Death Doula Care for Dying with Kasey March

End-of-life doula Kasey March shares how personal loss and a background in guiding people through complex systems led her to death work. After experiencing the painful absence of support when her grandmother died in the ICU, she realized the importance of conscious planning, education, and compassionate guidance for both the dying and their loved ones. Her work centers on having conversations before a crisis arises, empowering families to make decisions grounded in values, legacy, and healing.

Kasey helps families navigate end-of-life care, plan legacy projects, and prepare for difficult decisions with compassion and clarity. She often supports clients through advance directives, hospice options, and even medical aid in dying, always centering the client’s wishes. Beyond one-on-one work, she educates communities about grief, dying, and medical decision-making, reminding people that preparation can prevent confusion and guilt later.

 For Kasey, a “well-supported death” means reducing burdens, opening space for connection, and helping families integrate grief without judgment. Through advocacy, education, and compassionate presence, she works to ensure that death, like birth, can be approached with dignity, choice, and love.

Links: Website www.doulacarefordying.com 

October 27, 2025 at noon Kasey will be appearing on EXIT MATTERS, a live online series hosted by Patient Choices Vermont (PCV). How our final chapter unfolds depends upon the people, support, and choices that surround us.  Kasey's session will cover "What is a Death Doula?"

IG: @doulacarefordying | w: doulacarefordying.com

on death & dying: the role of an end of life doula  quick watch

a good death or a well-supported death? quick watch

resources and motivation to help you and your loved ones have a well-supported death. Click here!

No visitors please, a free PDF template for when you need to tell friends and family your loved one isn't accepting visitors, click here!

Transcript

Kasey: [00:00:00] When I talk about a well-supported death that for me encompasses or this person who is dying, what are your values? What's the most important thing? 

Jill: Welcome back to Seeing Death. Clearly. I'm your host, Jill McClennen, a death doula and end of life coach. Here on my show, I have conversations with guests that explore the topics of death.

Dying grief and life itself. My goal is to create a space where you can challenge the ideas you might already have about these subjects. I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true in this episode. End of Life doula Casey March shares her journey into death work, and why?

Early conversations. Conscious planning and compassionate support are so essential at the end of life. Casey's path began in higher education helping students navigate complex systems, but the loss of her grandmother in the ICU without guidance or support left her searching for a better way. Later after working with a birth [00:01:00] doula during her pregnancy, she realized that families at the end of life deserve the same kind of.

Presence and advocacy. Now, Casey helps families prepare for difficult decisions, explore hospice and medical aid, and dying, and create legacy projects rooted in values and love. Thank you for joining us for this conversation. Welcome Casey to the podcast. Thank you so much for coming on. I know you responded to a Facebook post that I put out recently.

Where I was like, I wanna talk to more death doulas, because I know there's a lot of us around now and we all do things a little bit different. We all have different training, we all have different views on a lot of things. So thank you so much for joining me today. Can you just tell us a little bit about yourself, who you are, even outside of being a death doula?

Kasey: Hi Jill. Thanks for having me. I'm Casey March, an end of life doula in Vermont. I came to end of life doula work from higher education. I have a background in. Helping people gain access to information. I specifically worked in student support services, helping [00:02:00] students navigate a complex bureaucratic system to meet their needs when something was preventing them from accessing all the things of school.

Whether that was like, I got into a car accident recently and I'm having trouble with attendance or something going on. I was helping them navigate that process. In February of 2020, right before COVID hit our shores, my grandmother passed away in the ICU. That experience was really difficult for me and for my family.

I very much got the sense that this had never happened before. They didn't ask if we wanted a chaplain to be present. Didn't coach us through the process at all. It was a situation where we got the phone call. It's time to come in. Everybody gathered to say their goodbyes and I came out of that feeling a lot of grief, but also anger.

She knew this was happening. This has to have happened to other people before. It could have been so much better and not knowing what mechanism there might have been to make it better for us as a family. Yes, we had experienced deaths before, but not [00:03:00] like this, and we didn't have a lot of coping mechanisms for it.

Fast forward a couple of years. I had my first baby. I worked with a birth doula. She helps me navigate the medical system. She teaches me how to advocate for myself. She's this wonderful human and it really makes my experience right, and I have a wonderful experience. And then somebody mentions a death doula and I was like, this is the thing.

These are the pieces of the puzzle. This is what was missing. And I already have the skillset of helping people navigate systems, but now I have my skillset and this passion. I've had a personal experience. Also, I lived through the pandemic. I was supervising staff members at the time, and so I was seeing folks who, my mom has a LS.

We used to have a caregiver come into the home. That person can't come in because of COVID, again, trying to navigate this system. And continually coming up against barriers. And this is a time when people wanna be spending their time and their energy with their loved one, not [00:04:00] learning a new skillset on how do I navigate in order to get the resources and support that I need.

