TOS of Being Mortal by Atul Gawande w/ Mom & Sis

They're backkkkkkkk. The last Wednesday of the month means mom and sis join Nadine for a conversation that starts with a laundry disagreement and ends with all three of them in tears. This one is special <3

It began with a simple idea, a book club of sorts. All three of them agreed to read Being Mortal by Atul Gawande but when they hopped on to chat about it, it turned into something unexpected and deeply personal. Turns out the book, which examines how medicine handles aging, terminal illness, and end of life, lands differently when you've lived it. And this family has lived it.

Listen in as Nadine, Danielle, and Lorraine open up about losing their dad/husband, Ed, to stage four lung cancer in April 2020, right in the thick of COVID. They talk about the brutal treatments that no one told him to stop, the fact that only once, and while in crisis, did anyone ask about his end of life wishes, and the friend and GP who finally had the conversation that the system never could.

They wrestle with the tension between fighting and letting go, and how hard it is to honour someone's autonomy when all you want is more time with them. Lorraine reflects on Ed's unshakable will to live and his refusal to hear a prognosis. Danielle connects the book to her daily work in addictions and occupational therapy, where she fights for the same things Gawande writes about - choice, dignity, and a life worth living. And Nadine reckons with a memory she can't shake: calling her dad from Ottawa, telling him to go to the hospital, unable to accept that he was dying.

They also talk about what the book gets so right; the loneliness, boredom, and helplessness of institutional care, the couple who built their own aging community, the man who came back to life when someone put a bird in his room, and the music teacher who spent her final days doing the only thing she ever wanted to do - teach.

This one is heavy and beautiful and important. It's about how we treat the people we love at the end, and whether we're brave enough to ask them what they actually want. It's also about screaming into the void at Cape Spear, which according to this family, is excellent therapy.

Read it. Seriously. Read this book.

@the_otherside_pod

Transcript

SPEAKER_02 0:01

Welcome to the Other Side Pod. I'm Needine. We're not experts. We're just humans having a human experience we think we can learn from or relate to or laugh at or cry over. So hit download, dive in, and hear how folks found themselves on the other side. Lorraine and Danielle. Mom, Danielle and I had a disagreement this week. So I need you to tell me how often money is it?

SPEAKER_01 0:47

No. I forget what it was, but now I remember when you just said that. It's gonna be disgusting. Oh, how disgusting.

SPEAKER_02 0:55

Oh my god. I'm already irritated. Start again. Do you wash your pants? Like let's say you have a pair of jeans on. How many wears before you wash your jeans?

SPEAKER_00 1:07

My jeans. Maybe it depends on where I wear them. If I wear them out to a restaurant, uh, you know, a fast food place, like a McDonald's for pearls, coffee or stuff, I'd I'd take them off when I got home and wash them. Right away. Yeah. Okay. Because I know they stink. If I'm just wearing them out around, you know, like going out for an afternoon running shopping or whatever, I'd definitely get two or three wears out of them. Just two or three.

SPEAKER_02 1:38

Oh my god, you guys. I'll go months without washing my jeans. Oh Jesus. Oh Jesus. I hate I hate washing my jeans. What?

SPEAKER_00 1:49

They're no different than a skirt or a jacket.

SPEAKER_02 1:53

I also don't wash any. I don't wash anything after one wear unless it's workout clothes or underwear. Oh nothing. Like I'll wear this today. I could go out all day, go for a walk with Theo, go, I don't know, wherever. It doesn't even matter. I I won't come home and wash it unless I was somewhere where it smelled. Like uh, yeah, some restaurants, if they have open kitchens, uh your clothes stink. But like, no, never. It just like wears your clothes down.

SPEAKER_00 2:23

It doesn't matter. A knitted sweater? Never. Oh god. And knitted sweaters are different, wool sweaters, especially, which I don't wear. But I I actually, if I wear a top out and I've only had it on for like a couple of hours, and I come home and I want to change to what I call my cooking clothes, I put that top to the front of my closet so I know that that's been worn slightly, so I know I can get one more wear out of it. And then I know when I take it off, it has to go in the hamper because I I can't wear it. I just can't wear it.

SPEAKER_01 2:52

I love this because can I just say, Mom, I do the exact same thing, but I don't put it in the closet. You know those, you know, those standing steamers we have? Yeah. So if I've worn a shirt, like say today, for instance, I have this shirt on, I probably won't wear it out. Like today, I'll take this off, I'll put it on a hanger, and I'll hang it on that steamer. So I know I've worn it, but not for a full day. So I know the next time I wear it, I'll have to wash it after.

SPEAKER_02 3:24

You're just wearing it sitting in your house on a Saturday morning to podcast. You will count that as a wear, and then your next wear, you're like, gotta be washed.

SPEAKER_01 3:36

The next wear will be like maybe Monday I'll wear it to work, or maybe I'll wear it tomorrow, like out and about running running errands. But like, yeah, I have it on today, so like I'll be doing laundry, I'll be loading unloading a dishwasher, I'll be having lunch, and then it goes on the hanger for the slightly worn pile.

SPEAKER_00 3:56

Okay, even sweaters like like this that I folded up. I even put that in a drawer that has my one wear, and then I know when I take it out. You have a one-ware drawer. Yeah. I'm a side.

SPEAKER_01 4:09

I have a one wear pile on my shelf, because in my closet, you know, I have shelves. So I have a one-ware shelf for like stuff like mom's got on, like little hoodies, yeah, or like or like pants, like you know, those um black kind of slouchy pants I wear. Like for those, it's a one pile on my shelf.

SPEAKER_02 4:33

Um t-shirts I can throw in, but like no, even a t-shirt, I'll probably just hang it back up. Unless like I spilt something on it, or I was it's like a really hot day and I've been walking Theo, something like if it's like sweaty or I've spilled something on it, or I'm somewhere where it's smelly, like uh like an open kitchen restaurant, I'll wash, but like, no, never. Okay, new question. You've got a dress, let's say, uh, and like uh not like really, really fancy, but like you're gonna go to cortage for dinner and you really want to wear like a nice dress. Do you wash that dress the next day? 100%.

SPEAKER_01 5:18

And you're sat and you've sat on a a chair that like other people have sat on.

SPEAKER_02 5:25

Never to meet you'll just like wear open kitchen restaurants, yes, but I don't think portage is an open kitchen. Maybe I shouldn't have to be in the middle.

SPEAKER_01 5:35

Every kitchen you walk into, every kitchen you walk into, you smell I went into a bakery yesterday to pick up bakery like pastries for last night, and I was in there for what, mom? Five minutes. I literally lined up. I was first in lineup. I picked out four pastries and I bought them and came out. Mom was like, You smell like the bakery. I'm like, I know. So clearly, that's a delicious smell.

SPEAKER_02 5:57

Yeah, but not on your clothes, but not on my clothes. I'm not smelling like croissants. I'm like, great, I remember washing this. No, no, no, no, no, no. Wow, okay.

SPEAKER_01 6:08

I just people are different, priorities are different, like everyone handles their laundry completely different. I still mom still irons, I iron, you do not. You steam from time to time. Steam. Yeah, but like I still have a like I have a pile of of uh ironing, and I'll do it probably once every three, two to three weeks. Like if I push it, and then I'll I'll put on a little show and I'll do my ironing, like for the day. Like it's the start of the day, I'll do my ironing, which is where I got I got it from mom because she does the same thing. I remember as a kid watching mom sit in the living room and she was ironing, and you did not touch any of the clothes that were on the couch, and I do the same thing, but like again, I I still iron like honey sheets for the bed. Like people just make so much fun of me. Yes, I do, because this one, look at her. You don't iron your bed sheets, mom.

SPEAKER_00 7:09

Pin look I ironed the top, the top one that comes down over, and then I ironed the pillowcases because it's just so crispy looking. Just amazing. Do you iron your bed sheets? Yeah, the top one. Yeah, the top one. Yeah, the top part where it folds down, and I got that board around it with that little nice little bit of satin, and it just looks so pretty. Now, sometimes I'll put it on and I'll get the steamer, I'll go over with the steamer because that's so much easier, and that just flattens out all the nice little wrinkles.

SPEAKER_01 7:38

They did get it just in time out of the dryer, you just had to do like a light run over. Yeah, yeah, you gotta catch it.

SPEAKER_00 7:46

So I'm aiming about catching sheets.

SPEAKER_02 7:48

Yeah, I don't like my sheets to sit in the dryer for a long time. I also like to take them out right away. Horrible because I don't want to iron them or steam them. Oh my gosh. Yeah, no, I steam, I mean, I have clothes that I can only wear if I steam them, but they'll be like put off into a corner and I'll steam it. I just won't wear it. So, like once every three months, I'm like, uh, and I just like steam everything and then it's like good.

