#43 - The Conversation No One Wants to Have With a Child

What do you say to a child who asks, “Am I going to die?”

This week's caller is a physician who works with children who have cancer and has training in pediatric palliative and hospice care. In this conversation, she shares what it’s like to talk honestly with families about death. Including a story about having to tell a seven-year-old patient that she is going to die.

This is a heavier episode. The subject matter is difficult, and the conversation doesn’t shy away from that. But it’s also thoughtful and full of compassion. The call stays with what these moments actually require: clarity, presence, and care.

We talk about how children understand death and why avoiding these conversations often makes things harder. It's a conversation I promise you won't forget if you are in the right headspace for it. 

In this episode:

• Talking with children about death and dying
• What it means to tell a child the truth
• Pediatric oncology and palliative care
• Being on both sides of the hospital bed
• End-of-life conversations with children and families
• The absence of language for parents who lose a child

Book Recommendations: The Hitchhiker’s Guide to the Galaxy (Douglas Adams); American Gods (Neil Gaiman)

If you’d like to watch this conversation instead of just listening, you can find the video version on YouTube.

Chapters

• 0:00 Opening And Episode Framing
• 1:06 Sponsor Message And Legacy Journaling
• 1:39 Content Warning And Emotional Setup
• 2:33 Caller Intro And Motivation
• 5:22 Personal Loss And Training In Palliative Care
• 8:30 Belief, Calling, And Medicine’s “Higher Power”
• 9:58 Icebreakers And Books As Windows
• 11:31 What Happens When We Die
• 13:37 A Daughter’s Grief And A Father Of Science
• 16:04 Switching Sides Of The Bed
• 19:15 Food, Fluids, And The Dying Body
• 23:00 Home Hospice Realities
• 25:18 How To Talk With Dying Children
• 28:45 Telling A Seven-Year-Old The Truth
• 33:14 Choosing Time: Home, Disney, And Parties
• 36:56 Values, Trials, And A “Good Death”

Transcript

SPEAKER_00: 0:00

I am a physician and I I take care of kids who have cancer and also have done training in pediatric palliative and hospice care. And so I do a lot of work with kids and families who are having to think about and talk about end of life and what that looks like. I say all the time, like my job is so weird because when I talk about it with other people, it's like I have friends who are engineers and friends who are teachers, and I'm like, I talked to a 12-year-old today about what happens when you die.

SPEAKER_01: 0:33

It all starts with a single question asked to an anonymous caller. What do you think happens when we die? And from there, the conversation goes in completely unexpected directions. Some speak with certainty, others with doubt, some are still trying to make sense of it all. I'm Zach Ansel, and this is When We Die Talks, a podcast about death, meaning, and how that shapes the way we live. This podcast was born from my own fears around death and the need to talk about. Thank you for being a part of this conversation. I'm glad you're here. This episode is brought to you by Woven WordPress. One day, your name will be written on a family tree. Just a line between two dates. But who were you between those years? What did you love, learn, overcome, become? The Fabric of Me is a guided journal to help you capture the stories, memories, and meaning behind your life. So you're more than just a name to those who come after you. This thoughtful, crafted book is an heirloom piece intended to outlive us all. Leave something real. Begin your story at wovenword.net. Hey, welcome back or welcome here if this is your first time. I want to say up front that this is one of the more emotionally challenging conversations I've shared. Our caller is a physician who works with children who have cancer and has training in palliative and hospice care. A small spoiler alert, but also a careful heads up. The call reaches its most intense moment when our caller shares a story about having to tell a seven-year-old cancer patient that she's gonna die. I won't pretend that it's an easy listen. I teared up during the call and cried while editing it. But conversations like this show just how much care and humanity can exist in moments like this and how many people are out there doing this incredibly difficult work. We talk about what those conversations actually look like and what becomes possible when honesty and care are present, even when the outcome can't be changed. It's a really difficult subject matter, but if you're up for it, I think this is one of those calls that you'll remember for a long time. I know it's one I won't forget, and I'm so grateful for it. Let's get into the call. I hope you enjoy.

SPEAKER_00: 2:37

Hello.

SPEAKER_01: 2:38

Hey, how's it going?

SPEAKER_00: 2:39

Good. How are you?

SPEAKER_01: 2:41

I'm good. Excited that we could finally do this.

SPEAKER_00: 2:43

I know. It's only been like 17 years.

SPEAKER_01: 2:46

Yeah, that's okay. That's the that's the joy of it, is you can kind of choose whenever you can do it. And and it just so happened it worked out today. And maybe to just kind of kick things off, you could let me know why you wanted to have a conversation about death. You know, it's a topic that a lot of people avoid and don't want to talk about. And you responded to a weird internet post and applied to talk to a stranger. So I'm very curious with that setup. Maybe with that setup you want to hang up, but with that setup, you know, why did you want why did you want to jump on the call and do this?