So I was like, oh, this is something I can help people with. I can learn the system and teach people how to navigate it, tell them what some of their options are. So that they can put their values first and spend time on what really matters to them, whatever that might be, whether it's putting together legacy projects or hosting family members and saying goodbyes in some sort of formal way, or making amends if they have estrangements in their life.

Whatever it is that people individually want to do, I wanna help get the stuff out of the way so that they can focus on that. 

Jill: And that's me. No, I love it. So many of us come to this work because of an experience with a loved one, and we're like, huh. That didn't go as well as it could have gone. Like there's something that just is missing and something that's not there.

And same thing for me, when I heard of a death doula, I was like, oh, that's it. That's the thing that I need and that I want to [00:05:00] do for other people. Mm-hmm. It's just a challenge to get other people to know that we even exist. Yeah. And that they. Need us. I talk to people after the fact and they'll say, oh, I really wish there was somebody like you.

When my one that like really broke my heart was like, when my wife was dying, she left me with three little kids. I really wish I had somebody like you, and I'm like, I wish you did too. I wish I could have been there to help you navigate all of it because it is so confusing and so overwhelming when you're already upset and stressed.

Not in the mindset to be like, let me deal with phone calls and this paperwork, and ask questions that I should be asking. But I don't know those questions because I've never had to deal with this before. So yes, yes. This 

Kasey: kind of education is like, it's always too early until it's too late. People who I talk to who are comfortable talking about end of life and death are like, nobody wants to talk to me about this.

They feel like it's morbid. And my refrain is [00:06:00] right because it's always too early to talk about it until it's too late. We are in the midst of it, and now you are trying to gain this education and figure out what you want for yourself, or how you and your spouse are gonna make plans or whatever the situation might be.

In the midst of what is probably a medical crisis, right? And so you're not feeling your best, your brain when you are feeling that sense of urgency and like emergency. It's not working the same way it does on a calm, cool Monday morning you can say, let's take a bite-sized chunk and talk about one piece of this.

We don't have to dive into the whole thing. We don't have to figure it all out. That's the much gentler. Way of doing this. Right. But as a culture, that's not how we approach end of life. I do presentations in the community and I do them with a local author. They're called Life, death and Cake, and we go to libraries and churches and things like that.

And we talk about preparing for a well-supported death. Mm-hmm. And what the different components of [00:07:00] that might be. And I have similar experiences to you consistently. People will come up to me at the end of these presentations and say. Oh, I wish I had known about doulas a year ago. It would've helped me when my mom was dying or when this happened, and I really hope that we get to a day where that's not the conversation I'm having anymore.

When people are coming up to me and going, I'm so glad that you do this work. My family worked with a doula and it changed things in X, Y, and Z ways, right? It breaks my heart that so many people are suffering in this way, and there are people. Granted, not as many as we need, but there are people who do this work who can help and they don't know about each other.

Sometimes when I do these presentations, one of the big questions I get is, what's the point of having a doula? Dad's on hospice. I'm already getting these supports and my perspective is like, this is a team effort, right? There's your doctor, there's hospice. The people who are providing care, probably family members, maybe some a nurse [00:08:00] and doulas.

And that's a great rep, right? Hospice is only able to provide you that nurse for an hour a day, maybe close to the end, a couple of days, a weeks, maybe every single day when you're really close. What happens the other 23 hours of the day, especially for families who have been doing care in the home for a long time, who are feeling really burnt out.

That acute period at the end, having to focus on who made breakfast, did you have a chance to take a shower? Who is sitting with the person who is actively dying? Let there be another person who comes in and relieves some of that burden, and that's what we're there for. 

Jill: So 

Kasey: I've been taking 

Jill: a few notes 'cause there's a couple things that you said.

I like that you called it well-supported death. There is this movement now and I'm totally on board with the Good Death kind of thing. We're trying to get everybody to have a good death. Of course that would be ideal, but I think well supported death is a better way of phrasing it [00:09:00] because I mean, death is death, right?

It's always gonna be sad. Even when we do the best that we can, there still is gonna be challenges and there's still gonna be moments, especially now, I'm really grateful for our medical system. Mm-hmm. There's a lot that they can do also. There's a lot that they could do that keeps people alive and maybe they shouldn't.

And when we get into that, it's not gonna be good no matter what we do, but it could be well supported. We can have people there that will help us have the conversations. With the doctors, help us navigate what we need to do. I really like that phrasing. Ideally we could be better supported for it. One of the things that I had spoken on my podcast, and it was after we stopped recording, but it was a hospice nurse.

Mm-hmm. And she didn't have a negative view on death. Doulas where like some people in hospice do seem to be negative about death, doulas, and that's a whole topic that can be explored. [00:10:00] Forever. But the point that she made that I did have a hard time disagreeing with, I mean, not that I want to disagree with her, but I could really understand this, that she was like, for people in 24 hour care of their loved one, if they have any disposable income, they're gonna hire a caregiver.