SPEAKER_00 8:08

Yeah, I love ironing. I always do hate it, always find it peaceful. Like I said, I'll put on a just a random show that I don't have to concentrate too much on. And just yeah, you know, a couple of hours is gone before you even know. Steven used to actually sit on my laps when I was ironing. I think that's why he likes ironing so much because he's a really good, yeah. He does, yeah. But he he loved sitting on my lap as I ironed, and he'd helped me. Steven, Steven's just one of my favorite memories.

SPEAKER_01 8:41

Well, that's cute.

SPEAKER_02 8:43

And again, different priorities. Yes, up next. Up next being mortal. Okay, so we tried something different. We each of us read this book, uh, Be Immortal by Atl Gawande. I might be saying his name wrong. Uh Atil Gwande, I'm gonna guess. I could have Googled that. Uh Being Mortal, Medicine and What Matters in the End. Okay, can I read out the sentence that made me uh want to uh dig into this more? Because it's at the very beginning, or uh within the first few chapters anyway. Medicine's focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet, and this is the painful paradox, we have decided that they should be the ones who largely define how we live in our waning days. It's like yeah, I like that. Here's what blew my mind about that. We try to keep people around for as long as humanly possible. Like everything that humanity does is trying to stretch out our days. But when you look at final days, especially with someone with long-term illness, um well long-term terminal, terminal in most. Yes, thanks, Mom. Yeah, um like to what end? Do you know what I mean? Like to what end? And I never really thought of it until honestly, COVID, when it um there's a lot of the talk about having to be intubated. And I never really thought about having to be intubated before or the effects of that. Uh and then I feel like the conversation started to be had, uh, especially with the like older people in my life, to say, if anything happens, like don't intubate me. And I didn't realize how brutal intubation was or um the effects on your health after, like if you come off of it and you can eventually breathe on your own, I think it still has like lasting impact, right? Like longer-term complications. Isn't intubation pretty right? Yeah, and then I started to realize, like, right, well, like what would you what would you want to have done? And then obviously dad had cancer and was dying, and it was like, right, what does dad want? And I remember um a couple of days before he died, he lost the feeling in his hand, right? Right. And I was like, right, get to the hospital. And now looking back, I'm like, right, that's why he didn't want to go to the hospital, because to what end, Nadine? Like he was he was clearly in his last few days, and I couldn't imagine, like, why wouldn't you go to the hospital if you lost feeling in your hand? But I was thinking from a healthy perspective, like, yes, sure, if I woke up tomorrow and didn't couldn't feel my right hand, obviously I'd go to the hospital. But like for him, it was like what's what's the what's the trade-offs? What's the cost benefit of me going in and probably it never getting back out? Because he was so clear, like, I do not want to die in the hospital. And luckily, um, we got to honor his wishes and he died at home. Anyway, uh, it just brought up so many things, and and I just found the book incredible, and I think everyone should read it, honestly, because we're all gonna get old. There's an aging population, no matter what time, what century you're born in, what year you're in, there's a huge aging population around you. How are we treating them? And this idea that it's like, okay, well, what's your long-term plan? Like, do you want to go into a home? And then it's like, well, to what end? Like, why not let people stay at home? And yeah, maybe they'll fall, maybe they'll forget their medication, maybe X, Y, Z. But wouldn't you rather that than being very depressed in a really strategic institution? Yeah, there's a really there's a lot of great institutions in a lot, which the book also talks about. But anyway, that's that's where I was coming from. That's why I wanted you both to read it. I also asked Steven to read it, and he said, no way. And the mortality, better than dying.

SPEAKER_00 12:39

Yeah, and it's funny, you know, uh Danielle mentioned the other day, and that's the first time we either one of us even mentioned the book that it it brought up uh thoughts about dad when he went through his process. And of course, how could how could it not? Because that's that's our most recent uh uh loss, you know, and and and most profound loss in in our lives to date. And uh especially you guys, and but that's what it brought up with me as well. And uh I can't think of it when it could affect his brain. They should have stepped in and said, you know, why are you gonna offer more treatment? I say to him, gosh, ain't you gonna have five more rounds of uh radiation when they knew it wasn't going to be any good outcome? It would cause more more misery and more um more sadness for us to watch and have to go through it and for us us thinking that oh gosh, maybe this will give him a little bit more, even though we knew it wouldn't.

SPEAKER_03 13:56

Right.

SPEAKER_02 13:57

Yeah. I remember um dad died on a Tuesday. And on the Friday, I started to drive home from Ottawa to get home thinking I was spending time with him. And uh on the Friday is when his right arm stopped or he lost feeling in his in his right arm. What makes me so mad is dad is the one that had to tell you the next day, I'm I'm not gonna go for any more treatment. Because dad was a fighter, and like to say I'm not gonna do this was actually braver than it was to go get another one. Like, less let's be honest, that that took way more courage and self-assuredness than it did to continue with those fucking treatments. They had, I don't know if it was chemo or a radiology appointment on that Monday. Radiation, yeah. Who told him to come in on Monday? Like anybody looking at that last week or the week before or the month before should have sat and had that conversation, and it makes me so angry that he was set.

SPEAKER_01 15:03

Yeah, you know what's funny though? Like that Sunday, so Friday night we were watching television and he was doing. I remember he was like doing all these movements, and I was like, Oh my god, Dan's having a brain bleed. Because he had that treatment that Friday morning, yeah, radiation, radiation that morning, like brain radiation. Because I think that was his second one, mom, or probably, yeah, yeah. I think it was the second one at night. We're sitting there watching television, and he started like he was losing, he was losing uh feeling, like in his in his, I think it was his left hand, and he was doing like a range of motion, and I was like, Dad, what's going on? And I was like, I looked at Bob and I was like, he's fucking having a rain blade. And then he lost the left leg like a little bit and it came back. Anyway, then yeah, you were on your way home and Steve again, it was COVID times. Like if he were it was the beginning of COVID, like it was legit. I think April 2020. Nisaline shut down that Saturday, 20th.

SPEAKER_02 16:07

Yeah, when I drove off, so when I drove off the boat on the Sunday, they announced that the province was closed, which was the 26th of April.

SPEAKER_01 16:15

So Steven and then couldn't even get like a flight because you couldn't travel in or out, but you were on the road and they let you through the borders, whatever. But I remember this Sunday, so he had an appointment Monday, but Kelly, my good friend Kelly, who is Wozu's GP, she was the one on Sunday when dad finally came to because he was unconscious for out in and out like that whole Sunday. And Kelly came over and he looked to her and said, Should I go to my appointment tomorrow? And she's the one who was like, Mr. Hogan, like, what do you want? Like, do you think you really need to go tomorrow? She was the one who had the conversation that was kind of in this book. Like, she put it on the line for him. Sorry, that's okay. Apologize.

SPEAKER_02 17:05

But she was the one who gave it the choice. Yeah, but like two days before. Yeah, like when was that conversation?

SPEAKER_01 17:14

Yeah, months well, months prior, but and he made the choice not to go that Monday. And then I think it just all settled.

SPEAKER_02 17:25

Like, uh, do you either of you feel angry that no one had that conversation beforehand, or was dad a hard person to have the conversation with? Because he was so adamant about fighting. Both.

SPEAKER_00 17:36

Both. Both. But uh, and and I respected his wishes all along because there was no talking him out of whatever. Uh, one of the first things he said to the oncologist uh in the in the meeting when we got to meet him the first time is that uh I just want a fighting chance. And that was his baseline. There was no veering him off of that course. I want a fighting chance. And he said, We'll give you your fighting chance. He said, as long as you know your system is able to take it. So he did. That was as direct as it came to, like, what can we do for you? It wasn't a direct question, but it was almost put through uh through dad's uh uh opening uh statement, I guess. And that's what he wanted, and he would not even he was back here today, he would go along the same route that he went because he was that's who he was at his core. He just could not not take a chance. But I think where the system failed him was in those last, I'm gonna say, week and a half to two weeks. Uh, and it's funny, it was because of COVID, which he brought up that actually his fifth round of chemo was cancelled. And I remember, and dad had him on speaker phone when he called, we were sat over there in the TV room, and uh the oncologist said to him, Well, Eddie said, really? Uh he said, Does um there's not much difference in survival rates with four or five chemotherapy treatments? So, in other words, you know, six of one, half a dozen of another. But I'm thinking in my mind, why the fuck didn't you tell him that like two weeks ago when you saw how deteriorated he was becoming and so ill from the treatment? And you knew, we all knew, but couldn't voice it, but they knew that the treatment was not making any difference. It was not going to give him any uh higher quality of life. But they made him, to me, they made him suffer. Uh, but it took COVID even to to disallow, give him that last final round of chemo for what? For some stats on a piece of paper, for some, you know, statistics you could check a box on. And like I said, when he did have that issues, and we were sat here at the table and he was having a bowl of soup. I remember it. And when he put the spoon in the bowl, he hit the side of the bowl. And then the next time he went to get his soup, he hit the side of the table. So again, you know, I knew then that the brain was involved. And we called uh the radiologist. We called the the, I don't know, 311 number, eight one number for the healthcare, and and he did the radiologist did call. But it wasn't uh like Mr. Hogan, you know, uh, this is the process we should have talked about. This is where it's led to, this is what it's come to, and and you know and I know what's going on, but the it wasn't. His, you know, he asked him a couple of different questions and he said, well, we can start uh we can give you five more radiation treatments starting Monday, Mr. Hogan. And I'm thinking this man who sat at the end of the table can't hold a soup spoon up, and you are demanding of him, asking of him or prodding him to go and have five goddamn rounds of radiation when for what? For you couldn't have the conversation to tell him right, you're dying.

