Demystifying Hospice: When, How, and Why It Matters w/ Karissa

#181: Death doesn't have to be a cold, clinical experience tucked away in hospital corners. Yet the word "hospice" still strikes fear in the hearts of so many, often because we fundamentally misunderstand what hospice truly offers.

In this profound conversation with Karissa, a veteran hospice nurse with eight years of experience across four different states, we peel back the layers of misconception surrounding end-of-life care. "If death is inevitable, it matters where and when and how," she explains, challenging our cultural tendency to avoid these conversations until it's often too late.

What exactly happens when hospice steps in? Far from being just for the imminently dying, hospice provides comprehensive support for both patients and families, sometimes for years rather than days. Karissa walks us through the full spectrum of resources available – from 24/7 nursing support and equipment to spiritual care and family counseling – all covered 100% by Medicare and Medicaid. We explore the telltale signs that it might be time to consider hospice for conditions like CHF, COPD, Alzheimer's, and cancer, and why waiting too long often leads to preventable suffering.

Perhaps most beautifully, Karissa describes her role as "midwifery for the dying," drawing a powerful parallel between how we usher life into this world and how we can compassionately guide it out. 

Whether you're a healthcare provider hesitant to broach this topic with patients, a family member wondering if it's time to consider additional support, or simply someone wanting to understand this inevitable part of the human experience, this episode offers practical wisdom, honest insights, and unexpected moments of lightness in what's typically considered a heavy subject. Listen, share, and join the conversation about making the end of life as meaningful and comfortable as possible.

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Chapters

• 0:00 Introducing Hospice Care
• 3:25 Meet Carissa: Journey to Hospice Nursing
• 6:15 What Hospice Really Means
• 8:07 Disease Processes and Timing of Hospice
• 17:35 Resources and Coverage Under Hospice
• 19:45 [Ad] PodMatch
• 20:22 (Cont.) Resources and Coverage Under Hospice
• 28:31 Advocating for Patients and Families
• 41:21 The Beauty in End-of-Life Care
• 46:31 Rapid Fire Questions and Closing Thoughts

Transcript

Johnna: 0:00

What is up everyone? Welcome back to another episode of the Babbles Nonsense podcast. Before I get into what today's show is about, I want to first apologize. My mic is a little echoey in the interview so I got to figure out some equipment issues, but it's still a great interview nonetheless.

Johnna: 0:14

Over here at Babbles Nonsense, you know that this is the show where we do, you know, have malfunctions with equipment, but we also talk about the messy, the meaningful and sometimes misunderstood parts of life. Today's episode is one I have been wanting to have for a very long time, because we're talking about something that touches all of us but still feels taboo to say out loud, and that topic is hospice. I'm sitting down with an incredible hospice nurse and her name is Carissa. She's going to help pull back the curtain, not just on what hospice is, but what it isn't. We're breaking myths, talking real emotions and even comparing how an ER nurse and a hospice nurse can see quote-unquote emergencies very differently. If you've ever wondered when hospice is actually needed, why it's often called too late or how we can stop treating it like a scary last resort, this conversation is for you. Let's talk about death with honesty, compassion and a little bit of humor Because, yes, we can all still laugh through the heavy stuff.

Johnna: 1:08

Let's get into the interview Nonsense Podcast. Today I'm sitting down with a hospice nurse, ms Carissa, that I recently met and she just blew me away with the knowledge that she had about hospice. And, considering I do have a medical background that we recently started talking about on the podcast I don't know why a long time I wasn't talking about it, but I thought you would be the perfect person to kind of help guide this conversation, because I think this is a conversation that needs to be had to kind of break that taboo-ish term hospice away from other people. Definitely so. Welcome to the Bowels Nonsense Podcast, thank you.

Karissa : 1:59

Thanks for having me.

Johnna: 2:00

Absolutely so. First, I want to know a little bit about you. Like I know I've met you and we've talked, so I know that you came from the Chicago area yes, and I want to know, like, what like is that where you're originally from, in Chicago? Yes, and what drove you to move to Huntsville?

Karissa : 2:18

Okay, so I have been doing hospice for eight years. I've been a nurse for 10 years, and I did grow up in Chicago. I knew immediately in nursing school that I wanted to be a hospice nurse. I have really good professors, though. That told me maybe you should try practicing your skills first on the floor, and so I did that. I did cardiac nursing for two years at the University of Chicago and then I went into hospice.

Johnna: 2:49

And you said you've been doing hospice for how long? Now? Eight years, wow, that's a long time for especially hospice. Because what's the burnout rate? Is it? Is it 10? Yes, so you're giving up on your burnout rate? Yes, Because I was in emergency care for a total of let's see. I started in 2011 to 22. So, yeah, with a six-month stint in trauma, which was no different, so I hit my burnout rate, especially with COVID.

Karissa : 3:19

Definitely.

Johnna: 3:20

Yeah, which I'm sure you saw a lot during COVID as well we did.

Karissa : 3:23

Originally we did not take COVID patients. At the time there was some uncertainty about it, and then, obviously, as the deaths rose, we were able to start taking on COVID patients and bringing them home safely to pass away.

Johnna: 3:38

But you mentioned earlier. You were like you knew when you went into it, or before you you went into it, that you wanted to be a hospice nurse. Can you kind of explain how you knew?

Karissa : 3:47

that. Yes, there was a moment in nursing school and we had a slide. That was very minimal and it was at the very last year of nursing school. We didn't really even talk about hospice that much.

Karissa : 4:04

We don't right yeah and it was just one slide and she briefly went over what hospice was what we do with it in nursing and honestly it was like a warm light went over me and you were just like and I knew I was like this is what I'm meant to do. That kind of just gave me like whole body chills.

Johnna: 4:24

Yeah.

Karissa : 4:25

It really is a calling. You have to have that calling to do it.

Johnna: 4:32

I think it's also a personality trait. Like you, have a very caring which and I've mentioned this on my podcast before like people think all nurses are that nurturing, caring when we're not. I think there's a place for it and a time for it.