They're gonna hire an overnight caregiver that's gonna come and spend the night. They're not gonna spend that money on a death doula. I was like, yeah, if I was taking care of my mother and. I had any little extra bit of money. Mm-hmm. I might need to just hire somebody. 'cause like doulas, typically we're not gonna do that work.

We're not gonna bathe your person, we're not gonna be giving them their medications. We're not gonna be spending the night, even though some will do a little bit of respite care. Yeah. But for the most part, we're there to help support the whole family, to help support the caregiver, to help support the person that's dying, navigate the whole thing.

And I was like, all right. I can't argue with that because most of us. Charge money [00:11:00] as we should for our services. I'm not quote unquote, working a job right now because I'm focusing all my time and effort on this, so I do need to charge money for it, and we can't accept insurance. We can't accept anything that will help them pay towards us.

And so we need to charge people out of pocket. I get really. Conflicted about that. But I also didn't have a birth doula. I had my last child, she's 11, so she'll be 12 this year. Mm-hmm. And I didn't really know of them 12, 13 years ago when I was pregnant with her 15 years ago when I was pregnant with my son, I didn't know about birth doulas.

Now I feel like almost every woman that I talk to that's having babies now, they're like, oh, of course I had a birth doula. I assume it's the same thing for birth. Doulas, you have to pay out of pocket insurance doesn't pay for them. 

Kasey: I mean, there's a push right now for birth doulas to get paid for by health insurance.

But even backing up further to some of the things that you said, it was a hospice nurse's feedback. Yeah. Doula's not the solution to every problem in [00:12:00] end of life care. Not everybody needs one. The time to work with a doula isn't necessarily at the very end when someone is actively dying. It actually could be really supportive.

To work with one much sooner. The work that I do as a doula includes vigil work, like being in someone's home, whether that is a nursing home or their family home when they're actively dying and helping the family members that are present and that person is part of the work that I do. I also am out in the community doing presentations and education because I want people to have the tools they need to think about what they want their end of life to look like so they can line up the resources ahead of time, have transparent conversations so that.

As the surviving spouse, adult child, best friend, I don't feel really guilty when we had to make a decision and I didn't know what you wanted. Somebody sent me an email today and it was about, you know, this individual is on a feeding tube, and I know this is a person who's educated about end of life. Who knows?

There tends to be a place. [00:13:00] In the dying process where your digestive system starts shutting down, if someone is saying they're not hungry, continuing to push food is not a good thing because eating when your digestive system is not processing will cause discomfort. And this person is worried. We're in a situation that someone has a feeding tube, so we're not dealing with hunger cues.

We're not gonna know when we reach that point. When do we stop? Necessarily doing the feedings a couple of times a day, right? And I said, these are great questions for a medical provider. I'm not the right person on the team to ask that. But how wonderful is it that you are having these conversations before you get to a scenario where someone has to make that decision?

Because how terrible would it be to be the person that has to decide, are we continuing feedings, are we not? Do I feel like I'm withholding food and starving someone? What would this person want me to do? Clearly they don't want to be uncomfortable, or maybe they are really afraid of not being fed and nourished, and so they are actually willing to experience some [00:14:00] discomfort because the stress of thinking that they're not going to get that nourishment.

Is psychologically cha like these are conversations that are helpful to have right now, we don't even think to have these conversations. So when you're working with a doula earlier on and you're identifying your values, what you think is the most important. Then you're doing some of the work of putting together your advanced directive and outlining, I do want this kind of medical care.

I don't want this kind of medical care. These milestones are really important to me when I no longer recognize my family. I do want this kind of care, or I don't want this kind of care. I work with people who choose medical aid and dying as an end of life option, which is legal here in Vermont, and we're one of the few states that doesn't have a residency requirement, which means that people come from out of state.

A lot of the clients that I talk to, pretty much everyone that I talk to, medical aid and dying is a choice. These are people who want to live, who are already [00:15:00] dying, right? They have a terminal illness with a prognosis of six months or less. Bare minimum, you cannot qualify for this if you don't have those two criteria.

And so these folks are making a decision about how they want to end their life many times, because their disease progression is such that something is likely to happen that's unpalatable to them. It might be that they can't take care of their selves in particular ways, or it is likely that they will experience.

A kind of pain that hospice can help with, but they will no longer be conscious and they don't want to languish in that state for a long time. Maybe they've witnessed a death like that and it's something they really don't want for themselves. And so we talk about milestones. When is this something you would want?

Under what criteria? Because some folks will go through this process of meeting with various doctors, ensuring that they qualify and they can obtain the prescription. They never even fill it. A prescription is there in the background and it is their safety net, [00:16:00] and they continue with their dying process.

And if things go fine, if none of those milestones that they felt like this is my line and the standard hit, the prescription never gets filled. But the piece that comes with having this as an option. It's the reason they work with people who want this option. I didn't set out to support folks with medical aid and dying.