SPEAKER_02 20:57

This this is the this is the progression of your cancer. It has spread. Like dad was diagnosed with stage four lung cancer in don't tell me oops, November. Uh he was diagnosed with stage four lung cancer in November, and it had already spread to his bones, right? Right. No one once sat and said, here's the also in their defense. I remember dad said, I don't want to hear anything about a prognosis because you're always gonna hear those like best case scenarios, and you're always gonna hear worst case scenarios. And I'm just a number, like I'm just one person that's gonna fall anywhere on this what do you call it? Graph. Oh my god, stats, um, statistical analysis, whatever. Um so sure, maybe that deterred them, but I doubt you could still have said, I can shouldn't say I doubt, it's not being very generous with my assumptions of whoever met with him, but I guess I'm just like you could have heard that and also said, here's how this progresses. And like, here's the quality of life if you go for chemo, here's the quality of life you go for radiation. Here's the quality of life if you don't do either. Like, did they say that to him?

SPEAKER_00 22:04

No, no. And one of the interesting things in the book, uh, when they did their I and I can't remember what hospital they did it at, but uh they did a certain number of people who went the uh you know the medicinal route and then the people that went the hospice route, and there was a 25% increase in uh like a a more peaceful settling into those last stages of life, and a 25% uh longevity. Now I'm not talking years, but I'm talking it could have been days, it could have been weeks, but there was a little a 25% significant increase in outcomes uh that allowed families to be at peace with it, with with their their loved one, and for that loved one to be at peace with a certain um outlook on on their where this was going and and allow them that time to sit and say, Okay, I I just I don't need any more of this, it's not gonna do me any good. It's actually, I think one of the words that they use was like a it was barbaric, you know, to to say to him, go through this. This, you know, come in Monday morning and we'll strap you in that machine or they'll put your head around whatever and give you the radiation. For what? Really, it was it was it was horrible, absolutely horrible, right?

SPEAKER_02 23:20

It was barbaric. Like yeah, looking at how dad looked on the day he died, knowing that they wanted to give him radiation the day before, yeah, was barbaric. And yeah, how no one and I remember uh on the Saturday, um uh yeah, as I was driving, that's when you guys told me, or he told me uh that he lost feeling. And I called a friend of mine, Sue's husband, because he's a radiologist, and I said, Dad's lost feeling in his right arm, what should he do? And that's the first time I realized, oh, okay, dad's dying. I've got to stop fighting. Because he said, Nadine, what's the out? Like, what does your dad want? Like, yeah, and and that is the first. Well, I didn't have any doctor appointments. Obviously, I was in Ottawa and you guys were in Newfoundland, and but uh but you were telling me about the doctor appointments. But that's the first time I realized, like, oh, right, well, what's he going to fight for? And I'm sure it was really hard for John to say this to me because he's a friend and he realizes like your dad is dying, and I don't think you've really wrapped your mind around that. Like, um, but he said, like, well, why do you want your dad to go to the hospital? What's what's the outcome you're hoping for? Like, are you just willing to is does your dad just want to do all of the things for as long as humanly possible until he's literally takes his last breath?

SPEAKER_01 24:39

Or has he accepted what's happening, you know? Yeah, like was dad gonna go. I mean, what would be the result? Like going to rehab, like regaining his res like, yeah, but yeah, that last I mean that last week was brutal. The last week it was peric. Um, yeah, but then I fell into it.

SPEAKER_02 25:03

Like I called and I was like, Dad, go to the doc, like, go to the hospital. Like because I couldn't, I couldn't admit that he was dying. I didn't want to lose my dad, you know.

SPEAKER_00 25:11

So, but it it's it's yeah, it's it's and we all what is it they say, arriving at the at that acceptance of our own mortality and and recognizing the limits of what medicine can do for us. They say it it's it's a process, it's not an epiphany. We know, we know where this ends, but having somebody coax you along the way, and I and I know the doctors are busy and I know they got um dean patients, but at some point somebody should be gentle and kind and recognize that I need to take two minutes. Like that doctor did with his own, you know, a couple of his own patients. He sat back and he realized, yeah, I'm obviously not asking the right questions. I'm not looking at the big picture for this, what what this person in front of me wants and what their family wants for them because that's that's a consideration as well. And and I get the business and I get all this, but I mean, this is these are you know, these are end-of-life uh conditions and and uh uh considerations to take, and we all come to it, whether we're 20 or 30 or 50 or 90, we all come to it if if we end up in a situation like that, unless it's a it's a sudden death and then it's taken out of our hands. But uh yeah, considering these things, uh having somebody, um, what is it they said in the book as well, like having the list, you know, your do not resuscitate, no uh, no tube feeding, um, no intubation, all of that stuff. But this is a discussion that you should have, not when the crises happens, when families are so out of it that you can't even determine yourself if you want to eat anymore or you even want to eat anymore, but having that before the crises occurs, so that the wishes of the person that's going to be going through this, their their thoughts are known. And like what do they want? What are their hopes and what are the desires? And if you're going to, if you're going to intubate me, what am I am I going to just live, you know, w like a heartbeat, a mere heartbeat does not determine a quality of life. It's just a heartbeat, you know. So do you want to be just a heartbeat? I think these are the hard questions that should be and need to be, need to be asked, right?

SPEAKER_02 27:31

What I thought was so beautiful and so human about this book uh was he's a doctor and his dad was a doctor. And so he's he's he's learning about the aging population and how we treat them. And he goes to like the most awful of institutions, and I can't remember what country it's in, but the person that was with him had to leave. She was like, This, I gotta get out of here. I can't handle this. And that was a really hard thing to read about, but this is how we're treating the aging population in some places. And then he goes to um, what's the name? What's the title of the doctor? A geriatrician? Geriatrician? Is that how geriatrician? Yeah, geriatrician, yeah. Geriatrician. Okay. And he mirror, and he like um not mirrors, but works with them. He what's oh my, what's the word for that? He like works with them for a week. Thank you. He shadows them for a week. So he like does all of this thing. He's he's really teaching himself, and he was like in med school. I don't know, I we spent one day on this topic, right? You know, it's med school is all about like how can we like what how do we fix this? What do we do? What's the intervention? What what machines can we use? What drugs can we use? Not how do we help someone die with dignity? Um, and and maybe it's changing now, and I hope so. But anyway, this is the book. And so he's going through all of this, he's like immersed himself in learning more about this and trying to show up better for his family, his friends, and his patients. And then it comes to his own dad, and his dad gets sick in the book. He ends up with cancer, a tumor. And then his dad, he had all the conversations, remember? Like him and his wife or his mom and his sister and his dad, and his dad said, I don't want to die in the hospital. And then remember at the very end, his dad ends up in the hospital and he wakes up and he goes and he was angry. And he was like, What am I doing here? Why I'm in the hospital? Yeah. And they had such a hard time being like, right, stop feeding him, stop like, and then they did move him back home for his final days. But I was like, right, even you, a doctor who's really trying hard to learn about this, who's talking to his patients differently and catching yourself when you're like, Oh, I'm avoiding saying this to this patient because it's a hard conversation to have. Even then, they end up with his dad. I think uh, right, he fell unconscious at home, right? And his his mom was like, Oh my god, he's I can't wake him up because he'd taken extra morphine. His dad didn't. Yeah, yeah. Uh, I just thought that was so human because of course, like, of course, you're like, I'm gonna do this and I'm gonna learn all this, and I want to show up differently for everybody. And then it's your own dad, and it's like send him to the hospital, like we can't wake him up.

SPEAKER_01 30:04

Yeah, and they had a plan in place because it was like the hospice nurse said, Do not call 911, do not call the hospital, yeah, do not call the oncology, call us, call the hospice.

SPEAKER_00 30:14

But it's in that in that crisis, in the moment they call 911.

SPEAKER_01 30:18

And that's so interesting. Like, I I I mean, we have a great oncology cancer care program. We really do. We have great doctors, we have great nurses, we have great allied health staff. In St. John's in St. John's New Fland, sorry.

SPEAKER_02 30:32

Just to remind you.