SPEAKER_00: 3:20

Yeah, so I have always kind of had a lot of fascination with guests, but I think um, like most, I think humans are like, hey, that's like one thing we'll probably never be able to find out everything about. I am a physician and I I take care of kids who have cancer and also have done training in pediatric caliber and healthcare care. And so I do a lot of work with kids and families who are hard to think about and talk about end of life and what that looks like, which is kind of, I guess I say all the time, like my job is so weird because when I talk about it with other people, it's like I have friends who are engineers and friends who are teachers. And I'm like, I talked to a 12-year-old today about what happens when you die. Or you know, I talk to families about where they want to, you know, we we know that this is an uncurable disease, and we know that at some point their child's life is going to come to an end way sooner than we ever thought it would or wanted it to. And what do we what do you want that to look like? What do you the things we have control over, like what is that? And then kind of separately from that, in May of 24, I lost my own dad very okay, somewhat unexpectedly. He was diagnosed with metastatic melanoma in March of 2024 and died in May of 2024. And that was right before I started my training in taught in palliative medicine. So I took the new learning palliative medicine.

SPEAKER_01: 4:49

I usually don't ask questions here, but did that push you into doing that or was that already kind of on the on like the path?

SPEAKER_00: 4:55

So that was already in the all the path. I had I had matched into the program in January before he even got sick.

SPEAKER_02: 5:01

Okay.

SPEAKER_00: 5:02

And never thought that I'd be learning how to do palliative care with like my dead dad in my pocket.

SPEAKER_01: 5:08

Yeah.

SPEAKER_00: 5:08

But uh that's kind of what it turned into. And it made things really interesting.

SPEAKER_01: 5:13

Yeah, no joke. No joke. Well, I would say thank you for what you do. I mean, working with kids, I mean, talking about death is already hard. Working in the death industry can't be easy, and then working with kids going through that has to be incredibly difficult. So I mean, I think you're like one of those those saints on earth for sure. Like that is I I hate to use the term God's work because, you know, that's not necessarily something I believe in, and and that's a maybe a weird term to bring into the conversation this early, but it's definitely very specialized work that only certain people are capable of doing it. And yeah, that's amazing.

SPEAKER_00: 5:50

Well, thank you. I I appreciate that. I I'm not a religious person, but I um I identify as Jewish and I do think that there is something bigger than us out there, but I truly believe that like medicine has been a calling for me and that there are certain people who want to do who end up doing certain things with their lives, and it could be as simple as like I tell my friends who are surgeons, I'm like, thank God you are surgeons, because I could never do that. You know, there are people who do all kinds of things all the time that I could never do. Yeah. But I do think that there's something in people who go into that field.

SPEAKER_01: 6:25

Yeah. Absolutely.

SPEAKER_00: 6:26

I don't know what it is, but it is something.

SPEAKER_01: 6:28

Yeah, totally. It's we'll call it not God's work, we'll call it like higher power work or something. I don't know. But I'm getting I'm getting ahead of myself for sure. Cause I mean, we're definitely I'd be shocked if we don't dive into this stuff in in the main conversation. There's a lot to unpack here for sure. But before we do that, let's do what I would say are the easier questions, but just to kind of have an idea of who you are as a person a little bit, where you're calling from, roughly, like city-state. And then what's your favorite book and why? And everybody usually hates that question. Yeah, exactly. That's that's usually the response. It's like, I was prepared to talk about death. I wasn't prepared to talk about books.

SPEAKER_00: 7:08

So I um I am calling from a suburb of Philadelphia, Pennsylvania.

SPEAKER_03: 7:16

Okay.

SPEAKER_00: 7:16

And my favorite book, you know, I keep like a top five listed in my head, and now I'm trying to remember what they were, which is crazy. So I have this complex issue where like one of my favorite books of all time is American Gods by Neil Gaiman. But then of course all of the drama happened with Neil Gaiman. So now I'm like, can that still really be one of my favorite books? I don't know.

SPEAKER_02: 7:36

I know it's which case so hard.

SPEAKER_00: 7:38

Um this is completely opposite end of the spectrum, but I've always loved the Hitchhiker's Guide to the Galaxy. It's absurd, it's poignant, it's silly, and it just is like it's a great story that I don't think anyone else has ever really told similarly since. Yeah. There's been a lot of like a lot of similar-ish kind of stories, but I really feel like Douglas Adams did it the first time.

SPEAKER_01: 8:01

I've read an American Gods. I haven't read Hitchhikers yet, but another caller, I'd say probably one of the most brutal episodes that I've done. That was his recommendation. So maybe that'll be one of the first books I read this year.

SPEAKER_00: 8:14

Yeah. It's really fun if you read it out loud.

SPEAKER_01: 8:17

Out loud. Ooh, okay. Maybe I'll read it to my dogs.

SPEAKER_00: 8:20

Yeah.

SPEAKER_03: 8:21

Okay, that works.

