Episode 55: Demystifying Death with Hospice Nurse Julie & Katie Coleman

Patient From Hell (00:01.13)
Hi, everyone. This is Samira Daswani, the host of the podcast, The Patient From Hell. We have been wanting to record this episode for a very long time, and I am very excited to have with me two guests, one of whom you've met before. So I have Katie Coleman back on our show, and we have Julie, who is a hospice nurse, a very famous hospice nurse, for some of you who might know her already, on our show as well. Welcome, guys.

Katie (00:23.723)
Thank you.

Katie (00:28.898)
Thank you. I'm very excited that we have Julie on this episode. I've told this to Julie before, but as I was learning to cope with my own disease and death, that Julie was like the person that probably had the biggest impact on me when I found her videos, so I'm very excited for us to all be chatting here today.

Hospice Nurse Julie (00:49.581)
Thank you so much for having me and so nice to finally meet you virtually.

Katie (00:56.918)
Yes.

Patient From Hell (00:59.822)
Julie, should we start there? Should we talk about death and how the topic of death got you to enter Katie's life?

Katie (01:10.119)
Just starting off strong.

Patient From Hell (01:11.99)
No, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no

Hospice Nurse Julie (01:15.842)
the only thing I want to talk about. So yeah, I'm a for those who, for those of you who don't know, which are I'm sure many people, I'm a hospice nurse, and I've turned a death and dying educator on the internet probably a couple years ago, pretty randomly. I just sort of started posting on tik tok about death and dying facts that most people don't know

that I took for granted being a hospice nurse. And I learned that because two of my friends' parents were dying and I was just sort of rattling off these things that I just knew about, that I say in my everyday life at work. And their response to me was like, "'Whoa, how do you know this stuff? Where is this coming?' And I forget that not everyone knows the things that a lot of healthcare workers know. So I started making videos on TikTok and people were interested.

And I think that's not, not I think I know that's how Katie and I met. And now I am still a nurse. I'm still a hospice nurse. And, uh, but now I also do the social media thing where I educate about death and dying to decrease fear around death and dying.

Patient From Hell (02:31.742)
Thank you. I have a lot of questions. Katie, if you have questions, jump in. I know this is a topic that you and I have like spoken about at least on this show before. And it is something that we both normalized.

Katie (02:31.863)
yet.

Katie (02:41.451)
Yeah, I was just...

Yeah, I was just going to add that, like how Julie and I found each other as we kind of dive into that is, I think we might have shared this on the last podcast that we were on together that we recorded. But the, so I had, we did a very large surgery for me that like nobody thought that I would ever end up having. But the goal of that surgery was curative intent from when I had started at a place that I was incurable.

And so I had a whole lot of hope tied up into the fact that, okay, if I get through this massive surgery and somehow end up surviving, like I might be cured. And so three months later, when we found that there was residual tumors left in my liver, so the call that got communicated to me was that they had found new spots. And because it was kind of like a brief, like just trying to give you an update before the records hit your chart.

And so the words new were used instead of residual. And so I panicked thinking if new tumors popped up in, I actually think it was like a two month, actually my initial scans that showed that were only one month, I believe. And so when I had found that, I was like, if new spots came back in a month, like that means this is very aggressive and I'm not sure how much time I've got left. And so I went from being on this like high of like,

"Oh, I could possibly be cured," to like the plummet. Like that was worse than my initial diagnosis because I thought like, okay, this is it. And I got really fearful of death and I was spiraling and I didn't wanna go back on treatment because I was currently healing from my surgery and in like one of the worst places physically and mentally. And so I started looking into what it was going to be like to die and trying to browse resources. And that's when I came across, which felt wrong.

Katie (04:38.154)
in the first place, like it felt wrong, like I was giving up to even be able to look those things up. And eventually I found hospice and then started looking for hospice information on TikTok. And that's where I came across Julie and hearing some of her stories just brought this like immense peace to me. And it transitioned from a like, I'm terrified of death to hearing some of the ways that it could be like very peaceful

to how you pass or like meaningful, even though you're dealing with something terrible at the same time, that like completely transformed my fear of death. And then that honestly like inspired a lot of my advocacy because I was able to move past the like crippling fear that I was feeling from death and be able to like translate, kind of move past that into to more things. So I know that's a little long ways to start it, but I wanna share with everybody like the impact that.

Julie has had sharing because I know I'm not the only patient that has felt that way from watching her videos.

Hospice Nurse Julie (05:39.002)
Katie, really quick, I know you have told me this before, but that still is, my heart is like exploding and I just feel like I felt like I found you. And for anyone who hasn't watched Katie on TikTok, you are so vibrant and you're so articulate and you're so good at explaining everything that's been going on with you or that went on with you that I forget

Katie (05:41.934)
Thanks for watching!

Hospice Nurse Julie (06:06.786)
that you had those moments or probably still continue to or whatever, right? I do too. I mean, everyone who thinks about their own mortality will have moments like that. And then to have it be so intense and so real. And it's just, I forget, even though you've told me, I still, it's like, you know, it doesn't hit you until like in this moment where I'm like, oh, wow. Wow, she really, I don't know. It's just always so mind boggling. Thank you for sharing that again. Even though you told me, it still really means a lot in this moment.

Katie (06:21.582)
I'm sorry.

Katie (06:35.231)
Yeah.

Hospice Nurse Julie (06:36.802)
right now. So thank you.

Katie (06:39.038)
Yeah, it's all like we all have a ripple effect and an impact on each other. And I just, I love that we can all get together and even have this conversation. Cause I'm hopeful that like, maybe this will ripple out and help other patients in the same way that I've been impacted by that.