Johnna: 4:44

Like me, being in the ER for as long as I was, I did become very cold and I'm going to get to that conversation that you and I had when we first met, but, like I think it was more because you don't want to get close to your patients in the ER, because if I am sitting with a patient that just passed and then I still have a 12 hour shift to do, do, and it's maybe trauma or, you know, a kid's sick or something you have to be able to immediately, at that moment, move on to the next, you don't have that time to debrief. You know, whatever it is you may do at home to like get yourself back together for the next day, you don't have that time in the ER. So I think you start slowly building this wall that you didn't realize you were building. Yes, definitely, and I don't know if you do that in hospice as well as a nurse to guard your heart.

Karissa : 5:30

You can definitely experience a type of burnout and we call that compassion fatigue. Okay, yeah, that makes sense, you know, once you recognize that it's time to step away for a little bit.

Johnna: 5:45

Have you ever had to do that?

Karissa : 5:46

like step away. I did, I did.

Johnna: 5:48

Uh, it was after covid, after covid, that's when I I was like I can't do this because, but I mean honestly, if you think about it, like the er hospice, um, what other those were?

Johnna: 6:00

in the icu so hard with you know, disease process, that was new, but diving into hospice a little bit deeper. So for you, in your terminology, what does hospice mean to you? Because I know, like, when I hear it's not coming from the hospice world or maybe I've talked to patients, families and I'm not the best at it because I'm not from the hospice world they immediately think no, no, no, that means I'm dying tomorrow. So to you, if you had to explain it to someone, what does it mean to you and how would you explain it to someone?

Karissa : 6:36

Hospice is end-of-life care and if I could put it in a couple of sentences, I would say if death is inevitable, it matters where and when and how so we receive these terminal diagnoses. It matters. What do we do now? And a lot of times a lot of families think they hear six months and they say I think they have longer and that could be so they could have longer than six months. This is true. That's just a window that we use when we say the disease, if it takes its natural course, that, yes, the patient could pass in six months, but typically diseases don't take a natural course, so we have patients that are on hospice for years.

Johnna: 7:25

For years, because I've seen, I've met patients I think one was on for three years or something like that, and they were. I mean, it's such I'm trying to pick up the words like it's so like, because even after I met you and I've identified more patients like going forward, it's just such a it's almost like a weight lifted off that patient's shoulder, because sometimes I feel like patients aren't doing it, like maybe they in their heart know that's the right decision for themselves, but maybe family's not ready, or vice versa, family's already, patient's not ready. So how do you navigate that conversation when you're well? First let's talk about what disease processes do you see that should or could go to hospice.

Karissa : 8:07

Typically we see a lot of CHF, which is congestive heart failure, COPD, pulmonary disease and Alzheimer's. Patients are taking care of them later than what we're supposed to because we're not seeing, maybe clinically, as many symptoms to alert us that they are at the end stage of their disease.

Johnna: 8:33

I agree. I agree with that because I do work a part-time job. I don't even know if I've talked about this on the podcast. I do work a part-time job outside of my full-time job, where I'm in assisted livings and memory cares, and ever since meeting you, I've even started noticing patients that I'm like, oh no, they probably should go to hospice, and that one's a hard one that I've found having conversations with families because the patient doesn't look sick, right.

Karissa : 9:00

So that's where it's hard. Yes, definitely, and Alzheimer's can be a disease that goes on for so many years, and a lot of times the families become complacent as well, and they don't know how to recognize those symptoms either. That Alzheimer's is. Even though the patient might have been diagnosed 10 years ago, it's still a disease that will lead to their death.

Johnna: 9:25

Do you have a lot of cancer patients?

Karissa : 9:27

We have a lot of cancer patients. However, typically we'll get our cancer patients towards the very end of life, unless that patient is advocating for themselves and saying, no, I don't want treatment. That would be someone where I've had patients that were like in their 80s right and they're diagnosed with cancer and they are very strong on. There's no reason for me to do chemo. I'm 87. I don't want to do chemo. And then we'll receive them at the end of life. Typically we'll have them for a little while longer than our younger cancer patients we'll have them for a little while longer than our younger cancer patients.

Johnna: 10:11

Right, I've noticed that, like my uncle for one, he in my opinion did not have probably the best death he could have had, if he maybe. And this was when I was still a nurse, so I didn't know much about like I knew what we learned the one slide nursing school and he was in Tennessee, so it wasn't like I was his, but I feel like I kind of failed him because I should have educated him a little bit more. I knew what his wishes were and he had COPD and he also had lung cancer and his wishes were no intubation. You know I'm giving up chemo. I've lived a good life because he was older and unfortunately, you know, he passed out at home with his brother when it scared him. So you know they decided to intubate him. He didn't, you know, have the proper paperwork in place. I don't believe.

Johnna: 10:54

And so then you know he was taken to the ICU and things like that, and immediately when he woke up, you know he was coherent, he was awake, he was able to write and he wrote get, get this tube out of me. He tried to take it out himself, which led him into restraints and you know the whole process. But then he had to then, you know, be extubated and then pass away in a hospital versus passing away at his home. That he told me that's what he wanted. So I like, after seeing that and knowing that, and then I worked with the doctor, dr will Williams. I'm not sure if you're familiar with her in town, but she is a huge hospice advocate and wrote a book called Death and Dying and she talks about how we talk about it too late from and she was talking about it from an emergency room doctor's perspective, saying she has, she hates having to apologize to patients and families, saying I'm sorry, this is the first time you're meeting me and I'm telling you, it's probably time.

Karissa : 11:46

Yes, yeah, definitely. You bring up a lot of great points. You know, as nurses too, we all have that moment with our family member that we feel like that we could have done enough.

Karissa : 11:57

We could have done more, I should say, or we didn't do enough. So I understand your viewpoint. With that, one of the important things that hospice actually helps with is advanced planning. So when families come to us and patients come to us, we are able to help them with their POA paperwork, living wills, dnrs, and we have an entire team of workers that's able to help with that planning. So your uncle in that event maybe would not have been intubated.