SPEAKER_01 30:33

Yeah, we really truly do have a great program, and there needs to be changes, obviously, in the conversations. And it just so happened to be he dad's GP, like one of my best friends, who had the conversation with them. Thank God she did, because we would have been getting dad out that Monday morning, and like we couldn't, it was took the two of us to transfer dad at that point, even like to a commode, which I mean he knew Yeah. But like we basically had hospice for dad, like we promised him we wouldn't bring him to the hospital, and it was COVID, so that brought a whole different level of fuckery for dad's care at the end of it. And we did bring dad to the hospital after that Friday night. We brought him to the hospital Saturday. Do you if you remember, Mom? Like, we brought him in and then we had to wait in the took the two of us to get him out of the house, took the two of us to get him down the steps and into my vehicle. The ambulance came. No, the ambulance came for him, and you guys no, we took him ourselves. We took him ourselves, got him in the car. We had to go to the merge entrance, and I had the nurse come out and meet us, and she ended up knowing me from when I used to work up on the units, and she took him into a merge. We were flat in with them, so then we waited in the fucking parking lot, and then dad was so out of it that like it was only because the nurse knew me that she'd call and let us on the speaker to like talk to because I think the oncologist radiologist came down and met him, and then they would have admitted him, but we were like, no, bring him back out, like we're taking him home. And they brought him out in a wheelchair, remember? And then he was even heavier than when we dropped him off. And we basically threw him in the fucking backseat. We were like, Okay, this is it. We got to get this fucking man in the house. And it was then that we called, well, it was a palliative care team, and then they set everything up for us. Like they had all the equipment delivered because I called a friend of mine.

SPEAKER_02 32:36

Is that the first time you you contacted palliative care? So there's no hospice before that day. Saturday was the first day. Okay.

SPEAKER_01 32:42

I think it was a Saturday, yeah. We yeah, no, I we knew ahead of time because I we know the system, so we knew ahead of time we could get them, but we didn't need it before we had calls. Yeah, dad was fine. I mean, sorry, hang up.

SPEAKER_02 32:53

Wait, wait. What do you mean you knew ahead of time? You mean what is it?

SPEAKER_01 32:56

Because I work in the because I work in the system that we know there's a palliative care team, like that does home visits.

SPEAKER_00 33:02

Yeah, we had made some inquiries and we had made some context, so I knew I had numbers and names written down to who to call. Go ahead, sweetheart.

SPEAKER_01 33:09

Yeah, and then dad was fine till Friday. It was Friday night that all this happened. So Sarah, like well, fine as he was going through, yeah, stage four cancer. Uh well, we didn't think he was like three days before his death, like definitely thought, but it's so funny the book says, like what it's always says, yeah, how much time do you think? Like, I wasn't thinking years, but I definitely wasn't thinking days. But normally families do think years, whereas the healthcare teams usually think it's days or weeks, but it's just that fantasy of survival.

SPEAKER_02 33:41

Did anybody ever say in the last few weeks that it's getting near the end? Did anybody ever know?

SPEAKER_01 33:47

Well, the nurse when when we had the nurse in the house, like that she was the one then who took us through, like she act so I should back up, sorry. When we called palliative the team that that day, they arranged all the equipment through one of the local medical, so they dropped off the bed for us again. It was not assembled because it was COVID. It wasn't so simple to kind of they would not come into the house and assemble the bed. And I knew the owner, like I deal with the dealership, and I was like, Bill, like you got to come in and set it up. He's like, I'm so sorry. We're just directed now to drop it on the doorstep and leave. I was like, What the fuck are me and mom gonna do with this bed, like hospital bed? I could put a commode together, like, but what are we gonna do with the hospital bed? So dad's buddies, his co-workers and buddies came over. Like, we breached all protocol for COVID because we need this bed put together, and they put the bed together for us. And then they helped for him.

SPEAKER_00 34:44

And the guy that and the guy that dropped it off, and and we knew him because daddy knew his family. He stood outside of the door, outside on the veranda and left the door open so he could see the bed and let us know was it level, was it up the way it should? And and he waited until we had it put together and he said, Yes, that looks fine. And he asked us to do something with the head of it or something. Yeah, they never had one of the bars on, right? But he he couldn't come into the house, it was against protocol. But yeah, go ahead, sweetheart. I didn't need the director, but I do remember that, right?

SPEAKER_01 35:14

Yeah, no, that was that was our experience with like hospice. We don't call it that.

SPEAKER_02 35:21

You got um you got interrupted. So you Dale, you were saying palliative care came and delivered everything, and the nurse that was the first time she had the conversation with you and mom. Yeah, the nurse. She took a palliative care hospice nurse or the blind worked for it's a public public health nurse.

SPEAKER_01 35:39

So she worked with a good friend of mine. So she sat down with us and took us through all the medication administration. She took us through, she catheterized them. Um, she kind of helped us figure out like what were the stages, and then God love her, she sat with us, remember, and she took us through every change and was like, this is why this is happening, this is why this was happening. Like that was beautiful, as beautiful as death of your father would be. That was beautiful because she explained it all.

SPEAKER_02 36:10

Yeah, that was Tuesday because I was there for that conversation. But so the first time anybody sat with either of you or dad and explained end of life was on the Monday, the day before he died.

SPEAKER_03 36:25

Yeah.

SPEAKER_02 36:28

Come on, that is broken. Yeah. Who who was that for? It wasn't for dad, wasn't for the two of you.

SPEAKER_00 36:37

I I don't know, honey. And I mean, maybe the onus was on us to say, you know, we need help here. But I guess we're maybe we're Danielle and I and Dad too had the medical experience. I mean, you know, we worked in hospitals all of our lives, been around death all of our lives. We we did know, we did know the process, you know, to not to the finite part of it. Uh, you know, what the nurse uh, you know, described uh very, very uh eloquently, I guess. Uh so maybe that's why we never nothing was foreign to us, you know. The needles, giving him an injection wasn't foreign to him, having a catheter done was we knew all why why these things had to be done. We knew about the breathing, uh, yeah, all of that. So maybe if if we had to say, Jesus Christ, we need help with this process, maybe somebody would have stepped up or we could have accessed something. But uh, I think that's probably where the the oncology part of it there that that department could have been more helpful, you know, towards towards the end of the end type thing, rather than just leaving it into the, you know, here's your treatment, here's your appointments, these are your follow-ups. That like a social work part of the type thing. I I don't know. I don't know.

SPEAKER_01 37:57

I think too, I think you're totally oh, sorry, I was gonna say I think you're totally on point there because we we knew too much like about it because we arranged everything or like I went down, I got all the equipment, like I knew how to, we knew how to bathe dad, we knew how to toilet dad. We got I went to, yeah, I mean, there was many times I was at a medical supply place, and he would call me and say, like, you've got to come home now, so I'd have to leave the stuff be like, I'll be right back. And again, it's COVID, so you can only go ahead and start. So like, yeah, I can only stress that COVID.

SPEAKER_00 38:31

It's like and the and even the equipment that we had even after the fact, and just the the thought that we had that stuff in our car and we weren't allowed to bring it back, just the emotional baggage of having the the wheelchair, having the commode, having the bed in our prisons and in our in my car and Danielle's carrot, and we can't even fucking drop it off anywhere. We'll clean it, we'll sanitize it, we'll wrap it in whatever. No, we couldn't even drop it off. It even that, and of course, COVID had its own set of of um.

SPEAKER_02 39:03

Oh, it was inhumane how they treated people in the hospital at COVID and and in the older age homes that inhumane, like to what end, anyway. Um I I okay, and I know this is just one hospital and one experience, but I just want to understand this. When dad was first diagnosed in November, was there ever an offer of a therapist or a social worker or someone to come in and have the conversation about the mental side of being diagnosed with stage four cancer that had already metastasized?

SPEAKER_00 39:35

I can't say there wasn't, honey, because he was in hospital for at least a week or a week and a half before he was discharged to get his treatments. So there were opportunities, I think, within the the definitely within the healthcare system, and he had an ungodly amount of professionals that came in to see him. But you have to also understand where dad was coming from. He didn't want to talk about death, right? He didn't want to talk about how long. So uh, you know, uh from our part of it, there were walls that were put up against what people probably would have offered. So I I can't speak for the for anybody else. I I just can speak from where I know dad was coming from because he would never hear teleph not having treatment. Even if he had to say, look, you're not well enough to have it, he would have said, I want it, give it to me. Because that's just who he was, and he did not want, never wanted to know time. Why? Just you know, take your chances and go with the treatment. I always say there are miracles that happen every day, and why can't today be our day? So I I think I think that there are things in place, but sometimes you have patients have to be pushed aside for their own benefit. You know, make you listen, make you stop, make you hear, even though you don't want to do anything about it. But you know, they could have said, Well, Mr. Hogan, you need to hear this, you need to know this is vital to your uh well-being as much as we can make this as peaceful and as suffering free as possible for you. So these are your options. You're welcome to take whatever you want modern science can give you. But these are these are the outcomes, these are the possibilities and the probabilities. So uh I I I would think that those things are are available. It's just that we probably didn't want to accept it at the time because even the trauma of uh having the diagnosis is as anybody knows who's gone through it, and there are millions of people that have. Even that part of it is just you you can't get past that. It's just you're in in a fog, in a fog. So the professionals need to be able to work their way through that fog and give you what you don't even realize you need or you actually want. You know, that I guess maybe that's where the system may be lacking a a little bit. And how do you do that? I I have no idea. I have no idea, but the inevitability of your demise is is is imminent. It just no getting around it. You can't you can't sugarcoat that. So, you know, you have to make people, people have to be made to listen and have to be given the information and have to be given the supports, whether they want it or not, right? And you think, knowing everything now, that dad would do it the same way? Oh no doubt in my mind, he would, yeah, no doubt in my mind, sweetheart. And I never would have pressured him to do anything other than because that that's that's not my decision to make it.

