenties or your seventies or eighties.

And those generations have really different ways of grappling with these questions and with getting information. So. I love that. You know, you’re just out there kind of, you’re like on all the bat channels, you know, you’re like just beaming the bat channel, you know, mission out there to get the word out about how we can do death better as my friend Sarah Kerr likes to say.

So. Yes, absolutely. Casey, how can people find out more about you? And this episode is going up in April, 2025 and you’ve got a live death doula school coming up. So tell us a little about that and how people can find out more. 

Kacie Gikonyo: If anyone’s interested in becoming a death doula, I have my live cohort coming up.

It’ll start in April and it is now enrolling. I do keep the classes small, and so there’s. Only a handful of spots still available. But you know, if you wanna snag a spot, you can find me pretty much anywhere. If you go to death doula casey.com, there’s information there about it. Or you can find me at death Doula, Casey, on any social media platform, whichever one is your favorite.

You can email me Casey, at Do Doula, Casey. If you do follow me already on a social platform, don’t hesitate to reach out because I am accessible and I answer every single message that I get. So, you know, it might not be within a few hours, but I’ll get back to you at some point. And I’m really happy to just help anybody or direct anybody or even just answer questions.

If you’re wondering like, I don’t know, could I do this? Could this be for me? Like, don’t hesitate to reach out. You can even just Google me. I’m pretty easy to find at this point. 

DianerHullet: Awesome, Casey. Well, thanks so much. You’ve been listening to the Best Life Best Death podcast, and as always, you can find out more about the work I do at Best Life.

Best death.com. Thanks for listening.