I was working with a client on legacy work. He was writing letters to emerging adult children, late teen, early twenties because he was gonna miss certain things in their life, graduations, weddings, things like that. He was writing these letters that could be given after he died. I showed up one day thinking, you know, I've got my laptop in hand and we're gonna have this conversation and.

I'm gonna be transcribing and helping him refine thoughts and running around the house and collecting things that are gonna be given with these letters. And instead, he says to me, I got my prescription. And I was like, what are we talking about? Because we [00:17:00] had never even had a conversation about it. We'd been working together for once.

He said he was sussing me out. Right. He was seeing. Do I feel like this is someone I can trust? Is this somebody that I want to be there for me and my family on the day? And I guess I passed the test because he told me like I went through all my doctor's appointments. I got my prescription. I'm setting my day.

Will you be there for my family? He wasn't as concerned about himself, but he was concerned about the people he was leaving behind. And I, at that point, had a relationship with this person and this family, and I said. I've never done this before. I would like to go get some training. How much time do I have?

And his date was a week and a half out and I was like, okay, I will go get trained. I went to the American Clinicians Academy on medical aid and dying, and I did their end of life doula training. The day the pharmacist, 'cause we have one pharmacy here in Vermont that compounds this medication, delivered it.

I was there. I listened to all of the instructions. I asked him a million questions. He gave me his contact information so that you know I [00:18:00] could be. In communication with him, and that was the beginning of this journey, and that first person never took their medication, passed in his sleep the day before he had selected.

But what I got to witness was somebody who. Went through this process, knew that he had this as an option, and because he had planned a day, he also planned all his goodbyes for like a week and a half. There was a series of friends who came in the house and he had played music as an adult. When he was feeling good, they had jam sessions and his guitar would come out.

Sometimes if he wasn't feeling good, he would just get to watch as they serenaded him and watching that process, as he said, his goodbyes. Got the exit he was looking for, had the peace of mind of, I know when we're gonna do this. I know all of the support is there. I'm not worrying anymore about when this happens with my disease.

How am I gonna cope? Because he was concerned about a [00:19:00] disease progression that was gonna cause a lot of discomfort, and he no longer was using all of this mental energy on those things. Instead, he was focusing on. His kids, those relationships saying goodbye to friends. So coming out of that side of the experience, even without this person taking the medication, I was like, okay, now I understand why this is so important.

Mm-hmm. If people are choosing this, I am comfortable with that. Right. I am comfortable supporting people through this choice. I've always felt like it is not my end of life. It is your end of life. You get to make your decisions. I am a non-medical person. Who am I to weigh in? But I actually had somebody test me on it, right?

And basically say, I'm gonna choose this thing that people have really strong feelings about that I might not even ever choose for myself. Will you still support me? And I have found my answer is yes. I will support people who choose medical aid and dying. I will support people who choose voluntary stopping eating and drinking.

Those are their rights, even if it's not [00:20:00] something that I would choose for myself. I recognize the importance of the agency for my clients and what it gives them and their families to be able to make those decisions. 

Jill: People will sometimes ask me. What do you believe? Or like, what are your thought? And I'm like, it doesn't matter what I believe.

It doesn't matter what my thoughts are on it. I am there to support you in whatever it is that you believe. Honestly, sometimes people choose treatments that I'm like, I don't know how well that's gonna go for you. It's probably just gonna prolong illness and you're not gonna feel great. But I'm not gonna say that to them if we've had the discussion.

Mm-hmm. And we've talked about the different treatments. You know, when I talk to somebody. And they'll say, well, yeah, of course I'm full code. And I'm looking at 'em. I'm like, you're like 85. You're already very sick. You really wanna go through chest compressions that are probably gonna break your ribs.

Mm-hmm. And they're like, yep. And I'm like, all right. I mean, that's not my choice. I would not choose that. But if that is the choice that you wanna make, I'm gonna advocate for you to [00:21:00] get whatever care you want, even if it's not the choice that I would make. But usually what happens, I like that you brought up death.

Doulas are actually more effective early on, and I've been thinking more and more that I would probably never turn down a client that's last minute, like they're actively dying. But I've done it a few times and it's. Really hard on me. Mm-hmm. It's more emotionally draining because you're in the hospital again, trying to advocate for somebody that I literally don't know because they're completely unconscious.

I've got children and grandchildren that are screaming at doctors. Yes, I was helpful. I don't regret doing it, but I physically felt ill afterwards. I was so drained. I'd been trying to get these people to talk to me for months. To get clear on what was going on. There was just all the reasons why they couldn't.

And then last minute, it's like, we're in the hospital, they're saying that she's dying, we need you. And I'm like, well, what? Okay, [00:22:00] sure. But this would've been, wait. And then it was like, well, we just want her to wake up so she could tell us what she wants. And I'm like. This is why six months ago we should have had this conversation.