SPEAKER_02 42:44

You gotta give people their own autonomy, right? You gotta let them. So if someone equally, I'm sure if dad if dad had been diagnosed and said to us, listen, the chances are very slim that I'm gonna have any great outcome here. I'm not I'm gonna not take treatment. That would have been so hard to hear. But I do think watching that experience and and living that experience with dad and this book in many ways, um, has changed that for me. It's like, I don't even want to think about this, but if God forbid, either one of us or someone close to us got diagnosed and they said, listen, it's stage four, it's this, it's that, I'm not gonna take treatment. I'm sure I would want to fight you, but I'm gonna try really hard not to because again, someone's autonomy, but also seeing like like the reality of the end of life with chemotherapy, with radiation, with going in for surgery that just could or could like could make it better, but like 25% chance it's gonna make it worse. Like, I I can't even imagine making that decision, especially in the book. There's some real young people, like not that it makes any difference. Like 71 when dad died was not flipping. I mean, it's not old. Like with healthcare today and and all the advancements we've made. Um, it did seem like we lost him way too young. But uh I can't imagine, like there's in the book, there's a woman who just literally just no, she didn't even deliver it. Yeah, she was about to deliver the baby and found out. So she delivered her baby knowing she had stage four cancer, right? Like is that I can't imagine saying I'm not gonna fight, but but it does really get into the realities of what of what you're fighting and what it's actually giving you, which is yeah, dad said to me one time, he said, if someone asks what I died of, don't say cancer. I'm not dying of cancer, I'm dying of this fucking treatment. Like this is poison, this is actually killing me.

SPEAKER_01 44:39

Like, oh god. And usually people don't die from cancer, they die from the side effects of treatment, or they, you know, their immune diminished immune system. Yeah. And yeah, like I completely understand when people decline treatment because to what end are you taking the treatment for? And I equally completely understand when people are like, I mean, fight till the end of the day, and they're doing all these. There's people in the book who did all these experimental drugs and treatments, and then you don't know if you're in the placebo group or you're in the the the you know, the new drug uh experimental group. Experimental, yeah. So I completely understand both both realms, and I understand when he talks about like his own dad, they had a plan and they went against it because like your human instinct at the end of the day is like, no, like we need to save him when like we can never save anybody, whether it's cancer or whether it's anything, like I could put any diagnosis there, but yeah, it's and hard it must have been for him to say to his mom and his sister who were like we're gonna stop giving this treatment.

SPEAKER_02 45:54

And he was like, he had to step in and be like, remember what dad wanted, remember what dad. And then I think his dad woke up one day and was like, get me out of here. And they're like, Okay, dad. It's okay to, I can't remember exactly what happened, but like it's okay to not be able to eat. He's like, Yeah, I don't get me out of here. And so they did actually honor him at the very end. Yeah, what his dad wanted.

SPEAKER_01 46:14

I do remember the only time I remember one time it emerged, what and I I mean I wasn't there as much as you, obviously, mom, but I was there for a lot of it. But there was only one time it emerged as anyone ever asked us if dad had a DNR. And that was one time out of all the times it happened to emerge because he frequented that place because he got so sick. And it was only one episode that anyone ever asked us. Nobody ever, ever inquired beyond that one thing.

SPEAKER_00 46:41

No, that was uh that was the oncologist. He came over to Emerge because when dad started to get his first treatment, he had some kind of a I don't know if it was an allergic reaction or just it was uh um an immense uh trauma to his system when they started to put in the chemo, because it happened in the chemo unit. And they I had gone for tea and I heard whatever this cold, whatever for eMERGE, and I beat it back down. Here it was, they were wheeling dad out through the eMERGE over to the um emergency department. And when the oncologist came over to the emergency department, because obviously they notified him because he was under his care because he was getting the treatment, and he came in and said, My God, uh Mr. Hogan, I said, I'm sorry, we never did ask you what your wishes were. He said, If something happens to you here, and now he said, Do you want us to resuscitate you? Or you know, to whatever, intervene. And dad said, Well, I suppose to God, he said you can give me one shock of it. He said, At least give me a fighting chance. And that was his that was his go-to. But you're right, sweetheart. That's the only time that anybody ever discussed like what are your wishes, Ed.

SPEAKER_01 47:46

Yeah. Uh and it was in the crises, it was like crisis.

SPEAKER_00 47:50

It was in a crisis, but dad was uh he was half alert, but and Henny, you know, he was had his own sense of humor about all the time. Yeah, that's exactly what he's I supposed to give him one little dart by rich.

SPEAKER_01 48:05

They're ripping off his shirt, and there was about 10 people around the bed, and they had him hooked up to they had him hooked up to the sh like the um oh my god, the fibrillator, like they had it was just madness in a war in the emerge war. There was so many people around, and that's and that was like yeah, I guess like tribal one.

SPEAKER_00 48:25

And in reality, it might have been a kindness if he had to go at that moment. He wouldn't have had to have suffered from the treatments, you know. Like, but it but again, like you said, it was not discussed. It was not discussed, it just and and they would have inter and why would they have intervened? He's this man before you is is dying. There is no hope other than divine intervention.

SPEAKER_02 48:48

We can't let people die. It's like uh it's like against our well, yeah it's against our human nature, literally. Yeah, but yeah, okay. Did you guys like the book? Danielle, did you like it?

SPEAKER_01 48:58

So I was saying to mom yesterday, I liked it up until chapter six. Six, seven, eight, uh wrenching because it's April as well. Yeah. This is when this all happened. So like I was going day by day, so it was too personal for me. But composure. But chapters one to five were great. And chapter six, seven, eight was also fantastic, but it was way too personal.

SPEAKER_00 49:29

Right. Too hard, yeah.

SPEAKER_01 49:30

It was so hard.

SPEAKER_00 49:31

That's what happens, yeah, yeah. And life is hard, sweetheart. Life is hard, yeah.

SPEAKER_01 49:36

But chapter one to five was great, like really great.

SPEAKER_02 49:40

Because chapter one to five talks about um older age homes and yes and facilities and and like how like where the idea of these institutions came from, which I found really interesting, actually. Um, and then it talks about what went to a really, really, really awful place, uh, institution in the country. Again, I can't remember. And then it went to um this couple that have set up their own. Yeah, uh, it's somewhere in the in the states, and they knew both of them were aging. And even before any crisis happened, they said there's no there's nothing here because it was a smaller town. There's nothing here, there's no place for us to go that we want to go. There's like a not a great institution that they didn't want to end up in because we all know what a not a nice old age home looks like. We can all we've all been in one, I think. Anyway, um, and like I feel like that's everyone's fair ending up at a place like that. Uh, so they started their own community and they like banded together with other people their age, yeah, and like probably many years older and younger, like a range of ages, and they pulled their money together and hired someone to do like handiwork. Uh like uh, I don't know if they had a a nurse coming, a dietitian. Like they had they set up their own community. I thought that was so beautiful. And it's like talking about those things now. Like Henny, uh, my my bestie at started asking me about this five years ago. She's like, Can we get a community? Like, are you into this? And I've actually had this conversation with my friend Fraser, like with a bunch of people to say, How do we do this together? Because well, yeah, uh I guess I always was like, Yeah, that's a beautiful idea. Can we do it? And then I read this book and I was like, people have set this up, actually, you know, like that is so beautiful.

SPEAKER_01 51:30

We often talk about it because we like a lot, we have a group of what seven, six of us, um, but none of us have kids. Some of some are married, some are not. And they're like, What are we gonna do like when we get age? So we always joke, we want to buy a subdivision, like a cul-de-sac, yeah, and build individual houses, but have like tunnels that we can have like a communal kitchen and a communal like living room so we can get together, but also have your own like little spaces, which is how they describe the book too, right?

