Episode 223: What is an End of Life Doula? Michelle Kolling Interview Part 1

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Charlotte Bayala: Thank you, Michelle, for being here. I really appreciate that you've taken the time to have this conversation with me. I've been looking forward to it. Why don't you tell me a little bit about yourself and 

Michelle Kolling: what you do. Yeah, thanks Charlotte. I'm really excited for this conversation too. , I am an end of life doula.

I'm a grief coach, and a death educator. So what's an end-of-life doula? Everyone always wants to know. Um, we provide, I provide, physical, practical, um, emotional and, spiritual support, for those who are dying and their families and caregivers. Okay. So. Practically, it means I help with logistics.

I help, them get their space set up, help them, um, transition into hospice, which can be really difficult. , I can help them. Um, get processes in place that make things easier. Um, and then the emotional and spiritual support, it's really about having somebody there who is comfortable talking about death.

Um, comfortable being with death. Um, something that most people are really uncomfortable with and don't talk about until it's absolutely necessary. Right. So, think of it like, a birth doula. I think a lot of people now understand what a birth doula is. Mm-hmm. , and it's that preparation and planning to get ready for a birth.

Yeah. And, Same, but just with the other end of life. Um, it often comes at a time after a long illness when everyone is really exhausted, and now it's time for hospice. Um, and it's a whole, a whole another set of rules say, and it can be just really, um, really a difficult time. 

Charlotte Bayala: Yeah. It's something that is difficult for someone to be able to come to terms with needing.

Right. if someone was interested in the possibility of using a death doula or an end-of-life doula, uh, When is the optimal time to reach out or to do the research to find someone that might fit for 

Michelle Kolling: them? Yeah, that's a really good question. And again, likening it back to, um, a birth doula, you wouldn't wait until

 and I know even before I said, you know, once hostess is on board, um, but really once you receive that, that diagnosis, that difficult, difficult diagnosis, mortality is of course on your mind, and, to hire somebody. Or to find that person early. Um, is what we as doulas always want. It doesn't go that way typically.

Yeah, and that's okay too. Um, but just to have somebody to help you. Figure out what's important to you. Now, you know, when, when that diagnosis comes, all of a sudden, all those normal stressors seem a little silly sometimes. Um, there's still a reality though. You still have to take care of all those things.

 but. There's a flip that is switched often that I see, um, and an opening, and things are kind of upside down for people and just to help them navigate this new world. and this new way of thinking, this new way of being, um, and how to, how to help people protect their energy for what's most important now.

Charlotte Bayala: Yeah, I think that's an important part of what you do. Uh, a lot of people might think, well, if this is, we're, we're nearing the end of life and now I have to think about hospice. Those are all the important things to do. To the majority of the time to help the person who is ill, Um, and it's coming from a medical background. but finding the energy and being able to hold on to the energy that you would like to have in order to make memories still to spend time doing the things that actually will matter in the end. I don't know that a lot of people feel like there's There's a possibility of that happening. I don't know that I've ever heard someone say, Yeah, my wife was put in hospice, and I reached out to someone to help me go through the process, um, because I wanted to be able to spend more quality time, right?

Because our brains go into this, uh, place where we're working off of stress, and usually problem-solving doesn't happen well. And all of the energy is trying to figure out what we need to do to hold on to make things not progress, even though they are going to. And I feel like having someone to help you say, okay, wait a minute, is this really important?

Or what is, what would you in the end, when you look back at this time, what do you want to be able to say you were able to do? So that's, so that's something that you help guide people through then. 

Michelle Kolling: Absolutely. And I think, yeah, as caregivers, you get so caught up in the medical stuff and doing everything right.

You know, you're, you take off that wife hat or that mother hat or whatever the caregiver relationship was before. And now your caregiver, now your nurse, now your project manager. And wait a minute, I'm still a wife and I just want to love my person. And so, yes, that's something that I do, all the time and I think it's, I can be objective, you know, I'm not in it.

I can see, see things that you can't see or what are those blind spots? And often with the person who is ill, the one who is dying. They are worried about the caregiver and making their life easier, their wife, their husband, whoever it is. And the caregiver is trying to make everything easier for the person who is dying.