SPEAKER_01: 8:24

Like, shut up. I'm trying to sleep. Well, amazing. I love the recommendations. And now we can kind of get into the full conversation and just start with the question of what do you think happens when we die?

SPEAKER_00: 8:39

I have thought about this many times. And not just because it's what I covered up in my work all the time. Obviously, all of my patients and families have, for the most part, have some thoughts about it. From a science perspective, I think that you know, energy is neither created nor destroyed, and so it has to go somewhere.

SPEAKER_02: 8:57

Yeah.

SPEAKER_00: 8:58

I think that I used to feel a lot less emotionally invested in what happened because there's part of me that's like, well, as myself, as my consciousnesses right now, won't know, so it doesn't matter. But now I like to think that there has to be some essence of people that goes somewhere because I would be devastated if I never got to interact with my dad again.

SPEAKER_01: 9:19

Do you have an inkling or what do you hope that looks like? That if you get to see your dad again, what what does that look like?

SPEAKER_00: 9:26

I would love nothing more than if I like I would get to physically see him the way I remember him to get to hug him and feel like it was actually his hug. I think a lot about that movie's What Dreams May Come with Robin Williams and what everyone's heaven looks different. And, you know, maybe it's a cop-out, but like I hope that what happens when we die is whatever you hoped would happen when you died.

SPEAKER_01: 9:47

That's come up a couple of times, and I it's not something I ever thought about before, but I really love the fact that we all are complex individuals. And so why wouldn't we have our own different take on it versus like everybody going to the same thing? And so losing your dad sounds like it was a big, a big one. Like you two are close.

SPEAKER_00: 10:08

Yeah, he and I, you know, everyone's like, oh, my parents are my best friend. Like, no, like my dad was legitimately, you know, I think one of my best friends, and I didn't realize it until I was in my mid-20s to 30s. We weren't super close when I was growing up because I my parents divorced. I didn't live with him. But when I was in high school, we just clicked and it was just, you know, like finding out if your best friend was someone you hadn't met yet, you know.

SPEAKER_03: 10:34

Yeah.

SPEAKER_00: 10:35

But all of a sudden it was just there. And he was like my biggest cheerleader. He knew me better than anyone. He was a definitely a man of science, and I don't think ever thought about what happened when we died.

SPEAKER_03: 10:46

Okay.

SPEAKER_00: 10:46

I think he very much was like, biologically, your body stops working, and after that, nothing like nothing matters.

SPEAKER_01: 10:51

Sounds like my dad.

SPEAKER_00: 10:53

Yeah. It was just a very everything happened so fast.

SPEAKER_01: 10:58

Yeah, it sounds like the timeline was very quick.

SPEAKER_00: 11:00

Yeah, and like logistically, as far as like end of life plans and what he wanted or didn't want at the end of his life was like very in his typical fashion, like logically and laid out and had been all put out together, which is like if I can say one thing for anyone who if you are a person and your life will eventually end, please, for the love of God, write stuff down for what you want to happen or not happen at the end of your life.

SPEAKER_03: 11:22

Seriously.

SPEAKER_00: 11:23

Your family, it's the biggest gift you can give your family. But I think that, you know, neither one of us had a lot of time to process what was happening. And I having been at the bedside of patients and family members who have patients and their family members who have died, and being on what I've now referred to as like the other side of the bed has really shaped how I practice medicine and how I think about what it means when you are faced with now knowing that your life is coming to an end, whether or not that's from a natural old age perspective, or because something has dramatically changed and now things are different.

SPEAKER_01: 11:56

I have so many questions. I think maybe I've had uh one other physician on the show before. And so it is just a different perspective. I mean, you you see death a lot more than the rest of us by a long shot, especially with what you're doing. And so I think there's some stuff that I'd love to get into. I mean, talking with kids about death has to be very, very interesting. And I want to get into that, but I'm also very curious, maybe just to continue the thread that we're on, of what did that shift look like from before and after of this being on the other side of the bed? Because I'm sure that dramatically changed it.

SPEAKER_00: 12:34

It's actually a question that, like, while I was going through it, it's one of those things where like you're in the middle of a situation and you realize that something is going to be different when you're on the other side of it. Um so often I feel like when you're going through something, you don't recognize the changes that are happening. Yeah. But it was just such a huge shift for me to go from being on the group that comes into the room and knows what the plan is and has the answers, and then gets to leave that room to being on the side of the bed where you're waiting for people to come in and tell you what's going on. I think too, there's a tendency, at least in myself, I'm sure other physicians would probably agree and/or like people that I've interacted with, you know, it's our it's not uncommon for us to, when we're discussing a case, be like, oh my gosh, I can't believe that they think that XYZ is going to help, or they just really don't get it. And I remember at the end of his life, my dad had stopped eating, which is a very, very common thing that happens at the end of life.

SPEAKER_02: 13:30

Yes.

