While We Still Have Our Wits

Perry Platt was an EMT, then an ICU nurse, then a travel nurse, and none of it fit. She kept moving until she found the one place her puzzle piece finally clicked into place: hospice. 

Perry is a Hospice Inpatient Center Clinical Manager and nurse at Hospice of the Chesapeake, and she is thirty years old, in a field most people picture as older. That vantage point changes everything she sees. In this episode she takes on the words that scare people before anyone explains them, hospice and morphine, and shows what they actually mean. She walks through the gap between what hospice offers and what people take, the difference between giving up and choosing your goals, and why comfort is not the same as surrender. And she makes a case aimed squarely at her own generation: that the best time to decide how you want to be cared for is now, on an ordinary afternoon, while you still have every wit about you to do it right.

This one is for anyone who has ever flinched at the word hospice, anyone who has been putting off a conversation they know is coming, and anyone who assumes this is a subject for later. Perry's answer is that later is a choice too, and not always the one you would make for yourself. There is beauty in the hard moments, she says, and there is real power in choice. The question is only whether you want to come to a slow stop, or an abrupt halt.

Transcript

Perry 0:00

Yes, it's scary and yes, it hurts, but I think it's better to deal with things a little bit more heads-on. It's going to happen no matter what. And you might not pass on hospice, you might pass in a hospital, but I think ultimately when we're looking at hospice care, what is the choice that you want to make for yourself or for your loved one? And that it doesn't have to be scary. You don't have to pass in pain or agitated or scared. You can pass with comfort.

Chance 0:53

Nearly three-quarters of us are expected to care for an aging parent one day. And almost none of us have ever talked about what that will actually require. We're often called a more open generation, one that is able to talk about death more than the generations that came before us, and yet most of us, Perry included, me included, we've never written down a single wish. Perry walked in and made an argument out of exactly that gap. That all of this comes down to a choice, and that the time to make it is now. While you still can. This is episode four. While we still have our wits. Perry didn't start in hospice. She was an EMT, then she worked in the ICU, then as a travel nurse, and she kept moving because nothing quite fit. I asked her to take me back to the beginning.

Perry 2:01

I don't think I really found anything that was fulfilling or interesting to me. Like when I think about as an EMT, like after doing it for about a year, I was like, it's the same thing over and over and over again. So I was like, there's nothing really that's pulling me to stay here. If anything, I was like, this just feels like a stepping stone for me. Um when I think about the ICU, it was such an incredible experience. But at the same time, I just felt like it was wrong. Like, you know, when you shove a puzzle piece and it's not the right fit, that's what it felt like every day I would go to work that I was like, this isn't what I want to do. Like I just, I'm not happy here or I'm stressed out, or um, just it wasn't what nursing, I didn't, it was my first job at a nursing school, and I was like, this isn't what I thought it was going to be. Like, I feel like I'm a almost like a mindless cog in a giant machine. Um, and I was like, this doesn't feel like what I thought it was going to feel like. Um, and then I just kind of found my little niche in the world of hospice, and I was like, this is where my puzzle piece fits the best.

Chance 3:05

Amazing, amazing. Um, and yeah, you you said that everything you wanted nursing to be, you found in hospice. Um, tell me a little bit of what nursing felt like before that and sort of how you've transitioned into hospice. What about it sort of made it feel like, okay, this is the puzzle piece fitting now?

Perry 3:23

I thought nursing when I was getting out of college would be so based on like education, patient advocacy. Um, you know, what's their care plan? What are their goals? How can we support them? What's their education deficit? Um, and then it just kind of felt like we were so task-oriented that everything that I thought it would be, it just wasn't. Like I wasn't so focused on education, I was focused on checking boxes. Um, it felt like my patients weren't quite as human because I looked at them as a checklist. But when I got to hospice, it was like, okay, well, what are their goals? What do they want to do? When we look at all of our medications, we adjust them to fit that patient uniquely. And it's not a one size fits all. And when I was, especially in the ICU, it was like, well, we have a protocol for this. We do it this way, this way, this way, this way. And when I got here, it was like, okay, well, like, let's just look at the bigger picture. Let's, let's, how do we involve the whole care team? And I was like, There's a care team in hospice. Um, so I just think that what I thought nursing would be the advocacy, the education, the support for the caregivers and the patient, that's what hospice has.

Chance 4:39

For a lot of people her age, the first years on the job were the pandemic. Perry graduated nursing school, and then the world she walked into was the ICU during COVID. There is a term for what that does to a clinician. Moral injury. Um, and you said uh in our pre-interview, you talked about this idea of moral injury, which I thought was super interesting. You said when you first read about it, you thought it was kind of made up, and then you realized that it wasn't. So, what changed your mind about that?