Um, and how can they, how, you know, I always put the person who was dying in the center. And sometimes that's the first time ever in their life that it's like, this is about you now, right? You know, You don't you only get to do this once. So, um, what do you want your experience to be? And 

you're not dead yet. You know, sometimes people get that diagnosis or they sign on to hospice and they're like, well, I'm dead. You're still living. Yeah. Um, so I really want people to live as fully as they can for as long as they can, and to help, especially that husband and wife, whatever that caregiver relationship is, give them the space to just love their person as long as they can.

Yeah. And, and to let go of some of that other stuff or offload it or outsource it, um, because that's not the stuff that you're, you're going to regret, you know, um, 

Charlotte Bayala: and I just, yeah. That's an important thing to be able to have someone help you with because, everyone else that's around you is most likely in the same mindset that you are in, uh, trying to prepare and get everything ready and, and skipping over that.

That time that you have left with the person who's ill, so it's really good to know that if someone is being told, you know, your loved one, the next thing that really makes sense is hospice for them to know, okay, well, hospice is what is needed medically, um, and will help me a lot in caring for the person that I'm living with or caring for, but to know also there's this other service that I can reach out to gain that will help me just emotionally and spiritually, not just me, but the person I'm caring for so that we can have this, you know, I don't want to use the word beautiful because I don't think people always see it as that way, but I think it's possible, right?

To make the end of life a beautiful experience, um, for everyone involved, but in a way that honors The wishes of the person dying and allowing them to understand that this is, this is my death and giving them the ability to advocate for the things that they would really like to have, um, you know, that is something above and beyond hospice.

That is not what I understand the experience that people normally get from hospice. And so it's good for people to know that. Um, is it doesn't make sense that if someone has, let's say they've been diagnosed with something that they know they have maybe a good amount of time, maybe a few years, but that the possibility of them leaving earlier than they expected is there for them to have conversations with you, um, when they're in a place where it's not, high priority, To try to figure out how they would like to die.

Michelle Kolling: Absolutely. Um, the difference would be just we won't meet as often. Right. You know, when you first get that diagnosis, there may be, sometimes where you really want to dive in and really understand what's going to go on. What's going to change about your life. What is, what is really important now?

What can I do? Get a clearer. Maybe a clear picture of really what my values are. And now that I know I'm probably not going to live a long life, what can I do? Um, with this time, that's really meaningful. Um, and it's usually relationships.

 So, yeah, to get involved early would be really helpful and it will change over time too. And sometimes it's even those, um, treatment decisions, you know, it's, and I'm, I'm sure your audience is very well aware of. Very well-meaning people in your life who love you and want to tell you how you should go about your treatment or go about your, um, your medical interventions or, you know, everybody has advice and everybody wants to help, um, but how to, um, maybe distract.

Distract from that noise or the get away from those distractions disconnect from that noise and really maybe even for the first time in your life really go into your own heart. What, what am I, what is important now? What has meaning now differently? Yeah, um, meaning means a very different thing now And I think meaning-making comes up with with these types of situations Where you're faced with your mortality, yeah So yeah, that is something I can help with.

Charlotte Bayala: Yeah, and then let's take it into a situation where a person Has is in hospice or they reach out because hospice isn't a requirement to reach out to you they reach out because Hospice for some reason isn't a possibility or it's not something they want to consider And we're coming into now Trying to deal with preparing for end of life.

And so they reach out to you. How do you help someone? Um, transition to the end because I know you, you kind of likened it to a birth doula and, and the outcome to that is completely different, but they are there with you with the person who's giving birth. At that final moment. Um, so is that something that you do?

Are you with the family all the way through the end? Yeah. Something they want, 

Michelle Kolling: yes. If they want that. Mm-hmm. And I wanna be, make it really clear too that end-of-life, doulas, and hospice work really well together. Okay. it wouldn't be a choice of one or the other. Mm-hmm. Um, so hospice, especially doulas are non-medical Correct.

So, The working together with hospice, which is part of the medical system and they provide comfort care and they're really great. We can spend more time. Um, and, and we can spend more time on the. Um, maybe more of the heart-centered things, but we also are very educated into the hospice process. So there's kind of a, there's kind of a training, honestly, that's part of what hospice does is train families on how to do the work.