SPEAKER_02 51:58

Um, it's a great look. I always thought, like, yeah, how cute, but it happens, like you could do it. I'm I I don't know that we could all afford to buy a cul-de-sac, but like you could do this somehow and and take the power back into your own hands, and also say this. And this is gonna bring it back to dad again because um when he right before his transplant, so this is many years ago, he needed a liver transplant. And so I remember he couldn't, they were like, you have to be within an hour flight of a hospital and a particular hospital that does transplants because you could get called in any time because when you get a transplant, it's because a sudden death has occurred. Anyway, I remember he said to mom, I want to go, like, let's go to Vegas. I don't it he just wanted to go somewhere, he just wanted to go somewhere hot and somewhere where you get in the car and drive. And so I remember you and dad having this conversation and it being emotionally charged because you were like, Ed, what if something happens? And he said to you, I don't want to prolong my life if it means living on my couch. I'd rather die happy. And I think of that when I was reading this book, or I thought of that when I was reading this book, because we want our loved ones to prolong their life for us, right? Like, I want mom to live to be 107. I was a little kid being like, please let my mom and dad live to be 107. I actually picked 107. I don't know why. Like, do I want mom or Danielle or David in a bed hooked up to a million things, not not in this world, not being able to have a conversation. No, I don't actually. And I think that takes a lot of work and a lot of love to get to the place where you can let your person go. Yeah. Um, because you have to think about what does it mean to extend your days? And like that's what I thought was so profound about this book. It's like medical science, we keep wanting to be better. We're like, uh, like let me see this person because I can make them better. But then when it comes to treating someone who's elderly, we're like, well, it's not as fun, right? Because it's like I can't fix you. Yeah, you have arthritis or you have this. And but it's like there's so many things you can do to make sure their lives are as full as possible. And it's asking the question, like mom said earlier, and it that's in this book. I think there's four questions to ask. And one of them is like, like, what do you want? What is what does living mean to you? And one one answer, one patient in the book said, as long as I can eat chocolate ice cream and watch football, like I know what's going on and I can enjoy my chocolate ice cream, keep me around. The minute I can't do either of those things, stop intervening, let me go. And dad's was, I want to be able to live. Like that, that meant like I want to be able to get in my car and go somewhere, right? Like he didn't want to, he didn't want that fucking radiation treatment done Monday so he could lie on the couch half out of it and in absolute agony.

SPEAKER_01 54:44

No, I think what the what there was a sentence or there was a conversation in the book around um we treat the elderly, and uh and it could be elderly, it could be younger people with a variety of illnesses, but like we we set them up to be safe and the minimum we try to minimize minimize risk, which is why we take a lot of people out of their homes, or we put a ton of equipment in. Yeah, but we minimize risk at the expense of living, so it's like weighing the pros and cons of risk, safety versus like living. And it's interesting because I have a bunch of um friends who work in long-term care as occupational therapists, and I actually sent them this book before chapter six. I was on chapter five, and I took a picture of the book and I sent it and to one one of my friends actually yesterday, and I was like, because she she loves long-term care. Um, she loves working with the elderly, and oh, she loves it, and she's been fighting for years and years and years to put social programming into long-term care, and she's fought and fought and fought with administration, with leadership, um, to that degree. And it just doesn't it doesn't fit the mandate of I guess healthcare right now because it costs extra money, you need extra staff, you need like uh yeah, you need so much to put it to sorry, so much to put into place when there's limitations that are put on us right now. And and I was like, you have to read this book. She's like, it's actually on my shelf and I haven't read it yet. I'm like, man, so good, you have to pick it out because and from one to five, it is so OT focused. I was giggling the things that like that it was stating, and like I remember, I I mean I used a high layer because yes, that's what I do. But like my whole thing was like um, oh my god, there is one sentence I'm here looking at the book now, but it says it talks about the job of the doctor, but I think it's a job of all healthcare professionals is to support quality of life, by which he meant two things as much as freedom from the ravages of disease as possible, and the retention of enough function for active engagement in the world. Like, because people need to participate in their living.

SPEAKER_02 57:14

Yeah, could that be the mission statement of all of these uh all of these older age homes? Like, could that be the mission statement?

SPEAKER_01 57:21

You know, let them get up out of bed, who cares if they're faults, let them it's fucking because liabil because of liability, because there's no staff. And the other sentence that really stood out to me thinking about long-term care, because I've had also some friends with their parents uh be placed in long-term care. And I have some friends who have friends, young people being placed in long-term care, and it's written here, it it hits like the gut, the heart, and the gut, I guess. The three plagues of nursing home existence are boredom, loneliness, and helplessness. Like, how awful to live your entire life, and because of an injury or an illness or aging, just the natural organic nature of aging that we create that existence of like loneliness, helplessness, and boredom. Like, what's promote and promote people?

SPEAKER_02 58:21

Yeah, it's like you have to get up at this time. Imagine heaven, you can't even wake up when you want to wake up or go to bed when you wake up. It's like it's like you hit an age or a level of care that you need, and all of a sudden now we've we treat you like an infant again. We're like, this is what's best for you arranged.

SPEAKER_00 58:37

What was one of yeah, and one of the opening statements at the end in the early part of the book was that one lady said, it's like we're being incarcerated because we're old, just because we're old. Yes, and your privacy is taken away from you. You have no alone time, no place to go, your space to go that's your own. They just, like you said, Deanny, they're make sure you're washed and bathed at a certain time. Make sure you're up and dressed. And uh, I remember Aunt Loretta, God love her. She ended up in a in uh an old age home that was one of her worst fears. She said, I I'm going to hate it. She said, I I won't eat for three weeks. She said, because I will not last longer than three weeks, because she said, Nobody is going to tell me when I can get up, when I have to go to bed, what I have to wear, and what I have to eat, and when I have to eat. And it's it's that that's what it boils down to. And you can't, that's you can't fault the homes, but there should be a broader vision, broader mandate for not to just regulate it warehoused for the old or the firm or whatever, you know. And modern medicine can keep our bodies going longer, they can make us live longer, but you're still gonna have whether it's through injury or through you know, aging, the aging process itself, where your frailties, you know, increase as your age increases. Uh that there should be something to compensate for that. There's no good to keep a body alive, like I said before, with a heartbeat, because that that doesn't that doesn't say you're living, right? You know, like Danielle, you just said about those things.

SPEAKER_02 1:00:10

My God, I mean, and then you're just like a heartbeat. It's like you're treated like you could be feeling fine, you could be able to eat and bathe yourself and all that. But if you're stuck in a place where you don't want to be and you have all of your personal freedoms taken away from you, like yeah, like there was a there was a really um hard example in this book about that woman whose dad uh was no longer able to live on his own. I can't remember exactly what happened, and he moved in with her, but I think he needed more care, so he needed someone to come in. And I can't remember if it was that they couldn't afford that or what, but the decision was made to put him in a home, and he was so depressed. And it was like, he's like, I just want to come back to your place. And yeah, I mean, she had a young she had young kids, uh, she had her own life, she had a full-time job, I don't know. There's no judgment there. It's just like what a brutal place to get because um that's like to what end? Like, why put him there? Why why not just let him live at home until yeah, maybe he does forget to take his medication? And maybe he does stand down, maybe he does fall down and yeah, yeah, who cares? Let it let it be. Like, I I I'm 48, so I get to decide if I want to take my medication or if I want to do something risky. Like, everyone just is like, yeah, well, if she wants to jump out of the near plane in the parachute doesn't work, she wants to do that. So, like, why why do we not let people who are like, Yeah, you're a fall risk. Yes, I get how dire it is to break your hip when you're older, but like, yeah, I I went out and I did the thing that I wanted to do until I broke my hip, you know?

SPEAKER_01 1:01:40

And it goes, it goes sorry, I was gonna say it goes back to safety. And yes, we we are we should be allowing people to live at risk as long as people are able to explain what the consequences of those risks are. Because then there's a decision around, or there's a question around competency, so people's capacity to make these choices. Yeah, so people have to be competent in every domain of their their life to be able to make these decisions. So, yeah, if someone's competent and they can explain the risks associated with um the decision they're gonna make, fill your boots. Um and again, like the risk of you know, the risk of falling and breaking your hip, you know, from a um like a governmental or like a healthcare perspective, it's more cost on the medical system because now you're gonna go into a hospital and now you need surgery, now you need rehab or you need respite care, and you're probably never gonna get back home. But like if we can put like we're really good at reactive medicine, we're not good at prevention and promotion medicine. So if we, you know, like so. If we could look at having these communal living arrangements, which yeah, some countries or some provinces are looking at, to have that, you know, communal kitchen if people want to cook together, or you know, if they want to um share household chores, but also have their independence, but also make sure that they have healthcare coming in, they have the medications that they need, right? Uh, because I think there's a fine line of providing people um choice when they're able to make that choice. Yeah, like there's a there's a fine line for sure, but I think we gotta get better at it because people deserve to make the choices as long as they're able to cognitively make those decisions.

SPEAKER_02 1:03:36

Yeah, that's a good point. Good point.

SPEAKER_00 1:03:38

Did you like this book? Did I like it? Um yes, sweetheart. It's it's um I don't I don't mean this facetiously, but I I I didn't learn much from it. But he was so eloquent in the way that he um talked about it and presented it and uh gave so many wonderful examples of what exactly the statistics show and what the statistics don't show. So it was an eye-opener in in that light. Um but the situations that were presented and talked about are weren't any news to me. Like I just I wasn't like, oh wow, that's actually happening. Oh wow, I didn't know that. But it was certainly, you know, pretty concise in in the story that it told. And and it's our story, it's our continuing story of all of us as we age, if we're blessed enough to age, and uh do have to rely on social services or our healthcare system. And we all do have to at some point along the way. But again, I think uh I think one of the things that they said in the book was uh you can also have too much intervention that can be as damaging, as devastating as not having enough support. You know, when they interfere too much with what they're gonna do for you for your own benefit, it doesn't necessarily always pan out that way. Right? So I think that that was kind of like wow, yeah, that that's a neat way to put it, right?

