SPEAKER_06 0:01

Hello and welcome to End of Life Conversations. In this conversation, we speak with Dr. Marianne Matso, a longtime researcher and educator whose work has explored gerontology, palliative care, nursing, assisted dying, and the ways we prepare for death. Dr. Matso shows shares how an early connection with older adults led her toward gerontology and eventually toward a deep toward deeper questions about death and dying. Her research also examined the experiences of nurses involved intentionally ending a patient's life, raising difficult questions about assisted dying, nursing ethics, patient suffering, and the responsibilities of caregivers.

SPEAKER_02 0:48

Yeah, it goes way back to well before people were talking about a lot of this thing. So we also talked to her about the often overlooked human and human side, basically a palliative and end-of-life care, the importance of listening, which we talk about a lot, compassion, communication, and really just being present with someone who is dying. Together, we asked why we tend to wait until people are seriously ill before teaching them how to talk to about death. That's what we want to do every day. That's right. Helps. So this is this is really this is for nurses, caregivers, death care professionals, educators, writers, artists, pretty much anyone who's ever wondered how we can become better prepared for one of life's most difficult and universal experiences. That's right. So yeah, as usual, the central question isn't simply how we die, it's how we care for one another while we're while we're dying and while we're caring for the dying. So stay tuned.

SPEAKER_06 1:45

Stay tuned.

SPEAKER_02 1:47

Hello, everybody, and thanks for joining us. I am the Reverend Wakil David Matthews. Today we are honored to speak with Dr. Marianne Matso, who tells us that she was always has always wanted to work with the elderly and spent her life really. Um in nursing schools, she or nursing, actually, she noticed that often nurses seem to be a little more present for patients than the docs who are kind of trying to get things fixed, right? Um, she went on and she achieved a doctorate in gerontology and became a licensed and registered nurse practitioner and wrote one of the foremost books about palliative care in nursing.

SPEAKER_06 2:24

Hello, I am the Reverend Mother Ana Luisa Armandadis. Dr. Matso is the host of the podcast Every One Dies. And just to point out, every is spelled out, and then number one and dies, which is a weekly podcast where she invites guests to become to come and discuss all aspects of dying, whether she is hosting a pet psychic or interviewing a deathula, or speaking honestly and openly to someone who might be struggling to come to terms with their own mortality. She is the author of Everyone Dies, a children's book meant to for both caregiver and children to help find the words to discuss death. Her website and podcast are inspiring and full of excellent resources. And Joaquila and I hope we can continue to have conversations with her in the future.

SPEAKER_02 3:18

Yeah.

SPEAKER_06 3:18

That'd be perfect.

SPEAKER_02 3:19

Yeah, we're right along, we're right along the same journey here. Um, yeah, that website, I was just uh looking at it again, and I will highly recommend it. Of course, we'll put the uh links in the podcast notes. So be sure to check it out, check out her book. And really good to have you here.

unknown 3:34

Yes.

SPEAKER_06 3:35

Thank you. Thanks for inviting me. Welcome. So we begin this conversation with uh the curiosity around what inspired you to begin this line of work.

SPEAKER_01 3:50

I don't even know that I know.

SPEAKER_00 3:55

You know, I um I grew up in um Lincoln Park, Michigan, which is a small suburb of Detroit, and uh went to Catholic school. My sister was a nun, and I was part of the Legion of Mary, which in the Catholic churches for you know young girls uh to do volunteer work within the community. And I was assigned this elder woman to go and visit. And I found that I just loved going to talk to her. And I was really, I don't think I was even in high school yet. And um one of my best friends in the neighborhood was the elder lady who lived behind the fence from me, and we would, you know, I'd I'd go out and put her in my mother's, you know, flower beds and and talk with Mrs. Smith. And I always loved talking to her and listening to her volunteer work at the VA hospital and that kind of thing. So I don't know if I was born an old soul or if it was just these different experiences that I had growing up, but I really always appreciated and loved being with my grandparents and being with older adults. And as I got older, I I I mean, I always knew I wanted to be a nurse. And as I got older, it was like, well, you know, go I went to nursing school, and then it was, I got my bachelor's, and then it was, well, what am I gonna do for my master's degree? And I met with the guidance counselors, you know, and they said, Well, what do you like? And I said, Well, I kind of like old people. And they said, Well, there's gonna be a lot of them. So that would be a great thing for you to do. So I got my nurse practitioner in in gerontology, and through that road and through talking with people, one of the things that I would always advocate for was within curricula or within teaching about gerontology, is that gerontology and deaf and dying always went hand in hand in the curriculum. Those were the last two things ever studied. And I would say lots of people die at all different ages. Why are we focusing this on just older adults?

SPEAKER_04 6:13

Yeah.