Karissa : 12:29

And we also do what's called compassionate extubations. So we are available and present at the hospital with the families while that process is taking place, and we're also guiding those nurses there, the ICU nurses. They really appreciate us being there because intubations is their specialty, but not extubations, right.

Johnna: 12:51

It's a specialty anyways to like, like you said, have that compassion with the family, to bond with that family and to be able to walk them through that step by step. Yes, Because I found that was the most difficult thing for me in the ER, when it was something traumatic or difficult like that. I found that hard because I had built that wall so high. Yes, I didn't know how to tear it down, to be able to sit there and go. It's okay, you know. No, I worked in the ICU for a year and I, you do do that. You sit with families, you hold their hands, you do those things. But in the ER we didn't typically typically, I'm not saying we didn't do it any- it wasn't a norm.

Johnna: 13:27

Because you're seeing, you're usually not seeing critical, critical patients now again like you're in the ER. You see a lot of just like normal abdominal pain chest pain not everyone is dying when they walk into the ER right which is what people expect from TV shows. Um, but what would you say? Because that's something I think that we don't do well enough, even educating nursing staff.

Johnna: 13:51

Because your nurses are the first line to that patient and if I had a lot of nursing friends listening to this, what would you say? When to advocate, advocate, how to advocate and how to start that discussion, even if you're scared and don't know what to say.

Karissa : 14:08

Yes, definitely Pull in your resources, definitely, of course, start with your supervisors, charge nurses, and start there. If they don't have the proper resources, go a little higher up. Lean on those hospice companies when they come in. When they come in, take advantage of those opportunities when they are dropping off pamphlets, booklets, introduce yourself. If you feel a calling. It's likely, because you'll approach that you'll have that situation or maybe something sat uneasy with you.

Karissa : 14:41

Maybe you had a patient that you felt like what would have happened if I was more comfortable to talk about hospice with them. So, definitely pulling on your resources, going out to those CEU events even, and learning more about hospice so that you're comfortable and confident when you're able to sit down and talk to those families. Last but not least, again, if you need to call in a hospice company to have a conversation with the family, that is our specialty, that is what we do. So we have the time, whereas you may only have five, 10 minutes, but you really fill in this pool that this patient needs hospice. Call in your local hospice liaisons. They're able to do that, they're able to spend time. I've had informationals last two hours even, but that is what I do.

Johnna: 15:28

Right, and I know when I first met you and we were, you know it was over a hospice patient, obviously, and I was, and we were talking and that was the first question I asked you. I was like I don't know sometimes how to approach this conversation with family or the patient itself, because sometimes you know, you learn your patient and sometimes you're like I don't think this patient is ready to hear this.

Johnna: 15:50

And you gave me the best advice. You said all it takes is a simple consult. You can tell the family that. You can tell the family like, hey, this is, this is a resource, you know, do you want to hear what they have to say? Just to get you in the door, because you're going to explain it and sell it way better than someone who doesn't have that experience. So that was the best advice you gave me that day.

Karissa : 16:10

Yes, definitely, and that's what I was going to say too, is we don't come in typically and just say, hi, we're hospice, because they're going to just shut right down. No, I don't want you, I don't need you. That fear rises. But when you say it in a different way, how would you like to discuss more resources for your loved one, your mom, your dad, so that we can get some more support in here, right? Typically, families are a little more open to that viewpoint. Once I come in and I explain everything I do, nine times out of 10, they don't care what it's called. They know that they need it.

Johnna: 16:48

Right. Well, I told you, and I'll just kind of give an example, I had a patient not too long ago that Alzheimer's over 100 years old. Which, wonderful for her Like she, you know, walking around didn't look sick because it was that Alzheimer's disease.

Johnna: 17:05

but was starting to fall more and starting to not want to eat, refusing her medications. And so the family, you know, had a conversation with the family and I was like, have you ever considered hospice? You know that might be something she's ready for. And he was like she's not ready for that. And that's when I said okay, I was like you know, that's okay if you're not ready, but this is just something, maybe just to hear what they have, the services they offer, maybe they have more nursing staff that can help. So I did exactly and he then was like, okay, yeah, I'll hear them out yes and called you in.

Johnna: 17:36

They heard you out and guess what?

Karissa : 17:37

yeah, they're on hospice. Yes, exactly it worked. Yes, it does initially.

Johnna: 17:42

That initial thing was no, she's not ready, and I was like well, I think she could be. But that's also a specialty. It's no different, I guess, than sending someone to a cardiologist for a heart problem or sending someone to the oncologist for cancer. You know, it's another specialty. Let's bring in someone who knows how to talk about this in a more compassionate way.

Johnna: 18:02

Who can bring it up? So it's not like that immediate. Like I said, it's very taboo. No one wants to bring it up, no one wants to say the word hospice. Right, you know, it's almost like saying Beetlejuice three times. Yes, you know, no one wants to.

Karissa : 18:15

Yes, they're so fearful of it. You bring up a good point too. So I have done hospice in four different states actually.

Johnna: 18:21

Yeah, I was going to ask you about that.

Karissa : 18:23

I have, and it's actually very much based on location, because when I did hospice in Florida of course that is our aging capital, if you would and so they were more open to hospice. When that was brought up, the family was like great, we qualify, it's time, awesome, yes, bring them in. Because they were more aware of our resources. And it also starts with the physician. It starts with the primary care and or maybe they've had a bad experience with hospice, they don't want their patients on hospice. Then that's what makes it difficult for us to come in as well with the families if they don't have the support from their primary physician, who they've been seeing likely for years, like 20, 30 years, yes, yeah Now.

Johnna: 19:25

So, since you have done hospice in different states, what have you noticed I know you just mentioned Florida, like you noticed that they're more receptive. What have you noticed? Difference wise, like even in state laws? Is there differences in the state laws around hospice like Florida, alabama, and then you being in Illinois.

Karissa : 20:14

Yeah, so we are governed by federal, so the laws across hospice are the same by the state. What I've noticed, though, in Alabama and Florida there is what's called a certificate of need.