Patient From Hell (06:41.159)
Okay, so.

Patient From Hell (06:57.782)
So I guess I have a question for both of you. There was something that you both said that I think have a sort of similar thread, right? There's this fear that comes when you start thinking about it, start exploring death. I'm assuming, be it your own mortality or, Julie, in your case, when you're talking to family members, someone else's mortality, that they may be worried about or fearful of. And then there's this transition that happens from deep fear to acceptance, meaning.

I'd love for you guys to talk about that. Like what's that transition like and what gets you from fear to meaning to acceptance.

Katie (07:37.91)
Yeah, do you want to share first, Julie?

Hospice Nurse Julie (07:40.926)
Sure. So just from what I've witnessed, that was like one of my main things I wanted to help people understand is everyone is different. Not everyone will get there. But the main thing I saw was that the people who are willing to do something like what Katie did, which was like look up hospice, find people on TikTok that are talking about death and dying, feel afraid.

and say I'm afraid or I don't want to die or I can't believe I'm going to die, whatever those like really, really scary sentences are to say out loud and to even face and to accept, because we can deny our own fear all day long. We live in denial all the time, including me. Um, so anyone that I saw not do that, just even, um, cry or say I don't want to die or throw a fit, right? And

be pissed off, be willing to say I don't want to or I'm afraid to, and then be willing to even just educate yourself a little bit or even just the awareness around the feelings seems to be the step to the transition place where you could get to a place of acceptance. Maybe not completely, right? But there's something about being aware and acknowledging.

those really scary feelings and saying the things that you're afraid to say. Something about that seems to transform it. So that's been my experience.

Katie (09:16.394)
Yeah, and for me, it came from when... So first it felt wrong. I felt like just as a society, we have a hard time talking about death. Understandably so, it's hard, right? It triggers not only our own fears, but it also triggers emotions and sadness from people that we've lost. And so they're difficult conversations to have. But it felt like, especially because there's so much of the fight mentality around cancer, that saying that to anybody else felt like I'm giving up.

and it felt like I'm not willing to fight. I'm letting people down. Not only am I now dealing with the crippling anxiety of death and dying, but now I'm also dealing with the crippling anxiety of letting people down by even saying and acknowledging those feelings. And so for me, I couldn't process those things with other people. And so my husband was there watching me fall apart, and thankfully he knows what I need when I get into those situations. And he was like, I'm gonna give you space. So I went into the bedroom.

And I like cried for like all day, right? As I was like spiraling down this rabbit hole and trying to learn as much information as I could before like I got to a place where I had processed it enough to have some conversations with him. But for me, it came from like, first I was terrified to like look into anything. Like it just felt like I was doing something wrong by like trying to investigate what it was like to die.

But then once I got over that, I also like where I personally found a lot of peace is when I started hearing about near death experiences and end of life visions that Julie often talks about. And part of that was because I had an experience when I was in the ICU after I had passed out after my surgery. And I don't think that I had like a near death experience, but I did have an experience where

something that I can't explain very well. And I share it personally with people very often, but not super publicly, but it made me think that there's probably more to life. And I'm not somebody that is particularly religious, I grew up religious, but I would consider myself like, maybe more spiritual now, or I have my own relationship with God or whatever we want to call the higher power.

Katie (11:39.118)
I think what everybody else, what everybody believes is very specific to them, which I think also makes death and dying taboo, right, is because everybody has different beliefs. And so I think it's like, I had to decide what that very personal relationship was going to be like, or what I thought was out there and next for me. And so when I saw some of the things like my great grandmother passed and

she had kind of like a near death experience that really aligned with a lot of the things that Julie was describing with like end of life visions and stuff that people were having. And that was a couple of years before she passed. And then I had this own experience in my own. And then I kept hearing how aligned a lot of these experiences were, and they were all very peaceful for the most part. And so like that made me, I'm usually somebody that researches things to like the nth degree, which I tried to for this stuff. And like,

got to a certain point where I was like, I don't feel like there are solid enough answers. And then I also hit a pivotal point of like, if there are, I don't know if I want to know them. This might be the one area that I'm like, I'm, I have a lot of peace in not knowing. And in just knowing what I do know. And so I'm going to just, I could be wrong about it, but I'm going to let that be what it is. And so that's what that transition looked like for me of like,

there was this terror, there was a lot of like taboo of like, if I'm not religious, like what happens to me when I die, or if I am religious, like, and even having these conversations with other people feels wrong because one person might believe in God and somebody else doesn't. And so it compounded all that to me. And when I abstracted myself away from all of that and just thought like, you know what, it doesn't matter what anybody else believes. Like we all have this common theme of like,

We're all scared to death and we all want something better to happen in those final days. And that's kind of the piece that I came to from it all.

Patient From Hell (13:42.998)
Okay, so I have to ask guys. Okay, so let me maybe take a tiny bit of a step back. So I like Katie and Judy, I know we've just met, but Katie and I have had many, many conversations and I feel incredibly grateful to have her in my life. And we both sort of tend to be similar, I think in this regard, which is very data-driven, very science-oriented, like read every paper, every clinical trial, like just before, when you joined, you walked into Katie showing me her

fully robust information set of all clinical trials in the area that she has a disease in, right? So I think we tend to skew sort of in a similar archetype. So to hear Katie say that she found peace in the absence of clinical data, to hear her say that she found acceptance in a place of incredible uncertainty.

And it was heavily driven by an end of life experience for, I'm paraphrasing, I know that's not exactly what you said, but that moment of the end is not the actual end. And then to hear her say that she found that solace from some of the work you've done, I would love to spend some time hearing a bit more about what you've seen happen, especially as a hospice nurse. I'm assuming you've seen this multiple times for many, many years across many families.

probably different religious backgrounds. So just a little bit more on what have you seen from the end of life experience? How have you seen it be truly peaceful for the most part? Just a bit more on that would be great.