SPEAKER_00: 13:30

And that's the thing like I can tell you like day by day what it looks like to have a body die. Like from a biological perspective, I can tell you what that looks like. And knowing everything that I know, like pathophysiologically and from a medical perspective, and things that I know to be true that I counsel other families and patients on, I feel like, what if he just needs nutrition and then he'll start to feel better? Like he's diabetic. What if this? What if that? And it was actually the palliative care team that had key that came in and they said the same thing that I've said to lots of families, which is the body does not need calories and nutrition right now.

SPEAKER_02: 14:04

Yeah.

SPEAKER_00: 14:04

That is not what the body needs. That is not going to help his body. In fact, giving him more fluid and more stuff will only cause more damage to what the process is happening and can cause increased suffering. And it's just hearing it from someone else made me realize how hard it is to hear as a family member. Yeah. Even though knowing that that's what the right answer was.

SPEAKER_01: 14:24

I was gonna say, you're in the perspective of actually being like, this makes sense versus tons and tons of people hear that and say, Well, are you sure? You know, like how do you know? And it's like, well, this is what I do.

SPEAKER_00: 14:37

Starve my dad.

SPEAKER_01: 14:38

Yeah. Yeah, totally.

SPEAKER_00: 14:40

One of my favorite things that I learned about and how what I trained in was doing home hospice, both for adults and for kids, more so for adults, because it's really difficult to find hospice agencies that will take care of kids in the home. It's just hard to find people in the agencies that are equipped to do that. But anyway, the number of conversations I've had about how, no, like when your mom isn't gonna feel thirsty, you know, giving her fluids is not gonna help. It's just gonna go to parts of her body that like her body can't process that fluid right now. And so it was really different and gave me a whole new understanding and kind of respect for the families as they're processing that information. I mean, percentage-wise, we spend a much larger percent of our time trying to keep people alive in our own lifetime than we do at the end of their life. And so it's especially for kids, it's for families, for parents to be like, what do you mean I'm not gonna feed my kid?

SPEAKER_02: 15:28

Yeah.

SPEAKER_00: 15:28

That's like the one thing, like the first thing you do when they get here is try to figure out how to feed them. And at the end of their life, we're like, no, that's not something we're gonna do right now.

SPEAKER_01: 15:37

Oh yeah, that's gotta be brutal.

SPEAKER_00: 15:39

It's a wild experience to have to walk someone through. And now having been on the other side of it too, like obviously I've never had a child die, but having someone that you love, the way that you care for that person at the end of their life is so wildly different from anything else you do during the time they're alive.

SPEAKER_01: 15:55

And so it basically it allows you to kind of step back and and relate to people in a different way now because and again, like you said, don't understand what it's like to lose a kid, but I understand what it's like to lose this person that meant the world to me, my best friend. Uh so you did start talking about it a little bit. Unless you have more to go off of there. I am very curious. There's so many questions diving into this topic of it's gotta be a completely different animal working with kids going through this process because and I and I'm sure you have plenty of patients that you work with that die before they should, but kids. That is like the complete opposite end of not on the regular course. One of the questions that I wrote down almost at the very beginning when you first mentioned it was what do you say to kids? I mean, I'm sure they're asking, well, what happens when I die? What do you say to a kid when they ask you that?

SPEAKER_00: 16:51

So much like every conversation that involves death, I think it's like it depends on the kid. It depends on the family. Like there are some families where like I never have that conversation with the kid because the family does it internally and that's what they want. So I don't know what happens behind those doors.

SPEAKER_03: 17:08

Yeah.

SPEAKER_00: 17:08

I've had conversations where I think the harder ones are where a family doesn't want to tell the kid that they're dying.

SPEAKER_01: 17:14

Yeah, I was gonna, I was wondering about that. Um because if they handle it, awesome. But if they say, I don't want you to talk to them about it because I don't want them to even think it.

SPEAKER_00: 17:23

I will say every kid knows every kid will worry more if you don't talk about it because they don't know what to what will happen and they want to know someone else is thinking about it. Kids need to know they worry that their parents and their family members and their dog if they're gonna be okay. I'm a full believer in the fact that not just kids, but everyone to a certain extent controls the moment that our earthly body does not work anymore. I fully believe that I got to Florida to see my dad that Monday afternoon and he died on Wednesday afternoon after my after my brother and I got there. I don't think he would have died any sooner or a day later. And so I think that having, you know, kids want to know that they're like, what's the one thing a kid wants more than anything is to make their parents happy. You know, they want their parents to love them and they want to know they did a good job, and they want, if a parent isn't in one way or another, saying, like, we'll be okay. I think that's really hard for a kid.

SPEAKER_02: 18:14

Yeah.

SPEAKER_00: 18:15

You know, there's one patient who I half jokingly say is like the day I decided I wanted to train in palliative care because it was the day I told a seven-year-old that she was gonna die. It was one of my primary patients. I had taken care of her for her entire course of cancer treatment. And she had done really well, and then it was a real nasty disease that we knew was gonna be hard to treat, and she had done great, and then all of a sudden, you know, cancer's a jerk and it does what it's gonna do. And so her parents were like, I don't know how to tell her that she that we can't do this anymore. And I said, Okay. Um so they said, Well, can you can you come with us? Can you do it? And I said, I will figure this out.