Johnna: 20:29

Yeah.

Karissa : 20:30

And so hospices just can't come and open. The government has to see a need for it in that area.

Johnna: 20:37

Yeah, that's the same with the hospital, unfortunately. That's why we only have one I didn't know that yeah, so at state of alabama state of need. You know that for the hospital, hospital builds, yeah, so I think it's that way, just for any. I don't know if that's considered like a government no, it's not a government entity but like, yeah, just medical care, I mean's not a government entity but like yeah, for just medical care, I mean obviously not primary care physicians and stuff like that, but for opening hospitals.

Johnna: 21:04

And then I didn't realize it was a state of need for hospice. I just thought it was only for hospitals.

Karissa : 21:10

I didn't know it was for hospitals. I thought it was only for hospices.

Johnna: 21:13

Yeah, have you noticed a difference like in Illinois versus Alabama, when like perception wise with hospice Definitely.

Karissa : 21:21

And that's because what I've noticed, something that they're doing differently is they are educating the residents before they come out of medical school. So they are taking courses on hospice now, before they leave medical school, and then doing that now that when we have them out in the field, they're more comfortable with it, having those conversations with the families. That's something that I'm not noticing happening here and so, but your local hospice usually will host those events and typically you can get CEU credits.

Karissa : 21:53

And so I would say if they're offering them, I would take it.

Johnna: 21:56

Where can someone so like I'm a provider, I haven't seen these like where would those events be posted so that maybe, like, if people are listening to this, they could be on the lookout for it?

Karissa : 22:06

I would check your local hospice websites or even give them a call, shoot them an email. If you have a known clinical liaison, you can ask her. Okay, those events are usually posted there, and a lot of times too, we have those events at the assisted living facilities.

Johnna: 22:23

Okay, that makes sense. I mean age appropriate.

Karissa : 22:26

Exactly, or our skilled nursing homes, and anyone is welcome to come.

Johnna: 22:32

No, I love that. And what would you consider being the biggest myth or misconception about hospice?

Karissa : 22:40

It's that the patient is dying right then, at that moment.

Johnna: 22:43

Yeah, I agree, I've seen that too, because people like I've seen it in their eyes. It's almost like when you say it they're very fearful of it, but then it's almost like because I've seen both sides of it, right, like I've seen where I've talked to them about it and they had that fear, but then they agreed to go to hospice and then they're, like, the most at peace once they made that decision. Yes, definitely.

Karissa : 23:05

And so and I know some listeners might say well, you know, I did have a patient or a family member that went to hospice and they did pass away within a couple of days, but that's because we didn't get their referral early enough days. But that's because we didn't get their referral early enough because those signs were likely there six months prior or more and then we didn't get the actual referral for hospice to come in until they were actually transitioning.

Johnna: 23:31

Right. So what signs and symptoms can we all, as providers, nursing staff and maybe even families, start watching for in these disease processes?

Karissa : 23:40

when you're like OK, maybe it is time to call in hospice, yes, and taking into consideration their core morbidities and what the diagnosis is, typically we look for more weakness that they're having. We're looking for they're not eating anymore, they're not, they're losing weight. They're sleeping looking for they're not eating anymore, they're losing weight, they're sleeping more. They're not engaging more, kind of like the body and the spirit is starting to pull back. You'll notice that more falls, increased ER visits, increased infections. Those are what we're looking for and they're specific to diseases.

Karissa : 24:16

Yes, typically we'll see those more with our Alzheimer's patients. When we look at other diseases like heart failure or COPD, we look at are they maxed out on treatments? You might have that patient, a CHF patient, that's constantly calling after hours to their primary care physician or they're going to the hospital more, more ER visits. Hospice can typically come in at that time because likely they're going to the hospital more, more ER visits. Hospice can typically come in at that time because likely they're maxed out on treatment and what we need to be managing is likely their anxiety and shortness of breath.

Karissa : 24:48

Right the symptoms, not exactly the disease.

Johnna: 24:51

No, yeah, no, that's perfect, because I think that's the hardest one I've seen with families is like when the elderly have quit eating you know everyone in our country is about. Why are they not eating?

Karissa : 25:04

Yes, yeah.

Johnna: 25:05

But sometimes like it's I don't know how to say that Like it's. It's worse to then force that instead of just accepting it and saying this is a sign. Yes, you know that something's not right.

Karissa : 25:17

So I have a little saying that I say to families that really clicks with them. And to start with that, with the feeding, I say listen to our bodies. At that time the body is saying I don't need it. So if we have a car, if the engine is going out on the car, the engine is out will we put gas in it Right now.

Johnna: 25:38

Right now.

Karissa : 25:38

Because the engine is going out on the car. The engine is out. Will we put gas in it Right now? Right, no, because the engine is going out and it can make things worse. Because now we're forcing more of the food, and it's because that's the way we show love as Americans. You know, if you're sad, come on, let's go eat, if you're sick here, soup, that's how we socialize, that's our gatherings. There's always food involved and so that's ingrained in us.

Karissa : 26:07

And I typically just tell families that you can show love in other ways. They feel like that they're giving up or they're starving their loved one. But really it's the body saying I don't need that right now, I don't need that fuel. And even when you get to that point, you'll see grandma or grandpa they're sleeping more, they're not going out, they're just sitting in their chair. So they're not using energy anymore either, and so they don't need that fuel.

Johnna: 26:32

Right and it can kind of overwhelm them. It's just I think that's the biggest one that I've seen with families when, like, when they call me or something and they're like I need you to do something, I need you to add some medication to give them an appetite, or, and I'm like and I think that's something that may be a key to providers too if families are calling you asking for an appetite enhancement or booze shakes or something like that and I'm not saying all the time, obviously this is with, like, we can't just say you know, it's all dependent on the patient, right?

Karissa : 26:59

And the end stage of their disease. Where are we at Right.

Johnna: 27:03

And I think that may be a key to the provider, to them Maybe at that point go hey, yeah, actually, let's talk about that, you know, and then maybe transition into the conversation of hospice, because that could be a potential way of bringing that in as well.