Hospice Nurse Julie (15:21.122)
Yeah, I would love to. So I feel like I want to scream it from the mountaintops because, um, so I've been a nurse for 15 years, just so everyone knows my background. And I was an ICU nurse for most of those years, which Katie has been in the ICU before. And many people, the ICU is a wonderful place, intensive care unit, you, many people make it out of the ICU because of the advancement of health care. Right? So it's amazing. And

I've also seen the awful parts of the ICU, which is where we really try to keep people alive no matter what at all costs. We don't talk about, and I'm being very general here, so not everyone, but it's not really talked about death and dying. People do die in the ICU, but it's usually not talked about. And it's usually...

for lack of a better word, pretty gruesome, because we're trying so hard to keep them alive for so long and we can do so many things with so many different machines to try to do that, that in the end, it's just like, oh, you know, it's just hard. So doing that for years and years and years made me be like, this can't be the way we're going to do this end of life thing. Like if someone's going to die, there has to be a better way. And unfortunately, there are, well, unfortunately we're all gonna die always.

And another unfortunate thing is there's certain diseases where you're likely going to die from them. So if that is the case How can we better serve this person? I'm gonna get to the question you asked I promise It's kind of long-winded We have to better serve the person who has this diagnosis that is terminal And I don't think doing everything possible to keep them alive is the thing because there's far worse things than death and that's suffering

I think from what I've seen. So that took me to becoming a hospice nurse. And then once I was a hospice nurse, I needed a couple years to kind of like see, because it's such a shift in your brain when it comes to being a nurse, when you're so used to doing things to save someone's life, to kind of taking a more passive, not completely, but a passive role in how their body is going to do this.

Hospice Nurse Julie (17:42.61)
And it was fascinating and amazing. And it made me so passionate about educating about death and dying. Because what I saw was talk about data and science. That made me feel like our bodies are miraculous. Like what I've learned over the years, but the first two years specifically, when I was really watching many people die what I would call a natural death. Even though you were dying from some thing.

you were allowing the body to die naturally, was that our bodies were built to do it. Our bodies without us even trying will do things to help us die and make it peaceful. They make you not hungry or they, the body, the body makes you not hungry. The body makes you not thirsty. The body makes you sleep. Um, the more you do that, the more you get in that cycle of not eating, drinking, and sleeping,

your body goes into a ketosis cycle, which is different. It's not different than the diet, but the diet you're still eating, and it's, so separate those two. But you can go into a ketosis where you actually feel euphoric. You actually have a natural pain analgesic that makes you feel better. So just biologically, to me, it is like miraculous

to have learned that being a hospice nurse and to see it with my own eyes. So like as an ICU nurse, you get so zoned in when you're in healthcare about like which section of healthcare you're in, you know? So you're so used to like being a certain way in an ICU nurse, giving all the fluids, doing all the things that you don't learn the other things, at least I didn't. So to see this shift in how like being dry or being dehydrated

at the end of life is actually helpful. I never would have known that as an ICU nurse. But, and then to see it with my own eyes is like, holy crap. Sorry, I was gonna swear. Like, holy crap, our bodies are so amazing. And then, on top of all that, you see things like visioning, right? Visioning is something that seems like woo-woo when I talk about it, right? But it's...

Hospice Nurse Julie (20:07.318)
It's not, it's a part of the death and dying process. Not everyone experiences it, but so many people experience it that it's literally a part of our educational books to talk to families and patients who are dying. Because people will start seeing dead relatives, dead loved ones, dead pets, anyone that was meaningful and comforting to them during their life that has already died will start coming to see them.

Or like sometimes it's spirits, sometimes it's angels, depending on what they believe, right? But it happens so often that it's a part of the educational process and as healthcare workers, as a hospice nurse, once I hear patients saying that, we know they're about a month away from death. So it's usually about a month before they die. I'm sorry, my voice. I didn't realize it was good. I haven't talked this much in like a day or in like five days.

I'm sick everybody if you don't know. I sound worse than I am I swear and I get so passionate my voice is going but so and people will say oh it's because of lack of oxygen to the brain it's because of a release of DMT which I'm not like anti-theories, hey if someone comes up with if someone can tell me why this is happening I'm all for it and I think even if we had a reason why it's happening

Patient From Hell (21:10.298)
All good, you sound great.

Hospice Nurse Julie (21:36.034)
I don't think it discredits it. I don't think it, I don't think, I'm not here to be like, oh, there's for sure an afterlife. I know, I don't know. All I know is in watching people die a natural death, I am like, people need to know about this. People need to know about what it looks like and what happens to our bodies because it's not as scary as we think. And...

And when I die, like, of course I'm going to die too, right? And then when I think of my own mortality and I think about if I got diagnosed with something terminal tomorrow, I'm still human. I'm gonna have all the feelings, anger, sadness, scared. I'm still gonna be scared. But I also know that my body will take care of me. My body will take care of me. And I know that because I've witnessed it.

Did I answer? I could go on and on and on, ladies. I could go on and on and on. There are so many amazing things that our bodies do to take care of us that if we would just be willing enough to not be afraid to learn about it.

Patient From Hell (22:50.962)
I love what you said and you definitely answered my question. Katie knows this about me, but I don't know if you know this about me, but anytime someone answers a question, I usually have 15 other questions that come up and that's just how my brain works. So I do have a follow-up because there's something you said that I think is so profound and kind of goes back to something Katie had alluded to is what I heard from you, Julie, one of the things I heard from you is the body takes care of you.