Perry 5:12

I don't know if it was just because like younger me was just so snarky or just like, you know, I was just like, man, this is just some made-up BS for lack of a better term. I was, I mean, I was fresh out of college. I mean, I was a little older when I graduated, so we're looking at about six or seven years ago, but I was just like, this is just a fluff article that I'm reading. But the more that um I went through my ICU experience, I graduated nursing school in um the summer of 2019. I got my nursing license, and within like less than a month, I was already like on the unit. Well, then 2020 hit. I was on a medical ICU unit, which um is one of the more specialized, but if you don't fit into surgical and you don't fit into neuro and you're not a baby, you're going to the Mickey. Um, and so we dealt mostly with respiratory failure. So a lot of COVID patients. And I remember just like the almost dead look in my eye every day that I would go into work, or the dread, or the panic, or like the I don't feel like I am doing enough for my patients, or watching, I still remember this. I remember I was late to getting into the room for a for a family to be able to visit with their dying loved one. And I was like, I'm so sorry. And I just remember how every single family member on that Zoom call was just so quiet, and they just stared at their loved one, intubated and unconscious. So after going through that day in and day out, watching people cry or loved ones saying goodbye through a door, like I was like, this is horrible. Like every day I would go in and I have to do this battle with myself to give care to people. But like mentally, it was like, wow, I'm just apathetic and I'm not the person that I used to be.

Chance 7:39

Hospice is a six-month benefit, and most people arrive with about two weeks left. I wanted to understand that gap and what it cost people.

Perry 7:50

I mean, I think death in like American culture is kind of a touchy subject or a melting pot of so many different cultures, and those viewpoints on death continue. Um when I was like on the ICU unit, we would have um a lot of um people of Orthodox Jewish faith, and death was not something that they really discussed. Like you were supposed to live as long as you can. If we look at like faith leaders, even in our communities of like Christian faith, not all of them believe in hospice care because of those practices, that they think that you should do everything you can in order to live.

Chance 8:26

Have you seen folks who are open to it? And like, what does that look like when someone's like, actually, yeah, I want to take this full benefit on?

Perry 8:33

Um, that's usually we're seeing people who are likely going to have a longer length of stay. So when you have neurological conditions like Parkinson's, Huntington's, um, dementia and Alzheimer's, um, their trajectory towards decline is a lot longer. And usually you can sit with the fact that they have been declining. But when you get into cancer, for example, like, you know, when and I I've worked with a lot of providers who say, like, are you ready to quit? And I don't think that's always an appropriate term. So sometimes it comes down to the condition, sometimes it comes down to your culture, your faith. Um, and I think there's racial disparities too. Um, where I think of the four counties that we serve as PG County is one of them. And I I want to say, and maybe someone would correct me on this later, but I feel like PG County, they utilize it the least. And I don't know if that's because, you know, the African American community has a distrust of the medical system. But then again, if you look at our history, like it's it's kind of valid.

Chance 9:33

It's it's very valid. No, absolutely. And underneath the fear of the word is a fear that hospice means giving up. But Perry hears something completely different. So talk to me a little bit about just this idea of embracing um you talked about it's not about giving up, but it's about embracing a different way of living. Um, where did that come to you? Like where where did this notion come to you from?

Perry 9:58

Probably w when I started working in hospice and I just saw like, you know, what is their goal? Is the goal to try to make it to graduation? Is it the goal to make it to a birthday party or an anniversary? Or like let's have just one really good family meal? Or what if they're just waiting on somebody from out of town to come and visit? Um, so let's like it's not giving up. It's not like, do you want to keep fighting? It's what are your goals and what do you want out of life? Like, if your goal is I want to talk to my mom, like I'm 30, you know, so like I'm like, do I want to talk to my mom or dad one more time? Or if I want to see like my sister who lives like, you know, five to ten hours away from me, like, is that my goal? Or do I want to keep going to the hospital? Do I want to keep being poked and prodded? Do I want to have treatments and be woken up at all hours of the night because I'm in the hospital? Do I want to go to outpatient services and have to deal with the insurances? Or like, do I just wanna say, I want to be home with my cats? I want to be home wrapped in the fuzzy blanket that I love, comfortable, not wearing a gown, not having a billion people walk into my room. I think about like what do I want at the end of my life? And I don't want to be scared. I don't want to be in pain. I don't want to be confused. Um, especially if we look at our friends who have dementia or Alzheimer's, when you take them out of their environment, they're so confused. Like they they might not be able to communicate as effectively. They might not recognize that you're part of their family, but being in their own environment helps orient them to know that they're safe. And when you pull them out of that, they don't feel safe. And I think about what how would I feel like in like one of my patients back in the ICU if I was restrained? Um, I had a breathing tube in. Is that how I would want to spend the re last few moments of my life on earth? Or do I want to be at home in my bed with my family, with my cats curled up with me?