SPEAKER_02 1:05:12

And when you say you didn't learn anything, can you say more? Like what do you mean by that?

SPEAKER_00 1:05:17

Well, um I have experience with the hospital system because I worked in it. Right. I have a firsthand experience with a devastating illness and loss and death. Um I have personal experience with people being put into long-term home, the process that it involves in not only considering it, but having to jump through the hoops to get somebody into it. And then the problems and the associations that go along once you have that person placed where you think that they were the the best place that they could be placed, type thing. So and and saying that, uh it it it's just honey, I'm 77 years of age. I've I've You know, and worked in the medical system and have been exposed to uh at least eighty-five percent of what what's in the book, like I said, but but the way he presented it is is very, very, very eloquent and very very thought-provoking, and certainly with his own story put into it that kind of like, wow, you know, you're not only speaking as a clinician and somebody who's, you know, very well educated and very well life experienced. But this this is such a personal, personal thing for you because you actually had to face what you've been what you were trying to talk about and trying to make better for the rest of humanity. You actually went through it and that puts you in a very unique situation. So I did I did appreciate that. It wasn't just somebody spewing off steps and talking about surveys and studies and and you know, all of that. And it wasn't sponsored by a drug company, it wasn't sanctioned by, you know, a nursing home association, all of that. It was just a very personal, personal memoir in in a lot of ways. That's the way I I took it, you know, that that letter part, even though it was difficult uh to read because of you know the association that you know we made ourselves put on it. But you can't you can't help but personalize things when you hear a story, you say, Wow, I get that. Wow, I felt that, wow, I thought that, wow, I needed that, and wow, I didn't get that.

SPEAKER_03 1:07:23

All of that, right?

SPEAKER_00 1:07:25

Yeah.

SPEAKER_02 1:07:26

Danielle, did you read past the chapters six, seven, and eight?

SPEAKER_01 1:07:30

Oh, yeah, I I read all of it. Like, I'm telling you, I was tickety-boo till chapter six. And when you said the other day, when we were talking on the phone, you're like, I'm at his dad, and I'm like, He's gonna this is gonna get personal. I was like, oh my god. And I think it is because like again, it's April, dad died in April. It's just it lined up too close for comfort for me. Um, but I it was it was a it was a quick, it was a quick read. It was an easy read from one to five because yeah, it was about and yes, it's about the elderly and the aging, but but I mean, we're all aging. It reminds me of my daily work because a lot of the key phrases he used, like meaning and purpose, you know, a a life worth living, um, you know, you know, uh individual choice, safety over, you know, participation. So these all phrases are things that I spew every single day and I'm so passionate about. So it's not only for me, like I don't work with, I don't I've never worked in long-term care. I mean, I I work with 18, 18 years old and up. I mean, probably the oldest clients I've had probably in their 70s. Um, but it really resonated with me from mental health and addictions perspective because a lot of folks with mental health and addictions issues have choice taken from them every single goddamn day because of their illness diagnosis, their socioeconomic status. Like there's not a day that goes by that I'm not advocating or fighting or arguing or you know, cursing and swearing and sometimes crying with clients because they have had what the system really beat them down and take away their life worth living. So it really, really truly resonated with me. And I think, like I said to some of the girls, I was like, you just really need to read this. Now I'm gonna go back and say, stop at chapter five, and then don't go any further. Um, because I think we take like we're humans, like we all deserve a human experience. And we should never, healthcare professionals, no matter where who you are, whether you're an oncologist or a radiologist or an OT or a social worker, ever, ever look down on someone and and put something on them that will take away their choice to live how they want it to live, as long as again that they're cognitively able to say that. Um, but it just it hit me in the heart, like it really, truly did.

SPEAKER_00 1:10:10

Same's I was like, everyone should read this book. Yeah. And also you talked about living your, you know, how you wanted to live, but also choosing the way you want to die.

SPEAKER_01 1:10:20

Yes, 100% choosing the way you want to die. And like I think like the one of the real great stories I loved was I can't remember the example, but when they fought to bring in animals, like the cats and the dogs and the birds, yeah.

SPEAKER_02 1:10:38

That was so beautiful.

SPEAKER_01 1:10:40

And that hit me because, well, you know, I mean, I've worked with horses for many, many years. Um, and just knowing the impact of like people interacting with other living things and being able to care for them and touch them and feed them and groom them, it just gives you so much purpose. And for folks that have no purpose in life, or they do not think they have a life life worth living, or someone in a nursing home who was help feels helpless, hopeless, like they feel only depressed to bring like you know, a living plant in, like to bring a little kitty cat in, or a buddy. Well, I they were I can't remember they were budgie birds, I can't remember now.

SPEAKER_02 1:11:24

Remember that man? There was a man that like was like not having he he was not interacting with anybody, he was so shut down. Yeah, and then the guy just said, like, can I just put a bird in the room? Like, can you just take care of this bird? And he was like, I don't care. And then he just started to come to life, like not immediately, but he started every time. And then, you know, they have these people being like, Oh my god, who's gonna clean this? And there was arguments over, like, you know, what staff members in charge, if I don't know, the cat shits on the bed or whatever, but like figure it out, people. You are changing, you are literally changing lives and like giving purpose and hope and love and connection to people from plants and animals, and like again, I did horticulture groups and horse groups, so like that hit me.

SPEAKER_01 1:12:14

I'm like, and you like it. Yeah, I was like, this is gives people something to look forward to and something to do with their hands and see another living creature continue to live because of things that they're doing.

SPEAKER_02 1:12:29

So yeah, so yeah, I really enjoyed that one of that. That was beautiful. I mean, yes, it does get into uh treating people with um chronic or or uh God, why am I why do I keep saying like long-term illness? It's not that, it's chronic illness. It's uh what's the word? What's wrong with my terminal? Terminal illness, thank you. Um and that it it's hard to read, and it but it's so important to read or have the conversation or listen to it. Like I just think it's imperative because number one, maybe you'll show up differently for someone that you love, or maybe you'll be able to think about this for yourself before there's a crisis. Um, because you have to, you're the only one who gets to say how you want to live the rest of your days, right? Which equals how do you want to die, actually? And yes, we can't control how we die, like something could happen today, shockingly. But exactly, exactly. But before you're presented with that crisis moment where someone tells you this is what's happening to your body, you know.

SPEAKER_03 1:13:35

Uh or even in that yeah, go ahead.

SPEAKER_00 1:13:40

No, you go. No, I said you you talked about you know sentences that made a uh an impact on you, and uh it's funny what you just said that reminded me of one of the things, and I kind of written down is that uh if the end of life discussions were an experimental drug, the FDA would approve it, immediately. That's stuck in the streets. You know, and it's yeah, that's stuck stuck out. Wait, can you read it again? Read it again, mom. Uh I just got it paraphrased here. If the end of life discussions were an experimental drug, the FDA would approve it. Yeah. Yeah. Yeah. Just talk to people, just ask them what are your hopes, what are your fears? Uh you know, what what do you want your life to look like going forward? Yeah. Yeah. Oh my god, then you're going to be able to do that.

SPEAKER_01 1:14:27

I love the question. I was gonna just gonna say, I love I'll throw the other question about like what are you willing to compromise? Right. To not have yeah, to do with that, yeah.

SPEAKER_02 1:14:37

Yes, right, sweetheart, that's a good one. And the music teacher, uh, she was only in her 60s and like dire straits in the hospital, and uh decided to go home. I think they called him and he was like, What he asked these questions, like, what are you willing to compromise? What are your hopes? What do you want your days to look like? What is a good day for you? I think is one of the questions, something like that. And then when when he heard her say, he said, take her home, you know, like hospice, and she ended up living for weeks, six six weeks, and then she gave music lessons right up until I think three days before her debt. Like that was and like came alive again, quote unquote. And it's not that she got better, but she was bad, like she she had good days or good moments in her days, which gave her a good end of life instead of stretching out days.

SPEAKER_00 1:15:34

Yeah, yeah, exactly. That's what she wanted to die doing. She wanted to die, teaching, yeah, teaching and hearing and listening music and and uh you know sharing with her students because that was what she loved, right?

SPEAKER_02 1:15:47

And it's gotta be so hard for the person who lives with you and loves you and just wants you to fight to the end of the hour, you know, to the to your very last minute. But then on the flip side, he had his wife around in in a really good way, you know, instead of watching my god, it's such a nice book.