Sure. Because now she's not waking up and now we just gotta do the best that we can. And I know nobody wanted to have this conversation six months ago, but now look where we're at. And it was a really difficult situation and that was just one out of like three, where I got called in last minute and I was like, this is not.

It's not effective. So really we need to talk to people way earlier and then potentially you're not even gonna need the death rule there during those last couple of days and hours. If you get prepared ahead of time and have the conversations, then you're gonna be able to make the decisions that you need to make because you've already had the conversations.

Some people, 

Kasey: rightly so. Don't necessarily want a doula there. At the very end, they feel like this transition [00:23:00] is sacred and private. It's like the Berkeley mom who's like, I don't want another person in the room. There is something going on here that is potentially hard work. The dying process is a process.

Your body shutting down and I don't need another person who my family is responding to. You are not gonna hurt my feelings. I don't have to be there. My job. Is to help you have a well-supported death. And we talked about how I say well-supported. I don't say a good death, and there's a few reasons for that.

One of my primary reasons is because I don't feel like the people who are going to be grieving need a measuring stick to judge themself against did I give them a good enough death? There is enough that people are working really hard trying to do that. I think a good death is a great aspiration, but I also think it can get applied in ways that are really harmful to the grieving process.

When I talk about a well-supported death, that for me encompasses for this person who is dying, [00:24:00] like really articulating what are your values? What's the most important thing? To your point before about choosing treatments and things like that, if longevity, how long you are here is really important.

We're gonna make different decisions than if. Comfort is the highest and greatest good, or if cognition is the highest and greatest good. You really wanna be able to communicate with your family as much as possible, as long as possible. That's very different than being really comfortable. You might say, I'm okay with a certain amount of discomfort if it means I can still have a conversation.

I don't think any one of those is necessarily better or right for the thing I need to. So. Ascribe onto an individual client, right? But you, based on all of your life experiences, are probably going to go in a particular direction. And it's not like those three are the only options. There's a ton of options, but what space have you ever had in your life to kind of drill down into [00:25:00] figuring out.

What do I want? What is the most important to me? What scares me? What do I want to avoid? You know, what have I seen in friends and family or on dramatizations, on TV that has really traumatized me or freaked me out in some way in order to go through this process as peacefully as possible? What do I need?

What support should be in place? That is what I am trying to help people navigate. The first person that I'm doing it for is the client, the person that's actively dying. But to your point about being there in the hospital, the individual who's dying in most cases is not my only client. The immediate family.

My definition of family is broad. It's those loved ones that are closest in showing up for you. I don't care if legally or biologically they're family. Mm-hmm. Family. They are also clients at some point. So when I get a phone call from a hospice nurse saying the patient is actively dying, but the family needs support, do you have room?

Can you talk to them? Will you take someone on? I have a relationship with [00:26:00] several of these folks, but they recognize it's a different situation to walk in when someone is actively dying, that you really don't know that you've never had the opportunity to talk to them when they were conscious or very limited, and you didn't get into understanding what their values are.

They're still benefit to showing up in those situations, the majority of the benefit is for the people who are there, right, taking care of them and making sure they're well supported because they are the keepers of the knowledge. When I show up in that situation. Family members are struggling to make a decision, you know, your person, based on what you've seen, what do you think they would've wanted?

Not necessarily what do you want in this moment for them? How much we get into that really depends on the relationship, but what do you think they would've wanted? You make a decision and afterwards we can talk about integrating your grief and living with that decision. You're gonna do the best you can with the information that you have.

And I hope you are surrounded by resources that give you [00:27:00] space to figure it out. When you're in the hospital and machines are making noise and people are asking you to make a decision right now, and you don't even feel like you have the space to, thinking about past conversations I've had with dad or with my wife, what would they have wanted either directly related to this situation or like how did we take care of pets in the past?

What were the conversations we had around that? Like there are breadcrumbs. In your experience, and sometimes people need a little bit of help recalling those things so that they can make a decision that's okay because this is not my person about what you're choosing. So I can spend the time with you helping you make that decision.

Like that's my role. 

Jill: Yeah. Yeah. Just support people. And it's interesting too, because sometimes. I think, you know, when we sit and talk with families about all the different things that might happen, I find that I need to also remind them that we're gonna talk about intubation, we're gonna [00:28:00] talk about feeding tubes, we're gonna talk about chest depressions.

It doesn't mean you'll even ever need any of these, but if you do, we need to get clear on it because I think. Sometimes having the conversation, people are like, oh my gosh, but I don't want any of this. And then there's that thought of like, it's all coming for me, it's all gonna happen. And I'm like, well, no, no, no, no.

It's just these might happen. And also. Watching, observing, being in the hospitals with people that weren't even clients of mine, just from volunteering in the hospitals. Some of these things like when you do one, it is more likely that then you do the next and it does progress. So I also do understand that fear of like, I don't want any of it.