SPEAKER_01: 18:48

So it was me and is there a little bit like does does your stomach just drop or like is there just kind of like a uh shit? It's like shit. I really wish that you were capable of doing this, but I'm yes, uh hundred percent.

SPEAKER_00: 19:04

I was like, you know, you sign up for the whole thing when you sign up for it. You don't just sign up to cure them, you don't sign up to for all, like, yeah, you sign up for that, but you sign up for like the shitty parts of this too. And you know, it's one of those memories that I will never forget because it was fourth of July weekend, it was the holiday weekend I was working. So it was just kind of a crapshoot that I happened to be on that weekend, and that I was her primary doctor, and it was she was there, her identical twin sister, her younger, her older sister, both her parents, their parents had both her parents had both remarried. So it was like both sets of everyone. They co-parented lovely, it was beautiful. There's there's like 15 people in this room though. And I sat down at the end of the bed and I said, you know, to my patient, I said, Do you know why you came to the hospital? And she said, Well, I I couldn't breathe. And so I had to come to the hospital. And her tumor had metastasized all over her lungs. And so no, she couldn't breathe. And I said, What do you think's going on? And she says, I think it's my cancer. And I said, Yeah, you're right. It is your cancer. Your cancer is making it really hard to breathe because it grew a whole lot. And you know, you did everything we asked you to do, and you did everything. You did all the hard work. You did surgery and you did all this gross medicine and you did radiation and you felt like crud. And you've been amazing. And your cancer just doesn't want to listen anymore. And I don't have any more medicine that can make your cancer go away. And there was this like, could have heard a pin drop in this room. And her sister, who was nine, goes, So is she gonna die? And the whole room explodes. Like it was chaos. Her mom was just like, okay, hang on. And I said, Yeah, I I really wish that I could say that there was any other answer, but no, I the cancer is going this no, like this is gonna happen. Basically, like, yes, you were she is going to die.

SPEAKER_01: 20:50

That's when you that's when you really hoped the sister would be like the comedian of the family and like made a fart noise or something. Like, nah that was like the last that's the last thing that you wanted.

SPEAKER_00: 20:59

It was kind of funny. Like the thing was it was kind of funny because that's what everyone was thinking. And so my patient goes, I don't want to die. And I said, I know, I don't want you to die either. I wish that I didn't, that that wasn't gonna happen. But I can tell you, here's some things I can tell you. You know, you don't have to stay in this hospital. I don't know when the cancer will come, will come, make your life come to an end. But I do know that you will not be alone. We will make sure that nothing hurts, and we will always be here if you do want to come back to the hospital. And of course, in the midst of all this, there's like people crying and people laughing. And her mom was like, We're I'm like, I'm tearing up, like, yes, your doctors will cry with you, and that's okay. And her mom stands up and she's like, This is insane. And like every it's just like it was it was complete chaos. But it also was like, it just blew open the lid of this thing that people don't talk about.

SPEAKER_02: 21:52

Yeah.

SPEAKER_00: 21:52

And it made it okay for everyone to freak out and scream and cry and then come up with a plan. Because the next thing was, okay, well, what now? Because there's always, especially in pediatric oncology, you know, there's always someone somewhere who will probably do something else. Because no one, as an oncologist, I can say this, we're really bad at saying no. We're really bad at stopping because no one wants a kid to die.

SPEAKER_02: 22:14

Yeah.

SPEAKER_00: 22:14

But the most important thing at that point was for me to say to the family, knowing the time is short, what do you want this time to look like? You know, do you never want to come back to the hospital ever again? Do you want to make sure that you've done, do you want to do crazy intense chemo? And you know she's gonna be in the hospital forever and she's probably gonna feel like crap, but maybe it'll give you more time. But I don't even know how much more time or what that time will look like.

SPEAKER_03: 22:38

Yeah.

SPEAKER_00: 22:38

Should I look for a trial? And they said, We don't ever want to come back to the hospital. And I said, Great, I can make that happen.

SPEAKER_01: 22:43

Yeah.

SPEAKER_00: 22:44

And we got her home that day.

SPEAKER_01: 22:46

That seems like the best answer. And I mean, it's hard to say, but yeah, it seems like the right thing to do.

SPEAKER_00: 22:51

And it seems like the right thing to do. And I think the hardest thing is when a family picks something else that I wouldn't think is the best thing.

SPEAKER_03: 22:56

Yeah.

SPEAKER_00: 22:57

But that is a feasible option.

SPEAKER_03: 22:58

Yeah.

SPEAKER_00: 22:59

And so really it's like, what does this family value? And if that family, there are some families that need to know that they did literally every single thing they could possibly do.

SPEAKER_02: 23:07

Yeah.