Chance 12:01

Yeah. Wow. If hospice is the first feared word, morphine might be the second. I asked Perry about the myth she has to answer more than any other, and about the fear built into the language of all of this. What do people think morphine is going to do?

Perry 12:18

It's gonna kill them, and it's it's just not. When we're looking at giving you any sort of medication, um, we're looking at what is the least amount to be effective to manage the symptom. And morphine is the scary one because it's an opioid, and because of the opioid crisis in this country, it kind of got like kind of, I think, a big wrap. But like when you really look at it, if you were using a medication for a purpose and not abusing it, that's the difference. If you were a healthy adult taking morphine because you're trying to numb some kind of psychological pain, that's abusing it. But if you're using it to try to mitigate the fact that you're in pain or you're having trouble breathing, um, then morphine is the right medication for you. The what's I think what also scares people is that morphine um depresses the respiratory center of your brain. So it tells you how you're supposed to breathe. And morphine is like, hey, you can just chill. And if you give too much, yes, that will cause you not to be able to breathe effectively. But if you give it under the guise of a doctor and a nurse who are checking on your symptoms and making sure that you're awake or that your breathing is calm, that's what we're looking for. We're not trying to depress your respiratory system so you can't breathe. We're trying to calm it down. And the morphine's just gonna be like, hey, we can chill. We don't have to work so hard. You know that, right?

Chance 13:38

The common theme I'm hearing is the goal is comfort, right? The goal is comfort in the end, the goal is choice, um, not being, you know, crisis to crisis, like having a team to support you um making these huge decisions. And the idea that there is all of this mis miscommunication about what hospice does really hinders the ability to make these choices in in a beautiful way.

Perry 14:02

And then you know, something else that you're mentioning about having like, you know, a team behind you. It's like, do you want to go to the ER because you you fell and you might have a sprain? Or like do we need to put you in a sling? I mean, at least for this organization, we can do a mobile x-ray. Like, you don't have to go to the hospital. You could stay at home. It might take a little longer, but like, do you want to sit in those uncomfortable plastic chairs for eight hours?

Chance 14:26

Or yeah, for for God knows how long. Also, yeah, a true benefit, and I'm I'm excited for us to keep talking about some of the ways that folks can can take advantage of this amazing opportunity to again make choices that are important for you in the end of life care. Um talk to me about what happens when you walk into a home and a family is terrified of medications, they don't understand. Like how do you handle that conversation?

Perry 14:53

I mean, usually I start explaining like the pathways to these medicines. Like, you know, sometimes like uh like the like you you know, you have a go-to, like how do we want to try to handle a certain crisis? If I come in and someone's having a severe amount of pain for like hours, I'm gonna say, well, let's go ahead and give morphine, and if they're afraid of that, I'm gonna, you know, give that same spiel I've already said. Um, infants to adults, we're gonna just start off with five milligrams. What we're looking for is, you know, if they're let's say they're not quite as verbal, like do they have that furrow on their brow? Are they musc are their muscles tight? Morphine is just saying, like, hey, we can calm down. And let's say morphine's not effective. There's other medicines that we can use. Like, are they agitated because they're in pain, or are they agitated just because of something else? Are they constipated? Um, when so like Odd asked questions about when was their last mouth movement? Because I don't know if you've ever been constipated.

Chance 15:46

Yes, I have.

Perry 15:48

It's so painful.

Chance 15:51

It is not fun.

Perry 15:53

It's not fun. So it's it's so painful. So, like, yeah, let's try to give them some relief that way. They might not need an opioid. So we're not here to push drugs on you. We're we're here to make sure that you're not withering in pain while you're at home so you can actually have the energy to enjoy time with your loved ones.

Chance 16:11

It is the same problem as the word hospice. A word does some sort of damage before anyone gets the chance to actually explain it, to actually explore it.

Perry 16:22

I mean, there's a lot of really scary words in healthcare in general, and you have to define them. And if you can't define what it is, that's terrifying. Someone tells you you you're in kidney failure, like that's scary. Where do we go from here? And hospice is no different. You need to explain what is hospice? What are they gonna do for you and why now? Is it because you have cancer and you're saying that you don't want to continue with treatment? Or are you a caregiver saying, I don't know what's wrong with my loved one? They keep they're having recurrent like UTIs, they're increasingly confused. I know they have dementia, but it seems like something more is going on here. That's when we want to introduce hospice. It's not you're gonna go home and die, it's we're gonna help make you comfortable during the last phase of your life. And that's a very different conversation.