I'm like, well. Let's have the conversation and what we want at one age is not gonna be the same. I'm 46. My kids are still fairly young. Like, sure, give me the chest compressions. I don't care if you break my ribs, whatever. It's fine. Do it if I need it. Whatever I need to get me through potentially an emergency.

To then see, [00:29:00] okay, what is the next steps? Keep me alive as long as possible. Right? But when I am 80 and my kids are grown and I'm older, especially if I have an illness, like absolutely not, do not gimme the chest compressions, just like, let me go as peaceful as possible. I don't want the feeding tubes. I don't wanna be intubated.

I don't want any of that. When I'm 80 years old, I don't care that I'm only 80 at that point. 80 is good. I'm ready to go. It's gonna change over time. So if you have the conversation, have the conversation when you get married, have the conversation, if you have children, have the conversation. When you get divorced, look through your paperwork, have a conversation with the people around you and assess your needs.

If you get a diagnosis, depending on what the diagnosis is. Have these conversations regularly. But because we are so uncomfortable having them, like the breadcrumbs so often. We'll drop the little bits of conversation rather than leaning into it and having more of a conversation. So many people really do shut it down and how, maybe I'm not [00:30:00] dying now, but when are we gonna talk about it?

It doesn't have to be this big, morbid conversation. Like you said, it could be a Monday morning, you're having coffee. Hey, I read this news story that, you know, this person died this way and I don't know if I would wanna do that. Can we just talk about it for a minute? You talk about it for a few minutes and then you move on.

You still should get the things in writing, but the conversation is the most important part because no doctor's gonna sit down and read through a legal document or just an advanced healthcare directive. You print off the internet. No doctor is gonna sit there and read through it. You need your person to advocate for you.

The documents help back you up legally or help back you up in the sense of like, if you do the document and you have the conversation, then they know, but you have to have the conversation. I think that 

Kasey: one of the avenues that I talk to folks about when they say I wanna have this conversation, but people around me are resistant, is, okay, we talk about these breadcrumbs.

Another way that I talk about it is the dose model [00:31:00] of like you do one small dose at a time and eventually. We're caught up on this, and I say use pop culture, right? If you watch a movie and somebody is going through a disease process or died in a particular way, that is your avenue to say, and it can be super briefly.

Jill: Mm-hmm. 

Kasey: Ooh. I wouldn't want that. Like I wouldn't want to be hooked up to machines in that particular way because even if I woke up, my quality of life would be X afterwards, and that's not something I'm interested in. You just gave so much information, like there's a specific quality of life level that this person is using, and it was two sentences.

That's really important. 

Jill: Yeah, and I think some of it too is. We don't get a good representation in media of what quality of life is like. Sometimes people, even like CPR is a great example. Do you see it in TV shows? Somebody gets CPR and five minutes later they're sitting up, they're talking. It's like nothing ever happened.

[00:32:00] People don't actually realize, like they genuinely think they're gonna go through this treatment and then they're gonna be fine afterwards. It's like, oh no, I'll be okay. And it's like, well, you might be alive, but what are your chances of having inequality of life? And those are the conversations. That I know enough about it to help families navigate it, but these are the conversations we need to have with doctors.

We don't always ask them that of like, I have this diagnosis, so you're saying I should try X, Y, and Z. Well, what happens if I try X, Y, and Z? Is it gonna save my life? Is it gonna extend my life? What's my quality of life potentially going to be like afterwards? If you get the honest answers and you're like, Ooh.

I don't know about that, then at least you can make an educated decision. But most people don't ask those questions. So if a doctor's like try X, Y, and Z, they're like, okay, sure. I'll do X, Y, and Z. Yeah. Thinking that like, I'm gonna be back to normal afterwards, but you might not be. And is that how you really wanna live?

But we don't [00:33:00] know that. And so, yeah, a lot of people, they might say, oh, I don't wanna live. This certain way, not realizing that some of the choices that they're making, that's how they will spend the rest of their life. 

Kasey: Yeah. There's a framework that I like to introduce my clients to for medical decision making.

The acronym is brain. So what are the benefits of this intervention? What are the risks? What are the alternatives? Because we don't often know, we are allowed to ask what the alternatives are. Just pausing for a moment to get a sense of what is my intuition telling me? And then last really important question, what happens if we do nothing?

Jill: Mm-hmm. Yeah. 

Kasey: So medical education is about cure and treatment. Doctors are not necessarily trained to tell you. The prognosis. They're trained to tell you, these are the things that I can offer you. This is how we can make it better. Palliative care is different. Hospice care is different. On your oncology ward or in some of these other [00:34:00] settings, you're very well intentioned.

Medical team is like not trying to pull the wool over your eyes. I'm sure there are bad actors out there, but in general, everybody is working for your benefit. The lens and perspective they are coming to your care with. Is not necessarily the same as what you need to make your decisions. You have to advocate for yourself to get the information you need to make a well-informed decision.