Part of that acceptance, part of the natural process of dying is that the body takes care of you and the body is designed biologically to enable you to die. And it's almost like our modern interventions have made that process more, for lack of a better word, gruesome. We're extending that artificially and in that we're sort of preventing the natural mechanisms to play out.

The part that struck me though is the body takes care of you. And I'd love to ask Katie a follow up question because, and Katie I'm not gonna put words in your mouth, but I can, if I'm having been a cancer survivor myself, cancer is really tricky because your body is literally trying to kill you. Like it is literally trying to kill you. So I do think there is, at least for me, I underestimated how much trust I lost in my own physical body from the experience.

And it's taken me a good three years to build back even a baseline level of trust that I trust my body will do what I think I want it to do. Right, so then to hear you say that the body takes care of itself, for me it's this emotional dissonant moment of like, but do I trust my body? But in order to, but almost I need to trust my body to believe that dying is going to be a peaceful experience. So I'd love for Katie for you to jump in and respond to that.

Katie (24:51.638)
Yeah, I have a lot of the same emotions, right? Because like, yeah, I trust that my body is like a complete jerk and growing all these tumors and like trying to kill me, cool. But at the same time, I've also had a lot of experiences that like, also to see like how miraculous our bodies are through the experience. So like, I don't trust my body to alarm me. It's almost more like I don't trust my mind because my body is usually telling me when something is off.

Um, but I am like rationalizing it or like, I don't trust myself to recognize something as a flag. Um, whereas my body, there's sometimes that like, I haven't known about something that was off, right? But usually like my body sends the signals and then I rationalize them away. Um, but the part that I think like, I've also had a couple of experiences where like I had a bleed during my biopsy.

And so I went from an experience that like, it's pretty rare to happen. Like when you have a biopsy of your liver, there's only about a 2% chance that you'll have a bleed. And I didn't know I had a bleeding disorder at the time. We discovered I had a bleeding disorder after that. But I had like an experience where like, during that experience, I had those feelings for the very first time of like, is this what it's gonna be like to die? Like I hadn't, it was early in my diagnosis. I hadn't really had many

like large medical experiences other than just like getting diagnosed. And like all of a sudden, just like in the, all the medical dramas, like there was a whole frenzy of a team like rushing around me and like all their skills kicking into action and then like watching the ceiling tiles go across, uh, it's like I'm wheeled down the hall and stuff like that. And so I had that experience from like, and that all happened. There was a delayed experience. Um, after I had my biopsy, everybody thought everything was fine. And then my body was telling me,

things are not fine. And it took me a minute to actually convince the nurses that things were not fine before the doctors came back in and we noticed that there was a bleed. But I went from that moment of like, I had an instant relief of like, whew, okay, I made it through this thing, we're fine. To then like after that, the bleed really irritated my diaphragm. And so it was really hard for me to like breathe in. Like it was very, very painful. Honestly, some of that pain acutely after it

Katie (27:15.502)
was worse than some of the pain that I had acutely after surgery. Because I couldn't take a breath and the nurses were like, just take a slow deep breath. I'm like, I physically cannot. And so that gave me a... After I took about seven days for me to recover from that and they didn't do any interventions from that. The bleeding stopped on its own. And then my body reabsorbed the blood and I walked a lot and slowly got back to this place. And about a week later, I was like in awe

of the fact that like, we didn't do anything. My body just figured out how to like take care of itself. And then like, I was breathing again. And then I like had this immense appreciation for like, I didn't recognize how lucky I am that my body even like knows how to breathe on its own. And I had similar experiences again after surgery when that got taken away. And then I had a major, they're not a hundred percent sure what it was, but they think it was a biloma

from my liver surgery of like they might have nicked one of the bile ducts. And so I had this big fluid collection in my abdomen that was huge. And there was some people that were like, oh, let's, let's drain it. Um, but very thankfully my, my surgery or my surgeon at the NIH was like, do not let anybody drain that thing. Um, you are going to have to like perpetually drain it forever and it's never going to heal if you actually drain it. And so we didn't.

And I had a hard time believing that, or dealing with that, because for six months I had this thing, and it shrunk a little bit, but it was massive. It was like, I don't even know how big that is, how to describe that, but like, way larger than a softball, maybe a cantaloupe. And so there was this massive fluid collection that I had that I did not trust that my body was going to get rid of it. And then six months later, on one of my scans, it had almost completely reabsorbed. My liver had started regrowing from my...

liver resection. And so I had those moments of like, your body is trying to take care of you. Like there's so much happening that you don't ever even think about, but your body is actually granted it, it has lost the manual for how to care or how to take out cancer, but it still has all of these other pieces that it is actively trying to take care of you. And so I do think that that's part of what resonated with me is because a lot of that was during that same period of time for me.

Katie (29:37.042)
And so like I was accepting a lot of those same facts of like, there are mechanisms in place here that like, although it's working against me sometimes it's also working for me.

Hospice Nurse Julie (29:52.93)
Can I say one thing really quick just so I can set the record straight? I want everyone who's listening and you two to know that I fully believe in modern science and medical and all of our medical advancements, right? Like, because what, what I, because I'm so used to like delivering

information generally in like in a minute, right? So it's like, I have to keep it so general that I don't want people to think, which I don't think you guys think this, but just so everyone's clear, I don't want people to think that I think the body is just going to take care of itself. Don't you don't do anything. I specifically mean basically when we, when we know, when we know that someone is dying, right? We know that for sure someone is dying. This is it. This is the end. That is like the one clear thing I speak about.