Karissa : 27:16

Definitely so. When we talk about that, like we said, where are we with the disease? Had this family? Have they been coming in more? Have they been calling more? Is this patient having falls? How many ER visits have they had over the last three months, six months? How many infections have they had over three or six months? When we start painting that picture and putting it together, so it isn't just one thing where it's just increased infections or just falls or just not eating, we are looking at all of these things and painting those pictures of. Okay, maybe it's time to bring in some extra support for you.

Johnna: 27:52

And when we talk about the support that hospice has, I know y'all have several different resources that people don't even realize. Yes, what kind of resources does hospice bring in? Because I know that y'all have like things like palliative care, yes, and then extra nursing staff, and so I've been taught by another hospice company to say, actually, this could just be an extra set of hands for you, sure.

Karissa : 28:12

You can say that. So we have an entire team. We have our medical director, our hospice physician, we have social workers, nurses, chaplains, and we have certified nursing assistants as well. That entire team is brought together for that family.

Karissa : 28:28

The reason why we have a chaplain is because, as much as a physical experience, it's a spiritual one as well. So we might have I had a patient that was Catholic, and three o'clock in the morning that patient became active and hadn't received their last rites, and so our chaplain was able to get in touch with a priest who was able to come to the house at that time and give the patient their last rites before they passed away. Some families haven't been able to get to church, so they appreciate when our chaplain can come and there's some spiritual experiences that they need to talk about before they can let go as well. We provide 24-hour support, so we provide 24-hour support. So 2, 3, 4 o'clock in the morning, if that family is needing support, if the patient is needing some care, we can have nurses want to be intubated, who did not want all that stuff.

Johnna: 29:40

When you get to that moment, you don't know what kind of decision you'll make, because I can't, like. I know like I have a living will at a young age, at my age. But things like not being able to breathe, that could become very scary for the patient if they're not on a hospice service, for someone to give them that support, to give them that medication, if you're just at home trying to deal with it yourself, that is a very scary experience. I would say yes, intubate me.

Karissa : 29:57

Yes, definitely.

Johnna: 29:58

I mean who's trying to drown alive?

Karissa : 30:00

Yes, yes, yes, yes. And typically when your nurse comes in we can catch that, usually before it gets that bad Right, because we are assessing them and so we can say this patient is having some increased shortness of breath. So we start titrating medications, we get oxygen into the home and so that way it doesn't get nine out of 10 with shortness of breath, and that's. Another thing is that we provide equipment as well. That's all covered. Hospice is 100% covered by Medicare and Medicaid. That's crazy.

Johnna: 30:34

We don't even utilize it and I think you know some people actually had a patient which our mutual patient, which he educated me. He was like can you put me on hospice? I don't think I'm going to have enough money to live the rest of my life and I was like, wait what?

Johnna: 30:49

And I was like I don't think that's a reason to go on hospice. I said but you do have conditions, I think. Could you know. But he's very healthy elderly man, other than like his his new like, where he couldn't swallow because he had developed. And I was like, yeah, let's do it. You know, of course y'all were like, yeah, he qualifies. And I was like he just told me that you know he doesn't have enough money. You're like, yeah, all this is covered. Yeah, I was like I did not know that.

Karissa : 31:11

Yeah, a lot of families are like what? This is all covered. Yes, this is 100% covered. We cover equipment, medical supplies and equipment. Things like a bed you might need a hospital bed wheelchairs, walkers we cover that Bedside commodes. Certain medications yes definitely Certain medications, anything that's related to the terminal illness and then, of course, everything that's related to their symptom management. So once we explain that to the families, they are like, oh my God, a lot of them.

Johnna: 31:45

That's a huge weight, especially in the elderly, when you're on a fixed income you're on retirement. You know, some people don't have pensions, some people have supplemental insurance plans when they get older, so chronic disease processes can become very expensive, which in itself is a whole other podcast, yeah.

Karissa : 32:04

Yeah, yeah it is. It can be very expensive. And then even speaking of expensive placement is it can be very expensive. And then, even speaking of expensive placement, so when we have an assisted living facility and we have a patient in there, a lot of times if the patient needs more care with their activities of daily living, they don't qualify to be in that assisted living facility anymore. That nine times out of 10 coincides with hospice, that it's time to bring hospice in. If this is happening, and so we also help with placing the patient, we have our social worker reach out to different skilled nursing facilities and we take that weight off of the family. We find the facilities, we review it with the families and then that transition for the patient Okay, going them, admitting and all that.

Karissa : 32:51

Exactly, we take care of all of that.

Johnna: 32:54

And that is a huge stress reliever for families, because trying to like take care of someone who's sick plus go look for somewhere else for them to live is huge.

Karissa : 33:04

Yes, definitely, it's so big.

Johnna: 33:08

And you don't think about those things and how helpful it can be when someone just says, hey, have you considered hospice? And that's why I think you are such a valuable resource to even bring in to have that conversation, because as a provider, I didn't know all of this until you and I sat down and had a conversation, and I don't think a lot of providers do so. Speaking of providers, have you ever disagreed with a provider or a family about starting hospice? Certainly you ever have one that like just sticks out to you.

Karissa : 33:39

Certainly so. I had a patient and she was in the ER. She was in the end stages of heart failure and the family called hospice in. I came in to do a consult for her and the ER doctor was so livid that the family wanted hospice and did not want this patient treated and literally stood in the doorway and said you are going to explain to me right now why I'm not treating that patient's heart failure. Wow, and in that I stayed calm. I advocated Because this is not what you want as an ER physician, this is what the family and the patient wants.

Johnna: 34:24

Right.

Karissa : 34:25

And I advocated for the family and I let her know these are the services that we provide in home. She's in stage. They don't want you to put in a pacemaker.

Karissa : 34:37

They want to go home. She wanted to put in a pacemaker, and so what I did was I just advocated for them and also brought in my medical director as well, so I was able to call my medical director, who's on call 24 seven, just like we are, and we had a short meeting right then and there where he was able to, physician to physician, explain things to that ER doctor.