SPEAKER_00 6:14

And um and so I kind of, you know, that my thinking became, you know, got into that area. And I got my master's in gerontology. And one of our projects, one of our beginning research projects was a qualitative study where we had to talk with people about um nursing homes and you know, and nursing home planning and nursing home long-term care insurance and how people are planning to pay for that. And this is back in you know, the mid 80s, early 80s. And and I don't know that we're really any better about that, but that's another story. But one of the people I interviewed said, you know, there there's a fate worse than death. And to her, a fate worse than death would be to go to a nursing home. And that kind of got me thinking about, well, what are the fates that are worse than death? You know, what are the things that people would say, I don't want this.

SPEAKER_04 7:18

Yeah.

SPEAKER_00 7:19

And, you know, at that time, Kovorkian was doing his thing in in Michigan. And so that kind of, you know, reading about that and the people that he was helping and how he was helping them. And I started thinking about as a gerontologist, how do we help people make plans or prepare for the end of life? Well, that wasn't happening. Um, this this is pre-even advanced directives. So so these things are happening as my brain is going to school and thinking about these things. And so when it came time to do my dissertation, I just had this moment of Kavorkian, and then there was all the talk about physician-assisted suicide. And I thought to myself, physicians aren't really assisting people suicide. They're not even there when people are dying. And I thought, well, why aren't we talking about nurse-assisted suicide? Don't nurses do this?

SPEAKER_04 8:29

Yeah.

SPEAKER_00 8:30

But there was nothing in the literature at that time. This was probably maybe 85, 1985. There was nothing in the literature. There were there were there were articles about what do nurses think about assisted death, but not do nurses assist death?

SPEAKER_04 8:48

Yeah.

SPEAKER_00 8:48

So I did the first study of nurses practice, if you will, practice, or um actions related to assisted dying.

SPEAKER_04 9:00

Wow.

SPEAKER_00 9:01

And I replicated a study that Zeke Emmanuel had done of New England, he had done a study of New England oncologists and asked them, have you ever taken an action to intentionally end a patient's life? So, not did you give them pain medicine, not did you do anything else? Right.

SPEAKER_05 9:22

Did you do any action? Yeah.

SPEAKER_00 9:24

Did you specifically do something to end this person's life? And I said, we need to ask nurses that. So I contacted Zeke, who was in Boston, and I said, Can I replicate your study with New England oncology nurses? Get your data and compare it to the physicians. So he said, Yeah. So I did that. And um it got an incredible return rate, a 73% return rate on a mail-in survey, which is unheard of.

SPEAKER_04 9:56

Right.

SPEAKER_00 9:57

And it just said nurses have been waiting for someone to ask.

SPEAKER_04 10:01

Oh, yeah.

SPEAKER_00 10:02

And what we what we found was that 4.5% of the nurses in the study admitted to taking a specific action to end a person's life.

SPEAKER_05 10:14

Wow.

SPEAKER_00 10:15

And that was three times more than what the physicians reported. And we have to assume that if 4.5% of the population admitted to it, it's probably more than that.

SPEAKER_04 10:29

Double.

SPEAKER_00 10:31

Because it's certainly not less than that.

SPEAKER_02 10:33

Sure. Yeah.

SPEAKER_00 10:34

And, you know, and I had it was designed so that it was completely anonymous. I mean, we protected their privacy with double mailings and all this stuff.

SPEAKER_04 10:44

Yeah.

SPEAKER_00 10:45

They were protected. I didn't know who anybody was. And could there'd be no way for me to know who anybody was. And so it was fascinating that, you know, because it's the nurse who is there at the bedside. It's the nurse who the patient's gets attached to. It's the nurse that the patient's gonna say, can you end this for me?

SPEAKER_02 11:07

Can you help me? Yeah. Yeah. Yeah. Yeah. So true. Yeah, I've noticed that in um, you know, I've been doing care for my wife for two little two and a half years now or so as she goes through palliative care and and um yeah, the nurses are who shows up. And the best of them are the ones who show up and spend time actually sitting with you and just talking, you know. Um and that's that's even rare now because they're everybody's in a hurry, you know. But um, we had one, we had a nurse come in and sit with us who was most of the nurses nowadays are like my kids' age, right? They're all very young. And um and but this woman was more closer to my age, and she came in and she spent a long time with us and just she knew the chart up and down. She talked about all sorts of things that nobody, you know, she'd taken the time. It was really impressive. She had taken the time to really learn about my wife and about everything we've been through. And um we were so impressed by that. And we talked to the chaplain and the next time we were there and asked her about that. And she said, Oh, yeah, she's the best. And she said, in fact, she's here. And she came and she went out and told her that we were liking what she did. And and she came back in again and spent more time with us. So that's a rare thing, you know, as you are, I'm sure well aware. Um, I'd like to hear more, I'd love to hear more about the um nonprofit and the work that you've been doing. Um how um yeah, and the book too. So it's every every one, number one dies. Yeah, how's that?

SPEAKER_00 12:32

Well, that's that's our website. Our website is everyone dies because somebody had the one with the ones spelled out. So, but but we're called Everyone Dies all spelled out. But the website is ev e r y the number one dies.org.

SPEAKER_03 12:47

Yeah.