That's why I walk people through that brain acronym of when you are being presented with an intervention, whether it's your numbers came back, we're looking at your cancer, and I think we should do another round of chemo, and we should do this kind in this particular drug and da dah, dah, dah, dah. And you're in that doctor's appointment, right?

And your brain is starting to spin really fast and everything you've ever known is running out the door, right? Hopefully you have your notebook with you. And on the front page it says Brain, and it's got the acronym spelled out. You say, okay, let's slow down for a second. Let's talk about this chemo you're [00:35:00] recommending.

What are the benefits? What are we hoping to achieve? What are the risks? Or another way to ask this is, what are the trade-offs? Risk is one thing. It could, you know, a risk of blindness or risk of this or a risk of that. But realistically, what are the trade-offs? Because that can tell you what your quality of life is going to be after.

Because people assume I'm gonna do a treatment and the end result is going to be restoring me to the place I was before. That's often not the case. We're hopefully improving, but it might be, you know, before we were at about 70% of our healthiest self, now we're at like 40. And for each individual, what is considered quality of life.

Is different. So you need to know what are those risks or what are those trade-offs associated with this treatment so that you can make a decision about it. I have had people tell me they have never been encouraged to interact with the medical system in that way before. Patient, you're a [00:36:00] problem. You know you're difficult and that crosses genders.

Right? I hear that from people just sort of across the board, and I hear from people saying like, I could never do that. Take somebody with you to an appointment. Find the person in your family or your friend group, or tap your doula if you want them to come as an medical advocate. Their role is going to be to take really good notes, and if we're starting to wind down the meeting and you didn't ask all of your questions, they can say, Hey, when we met ahead of time, you said that these things were important to you.

We've talked about some really great things today. If you still want it covered, can I reintroduce these questions and then bring them up? That is one of the more fulfilling things that I get to do with clients because. The doctors that I work with, I have a really good relationship with now because they are also getting the opportunity to hear from their patients in ways that they didn't before, and I imagine that makes their job much more satisfying.

Right? How hard is it to know when you get an hour appointment [00:37:00] and 20 minutes of FaceTime one-on-one? What each of your patients really wants, and if what you're offering them is going to be the best fit? You don't, doctor, you're trying to make your best guess, right? And I, you probably didn't get into this work because you wanted to force people into treatments that they don't really want and aren't in alignment with their values and that they're gonna be upset about and screaming at you about in the end, right?

That's not what people are doing this work. When they can have better conversations, where they get asked the questions and they can provide the information that's good for the patient in front of them, that's a better interaction for them too. 

Jill: Yeah, because it's not easy for them. I have seen the families that don't wanna have the conversation with the doctors.

They don't wanna know that we could try this treatment. But it probably won't work. Some families don't wanna hear that. They wanna hear, well try everything. I don't care. You are giving up [00:38:00] on me. Try everything. Sure. And so I've seen both ends of the spectrum. The doctors that just kind of like, well, we're gonna, of course we're gonna try this thing.

And then the family members that are like, what do you mean we're not gonna try this thing? You're giving up on us. And so it puts people on both ends of the spectrum in a really. Tough place. Palliative care is amazing. Palliative care doctors, social workers, I love the palliative care teams that I've worked with.

I think they're amazing people that can go in and help folks have these conversations, but really doulas can help before you even get to that point outside of your time, because again, they're still doctors, they're still social workers. They're not gonna be answering your phone calls on a Saturday morning because.

You just found out some news that you don't know how to process Most doulas, we do keep ourselves open to that, especially if it's a family that I've worked with. Mm-hmm. When you're getting closer to the end, like 24 hour, you can call me. [00:39:00] I don't care if it's two o'clock in the morning. If your person's doing something weird, it's freaking you out.

You don't know what to do, give me a call. As long as I know ahead of time, I'll take my phone off silent. That's the freedom that doulas have because we work outside of the medical system, so you're gonna have to pay us out pocket. I know that's not feasible for everybody. But for the people that can afford it, sometimes I'll say to people, I'm the Ritz Carlton end of life care where I'm not gonna be for everybody.

It's not necessarily gonna be cheap, but I took $75 an hour and I have packages so that if you pay me for a package, you get a lot. And then we're not tracking hours and all that. But considering that, I know there's people that spend $75 on all kinds of stuff without thinking twice about it, and yet they're like $75.

I don't know. That's a lot of money because you get a lot of really. Important care and benefits. Mm-hmm. [00:40:00] Say hiring a death doula. To help you. This is gonna be one of the most important times in my life is when I die, or when my husband dies, or even when my mother dies, when somebody that I love is dying.

This is like the one time, it seems to me it's worth investing a little bit of money. Yeah. Maybe I'll buy the purse that you wanted to buy and hire a death rule instead. I don't know what to tell you. 

Kasey: Well, and so for me, yes, I charge for services. I do packages. Some of the packages that I offer start at like $2,200, and some of them go up to five grand.