Other than that, it's like, listen to our doctors, be an advocate for ourself, you know, be our own advocate, Katie, thank you so much for being like, something is wrong here, someone, we need to do something about this when you have that bleed. But I still really believe in modern day science and I'm grateful for it because we've made crazy advances. But in general, at the very, very end of life, let the body be the guide.

Patient From Hell (31:06.994)
Julie, I really appreciate you clarifying that. And I mean, I don't think either Katie or me believe that you were saying anything otherwise, but I appreciate the clarification because you never really know when someone starts listening to a conversation on a podcast. So the clarification is helpful. I do have a follow-up.

Katie (31:21.354)
Yeah, especially with the context of, oh, sorry, I was just going to say, especially with the context of like what I just shared, I want to share that those two very specific things were things you don't intervene in, but there are many, many things that I have had interventions from. So like, I like, I am here because of modern medicine. Um, so I do, I do appreciate the clarification from that too.

Hospice Nurse Julie (31:33.818)
Fantastic.

Hospice Nurse Julie (31:39.845)
Yes, right.

Patient From Hell (31:44.746)
So now that we clarified everything, I'm gonna go ahead and like, caboose it for a minute, okay? Sorry. I, of course, I'm a bioengineer, I'm a scientist, like, yes, modern medicine is amazing, I'm standing here today because modern medicine, 30 years ago, I would be dead. Like, all true statements, all data backed, right? I will say though, that sometimes our fear of death and mortality skew decision making.

I do think there's a trade-off. And the more and more I speak to more cancer patients, especially those where you have a terminal illness and you're making a trade-off on quality of life versus quantity of life, modern-day medicine pushes you to quantity. I think it was just set up that way. The incentives are set up that way. The system is set up that way. I think, and our individual fear sometimes prevents us from looking at it

from a broader worldview. And part of the reason I really wanted to have this conversation with you guys was to talk about that, because I think if we, and we including myself, were more accepting of our own mortality, maybe, just maybe decision making would look different. Not necessarily, because I think there are life circumstances that are different for every individual. But I almost wonder if...

And I'm talking like six months before death. I'm talking, I'm truly talking true end of life moments. I'm not talking early stage cure to settings. I'm talking true terminal illness. You don't have line of sight into life beyond a few months. What does modern medicine push you to and does it enable you as a patient or a family member to have that conversation, to evaluate the dying process?

So I'd love any reactions either of you have, and especially you, Julie, because you've been a nurse for a very long time and you've had the ICU experience and you've been in hospice. And I'm just, I'm making a wild assumption here, maybe not that well, that you've had many of these conversations. So. Yeah.

Hospice Nurse Julie (33:54.686)
Yeah, I mean, I, um, it makes me, it makes me really sad when, like, it takes a very, very good, uh, provider to have those kinds of conversations. And unfortunately, like to me, it's like mind blowing that not every single oncologist, radiologist, um, I'm again, I'm being general, but like, that should be like the converse, like, it should be the conversation

right off the bat. Not like, not like you're gonna die, but almost. And it's hard, right? Because Katie, Katie's situation, like, you are not dying. You are not dead. You are like, and if you would have really just listened to like what the stats said, right? So there are these certain outliers where like miracles happen.

Here is Katie fully living and able to articulate this beautiful message. And there are, I'm trying to think of an example. It's so hard, right? Even me, even me who does this every single day still feels have a hard time saying stuff like this, what I'm about to say on a podcast. But let's give an example of pancreatic cancer. Pancreatic cancer is a terminal diagnosis,

for the most part. Generally speaking, but like not really. I mean, there are, I guess a few outliners, you never know, but that is the problem, is that people hear that, and because we are so afraid to die and don't want to admit that we're going to, they will hang on to this little thing of like, yeah, but not everyone, maybe I'm going to be the, and I don't actually know percentages, but the 1% that doesn't die from this in six months. Um.

And I think we do a disservice to people because of that. Because how would you be living your life if you knew you were going to be, if you knew you were going to die in six months? And I feel like most people with that, I'm just giving that diagnosis because it's pretty clear, but they are not told that. They are like, it's a grim diagnosis, but here's what we can do. And right, so then all they listen to is,

Hospice Nurse Julie (36:20.834)
but here's what we can do. And then three months into it, it's not looking good, blah, blah. But here's what we can do. And then they hang on to this, but here's what we can do. Versus like, how do you wanna live the rest of your life these last three months? Who do you wanna see? What do you wanna do? Where do you wanna go? What do you, you know? And I don't know the answer. I don't actually know the answer because I get it. It's really hard. It is really hard to take away someone's hope. It makes me wanna cry right now just thinking about it.

But we're do people a disservice by not being that honest, by not being that upfront. There's like soft and fluffy ways we can still go about it, but I think people can only make right choices from themselves for themselves when they know the reality, when they know the reality of it. And that choice might be, doc, I want you to do everything until my last breath. And that's okay too, you can do that, you can do that. And then the last thing I'll say, and then I'll get off my soapbox,

is I think we can take that kind of mortality. I think we can I have like medicine brain. Can you tell like I don't know if I'm even talking right.

Katie (37:29.838)
I'm going to go ahead and close the video.

Patient From Hell (37:32.631)
We've been there, definitely been there. We'll try to understand.

Hospice Nurse Julie (37:37.374)
I think we can take that way of life and live our life like that now. Like why aren't we all not thinking we're gonna die in six months all the time? That sounds horrific, but I think that would change the way we lived. Like understanding that like that could be any of us. That can be any of us. We are all gonna die. So what does that mean? How do you want to live in this moment now? Okay, I'm done. I'm done.

Katie (38:03.03)
I have so many thoughts on this too.