SPEAKER_00 12:48

Um, so I retired at what was I 62 when I retired. But up until that point, I had been thinking about what am I gonna do when I retire? Because I started working when I was 15 and I worked full-time my whole life. So as much as I wanted to not work, I couldn't imagine myself not working.

SPEAKER_04 13:11

Yeah.

SPEAKER_00 13:12

And so um as I was doing the probably the last 10 years of my work, I was started a uh supportive care, palliative care um clinic at our cancer center. And I was working um four days a week in oncology at the VA medical center. And I so I was seeing patients in clinic and the questions that they would ask, and they would say, I don't understand that. And I'd say, well, let me explain it to you.

SPEAKER_04 13:47

Sure.

SPEAKER_00 13:47

And I'd explain it to them, and they'd and the comments I would get would be like, nobody's ever explained that to me that way before.

SPEAKER_04 13:53

Right.

SPEAKER_00 13:54

And I thought, well, I don't know, maybe they did, but what I know about people is that sometimes you need to hear it a few times before it kind of really gets in. And sometimes you need to hear it from a couple different people before you really begin to understand it. And so I thought, you know, like you were just saying, with hospice, the nurses don't have time. And when I worked in hospice in the late 1990s, early 2000s, reimbursement was very different. We could spend as much time as we needed to spend with people. Yeah, that is not the case anymore. No, and many hospices are now for profit, yeah, which makes how much time is spent even more about the money.

SPEAKER_04 14:46

Yeah, yeah.

SPEAKER_00 14:47

And so I know even in clinic, you know, patients are booked 15 minutes apart. And that is supposed to include you're looking over the record, see what's been going on, meeting with the patient, doing any teaching you're supposed to, and then um somehow charting. I mean, right, none none of that happens in 15 minutes. Right. If you're seeing four people an hour. So I understand people's frustration with, you know, they don't spend enough time with me. They don't talk with me. And, you know, we I'll tell you, we wish we could.

SPEAKER_04 15:21

Yeah.

SPEAKER_00 15:22

Um, and often we do, and then we're there very late at night charting. So and nobody's paying us for that, let me tell you. So I I thought, well, wouldn't it be nice to have a resource where people could get the information and they could listen to it as much as they want. And then if, you know, like and we're a very mobile society. So um, you know, if you've got kids or family members in other parts of the world or other parts of the country, yeah, they should be able to hear the same information that the nurse has given them. But how's how do you make that happen? So we decided to start this no pro nonprofit called Everyone Dies to give people that opportunity to learn about all these aspects of serious illness, dying, how do you die? How do you plan for your death? How do you how do you grieve? And is any of the things that you're feeling when you're grieving normal? Which is yes. But you when you're grieving, you feel like you're a little bit insane because all these different feelings are coming up. And so we thought, what wouldn't wouldn't that be like a great resource?

SPEAKER_04 16:40

Yeah.

SPEAKER_00 16:41

And so we started Everyone Dies and um started with the podcast. And so we've been doing that, we're in our seventh season now. So there's probably about 320 or so podcasts on 320 different topics.

SPEAKER_04 16:58

Yeah.

SPEAKER_00 16:59

And um, I'm still not out of topics because there's because there's really there's really a lot to go on, you know, in the in these areas. And so um that's the resource that we offer. And we don't we don't charge for it. It's there for for people to use. Uh, we have people all over the world um who download the podcasts. And and some people do use it exactly as we thought. We got a letter from somebody who said his um hundred-year-old mom was at the end of life. There was a brother out in California, a brother in Michigan, and I don't know, a sister someplace. And they had decisions to make, but not everybody could be there when the nurse was there to say, all right, let me talk to you about, you know, food and fluids at the end of life. So the one in out in California had to depend either on getting accurate information from their brother and sister, or I don't know, going on the internet or whatever, however, they did it. But he he knew about this resource. So he said to his brother, go and listen to this. We're all going to listen to this. So they could all be on the same page with the same information in terms of making decisions for with their hundred-year-old mom.

SPEAKER_04 18:21

Wow.

SPEAKER_00 18:22

And I thought that was great. That's how that's what we wanted it to be able to do.

SPEAKER_02 18:28

Yeah.

SPEAKER_06 18:29

But an incredible family, too. Like that they all said yes to doing that little homework.

SPEAKER_02 18:33

Yeah, yeah. That's a great, great resource. I was I was, you know, I really love the resources page that you have that is really is laid out by subject and has all different um podcasts that you have done on that subject. You know, caregivers, living well, symptom management, grief. I'm just looking at it, disease education, aid in dying, end of life, palliative care. I think we're probably going to steal that idea from you. Um because it's beautiful. It's really well done. And and uh so thank you for all of that. I appreciate that a lot.

SPEAKER_00 19:05

And that's our producer, Sandy Troop, who does all of that.

SPEAKER_02 19:09

She's that's the other part. We love we love having helpers. We wish we wish we could afford more helpers.