Chance 17:14

This is where the thread I started with comes back around. Perry is 30 in a field most people picture as older, and being here every day has changed how she thinks about her own life. Remember that gap I mentioned? A generation that plans for everything, but also really doesn't have a plan for this.

Perry 17:38

It definitely makes me think more about my own mortality and what do I want out of my life. And I I think sometimes my friends and family are think I'm so silly when I'm just like anyone can die at any time, and they're like, yes, but we don't need to think about that all the time, Perry.

Chance 17:52

Um, that's exactly what you were saying, like as far as the our culture not being open to these conversations, yeah.

Perry 17:59

I mean, it's scary. You you hope that you're gonna get to live to be a hundred, but I mean, that's not our life expectancy. And I hope I can, but also like I could get cancer next year, and that's not me trying to be pessimistic. It's just like what's that's the reality. And if I did have cancer, what would I want to do? How bad is my cancer? And is hospice appropriate, or is going through a curative route more appropriate? I guess like it just you know, it it circles back to like this isn't a fun conversation, like this sucks. Like, you know, hospice is not fun. I'm not saying it's all sh sunshine and rainbows. Um, but you know, it's part of life. Death being born and death are two absolutes.

Chance 18:40

So we just it's like we have to talk about it. We have and I I for me, I think also being young and new in this field, I'm thinking a lot about the idea of being able to make a choice before it's taken away from me, um, before I don't have the ability to make choices. Um so that's been a huge like uh eye-opening um experience for me in and thinking about that.

Perry 19:04

Oh, I can tell you stories from the ICU of like, you know, you're a ward of the state.

Chance 19:08

Yeah.

Perry 19:09

You're an adult, a ward of the state. You have no choice because you have no voice. You're you're not able to communicate your needs. Um, and so the state decides. And do you want some stranger making the decision for you because you don't have a family member to do it? Yeah. Or do you want to put that in writing now? And honestly, like I'm 30 years old, I'm like, I really should write my advanced directive.

Chance 19:32

I also, yeah, I have been I've been thinking about that, and I'm like, I I I want to even kind of push that narrative for other 30-year-old millennials, Gen Zs, whatever it may be, because I'm like, ultimately, this is the best thing that we can do right now when we have all of our wits still about us and are as healthy as can be. Um, it makes a lot of sense to try to get some of these things in order.

Perry 19:53

Um you know, if you're if your goals change, just update the forum. It's the same thing with hospice. Like, I I would call patients all the time and they're like, I don't know if this is right for me right now. I was like, listen, like, I'm not here to convince you to stay. I'm just here to talk to you about what are your goals. And if your goals change, like that's okay. Yeah, yeah. Um, but like let's talk about where these feelings are coming from and make sure you're you know you're making the best choice. Yeah. Yeah.

Chance 20:22

I asked Perry what she knows about living that she did not know before this work. And she answered with a story.

Perry 20:32

I think I kind of knew that life was really short, but I didn't really understand how short. But I think the more that I'm thinking about your question, instead of just talking to like let the time pass, um, is you know, you can find a lot of beauty in really some sad moments. Um, I think probably the the most beautiful moment I ever had was I walked into a patient's home and I knew right away she was gonna go any minute. She was gray, she was barely breathing. Um, and I was like, okay, I don't know a lot about this family. I don't know. I was so I said to her, I was like, hey, because she wasn't communicative, but I I still talk to everybody, and I'm like, hey, we're gonna go into the other room and we're gonna be back. And I pull everyone in and I'm like, we do not have a lot of time. Um, is there anything you want to do or say? And I kind of rush through my kind of like, hey, this is happening right now. And they're like, Well, she has somebody who was supposed to come on a plane like tonight, but it got delayed to a storm, so let's call them up. And so they just they all went around her and they told her all the reasons why they loved her, and they called up that loved one that was across the state, across the country, and they all just said their goodbyes, and that's when she passed. So it was such a beautiful moment. Was that painful for them? Absolutely, but there was still a way for them to kind of like let go and grieve while she was still there. So I think there's beauty in death, but it still sucks.

Chance 22:13

The youngest person in the room handed me one of the oldest lessons there is. Perry is 30 and still hasn't written her advanced directive, and neither have I. And neither, I would guess most of the people listening. And that's the choice she keeps pointing at. And it's not as dramatic as one would think. It is just one form: an advanced directive, filled out on an ordinary afternoon, while we still have every wit about us to do it right. It is scary, it hurts, but you do not have to do any of it alone. This has been to no ends. Take care of the people who take care of you and give yourself the choice while you still have it. This has been to no ends, a Chesapeake Health Partners production.