Cause I think, right. There is a misconception that once you sign on to hospice, they're there 24 seven and that's just not the case. you might get a nurse once or twice a week in the beginning for maybe an hour., they might have a home health aide that helps with, physical cares, maybe once, maybe twice a week.

Um, and then they have massage and the other, disciplines of social worker and clergy or chaplain. But the rest of the time it's on the family. And all of the medications that come from hospice, you have to learn how those work. And so a big part of what I do as a doula is help train the family in this process.

Help them understand the signs and symptoms of natural dying. Hospice is a natural dying. I think that's part of it too, where we, we, we think of, you know, we've come to think of dying as a medical failure., and it's not, we're all going to die. People can be on hospice for six months, even a year or more.

Um, just depending on their disease process. Sometimes it's only a week or a few days. but that's a big part of what I do is help the families understand. All of those signs of dying and sometimes the more subtle signs, as they're seeing change. And some of the things can be distressing. There's a labor to dying.

You know, we talk about labor in birth. There's also a labor to dying and a lot of the, most of the physical symptoms, that physical labor is the same. it might present a little differently in different people. and so stages may be longer. sometimes the agitation is very, very pronounced.

Sometimes it's not. Sometimes there's also a misconception about pain. Um, dying doesn't have to be painful. Right. I've known deaths where there was no pain and then I've known deaths where there was a tremendous amount of pain and that was the main focus was getting pain under control. Um, and so there's a big range within that dying process.

 but really helping the families and the caregivers and the person themselves understand the changes in their body and understand that it is a natural dying process. And if you weren't, if you weren't dying from this disease that maybe is ending your life early, um, the process is the same at the very end of life with a 95-year-old whose body is just given out.

So, um, so that's really important to remember. 

Charlotte Bayala: Oh my goodness. That is, that is such a great thing to be able to have at that period of time of life. 

Being able to have those conversations with people and to be able to provide this service. Is something you really, I feel, people can't just jump in and say, this is what I want to do with my life without knowing in their heart that it's something that they can handle. What caused you, what led you to become an end-of-life doula?

Michelle Kolling: Well, for me, and for like a lot of doulas that I know we, I had a very transformative death experience. I helped my husband die, over 12 years ago now. it was really fast. He was really healthy and young and, we were just doing life and, out of the blue, we found a tumor. And, from diagnosis to the time he died was only 85 days.

Wow. so I know what it feels like to have my world turned upside down. and you talked earlier about it could be a beautiful experience. And there was so much beauty, in the horror, which is another thing that's really hard to understand that it can be beautiful and horrible. And. Both of those things can exist at the same time, right?

So in recovery, in grief, I was always looking for that thing that was going to make me feel better. And so I tried everything. I did workshops. I did counseling. I read every book I could get my hand on. I did everything that I could think of looking for that next thing that was going to make me feel better.

Yeah, I realized over time it wasn't going to be one thing. It was going to be accumulation of things and realize that I'm was never going to be that same person again. Right. And coming to that realization. Um, and then, you know, this, This could be two hours, um, just in the story, but, um, you know, I really kind of with all the reading became fascinated by death and dying and the idea of being a do.

Uh, I think I saw an article in the newspaper. I not even, I think that's the first time. And I was like, Whoa, okay. What is this? And I think I maybe even carry that article with me for a while. It's like, Oh, not ready, but there it is. And then it kept coming back and kept coming back. And then a few years after that, my father-in-law was dying.

Um, so my husband's dad was dying and in sitting with him, I just felt this, I don't know, I had a few mystical experiences along the way and, and this is one of them and just felt like I know how to do this. I already know how to do this. Um, and so again, a few more years. And finally. Through lots of life change, I was able to pursue it.

And so I, I got formal training through INELDA, which is the international, um, end of life doula association,  started volunteering to see if this was really what I wanted to do. And that's how I came about it. And the really interesting thing is when I did the training, I realized that my husband showed me how to do this.

And. In that knowing, sitting with my father-in-law, I realized we all know how to do this. It's part of being human. We always used to help our people die. It's really in the last hundred years where we've been able to separate ourselves from the idea that we are going to die and the people we love are going to die.

So it's really connecting back to that part of ourselves, slowing down. We know how to do this. And that's really what this is for me. 

Listen to the next episode to hear the second half of our conversation and learn about the things to think about when having conversations about death and dying.