SPEAKER_06 19:15

Yeah. Um I'm gonna go back to your origin story too, because I was thinking back to the Dr. Kavorkin times too, and how I've been called Dr. Kravorkin, like from random people. I'm like, I don't think so. I think that that is because there's a miss. First of all, I feel like it's a fearful thing that people imagine Dr. Kvorkin was doing. And anything around death and dying is immediately kind of cast into that like as scary, as weird. But you know what else was going on during that time was Terry Schiavo. And I'm wondering, Terry Shaivo was 90s through 2000 something.

SPEAKER_00 19:54

Did you like it? I looked it up. I'm I'm thinking in my head it was a little bit later than Kavor.

SPEAKER_06 20:00

Cavorgan? Yeah, you it was, but it was 1990 was when she got placed in the uh in the hospital. But I was really as as you were going through and talking about the the the nursey situation, like how many nurses also engage with that family and that person and what were their thoughts? And I almost wonder like, uh, isn't wouldn't that be interesting to talk to nurses as they're holding space for these folks that that's in a litigious environment, you know, about you know, quality of life and also so, anyways, I yeah, I went online and I I thought about that because I feel like in my my mind and my brain, these two are kind of like linked somehow. But anyhow, uh going back to our process here, what are the challenges that you find when you're working well when you're talking about death and dying?

SPEAKER_01 20:56

On our podcast, Jamie? Yeah, yeah.

SPEAKER_02 20:59

Or life.

SPEAKER_06 21:00

Or life, your books or yeah, any aspect. What's the toughest thing?

SPEAKER_00 21:07

Well, I I I think one thing was when I well, before I learned to lie a little bit, um, like I would it would travel, you know, and something you know, your seat mate would say, you know, oh, you know, what do you do? I said, Oh, I'm a nurse. And what kind of nursing do you do? I saw I work with people at the end of life. And then after it's happened a few times, is when I started lying, is that you know, and then what inevitably, oh, then you're gonna love this story.

SPEAKER_04 21:40

Yeah.

SPEAKER_00 21:41

And then they would tell me generally how they um killed their mother or killed their father, pull the plug on their parent.

SPEAKER_05 21:51

Okay.

SPEAKER_00 21:52

Now, I suppose I could let that go, but I can't, and so there I am. It's like, okay. So then I have to say, did you really kill your parent? Or did you do what they asked you to do? That's right.

SPEAKER_05 22:11

Exactly. Yeah.

SPEAKER_00 22:12

And well, you know, well, th that's what they said they wanted, but I had to make that decision. I said, Well, you carried out the decision that they would have made for themselves if they were able to, but they weren't able to, and they trusted you to do it for them. I said, So it seems to me like you did a tremendous act of love because it's not what you would have wanted, but you knew that that's what they wanted.

SPEAKER_04 22:41

Exactly.

SPEAKER_00 22:41

And so it's it's hard, you know, you're traveling somewhere to, you know, unwind.

SPEAKER_04 22:47

Right.

SPEAKER_00 22:49

To to go into that. But it needs to be said. I mean, you can't they I don't I I'm not the kind of person you could drop that on and then I'm gonna not get engaged. Be quiet about it. Like, how can I? They think they they're carrying around this guilt of I killed my mom.

SPEAKER_05 23:06

Wow. Yeah.

SPEAKER_00 23:07

Or my dad, you know, and and so after a few times of that, I I would just say, Oh, I'm a housewife, I'm a mom. And no nobody really wants to engage and hear about your kids.

SPEAKER_04 23:21

So, you know, that kind of ends things right there. I love that.

SPEAKER_00 23:26

And you know, so that that's what's hard is the misinformation. The, you know, like I talked to um uh a friend of mine once about she had a college-age daughter, and I said, Oh, have you know, has she gotten the um HPV vaccine? She's no, no, she's never gonna have sex. And I said, Come on. Man, you know, if she hasn't already, she's never going to. And it's like, it's so hard for me to just not because you know, at the cancer center, I saw so many HPV-related cancers. And if if kids are vaccinated before they're sexually active, we could wipe out, we could wipe out cervical cancer. We could wipe out cervical cancer.

SPEAKER_05 24:17

Wow. Wow. Yeah.

SPEAKER_00 24:19

And so it's like things like that where, you know, I just wish I was better at being quiet, but I'm not. Mary Ann.

SPEAKER_04 24:29

Yeah.

SPEAKER_06 24:29

I feel you because I'm yeah, by yeah. You're our You're not quiet either. You're our elk. No. And I don't want I want to be quiet, but you just can't. Wait a minute.

SPEAKER_02 24:42

Yeah. Well, we were just talking a minute ago and we did in our thing we did this patch about you know how important it is as people in this crazy, crazy world to be brave and courageous and kind and uh vulnerable enough to actually step into something like that and um and help, you know, be be of service by saying, you know, maybe there's a different way to look at this, or or maybe, you know, so so thank you for that. And and I I get it. You know, it's like Aunt Luisa and have talked about you know people don't invite us to to a dinner party. Anywhere I think you told me too, Annalise, about being on a plane and having a book on grief, um, or somebody or being in an airport. I've had that happen too, where somebody will see a book I'm reading.