Hospice Nurse Julie (38:06.425)
You're taking away, girl, because you're you are anyway, go ahead.

Katie (38:10.91)
I have like very, very conflicting. Like this is something I've been grappling with for the last three years, right? Because I have been in all of these. Just lost my air pod.

Katie (38:23.775)
This is something that I have been grappling with for the last three years because I've been in all those situations. I've been in the conversation where somebody told me my treatment goals weren't curative. I've been in multiple of those conversations. And then I've also been that patient that was holding on. In the ER, when I was told I was diagnosed, my husband was looking up stats on what the survival rates for stage four kidney cancer, which at the time were 8% for five years survival. They've gone up since then, thankfully.

Um, the, I was crushed and I like, the thing that I repeated over and over back to my husband is like, it's not zero. Even 1% isn't zero. Like I can, I can do it. Like I can make it through this. Um, and it was the only thing that was keeping me from a very deep, dark rabbit hole. Um, and so, and when I did read stats that told me the truth, I went down a very deep spiral, um, and like was one of the worst places that I've ever been before

like the second time after surgery. And so like, when I lost all hope, life was very miserable. And so I have a lot of conflicting feelings around this because I also being a very educated patient now and knowing as much as I do, I wouldn't have made the same decisions if I had anything other than exactly what I had. So the but at the time, like I had a general idea that what I had was different, but I didn't

know to the extent it was different. But I was pushing based on a fight mentality. So like I think about this a lot because one of the first oncologists that I had, not one of the ones that I have now, but they ended up telling me like my treatment goals weren't curative, that I was on a treatment, we didn't know how I was going to respond to it, but that it didn't cure people. And I knew one patient who had reached no evidence of disease. And I knew we had different cancer, but I

held onto that. And I was like, nope, you know what? I know it can happen. This is gonna be me, this is gonna happen. And it's hard for me to think about that thought because when I think of that thought in the context of other patients that have diseases that are well known, like I would not make that decision. That would be the wrong way to think about things. Whereas, so a little backstory on what I have is different is...

Katie (40:45.822)
So the tumor that we found, and I was still in the diagnostic process through all this stuff, but the tumor we found on my kidney, it was very large. And then I had a lot of tumors in my liver, but the type of tumor I had is typically known to be benign. It like almost never, ever spreads. So I did have stage four cancer because it spread to my liver. But because of the uniqueness of how weird that was that spread is why I kept pursuing second opinions and why I thought like.

There's a reason these tumors are normally benign. So if we can figure something out, like maybe, like who knows, but maybe like I could have a better survival. And so I was like looking to this one other patient and like hopeful that I'd respond to that treatment, which like I did respond, but I was never ever gonna have the response she did, no matter what. Like as much as I believe in modern medicine and what it can do, the extent of disease I had, that...

the physician was 100% right, that drug would not have cured me. Um, like I don't even want to pretend that there's like a 1% chance. It just wouldn't have. Um, but knowing that that other patient did gave me hope. And so I kept looking for second opinions and I kept looking for other options and that hope kept me, kept me kicking the countdown, the road, um, until I finally did get to an option where I had a curative option. Um, and like,

Now I'm off of treatment and living a very good quality of life that I have now. But I am the very, very rare percentage that falls into and it has 100% to do with the type of cancer I had. That also goes the other way. Like if this thing comes back, that works very much against me, right? Because there aren't treatment options really in the same way that there are for other people. But I've thought about this a lot in the context of like...

how would I make those decisions now that I know as much as I do as a patient, and how would they be different? And they would be. Leading up into surgery, one of the conversations I was having that I had the biggest frustration around is nobody knew what I had was so rare. They were preparing for a catastrophic bleed. They didn't know I was gonna bleed out on the table. They didn't even know if they were gonna have enough blood for the surgery. And so as I was having the conversations with all of these physicians, I was saying, can you at least tell, what is my prognosis?

Katie (43:09.366)
Like if I have six months more that I could spend with my husband, like living the quality of life that I have right at this moment, I will take that versus dying on the table on Tuesday. Um, but nobody had those answers for me. Um, other than like, there's a perspective chance that like, if you do make it through this surgery, you could have a long time. So that is the risk that I chose to take. Whereas now like when I'm evaluating those things, honestly, the thing that helped me cope with like how to live in the moment and make those decisions was scans afterwards,

because it was dealing with the anxiety and uncertainty from scans that helped me live three months at a time. And so I said, I knew whatever this three months was going to be, that's how I wanted to live life. Like I knew I could probably maintain whatever state I was currently in for about three months. And that's how I wanted to preserve my life. And I made decisions based off of that. And so I think of that the same way when I think of like now, disease ever comes back, knock on wood, that never will. But

I think about it in that context of like, what would life look like if I was on this treatment? How would it change from my current baseline based on what I am now? And is that something that I want to live for just the next three months? And also like taking into perspective of like, what are the chances there could be a cure? But oftentimes that's not the case. And I've even had the thoughts and conversations of like, and I wish these conversations happened. I don't think they do

of like, what's the worst way to die? Like, would I rather go into organ failure from trying drugs versus like letting the cancer take over? And that's like a very morbid thought and conversation to have, but honestly, like in some circumstances, I would rather go into organ failure from medications I was on, because that would be less painful than the cancer taking over in certain areas. And so I think they're very, very complex decisions and they're hard decisions for people to approach.