SPEAKER_00: 23:08

Because at the end of the day, they're the ones that have to go home and live with the fact that their child has died. And that's really hard. Because if I I look at that situation, I'm like, well, that's not what I would want. That seems like a miserable existence, but that's not my child. And so she got to go home that day. She and her family did we got to expedite her make a wish. She went to Disney with her entire family.

SPEAKER_01: 23:27

Nice.

SPEAKER_00: 23:28

She was home for six weeks, and they were like a good six weeks. She was an amazing seven-year-old. She said to her mom, I'm not gonna turn eight because her birthday was in like several months. She goes, I want a birthday party. And they had a birthday party every week.

SPEAKER_01: 23:41

That's awesome.

SPEAKER_00: 23:42

They had an everything party. They decorated their house for every holiday. It just meant like they controlled all of that time.

SPEAKER_01: 23:49

Yeah. What a brutal story.

SPEAKER_00: 23:52

It was brutal, but it also made me really like kids can handle that if they have the right support. And it's different with teenagers. You know, I've had teenagers who, you know, they're straight up terrified. They know more.

SPEAKER_01: 24:03

Yeah.

SPEAKER_00: 24:04

Yeah, more aware.

SPEAKER_01: 24:05

Or they've read about it or and have more self-awareness, right? A little bit more like identity.

SPEAKER_00: 24:11

And I think like those are the ones everyone everyone has an age where they're like, oh, it like hurts to take care of these kids. And I'm like, the teenagers are the hard ones for me because they're the ones that are just about to like start their grown-up lives. They have like enough history that they have like a life story and enough wherewithal to know that like this isn't the way it's supposed to happen, and enough of a frontal cortex to be afraid.

SPEAKER_02: 24:32

Yeah.

SPEAKER_00: 24:32

So I think you know, when you're talking to anyone, I think the most important thing is to just say the words, to say, like so-and-so, you know, your child is dying. I think that it's really hard for people to say that because it sucks. Or, you know, your mom is dying, your sister is dying. And that's just, I mean, there's no way around it. It just sucks.

SPEAKER_01: 24:51

Yeah, it's gonna suck no matter what, right? I feel like anytime anybody mentions the hitchhiker's guide as their favorite book, I'm just gonna hang up. Um because I was like basically in basically like on the verge of tears. And I know when I go back and edit this, I will definitely cry for sure.

SPEAKER_03: 25:08

Oh, I'm sorry.

SPEAKER_01: 25:10

No, I mean it's that's also part of being human, right? And like feeling the emotions. And there's something beautiful about hearing that story because it's devastating, but it's also so beautiful that this child had this support from their family and they did all these beautiful things. You know, I don't want to continue to like give you too many compliments. I don't know if it might all go to your head, but like that there are people like you that are are there to support people and that you have been through difficult times and are able to take that and bring it into these conversations and these situations and help these families.

SPEAKER_00: 25:44

I mean, I will say, as soon as I walked out of that room, I went back to the workroom and I burst into tears.

SPEAKER_01: 25:49

Oh yeah.

SPEAKER_00: 25:50

I mean, that was because there was nothing else to do.

SPEAKER_01: 25:52

Yeah.

unknown: 25:53

Yeah.

SPEAKER_01: 25:54

I mean, that was kind of my next question a little bit is like, how do you take care of yourself after something like this? Besides a really, really good cry.

SPEAKER_00: 26:03

I think that, you know, medicine is getting better at this, especially after patient deaths or emergencies that you've dealt with where patients are not doing well or you've had to run a code or something. Like people are in medicine have realized, like, oh, we just can't expect people then to close the door and go do the next thing with any reasonable amount of mental or or physical safety. And so I think that uh talking about these experiences and making it not norm, I guess normalizing it is normalizing, like, yeah, I had a lot of feelings about this patient and talking to my mentors about, you know, what was the first, you know, this is what happened, and I'm having, you know, these feelings about it, or sometimes you have a conversation, you're like, wow, I really messed that one up. Like that did not go as well as I wanted it to. Yeah. Um, and I think just allowing myself to acknowledge just how sad it was and that it's okay for me to have that depth of feeling and that to say if the next patient that comes up is like, you know, oh, this one, this patient needs a primary doc. Like who is available slash, you know, who wants to take this patient? Like I've definitely heard docks be like, hey, like I can't take another patient with XYZ because I just dealt with, you know, who whatever. Or oh, I can't, I don't, I can't go see that consult in the neonatal ICU because like I've just had too many losses with kids in the ICU right now. And just being upfront and open with the fact that like we are all people who all have hearts and brains and souls, and you know, we can't run like machines because we're not.

SPEAKER_01: 27:31

Yeah, and having that awareness that you're having these emotions and stuff is it's a good guide mark that like I'm human, I am still like doing the right thing or whatever. Like, if you didn't go and cry after this, like that would be concerning, right? Like if you didn't act like absolutely break down, it'd be like, this maybe is cause for concern and maybe I shouldn't be doing this anymore. Or like, yeah, you know, like I need to figure some things out.