Johnna: 35:03

Yes, I have noticed sometimes, like even working in an ER, even being a nurse practitioner or a nurse not all because I worked with some very great doctors, but then there are a few that are more old school that you notice like it had to be physician to physician.

Karissa : 35:21

Definitely.

Johnna: 35:22

And so it's unfortunate, but that's just what it has to take sometimes.

Karissa : 35:26

Definitely. I just pulled in that resource and advocate it. As nurses, we do have an important title and that is advocating for our patients as well. And so that was the hat that I wore that day. And you know, er physicians are there. They're here to treat right and save your life Right.

Johnna: 35:46

Well, and speaking of that, so that brings me to the conversation you and I first had the very first time. So I made a mistake, guys. Yes, me admitting I made a mistake. So I and you are trained emergency and I think the rest of the world and when I explain and I explained it to you too, but I just want to bring this up. So when I first met Carissa, she had called me in for an emergent hospice patient and my first words out of my mouth was there's no emergent hospice patients. And I got a look of what and I immediately knew I did something wrong. But in my mind what I was thinking because I, you know, sometimes talk before, I think was being in a ER. It's life or death, right, so when I'm being hospiced, that is the goal. So I was thinking what is emergent? But then I had to ask my friend who did palliative care. I said I did something wrong, can you explain to me? And she was like it's the symptom burden. Yeah, that's emergent, not that they're dying.

Karissa : 36:40

Right.

Johnna: 36:41

So can you explain what an emergency is in hospice versus what we all as society think emergency? Like you, better do something now.

Karissa : 36:49

Yes, and just like your friend said, from Palliative it is, it's symptom management. You know that patient was having some increased delirium hallucinations, but that didn't mean that she was going to pass right then and there. So I totally understood your viewpoint. Her symptoms were not managed at all. So that's where we look at those symptoms and that could also put that patient at danger too, because she was having increased hallucinations and delusions. That increases her risk for fall, which increases the risk of her breaking something, and then we just spiral completely out of control. I've had patients where I've come into the home to admit them and they are in severe respiratory distress and we're able to get those medications to them at bedside.

Johnna: 37:36

So they're not suffering.

Karissa : 37:37

Exactly, and they're not suffering or going back to the ER or passing away in the ER.

Johnna: 37:43

Yeah.

Karissa : 37:44

And when they pass away at the hospital, that increases the mortality rate for the hospital as well.

Johnna: 37:50

Yeah.

Karissa : 37:51

And so we are looking at those symptoms. Hopefully we can come in. I would say over the years that I've done hospice eight years I've had about 20 percent of my cases have been emergent like that. Typically it's not Typically we do come in, but when it is that way it's very dangerous.

Johnna: 38:12

I was about to say. Do you see that more, when it's they should have been on hospice sooner, but either provider didn't recognize it, nursing staff didn't recognize it, family wasn't ready, patient wasn't. Do you see the emergent? Yes, like you said. Like when someone like passes away in the transitioning and you know they just got on hospice. Like when someone like passes away in the transitioning and you know they just got on hospice Definitely.

Karissa : 38:31

It is typically when they have not been educated on hospice or we have a family member that was hesitant on putting them on hospice and the patient couldn't advocate for themselves. That is where I see those emergent situations where there was hesitancy about hospice. Maybe hospice did come in and have a conversation with the family and the family said you know, this is great, but we're not ready. And then two weeks later we're getting that emergent call and that the patient had been to the ER three times, or that she fell or shortness of breath, increased pain, they're screaming in pain and so the hospital can no longer do anything for them. That's typically where I'll see those emerge and it's unfortunate and it breaks my heart because every time I'm like if we would have got here sooner, the patient and the family wouldn't have to go through this.

Johnna: 39:25

No, I agree, and you've done so good educating me that I'm trying to do my best to recognize it sooner. I mean, you know it's a team effort because the provider has to recognize this the nursing staff has to recognize it. Family and patient have to be willing. So it is a collaborative effort.

Karissa : 39:42

Definitely, and you've been doing a great job Well. Thank you Awesome.

Johnna: 39:46

Awesome. Oh, as if you pat yourself on the back for that.

Karissa : 39:47

Oh, as if you pat yourself on the back for that. You've done a wonderful job and it does like you said. It's a team effort. Typically, if the providers start that conversation, that opens the door for us and we'll, nine times out of ten, finish it.

Johnna: 40:02

And I encourage everyone to just find a hospice nurse and speak to them. Yes, Because, seriously, without that conversation that day like even though I word vomited and said some things, without that conversation that day I wouldn't have been educated.

Karissa : 40:16

Yes.

Johnna: 40:17

And I'm a huge believer in everything happens for a reason. So, I'm glad that I said what I said in that moment. Yes, because otherwise I wouldn't have known better. Right, yeah, it was just education, that's all, and it happens. I've ran into a few providers that you know it happens. They just being open and willing to listen to someone else's side in general in life is a huge thing.

Karissa : 40:55

Right.

Johnna: 40:55

Just to be able to say, okay, well, I messed up, I shouldn't have said that. Now that you've explained what you've said, have you ever felt guilty or the need to act when you know you shouldn't? As a hospice nurse, no. Okay, so you are through and through. Yes, so you've never been like, oh, I want to save them.

Karissa : 41:16

No.

Johnna: 41:17

Yeah, Because you know what it's a good thing.

Karissa : 41:19

Yeah, I know that, the services that we provide for the patient and typically when we get them and I look at their history, I do an entire evaluation and I look at everything that they've been through over the years. Then it's time and usually at that point death is inevitable anyways. And so it just goes back to now. How are we going to do this?

Johnna: 41:42

Right, I agree. If you could leave a sticky note for every ER doctor or nurse practitioner or primary care provider, what would it say?

Karissa : 41:57

don't be afraid of what you don't know.

Johnna: 42:00

Yeah, I love that and just ask for help.