But I don't know if I have the answers that I wish they there could be more open dialogue along patients, because my decisions have changed throughout my diagnosis. That's very long, but sorry

Patient From Hell (45:21.967)
Yeah, I know I apologize because I am so glad you went on that path where you did, Katie, because I think that's the conversation that never happens. It just doesn't happen. Like, I mean, and I know you know this because you work with patients as well and so do we. And like, it just never happens. And bringing that conversation up is so stigmatized. Just broaching the topic is stigmatized, let alone actually diving into

the actual meat of the conversation. And I think it's stigmatized with providers as well. Like I distinctly remember this moment where, so I had early stage breast cancer, right? So curative intent from the get-go. And everything we discussed happened in those first conversations, right? Of course, here's the 15 things we can do and here's the plan and here's the diagnosis. And of course you're gonna get be fine and all the data's in your favor. But the treatment plan was pretty aggressive. It was 18 months of treatment and it's brutal.

It's brutal treatment. It's not exactly, you know, take a pill every day and you're fine. It's, it's some pretty gnarly things that happen to your body. And I remember sitting there and I remember this was I was in the office. I was working full time. The oncologist just calls me at like 6 PM with the final diagnosis. And we're talking through treatment plan. And I had just joined this new job. So it was like, and like full glass, you know, a classic

classic valley, full glass windows, like doors, everybody can see you and I'm just like, oh my God, keep a straight face, like you cannot break down. Have to have this conversation right now, there's no other option. And I just remember sitting there like, turn my back to the wall so that people can see me and I like stopped him midway and I was like, look, I need to know what happens if I do nothing. If we didn't do anything, zero treatment, what happens? And this is a super senior doctor, like very, very senior.

He just like stops and he goes, you know, in my many years of experience, no one asks me that.

Patient From Hell (47:21.13)
He said, people don't ask me that question. And I was like, well, how else are you supposed to evaluate any other decision? If I don't know what happens, if I did nothing, all other decisions are not grounded in anything. And I remember him telling me, I like distinctly remember the moment he said, Samira, you would not live two years and the next two years would be the worst two years of your life and you would be in and out of the hospital in immense amount of pain.

And I remember him saying that and I was like, okay, yeah, brutal treatment it is to do yours, got it. So it was just that moment, right? Where we almost need to have that conversation. Sorry, my dogs have decided to join the conversation you guys, but. So I think it's, I think even in the early stage settings, it comes up or it should come up, I should say.

Katie (48:04.598)
Thank you.

Katie (48:14.058)
Yeah, 100%. I honestly think that would help combat a lot of misinformation around cancer as well, too, because you have all these people that are like, you see it everywhere, right? Like, Oh, take this magical supplement and don't do anything because their chemo is toxic, and it's poison and it's killing you and all those things. Whereas like, no, it actually does like, it's all this exact conversation of right, like you need it in the context. Like, if somebody is in the last month of their life, and they're going under extensive chemo, like,

no, I personally as a patient don't want to do that. But if the same person who that extensive chemo will give them a full life, 100%, let's do that. And so those are the conversations that I don't think are happening, which is what allows a lot of the misinformation to get spread on the internet. I'm the exact same way as you. In my appointment, I want to know that context of what happens if we do nothing. I know this is a terrifying thought.

but what happens if we do nothing? So that I know how to make my treatment decisions. And I've even thought of that, like if my disease ever comes back, of like, that is the evaluations that I would make. It's like, okay, what happens if we do nothing? Like, how much time do I have? Because like, I wanna evaluate what my quality of life is versus like, if I go on treatment and like gauging, like even that helps in the fact of like, say you found something,

you've got a big event that you want to attend the next month. And so asking that question of like, what happens if we do nothing? So I know, can I stay off treatment for a month and how will that impact my decision-making on like, yes, I want to be able to go to this event and still enjoy the quality of life because really at the end of the day, quality of life is the most important thing. And so being able to like, okay, I can start treatment after that event.

But without the context of knowing how aggressive something is or what happens when you don't take action, it's hard to make decisions on how to make action. And honestly, I was kind of thinking as we were talking about this here of something that I wish existed for patients, because it's a double-edged sword, right? I also see patients in communities all the time, and I'm sure you do, of like their doctor has given them a prognosis and then they go complain in groups about them, of like, my doctor has given up hope on me and he's told me I've got six months to live. And like...

Katie (50:31.902)
I was that patient that felt that way. Like I've felt those feelings. And so like they're very valid feelings. But I think just like grief is a kind of a process that you go through, I think patients go through a very similar type of grief when they're processing this kind of news. And so I almost wish like those appointments might not be the best place to have those conversations, but I wish there was almost a way.

And honestly, I want to have those conversations with my physicians. I don't want to have them with a different, like a therapist somewhere. I don't know why. Like for me, I want that conversation with my physician. And I wish there was a way that like, you could have the conversation about treatment goals and just like, here's what your options are for treatment. Here's what happens if we do nothing. Here's your treatment options. Feel free to choose. Take some time to think about this. And then I wish there was an option behind the scenes.

for patients to be able to flag, I'm interested in finding out more about hospice, I'm interested in finding out more about like, what my prognosis is, or like, some way for patients to indicate like, okay, I've reached this point, that I want to have more of these hard conversations. We both acknowledge that this is gonna be a hard conversation and this is something I've signed up for. So it's like.

So much of what I think physician cares is understanding what the patient's goals are and patient's goals change as you go through treatment And so having some way to be able to flag your provider To give them the insight of like this is where I am currently and this is the context at which I would like to Be having these conversations around I think would be a huge help

Hospice Nurse Julie (52:06.402)
Hey, this is brilliant As you're saying this I'm like, I don't know if I know one I don't know if people are gonna see us or just hear us, but I'm like shaking my head like vigorously like yes, Katie. Can I tell me what you guys think about this? What about a time like what like what I think that like to have the doctor like they see this day in and day out for the most part, right?