SPEAKER_00: 27:56

Yeah. And, you know, some people I will say, like, you know, I had friends in in med school in residency who were like, nope, I can't, like they would lose a patient. And they're like, nope, that's not not something I can do on a regular basis. And like it directs what you end up choosing to do with your life. And it's not like I have, you know, a fondness for dealing with these horrifically depressing situations, but I also feel like kind of like what you said when we started talking, was there's something in me that can withstand this. And I say to all of my patients and families, like it is, I truly see it as a privilege and an honor to take care of patients, especially at this part of their lives. Death and end of life and dying is so intensely personal and so internalized process, especially for the dying person. And to be in that space is really more of a it's a sacred space.

SPEAKER_01: 28:47

Yeah. Thank you for sharing that. I'm kind of curious to maybe like bring the conversation back around and just have these experiences changed how you feel about death. Maybe that is the question versus has this changed how you feel about what happens when we die?

SPEAKER_00: 29:04

Yeah. I think just a, especially the last year of my training where I was doing palliative care, like I thought about death a lot. It was kind of my job. I think that uh part of what drew me to it was not just the medical part of it, but I've always been someone that in order to like, you know, whether or not it's uh false sense of security or not, but like if I understand it, I can make it less scary.

SPEAKER_03: 29:27

Yeah.

SPEAKER_00: 29:28

Like, not even just for other people, but like for myself. And not that I was someone who was just like, oh no, I'm afraid of dying. I think it's just someone who is like an anxious person at baseline. Of course they're going to worry about things like that, because everyone does, because no one knows what happens. Many people say no one has come back to tell us.

SPEAKER_02: 29:43

Yes.

SPEAKER_00: 29:44

So I think that uh it's made me appreciate the candor that you can have, both while you're fully living and both and when you approach end of life. I think that it makes me more willing and able to engage with just the idea of being a mortal person. And that, you know, someday there will be an end to this physical body. And what do I want that to look like? You know, I've seen a lot of different ways that people can die. And what do I, knowing what I know, what do I want to tell my family and my loved ones to to make decisions with? You know, who do I want to make those decisions? What do I want those decisions to be?

SPEAKER_03: 30:21

Yeah.

SPEAKER_00: 30:21

And some of that's like uh there's always gonna be like an unknown because at some point you're gonna have to determine someone else that is gonna make a decision and you're not gonna be the one to do it. And give them the most information you can about what you would or wouldn't want. And uh I think just when I think about death, I now I try to think about it as just it's another part of life, which sounds really simplified. But as I've had to explain to my own young children about I have two kids who are in elementary school age, and you know, we've had a cat die, and then they saw me with my with the death of my father, and just talking with them and ask answering their questions, and just kind of like you with this podcast and making it a safe place to speak freely and ask big questions and say things that kind kind of sound insane sometimes. It just takes the fear out of it. I don't think we'll ever make it something that's completely fearless.

SPEAKER_01: 31:07

Yeah.

SPEAKER_00: 31:07

It's always going to be unknown to some extent.

SPEAKER_01: 31:09

And unknown is is scary.

SPEAKER_00: 31:11

Unknown is scary.

unknown: 31:12

Yeah.

SPEAKER_01: 31:14

It does make me very happy to know that like there are people like you out there that are it's not like you're trying to make it scary, right? It's not like you're trying to shout from the rooftop, but it's that you're being honest and open with the conversations. And I genuinely feel like if we did that more as a society and a culture, the more we destigmatize it and and normalize it. And it's weird to say normalizing death, but it's almost really weird to think that we don't normalize it because it is the most it's no the most normal thing. I was about to I was about to say the exact same thing.

SPEAKER_00: 31:50

And I know, right? No, I think that like there is a such thing as a good death. And that does look different for everyone and for every family. And that was one of the things I noticed the most was people, loved ones whose families, you know, who this is more so in adult medicine when I was doing adult hospice, but they're afraid to ask what happens next.

SPEAKER_03: 32:10

Yeah.

SPEAKER_00: 32:10

Like, how long is this gonna take? Which sounds so callous, but sitting vigil is one of the hardest things a family will do.

SPEAKER_02: 32:17

Yeah.

SPEAKER_00: 32:18

And it's brutal.

SPEAKER_03: 32:19

Yeah.

SPEAKER_00: 32:20

I mean, I was, I feel incredibly grateful to have been at my dad's bedside when he died. But it was almost 72 hours of like what's happening. And so a lot of times I'd say, like, would it be helpful if I talked about what the timing might look like? Or would it be helpful if I talked about things you might see as the body goes through this process? And every single time people said yes.

SPEAKER_01: 32:42

Yeah, this is maybe more of like a hypothetical question, but it almost feels like, is it superstition? You know, I feel like there's this like, if I bring it into the to the ether or to the universe, then it's gonna happen and it's gonna be my fault or whatever. And I think that goes top to bottom talking about death in a lot of in a lot of ways is Oh yeah, there's a lot of superstition of, well, if you talk about it, then you're bringing the forces of death towards you or whatever.