There's a lot involved in what are the different services, how long are we anticipating working together and building in things like what if we don't complete everything in the package? Who gets the prorated refund? When people are grieving, we set it up. It's really clear. This is the payment authority.

We take care of all of that. I really believe that everyone deserves a well-supported death. I have tried to set up my life and my schedule in a way where. I don't only serve the people who have means, right? I'm also a hospice [00:41:00] volunteer, so there's some work that I'm already doing, completely pro bono there, and I offer sliding scale, and I do as much pro bono work as I am able to do without harm to my family, right?

And we live in the country where we live in the times that we do. I don't own my home outright. There's bills that have to be paid. I make sure I can take care of those things. Try to make as much space as possible for the folks who don't have means still getting support. I run a death doula network for doulas in the Northeast that welcomes doulas who, yeah, they're career doulas and they charge for services, but also there's volunteer doulas and they don't, right.

There is way more need than there is. Available skilled people to meet all the needs. Right now, what I can do, based on my skillset, is try to make sure, oh, we got an expert who wrote the V Set Handbook, and she's gonna come to the Northeast Death Doula Network meeting, and everybody is gonna be able to come [00:42:00] and ask her questions and hear her presentation and learn how to support someone with VE.

And now in the Northeast, we have doulas that are familiar with this process, some charge for services and some don't. And they got the same quality education. Didn all have to go running around trying to figure out how do I get this training? Because unlike hospice, right, doulas in general are individuals working for themselves, or maybe they're connected, but they don't have all of these opportunities built in.

Like you are trying to find your education, you're trying to find the resources to help you develop best practices. I come from an education world. I am naturally curious and constantly trying to learn new things, which means that I'm known for that. So people send me stuff all the time, which is great. I love hearing like, Hey, did you hear so and so is doing X, Y, and Z presentation?

And I share that so my community can say, these are things I'm really interested in. I didn't have to search it out. It just showed up in my inbox. Look, [00:43:00] there's this training available at our regularly scheduled one Monday a month meeting time. Great. That's something I can do to help expand access in addition to the spots I have in my schedule to provide sliding scale or pro bono work like, because yes, it would be great if I could spend all of my hours just doing pro bono work.

Yeah. However, I know there are people in my community who can. They don't have access to the training and resources that I do because doing paid work means I can afford to pay for a conference or training. Maybe you're a retired hospice nurse and in your retirement you have decided you're gonna do your end of life doula training, and this is a service you're gonna provide to the community.

That's amazing, but you're on a fixed income, so you're not paying for all of these other resources. This is one of the ways that I'm contributing, right, is by trying to make these things as accessible as possible so people don't have to find them themselves, find new ways of paying for them, just put it all in one place.

Jill: That's [00:44:00] amazing. And we are coming up on the end of our time, so why don't you tell everybody where they can find you, website, social media, whatever you wanna share. 

Kasey: Sure I am Doula Care for dying everywhere that you wanna find me. So my website is doula care for dying.com. I'm on Instagram at Doula Care for Dying.

I'm, I'm on Facebook at Doula Care for Dying. I actually spend more time. Doing my email newsletter and trying to gather resources that I think are really helpful to people and putting them in that newsletter and sharing it with folks than I do on the social media. I find that the slightly longer form works better.

I take questions that I then address for people so that they get. You know, a 90 minute TikTok video is, or a 92nd TikTok video is great, but I'm gonna give you like a full article about 

Jill: it. So that's me. Awesome. I'll put links to all of that in the show notes so people can find you and sign up for your newsletter.

Thank you so much, Casey. This was lovely. I love talking to people that do this work that we all do it, but slightly different and [00:45:00] I really enjoyed this. Me too. Thanks so much for taking the time and for inviting me on the show. In my next episode, Jason Tuttle shares his story of love, caregiving, and grief that has shaped his life.

Jason and his wife's son was born with Eagle Barrett Syndrome. A rare condition that required weeks in the nicu. Over time, both of their children faced severe developmental delays, and Jason became the primary medical caregiver spending countless days and nights in hospitals. When his son died in January, 2022, Jason was faced with unimaginable loss.

He speaks about the ways of anger and isolation that followed the support he found through therapy and journaling, and how writing about his grief online created. Unexpected community and connection. If you enjoyed this episode, please share it with a friend or family member who might find it interesting.

Your support in spreading the podcast is greatly appreciated. Please consider subscribing on your favorite podcast platform and leaving [00:46:00] a five star review. Your positive feedback helps recommend the podcast to others. The podcast also offers a paid subscription feature that allows you to financially support the show.

Your contribution will help keep the podcast advertisement free, whether your donation is large or small. Every amount is valuable. I sincerely appreciate all of you for listening to the show and supporting me in any way you can. You can find a link in the show notes to subscribe to the paid monthly subscription as well as a link to my Venmo if you prefer to make a one-time contribution.

Thank you and I look forward to seeing you in next week's episode of Seeing Death. Clearly.