SPEAKER_04 25:29

You're reading that.

SPEAKER_02 25:30

Yeah. Yeah. And then they want to know what we do. And sometimes it's easier to just say, well, you know, I I'm a stockbroker, leave me alone.

SPEAKER_04 25:38

Yeah.

SPEAKER_02 25:39

But you know, Annalise, didn't you talk about one time telling somebody and they'd literally turned around and walked away?

SPEAKER_06 25:45

Yeah, I had this uh this young man who pursued me. I I walk in the mornings without my phone or anything. And for a while he's he would see me walking and he'd always ask for my number or take my number because he was very interested. And and finally one day, after like a year and a half, I saw him uh on the street corner. I was like, I'm gonna stop and just see who this person is because you know, maybe I I should be dating. Let's let's do this. And uh, you know, he told me about what he does, and then he's like, So what do you do? And I and I thought about it's because I'm like, I'm a chaplain, I do a death midwifery, I'm a substitute teacher, I'm a mom. You know, I there's a there's a whole slew of my grocery list of what I do. But I was like, you know, I actually am working a funeral home because I do that too. And and he literally did this. He's like, oh, oh, oh, oh. And he retreated. And I was like, oh man, I should have said that a year and a half ago. Really? You gotta remember that line. That's a litmus. Yeah.

SPEAKER_04 26:46

Yeah.

SPEAKER_06 26:47

Exactly. Oh man. Oh, but I like you, Marianne. I talk about things and you don't have to talk about death because we know. Right?

SPEAKER_02 26:57

Yeah, well, I'm wondering, uh and we like to ask folks if there's anything that um frightens you about your end of life at this point after this many years and working in this world.

SPEAKER_01 27:09

I think I I think what what would frighten me or what frightens me is that people won't pay attention to my advanced directive.

SPEAKER_04 27:20

Yeah. Yeah.

SPEAKER_00 27:21

Or they won't pay attention to the, you know, like I've done my advanced care planning. I've cleaned out my house. And in fact, a couple weeks ago, my daughter texted me and she said, What are you doing? I said, I'm cleaning up some junk so you won't have to when I die. She said, Thanks, Mom.

SPEAKER_04 27:43

Yep. Yeah, yeah.

SPEAKER_00 27:45

You know, so I've done I've done that so it's not hopefully won't be too hard on them. Um but what if, you know, like they don't listen to me and they do extraordinary measures that I don't want. Yes, yes. So I've told them I will haunt you to your death if you don't listen to me. Love it. There you go. That's really true I think maybe they're sufficiently frightened of me that they'll listen because they'll think if anybody could haunt us, it'll be her.

SPEAKER_06 28:21

Oh my gosh, you really are my sister. That is so great. I love it. You know, it's funny because last night I had my friend over and she's been my advanced care director of proxy. And I did mention to her, I was like, you know what? I have to update the list of people I don't want to be in the room with me when I'm dying. You know, ex-husband, my parents, like, like I was like, you have to know this. I I want to make sure you understand, like, if I wherever I'm at, they should not gonna be allowed to come into the space. So that's what I worry about. Like, don't don't mess my vibe up. I'm dying happily.

SPEAKER_00 28:53

They can just put some sage in your hand and you can just hold it.

SPEAKER_02 28:58

As a shield. Yeah, yeah. Yeah. Uh yeah, I I we have heard stories. We've heard horror stories. And I know of a pr personally know of one with um some of our relatives who um their parents, their mother specifically said, uh, no, you know, DNR, don't don't res don't resuscitate. I'm I'm ready to go. And but when she wasn't able to make her own decisions, they specify they said, no, we're not doing that. You know, keep her alive, keep her alive, keep her alive. And so she suffered for another two weeks in pain and dealing, you know, in instead of being allowed to just die. And and it was and then the other scary statistic that kind of is indicative of that too is the one that's over sixty percent of siblings never talk to each other after their parent dies. Um because of the fact that you know they they haven't had this conversation. They have and then they end up having battles over what they wanted and what they didn't want, and of course the the money part, et cetera. But well, um yeah, so great, great point. Thank you for sharing that. And I I think I share that fear most people who know about this stuff. I think maybe the number one fear that we have is that people will ignore what we've very obviously said about what we want to have happen.

SPEAKER_06 30:10

Yeah. I'm also gonna draw a little separate point because it my sister who passed away, it's it's been like six, seven years now. I can't believe it's been that long. But uh sh I was her health proxy, her her voice, and she had always said, Never, ever, ever will I have dialysis. And so when her kidney, her only kidney, was giving up, um, that was a choice, like comfort care or dialysis. And my parents showed up and they, you know, and the doctor asked me because I was on all the paperwork, and I said, It's comfort care, like this is it. And my parents were very angry, and my dad to this day resents that I killed his daughter, right? Like it's like you could have chosen differently, you could have forced her to have dialysis. And he even said, he's like, if she had made me that proxy, I would have not honored that. And I'm like, which is why she didn't choose you, right? Like uh, and so you know, we can also do the right thing for the person and have the ramifications continue in the future, right? Like it is a thing. So pick wisely. Yeah.