SPEAKER_03: 33:05

Yeah.

SPEAKER_01: 33:06

Um well, I have one last question for you. I feel like we've talked very practically, maybe, is a way of saying it. Very, very in the in the the heart of death itself. And so this might be a little bit more, I don't know, out there or whatever. I don't, I don't know. I'm not good with words. I was a math person. What's one thing a podcast? I know, seriously. What what was I thinking? Um what's one thing you still want to experience in this lifetime? Another easy question.

SPEAKER_00: 33:41

Yeah, definitely. You know, I it's like one of those things where I'm like, uh you're trying to be like all all like deep and totally introspective about it. And I'm like, I don't know, I kind of want to see a kiwi bird in real life.

SPEAKER_01: 33:57

No, that's I think that's I think that's awesome because we've had this like such like a deep emotional conversation that I think that's the perfect answer. So yeah, I love the Kiwi bird answer. I love I think that's a perfect answer. I love it. Thank you so much for doing this. I'm so grateful that you were willing to take the time and share your stories and just be so open. Like I said, it's a perspective that I haven't had a ton on the podcast. So it is really interesting to see kind of the other side of it to some extent. But I think also just a really, really hard topic in talking about child death. That's yeah, I think there's like categories of things that kind of come up and it's, you know, okay, so we don't want to talk about death as is as a society.

SPEAKER_03: 34:46

Yeah.

SPEAKER_01: 34:46

And then we also don't really like talking, you know, if we then separate it out and we don't necessarily need to separate it out, but we don't really like talking about suicide. Like that is, yeah, we don't want to talk about that and not comparing and not putting levels or anything. But I think child death is also a thing that we really don't like to talk about because it is just both of those cases, it's very counter to what we think is the natural order of things. And so we don't talk about these things. And one of the byproducts of that is then those families that have these things happen to them feel really isolated. And so I think having a conversation like this, hearing from someone who is familiar and has dealt with this is really, really important. So I I I just want to say thank you for sharing your voice, lending your voice, and being part of this.

SPEAKER_00: 35:34

Sure. I think just if I can say just one more thing you when you mentioned about um not talking about it, you know, there's no if you lose a a spouse, then you're a widow, and if you lose a parent, then you're an orphan, but there's no single word in the English language for a parent that's lost a child. And more recently I read there was an article somewhere about a word from Sanskrit Viloma, V-I-L-O-M-A-H.

SPEAKER_03: 35:59

Okay.

SPEAKER_00: 36:00

And it means against the natural order of things. And it's often used to describe a parent who's lost a child.

SPEAKER_01: 36:07

I think that's a beautiful way of saying, I mean, tragic, but I think that's a beautiful way of phrasing it.

SPEAKER_00: 36:12

It needs a word.

SPEAKER_01: 36:13

Yeah, it does. Well, it sounds like you read it somewhere, but maybe this will help blast the word out. I mean, I don't know. I'm not really that cool or any popular, but hopefully someone who someone who needs it will hear it. Yeah. I'm glad that you added that in there at the end. So thank you for doing that. And again, thank you for everything.

SPEAKER_00: 36:31

Thank you. This has been great.

SPEAKER_01: 36:32

Yeah. We'll definitely stay in touch. I hope you have a good rest of your day.

SPEAKER_00: 36:36

Thanks. You too for us.

SPEAKER_01: 36:38

This was a call about six months in the making. Our caller was one of the first people to apply to me an anonymous caller, but it just took a while for it to get scheduled. You may have heard me mention in recent episodes, but I've changed up the application process for the podcast. So now I normally have some idea of what a call is going to be about. This one wasn't like that. I came in having no idea that this is what the conversation was going to be about, and I was certainly surprised. I can't thank our caller enough for being willing to show up and share these stories. I think this is one of those conversations where you just have that natural instinct of, what would you even say? And now we have a better idea. It also continues to reinforce the idea that we do need to normalize these conversations. Whether it's with a child or someone in their 80s, it's hard to see how anything good comes from avoidance. Oh, and this call finally inspired me to pick up the Hitchhiker's Guide to the Galaxy. But after this call in episode number 35, I'll definitely take a few deep breaths the next time I have a caller say it's their favorite. Thanks for listening to this episode of When We Dietalks. These conversations don't offer answers, but they do open space. Space to reflect, to feel left alone, and maybe to see things a little bit differently than before. If you'd like to explore your own beliefs out loud, you can apply to be an anonymous caller at WhenWedietalks.com. And if a full call feels like too much, the voicemail is always open. Leave a message at 971-328-0864 and share whatever death has stirred in your life. Listener support truly helps keep this project going. If you'd like to support the podcast, you'll find a link in the show notes. And as always, please like, share, and follow. Every bit makes a difference. Until next time, have a good life.