SPEAKER_01 1:16:08

Oh yeah, again, I have Lord, I have everything to highlight it. I I love when they say we want to retain the like our autonomy, like the freedom to be the authors of our life. And like he talked a lot about like writing your chapters and not giving over like the control to healthcare professionals or government agencies or institutions to create the ending of our life, like take back control of how you end it. And you said, I think a little while ago, like people can't choose how they die. But I kind of disagree with that because some people can choose how they die when we talk about death by dignity. So there are other opportunities for people with terminal illness to be able to create their death plan and choose the day they want to do it, um, and choose who can be around them and create a really magical ending. So that's also really important, I think, for people is to have the choice to choose to die in the situations that obviously legally uh you can do that. Yeah, that's the ultimate choice. Medical, yeah, medical assisted dying.

SPEAKER_02 1:17:19

Medical assisted uh isn't it in uh M A I in dying. In dying. Okay, medical assisted in dying. That's what made sense more. I'd have to Google it to be sure.

SPEAKER_01 1:17:31

Yeah, but like I think there's something magical about being able to create the ending of your story on your own, right? So I I I think that's again describing death as magical. There is a little bit of magic around this of being able to create your own ending.

SPEAKER_02 1:17:53

Yeah, it is, it's medical assistance and dying. In dying. Yeah, I have a friend whose mom uh uh chose maid. Um yeah, I know a couple people have chosen maid, and uh yeah, that's no easier than you know any other way you go, but you have the autonomy to say, I'm gonna do this. I don't wanna for whatever reasons they had, they the the people that I know that did it uh were different circumstances, but both of them were gonna definitely be a pretty fucking terrible death. Let's just say that. And so um I think it is not I don't I wouldn't say magical, but I get what you're saying. But it's a gift to give somebody, it's like a it's a gift to sit around and let somebody choose that and and support them and be there for it. Because again, when dad died, uh, not that I was happy he died, but I did not want to look at him going through what he was going through for much longer. I it wasn't like, God, I wish he was here in that state for any longer, not even another second. But when dad was diagnosed, if he said, I'm gonna do maid because I don't want to have happen what's gonna have happened, I would have had such a hard time sitting with him, looking quote unquote healthy and and letting him go. So the people that are able to do that when your person looks quote unquote healthy and and you and you're not seeing them at the at what's gonna happen at the very worst, I think that is a really loving, yeah, the the most selfless gift you can give your loved one.

SPEAKER_00 1:19:27

And what, yeah, and what every everybody's I'm sorry, everybody's experience is different with your dad. Like I said, we we knew who your dad was, and he certainly knew who he was, and he even resented he wasn't gonna do anything else. He wasn't gonna do anything else, he wouldn't choose anything else, and uh, because of his fighting spirit, right to the to the bitter end, and he didn't even want to put in the the newspaper to announce his his passing, his death, uh his obituary. He did never want anybody to say, pass peacefully, passed peacefully away. He'd always say he went kicking and screaming and did not want to leave. And that was that was the model that he lived by. He lived to live, he really did. He did, yeah. Yeah, I remember that. And he kept screaming pass people away. Yeah, he'll come back and haunt you and haunt you. He did, he did, Jesus and we didn't put it in. No, we did not. That that's what it that's what life, that's what his life meant to him. He loved, he loved the idea of life, he loved living. Um, it's a you know, I mean, that was a gift in itself that that he was who he was, and we got to enjoy him for the whole and support him in doing that because it was also hard seeing your person deteriorate like that.

SPEAKER_02 1:20:46

And like that last Christmas with him, like all it's so hard to see. So, also on the other flip side of maid, it's a real loving, on like selfless gift to let someone choose. Yeah, I'm gonna do this and I'm gonna look like this and I'm gonna feel like this, and you're not gonna be able to do anything besides just sit next to me on the couch.

SPEAKER_01 1:21:05

Yeah, why that is the ultimate ultimate choice, like yeah, but hard. I can't even imagine how hard for the family. Like, I really, really, truly can't. And that's more about us than them. Yeah, right.

SPEAKER_02 1:21:19

Well, I think that's a lesson of this book. It's all that's all about us.

unknown 1:21:22

Totally.

SPEAKER_02 1:21:23

The lesson of the book is you're not actually not actually for the person that's going through it. You're doing everything for you. Yeah, and even as a doctor, because you're not related to that person, it's easier to say, here's the treatment possibilities, which drug do you want? Instead of this drug's gonna do this, this drug's gonna do this, here's the like percentage possibility that this is gonna help you at all. And here's what hospice is, and here's how that can help you. And or asking those, I think there's four or five questions that now he asks every person uh in his life, whether it's a patient or a loved one, and like what are you willing to compromise? What's a good day? What are you not willing to compromise? Anyway, so to sum it up. All those things. Go read this beautiful book. Yeah, go read the book. It's such a beautiful book, and it's written by uh by a doctor with really great medical information, but with the biggest heart. Like this man is such a big heart.

SPEAKER_01 1:22:17

Sounds very kind hearted, like just you you can you can like you can envision the humanness coming through it. So human. Yeah, yeah.

SPEAKER_00 1:22:28

Thanks for making it with thank you for making us registration.

SPEAKER_01 1:22:32

Thanks for making it. I appreciate it. April of all fucking months, it's fucking April, and this comes out the day after the after, I think.

SPEAKER_02 1:22:44

He's six years like, yeah, this comes out on the 29th and he died on the 28th. Yeah, well, I appreciate you both, and also it's it's I know we've had these conversations before, um, because you both are in healthcare, so we've talked about you know what we I mean, I I guess I haven't spelled out what I want in death, but I think this will also help those conversations for us and for other people. And maybe Steven will one day read it. And yellow now I should send it to you. Um will Yella read it?

SPEAKER_00 1:23:14

I don't know. She probably's they'll listen to the podcast. They they have uh free will to read or not to read. Hello, you two. What are you gonna do with the rest of your lovely Saturday? I'm going to get Danielle to drive me up to Cape Spear so I could scream like a banji at this goddamn snow we're having. I don't know, you guys, it's really hanging on.

SPEAKER_01 1:23:38

Winter. Um it's terrible. It's a long winter. It started November and it's April.

SPEAKER_02 1:23:46

And it's just still snowing. Look, it's out there. Are you actually gonna drive to Cape Spare? Fun.

SPEAKER_01 1:23:53

Probably fucking scream. We enjoy good scream. Also, about chapter six to eight epilogue, scream April therapy works, doesn't it, Sweet? Oh, it's I really enjoy therapy. Yeah, I enjoy therapy. I enjoy screaming. I also do it with my clients. Like, we'll go up to Cape Spare. Oh, do you? And yeah, and in my car, or if they really aren't comfortable, I'll get out of my car and I'll let them scream in my car. Oh, you're in screen.

SPEAKER_02 1:24:22

Screaming is driving and singing at the top of your lungs, also very good therapy. But yes, driving and just letting out a big scream. I haven't done that in a while. Definitely done it. So good. I think we've done it together, haven't we? The three of them. 100,000 percent.

SPEAKER_01 1:24:36

Yeah, especially that first year when you and David were home with us. We screamed a lot.

SPEAKER_02 1:24:41

Your dad died, yeah. That first yeah, because I just went for the month after he died. LOL, gonna drive home for a month to hang out with dad, die's first day.

SPEAKER_01 1:24:49

I mean, I think he waited for you, and then he was like, peace out. Yeah, yeah. And thank God, because like you said, you said, I cannot imagine one more day of watching him like that. Like he would, yeah, he'd be so mad at us. Yeah, he would. He'd be so angry, so like thank God for us. That's like he'd have to be we'd have to restrain him. We're not allowed to do it anymore, but I we'd have to restrain him, but anymore. No, he would have he would have fucking killed us if he could.

SPEAKER_02 1:25:27

You know what's funny? Steven uh always jokes that uh he would give his end of life um permissions, whatever, over to like whether it'd be me or you, and he's like, Well, if I gave it to Danielle, she would extend life until like I'm like a skeletor, just like every machine living for me, and knitting you would just like unplug me immediately, and I'd still be like, I'm in the middle of lunch, knitting. But I actually I think that you, Danielle, would be the one to call it first. I do. Oh, 100%. It's not just we all joke that you're like hanging on to the last possible minute. I feel like you'd be like, I think you should stop treatment.

SPEAKER_01 1:26:05

Like, I think you'd be the one to have the conversation. It's just listen, people gotta have a purpose in life. And if you're not living, you need to you need to go on and you need to whatever the going the whatever the going on is like mom says, off you go now. I'd be like, off you go, off you go. Yes, because why? Why is that the last words we say to each other? Off you go. Because you're laughing. I mean, even if you can, you'd be like laughing your fucking heart out.

SPEAKER_02 1:26:34

Oh my god, I could see mom doing that, and all of a sudden you'd be like, what was your what were your mother's last words? Literally, off you go.

SPEAKER_01 1:26:43

Lights out on Jackman as I'm laying there and lights out on Jackman.

SPEAKER_00 1:26:48

Oh god.

SPEAKER_02 1:26:49

No, that one hits too hard to the heart. Off you go and make me laugh. Off you go is better. All right, off you both go.

SPEAKER_00 1:26:56

Love you. Love you both. Thank you, D. Thank you, dance.