Karissa : 42:02

Ask for help, use your resources and follow your instincts as well. So you know, with ER doctors or any type of specialty ICU oncology we have those instincts in us. I remember in nursing school when my instructor said you'll have an instinct and act on it. I had no idea what she meant, but over the years I know what she means now.

Johnna: 42:28

Yeah, I was on the triage team in the ER and I had to tune into my gut instinct a lot, because you're just seeing a patient in vital signs and that's it. You don't know their history, you don't know their medication and you have to be able to look at someone and say something's not right here and you have to tap into that quick.

Karissa : 42:47

Yes, yes, if you feel like something's not right, we shouldn't be doing all of this for this patient, maybe if I just bring up hey, you know, do you think we can talk to the family about hospice? That is what I would say is follow that little nudge because you felt it. You know that's your ideal patient, that you're doing compressions on.

Johnna: 43:11

I was about to say we've all done compressions on something and you're like why are we doing this?

Karissa : 43:16

And sometimes it is the family that's pushing for that and so still, having that, bringing that up to the family, can we just bring in someone that can offer you a different viewpoint? Because in that moment they're looking like you are just such a bad guy for not bringing my 95 year old grandma back to life. So after that you can definitely look into. Can I have someone else come in and give you a different perspective, because we talked about personalities too. Right? The ER is hey, I'm here to save you right now. Right, but you might bring in someone from hospice that has a little bit more time and can sit with that family and answer all of their questions through and through.

Johnna: 43:55

No, that is something that is beautiful. Now, speaking of beautiful, what is something beautiful about death that people don't talk about?

Karissa : 44:06

I look at what I do as midwifery for the dying.

Johnna: 44:11

No, that is a good analogy.

Karissa : 44:13

Yeah, yes, and so the same way that we encourage babies to come into this world, right, we're like, come on, it's okay, you can come that is how I look at it where we are assisting the dying and we are letting them know it's okay, you can go, and we're here with your family, they're not alone, you're not alone in this. And so I think that is just such a beautiful thing that we can give to families. It's hard when they are, you know, in a hospital. You have visitation limits, it's cold, it's sterile. We just had a woman that was in her 40s and, unfortunately, pulmonary embolism. She was, at the time, a full code, but the ICU let the family know that they couldn't do much more for her. However, they wouldn't allow her eight-year-old daughter to come say goodbye.

Karissa : 45:12

Because the ICU rules yeah, right and so, but they were able to call hospice and we advocated. We went all the way up to the CEO of the hospital and we advocated. And because she was under our care we do take care of patients in the hospital so because she was in the hospital but under our care, we were able to come in and we brought counselors that specialize in children's grief. They sat with the daughter for a while and talked to her, and we brought counselors that specialize in children's grief. They sat with the daughter for a while and talked to her and then we were able to get her in to see mommy one last time.

Johnna: 45:48

That's an amazing story.

Karissa : 45:49

So it circles back to right. When death is inevitable, it matters when, where and how.

Johnna: 45:54

No, it does Now, if you're OK with it. You know we've talked about some heavy topics with hospice. Yeah, I want to do a little laughing a little bit, try to make it a little bit more humorous and, you know, lighten the mood a little bit. Would you be fine for some rapid fire questions? No thinking, just speaking. Oh my goodness.

Karissa : 46:16

Yes, okay, they're not bad. They're not bad, I'm down, okay.

Johnna: 46:24

What's one medical term you?

Karissa : 46:24

hate hearing in the hospice world, in the world Morphine killed my grandpa. Yes, that was more than one word, but no, that's fine One phrase, yeah.

Johnna: 46:33

Okay, finish this sentence. Death, but make it blank Beautiful. Okay, weirdest place. You it blank Beautiful.

Karissa : 46:42

Okay, weirdest place you've ever cried on the job In my car. It's not really weird, but I've cried in my car. There's not really a lot of weird places to cry.

Johnna: 46:54

I mean, as nurses, I feel like we've all cried in the car.

Karissa : 46:57

Yeah, yep In the closet. Yeah, definitely Yep Having to turn away.

Johnna: 47:04

So you have 30 minutes to yourself. Do you nap? Netflix or wine?

Karissa : 47:11

I nap. I think just sleep is just such a beautiful thing. As a mom and a nurse, I just love sleep. Yeah, I agree.

Johnna: 47:19

Favorite patient nicknames you've ever been called.

Karissa : 47:23

Well, I just love it down here in the South because they just know how to make a gal feel so special. Baby and honey, and oh my goodness. So those are my favorites. It's funny because I have one patient. My name is Carissa, but he just could not get that right, so the entire time I took care of him, he called me Marissa and I just let it go.

Johnna: 47:47

I love that. You know my name's kind of hard too, because people they don't they either call me Johanna, Johanna, Jonah, Joanna, like not, none of it. It's like they put an A in there somewhere and I go with it too. If someone's like, hey, Joanna, like not John, none of it, it's like they put an A in there somewhere and I go with it too. If someone's like, hey, Joanna, come here, I'm like, okay, my uncle, the one that passed I talked about called me, johanna.

Karissa : 48:10

until the day he died, the man was in his upper 70s when he passed away.

Johnna: 48:13

at that point I'm like yep, that's it. Hospice nurses deserve hazard pay for dealing with blank.

Karissa : 48:21

Family fights. There are a lot of family feuds when it comes to end-of-life care. Yeah, a lot.

Karissa : 48:27

Because some want them to go, or some want them on hospice, some don't want them on hospice, or there's just a disagreement on how the patient is being taken care of in the home, you know, with their caregivers, certain black sheep of the family, things of that nature, and that's why we have our medical social workers. Of course, as a nurse, if we're there, we'll help as much as we can, but we would definitely tell our social worker you probably should come and see this family as soon as possible.

Johnna: 48:57

Yeah, yeah, I've seen that too. Mm-hmm, if you had a hospice mascot what you probably should come and see this family as soon as possible. Yeah, yeah, I've seen that too.

Karissa : 49:04

If you, had a hospice mascot, what animal would it be? Mine would be an eagle, because I'm always looking at the bigger picture.

Johnna: 49:10

Oh, I love that, yeah, always.