Patient From Hell (52:08.918)
Yeah, agreed.

Katie (52:12.078)
I'm going to go ahead and close the video.

Katie (52:21.03)
Somebody build this, okay?

Hospice Nurse Julie (52:36.454)
Unless it's something like really rare, but for the most part they're doing this thing and seeing this disease day in and day out, so tell me what you typically see what it what can I typically expect? What's – not even like timeline of death. I mean just like the timeline like in six months it'll be like this or then this might develop or then this might develop with typical with cancers, certain types of cancers like I know as an ICU nurse and as a hospice nurse

Patient From Hell (52:46.614)
Thanks. Yeah.

Hospice Nurse Julie (53:05.054)
I typically see X, Y, and Z. And I tip, that's what all my videos are about. Like I have videos that are like, what is it like to die from blank? Which sounds horrific, I know. But I think it's helpful to know most of the time when I see this person of such an age with this type of disease, these are the types of things I see. Just to prepare people. And it doesn't even necessarily have to be like, I don't mean death. I just mean in general, like I think it's, people don't know what they don't know.

And I think a lot of physicians, or anyone in medical, in healthcare, I think we take for granted that people don't have the foresight to know what's gonna happen next. Whereas we kind of do, because we see it so often with so many people. And everyone is different, I get it. But it'd be helpful to know like, hey, this is what I see all the time. So typically it's this, this.

Patient From Hell (53:59.11)
So I'm gonna...

Katie (54:00.142)
I feel like we have free advertisement. We just queued up Samira, here.

Patient From Hell (54:02.922)
Oh, you're really good. You actually, you totally, you, uh, yeah. So I'm gonna actually use that, uh, what you just said, Julie, I'm gonna use that to wrap up. So I'm looking at the clock and I'm like, we're obviously way, way over as usual. Uh, Katie and I, all of our episodes run way over and we always commit to another episode. So if you guys are up for it, at some point next year, we should have another episode of this. Yeah, I think it's gonna be good. That's all good. We will hope you're not sick or late as fine.

Hospice Nurse Julie (54:06.348)
What?

Hospice Nurse Julie (54:15.358)
I miss you.

Hospice Nurse Julie (54:23.646)
Yeah, and I won't be late.

And I won't be sick, hopefully.

Patient From Hell (54:31.914)
the sick part is important. So I will say, I did not plant what you just said, just super duper clarity, this was not planted, but you did just give us a free ad to Katie's point. That is actually exactly what we have gone and built. And we've not launched it yet, but it's coming out next year.

Hospice Nurse Julie (54:49.69)
Oh my god, that's hilarious!

Patient From Hell (54:51.478)
So we started with breast cancer and the way we describe it is we describe the cancer experience like a treacherous hike. But you don't get access to a map, you don't get access to gear, and you don't get access to a guide. And if you're privileged, you get some gear, some guide, but nobody gives you a map, but you know what the maps look like. It's like we know what these maps look like. I don't know the exact path I'm going to walk on, but I know the map. Those exist because clinicians have them. They have them. That's how they practice medicine. So our team has basically built maps

for patients and families and it goes from a new diagnosis actually all the way through the dying process for metastatic disease including grief after for the family member so that is actually what we are going to be launching next year so I did not plan this but I appreciate the free ad so thank you

Hospice Nurse Julie (55:40.634)
Wait, is it like you waiting to do this? Who's we? Who's doing it?

Katie (55:40.699)
I get so excited.

No.

Patient From Hell (55:44.436)
We have a, like Medicare is the company that we have and the podcast is underneath the company. So it's.

Hospice Nurse Julie (55:50.314)
Oh cool! Oh my gosh, wow, that's great.

Patient From Hell (55:52.106)
So yes, I can't.

Katie (55:52.474)
I'm not involved in any of it. I got super excited when I heard that because I think so much of what we connect on is the fact that we all have these shared experiences and nobody's solving the problem. And so it's very refreshing. It helps you align with the fact of yes, this is a real problem because this is being seen by across people, across industries. And...

different people that have different points, I guess not industries, it's all kind of the same, right? But like different points of the same care kind of thing. And so like, I don't know, it's just, it feels really good to like be a part of those conversations because like they're problems, but they're problems that like people are trying to solve. And I can't tell you how excited that makes me to try to make that better for other patients.

Patient From Hell (56:48.254)
Thank you guys for joining this episode. I am walking away feeling very reassured that dying isn't as scary as I thought it was gonna be. And I appreciate the two of you for sharing that because yes, all the professional study is great, but I don't know, skanzai day is real, fever for currents is real, and hearing you guys talk about it has actually given me a lot of reassurance personally. So.

I very much appreciate both of you for sharing your stories, for doing all the work you guys do, and for coming on this podcast and sharing that with us. And then I'm hoping, I know Katie's coming on this episode again, like she'll be back. I'm like almost certain, but Julie, if you're up for it, we'd love to have you back as well and to hear about the amazing stuff you're doing next year to dive even deeper into the process of dying. So thank you.

Katie (57:28.494)
I'm going to go ahead and close the video.

Katie (57:41.25)
Thanks for having us and Julie, thank you for joining. It's been incredible to be able to have your perspective in these conversations and I'll say just meaningful for me based on the impact that you personally have had on my life. So thank you.

Hospice Nurse Julie (57:41.922)
Thank you.

Hospice Nurse Julie (57:56.898)
You too. Thank you so much. You guys are so wonderful and beautiful and are doing amazing things. So thank you. I'd love to come back.

Katie (57:58.708)
Hahaha!

Patient From Hell (58:08.534)
All right, on that note, see you guys later.

Katie (58:09.536)
Thank you.