SPEAKER_00 31:20

Well, and and I and I think that that's an important part. And if if you listen to the podcast about advanced directive or advanced care planning, I am always talking about it's not like ooh, this is my favorite daughter, so I'm gonna choose her to be my durable power of attorney. I tell people all the time, don't pick your family. Yeah, pick no, I'm serious because the family has that relationship with you. And you know, like when my sister was dying, I just wanted to be her sister.

SPEAKER_06 31:55

Yeah.

SPEAKER_00 31:56

But I couldn't because she had wanted me all throughout her her cancer trajectory to to help care for her. And so I I couldn't just be her sister because that's not what she wanted or needed at that point. And so asking your child to decide that you're not gonna have dialysis is like, how do I do that to my mom? Because it's their feeling. But if you have a nurse friend or, you know, somebody else who can say and and actually it helps, it helps for people to write it all out, where you can say, look, here's what they said.

SPEAKER_05 32:47

Yeah.

SPEAKER_00 32:48

They asked me to do this because they knew it would be hard for you. And so I'm gonna do it because not because it's easy, but because it's hard. And you can grieve the loss of whoever this is.

SPEAKER_04 33:02

Yeah.

SPEAKER_00 33:02

And then that way the person who's dying can say, All right, I picked the person who can do this hard work. It's not like, oh, I'm the favorite, so I get to pick. You don't it's it's it's a very hard role to have if you're gonna do it the way it's intended, which is the whole idea of substituted judgment, doing what this person would do if they could do it for themselves.

SPEAKER_04 33:26

Yeah.

SPEAKER_00 33:28

And that's where the education part comes in. That's where our podcasts come in to say, oh, I never really thought about it that way before.

SPEAKER_06 33:38

Right.

SPEAKER_00 33:39

Maybe it's not such a good idea that my mom is my durable power of attorney.

SPEAKER_04 33:44

Right, right.

SPEAKER_00 33:44

You know?

SPEAKER_04 33:45

Right.

SPEAKER_00 33:46

Because that's an awful thing to ask them to do.

SPEAKER_06 33:49

Well, and and I I I am gonna hold space for some of us who could do it, right? Like, yeah, I think I think the because I was my sister's person and my family is not in a healthy space to be able to just, you know, and they're Christians and they're like, you know, what they were waiting for something to happen or whatnot. But I I believe that if my kids said that, like, mom, would you be mine? I would be like, not a problem. Like, I have there's not a whole lot of other people around me. We talk about death ad nauseum in this family. And so everybody would actually have been told and been on the same page. Right. In my sister's case, she didn't have a really good relationship with my mother, and my father never wanted to have her die. And she trusted me because we had I had been there through years and years of all these hospital visits. And so, yeah, so it would have been great. You're right. I would have gotten to have a very different experience with her death as a sister, and yet I'm very honored that she trusted me. And I really, I was like, this is what she wanted, Neil Diamond playing while she was dying. And my parents actually walked in and turned it off, and I was like, Nope, we're turning back on. And so I am proud of myself for having followed all the things that we listed, right? So I think it's every family, but you know, generally I would say, yeah, find somebody outside the family.

SPEAKER_02 35:15

And uh and and we when I and when I do we do a class as well, and when I do it, I kind of say the same thing, you know, is think of somebody in your life that can do that, will be capable of doing this. And and maybe it is somebody in your family, you know your family, but um often it's not, and it needs to be somebody that you know is capable and knows what you want. And the other thing now, I'd be interested to ask you about this because it's come up over and over again in the podcast and in the classes. Several times or many people just tell me they don't have anybody in their life like that. They live either they live you know without any connection to family or they live in a rural area all by themselves, or and and we actually started in a nonprofit just with the idea of somehow helping people find uh fiduciary or people that could do that work for them and hopefully not at a huge expense. And the nonprofits part of the nonprofit mission is also to um create uh to to get grant money to help people with the affordability part of it. Because, you know, that's the other part. People will say, well, yeah, I know I could hire if I had a fiduciary or a lawyer or something, but I don't have any money for that, you know? So um I don't know. What have you run into that? Have you had do you have any ideas and solutions for that?

SPEAKER_00 36:26

I I have run into that, and it's frustrating. I I remember I had a lady in hospice who wasn't able, you know, to make decisions for herself. And so I looked at her advanced directive, called the person who was listed there, and this woman said, I didn't know that I was listed.

SPEAKER_05 36:49

Yeah.

SPEAKER_00 36:50

And I said, Okay, um, did she ever talk with you about what she wanted? No, she was my neighbor, and I've since moved to Florida. I'm like, holy heck, what am I gonna do now? You know, it's like she, I mean, she literally had never had a con this. I'm sure at some point somebody said, Well, you need to put somebody down, and she thought, Oh, I'll put my neighbor down.

SPEAKER_04 37:12

Yeah.

SPEAKER_00 37:13

But then never talked to the neighbor, never said, Hey, if any of this ever happens, here's what I want.

SPEAKER_05 37:22

Yeah.

SPEAKER_00 37:22

You know, um, we had a family friend who did the same thing and put my father-in-law down as her durable power of attorney. And as it turned out, she got really sick right after his brother died. So he was like, I can't even think about this.

SPEAKER_05 37:41

Right.

SPEAKER_00 37:42

And he said to me, he said, Well, you just make the decisions. I said, Well, what does she want? He said, I don't know. And I'm like, Well, how am I supposed you know, like, so I just figured, you know, I I just I said, Did she did she want or says, did she want any of this? He says, No, I don't think so. So we just went with that, you know?

SPEAKER_03 38:07

Yeah.

SPEAKER_00 38:08

That's not how it's supposed to work. Yeah, but that's how it works sometimes. Yeah, yeah. And we should.

SPEAKER_05 38:15

Yeah.

SPEAKER_00 38:15

Yeah. So if if you've if you've got a neighbor or friend or the checkout girl in the grocery store who you talk to, well, no, you know, or think about, you know, think about these people. Who do they have? They have, you know, maybe somebody at the bank or or their postal carrier or somebody, and you say, well, they've known me. They've delivered mail in my house for 20 years. Well, then talk to them and say, would you be willing to do this for me?

SPEAKER_02 38:42

Exactly. Yeah. Yeah. And then tell them what you want. You know, don't just I know George's name.

SPEAKER_00 38:49

I'll just put George down here. And it's like, no, please don't do it that way.

SPEAKER_02 38:53

Yeah. Yeah. Well, part of our suggestions are to have a death party once a year. And um, because you don't want to just put this up on the shelf and forget about it either, because it changes, right? So you keep it as a dynamic thing and and have everybody over that you expect to be involved with this and make sure they're on the same page with you and haven't changed their mind or you know, move to Florida, you know. Right. Um, so that's yeah, that's so important. And thank you for for really note noting that. Because I think we can't say that enough and to our audience and to the people we work with. And I'm so glad you're doing this work. It's the more people we meet that are doing it, the better. So really great. Um so let's see, where are we?

SPEAKER_06 39:34

So yeah, the resourcing. So uh on days that it's a lot of stuff that's going on, either personally or with the podcast and death and dying, how do you take care of yourself? How do you get back to resources, resourcing and grounding yourself?

SPEAKER_00 39:49

Well, I have a garden that I'm I'm well known for. Any house I move into, the grass quickly disappears. Amen.

SPEAKER_04 39:59

Amen to that. Yes.

SPEAKER_00 40:00

And I I put in a garden and I also carry my plants from how, you know, pack them up and move them. And so um I I get my hands in the dirt and I make things grow and bloom and be beautiful. And that nurtures my soul tremendously. And um so that's like my main thing. And it's been something I didn't even start as a kid, which is kind of weird for kids to do, but I did, you know.

SPEAKER_06 40:33

You you you were hanging out in your in your backyard in the garden and talking to your neighbor.

SPEAKER_00 40:37

Right. So now I I'll sit, you know, I'll be out in the garden and either sing show tunes or talk to the dogs, or you know.

SPEAKER_02 40:47

Definitely my kind of person, yeah.

SPEAKER_04 40:49

Yeah, yeah.

SPEAKER_00 40:51

That's what that's what that's what I do.

SPEAKER_02 40:53

Singing show tunes. I love that. That's great.

SPEAKER_00 40:57

I don't know if the neighbors appreciate it, but oh well. It makes me happy.

SPEAKER_02 41:03

Yeah. That's all that matters. That's so good. So good. Well, this has been really great. We really appreciate you so much and the work you're doing. And of course, as we said over and over again, you are kind of people. Uh-huh. Is there anything you wish we'd asked about that you'd like to share before we're done?

SPEAKER_00 41:19

Well, if I can mention the children's book, you did ask about it, but I didn't answer you. So um one of my thoughts about why people are so afraid of death and dying is that it's under this cloak your whole life. And then somehow along the way, you're supposed to say, Oh, okay, and now I'm supposed to start thinking about death. And I would like, if you know, somebody ever put me in charge of the world, I would like for us to normalize death. That's right, we talk about birth and that we talk about death, that we that children know that there's, you know, you know, they've seen The Lion King, they know there's a circle of life in a cartoon, but that circle of life is true.

SPEAKER_04 42:09

Yeah.

SPEAKER_00 42:10

And that we're all born and we all die. And there's lots of stuff that happens in the middle, but those two things everyone does. It's like, you know, and poop. Everyone poops along the way. So yeah. So I've wanted while I worked, I for a long time, I wanted to do something to help normalize that for children. And so um in retirement, I had this experience with my grandson where we were in Cancun and he found a crab leg and we're walking along the beach and we're looking at how the crab leg articulates and talking about it. And he said, Where's the rest of it? And I said, Well, I think if you lose a leg, you, you, you die. I don't know. And he said, Oh, so you think he's dead? I said, Well, yeah, because you know, there's only three reasons people die. You die because you're very, very old, very, very sick, or very, very hurt. And the crab was very, very hurt. So yeah, I'm thinking maybe that's what happened. He's like, Okay. And he was about four. And um our son comes back, you know, from his jog or something. He's a huge marine, and he says, and Jack shows him the crab leg, and he's and Marcus says to him, Oh, and did the did the rest of the crab go home to his mom? And Jack says, No, Daddy's dead.

SPEAKER_02 43:39

Oh, that's great.

SPEAKER_00 43:41

And I get this look, you know, like, oh yeah. You've been ta you've been talking to Marmar, huh? And so when I went home, I said, I think that's the book. And so I contact a friend of mine from kindergarten. Who's a wonderful writer. And so I said, here's the story. I mean, I wrote the story, but I'm not a writer. You know, I'm an academic writer, but I'm not a children's book writer. And um, and so sh she helped take that and make it into a children's book. And so the book is available on Amazon and Barnes and Noble, and we have a website for it. If you want an autograph copy, we have autograph copies. And it's a simple book, probably I would say anybody from wherever you start reading to kids to maybe about 10, but even older kids would probably benefit from the message. And what we wanted to do is to give parents a language where they could talk to their kids about death. Because kids, kids say, and they get it. Why did the dog die? Why did why did this bird die? Why did grandpa die?

SPEAKER_04 44:53

Yeah. Where did they go?

SPEAKER_00 44:54

And parents come up with very scary answers that are not accurate. You know, grandpa went to sleep. And you know, you say that to a kid of a certain age, they're not going to want to go to sleep.

SPEAKER_04 45:08

Yeah.

SPEAKER_00 45:09

Right? Or, you know, grandpa went to heaven. Well, he went to heaven. Well, why would he want to go to heaven when he could be here with me?

SPEAKER_05 45:17

Yeah, where is it?

SPEAKER_00 45:18

That doesn't make sense.

SPEAKER_05 45:19

Yeah.

SPEAKER_00 45:20

You know, so ours is the book is not does not get into religious aspects at all. That's, you know, I think that's for parents to do. But what we as academics can do is say, here's a way you can talk to your child. And I always talk to my kids that way, you know, about death. And they'll still say they're pushing 30, they're real close to 30. And they'll still say, are they very, very sick? Because that's our language. Yeah. Very, very sick means they're dying. Or, you know, they're so you know, and I'll say, Oh, they're no. Or yes, yeah, they're very, very sick, or they're very, very hurt. And the very, very is very, very important because, you know, like the kids would say when they were younger, they'd say, Well, mom, aren't you old? Like, yes, but I'm not very, very old.

SPEAKER_02 46:18

You know? I love that. Yeah.

SPEAKER_00 46:21

Or, you know, like if you say, Oh, I feel so sick, are you very, very sick?

SPEAKER_02 46:25

No.

SPEAKER_00 46:26

Just sick. That's really lovely.

SPEAKER_02 46:27

I really like that. That's great. Yeah, thank you. Good, great language. Yeah, definitely, folks, definitely get a copy of the book or check out the book. Um, we I have a uh friend, one of the people we interviewed a while back, family bellier, who created and this happens so often. So often we talk to people who have noticed a need and have then addressed that need, right? And this woman um lost her son and her brother in like a very short time and was looking for resources for it and couldn't find any. And so she built these little libraries and called it the grief library, and she puts grief books in there that are labeled as different kinds of grief. Um, and there's one nearby here. So um but that that's you know that I I definitely just m gonna make sure we have a copy of that book and put it in there if we haven't already. I'm just gonna be great. She's got a great website too, where she puts all the different books and quotes from them. So um, so definitely that needs to be there along with our resource slot. Um, thank you. Yeah, yeah. Well, thank you again.

SPEAKER_06 47:33

Thank you. Yes, thank you.

SPEAKER_02 47:41

Yes, pay attention. Watch your podcast and uh subscribe and live, you know, like and do all that stuff. Yeah, all that stuff, whatever it is.

SPEAKER_00 47:50

Yeah.

SPEAKER_02 47:51

All right, thanks so much.

SPEAKER_00 47:52

Thank you for having me. Yes.

SPEAKER_02 48:02

Thank you for joining us today. Thank you to Charles Heastan, the composer of the original music you are listening to now.

SPEAKER_06 48:09

And of course, thanks to you, our audience, and all of our amazing guests. Please come back next week for another great episode. Share this with your friends, family, and community. We hope you will subscribe and follow us on YouTube, Facebook, Instagram, Blue Sky, and Substack. Each guest's additional information will be found in the podcast notes. And of course, if you have a good end of life story to share, please reach out. We're always eager to hear from you.