Karissa : 49:17

What's your comfort food after a rough day? I would say pizza.

Johnna: 49:19

Oh, I love some pizza. Yeah, I love pizza. Do you have a favorite place that you have your pizza at?

Karissa : 49:24

Here or Chicago.

Johnna: 49:26

Well, you know.

Karissa : 49:29

Because it's really hard to find Chicago pizza. Do both.

Johnna: 49:33

I've never been to Chicago. I need to go you should visit.

Karissa : 49:36

It's a beautiful city, very beautiful city. Any pizza in chicago and here I would have to say um, it's a place on 31, oh my gosh, it's leaving me. Starts with a d oh, um domic, I'm donna co's something like I know what you're talking. Yes, yes, they are amazing.

Johnna: 49:55

Love their thin crust amazing, I can't think. I know exactly what you're talking about.

Karissa : 49:58

Yes, yes, they are amazing. Love their thin crust Amazing.

Johnna: 50:01

I can't think I know exactly what you're talking about. I can't think of the. I can see the place, yes.

Karissa : 50:06

Right the red. Yes, yes, they are amazing, love their pizza.

Johnna: 50:10

Did you say Chicago, anywhere, anywhere, mm-hmm Is yeah it really is.

Karissa : 50:16

I mean, it's so good, it's amazing. So I would say, anywhere in Chicago we have a large Italian population there.

Johnna: 50:24

Okay, so is that why it's like? Because I know, I've heard that Chicago pizza is like the number one place to eat pizza. Yes, and so it's, even though I think New York and Chicago are farther it's like neck and neck.

Karissa : 50:34

It is. It's like neck and neck and we make it different, but we have a lot of Italians there, so it's very authentic.

Johnna: 50:44

That's nice. Yeah, kind of like is it? Cause you know we loved when we go to New York, we loved going to little Italy, so is it kind of like that. Oh yeah, cause you know, when you walk up and down the street the pizza is just oh my gosh.

Karissa : 50:50

Yes, yes, so we do. We have a little Italy, we have a what's called Greek town, we have a lot of Greeks that live there.

Johnna: 50:58

Nice, we do it is.

Karissa : 51:06

It is, so it's basically another.

Johnna: 51:07

New York, basically, but without the big rats. Which one are you under stress?

Karissa : 51:14

Let me speak to the manager, or let me go cry in the supply closet. I would probably cry first and gather my thoughts.

Johnna: 51:19

Let's talk to the manager about this, yeah.

Karissa : 51:21

I would cry first and gather my thoughts, and then I would talk to the manager.

Johnna: 51:29

What is your biggest?

Karissa : 51:31

non-clinical talent Gardening. I grow a lot of foods that will come in handy when this barrel crumbles. Right, exactly so. I actually garden quite a bit. I grow tomatoes and cucumbers and corn and potatoes and you know I have chickens Is that when you moved down here, did you do that in Chicago as well?

Johnna: 51:51

I did that up north, I did. Did anybody else do that? Or did people look at you like what are you doing?

Karissa : 51:57

No, they did, Because what I try to explain is that I'm from Chicago, but if you really look at the map the Midwest we are country. I mean, that's all farmland Indiana.

Johnna: 52:08

Yeah.

Karissa : 52:08

You know, Missouri, Illinois, outside of Chicago, it's all country, Like we say, y'all you know because we are. There's a lot of farmland there.

Johnna: 52:20

So typically outside the city it's just country.

Karissa : 52:23

Yes very much so.

Johnna: 52:25

Yes, very much. So. What's your go to line when a family is panicking but you're calm on the outside?

Karissa : 52:33

And typically that's how it goes. I tell them to let's take a moment here. Let's take a moment and I I ask what is making you panic? What are your fears, typically when they tell me that I'm able to put out the fire because you're able to talk them through.

Johnna: 52:50

Yes, I talk them through it, because if you don't know what they're afraid of, you don't know how to help them exactly, exactly.

Karissa : 52:55

So I'll always ask what exactly is making you afraid right now? What's making you anxious?

Johnna: 53:01

You know what that would also work for little kids. Yeah, yeah, I just thought about that. Yes, it would, though it would Because then kids can articulate like what they're trying to, because you know kids have a hard time telling you what they're thinking. Yes, yes. If you could ban one hospital phrase forever, what would it be?

Karissa : 53:23

Hmm.

Johnna: 53:25

That one was a hard one, because I couldn't even think of anything.

Karissa : 53:27

Yeah, one hospital phrase Calling a family or a patient difficult.

Johnna: 53:37

Yeah. I would say that family or a patient difficult, yeah, I would say that, yeah. And then the last one I have is what do you do to take care of you when you have such a hard job that takes a lot of your effort, energy, soul, heart? What do you do to take care of you?

Karissa : 53:54

First, I imagine, when I'm walking to my door, that I'm carrying bags and before I enter my home, my sanctuary, I drop those bags, whatever happened in the field, whatever grief that I'm carrying, I leave them at the door and I created a space for myself that I can meditate, release and I make sure that I take care of myself mentally, because, being a hospice nurse, you do connect with families and patients, and there have been some deaths that have stayed with me or patients and families that I've connected with, and so I experienced my own grief. And I also go to our chaplain. Our chaplain is able to give us bereavement as well in counseling. So I'll reach out to my team.

Johnna: 54:45

That's very nice. Yeah. Do you see yourself doing this for years to come?

Karissa : 54:49

Yes, I do.

Johnna: 54:50

That's amazing to hear, because we need good people. You know that that's their passion and that they care about it. Like you said, if it's no longer your passion, step away from it. But that's really good to hear because I can tell, like even when speaking to you, that that is your passion. Like you can tell that it exudes off of you. So if you didn't know that it does, Well, thank you, I love it so much.

Karissa : 55:12

I have moved around in different positions as well, which makes me well-rounded in hospice. So, because we have 24-hour services, I've done on-call nursing, so I was the one that went out at 3 am. I've done case management the nurses that come weekly. I've done strictly admissions, so I was the first face that they saw and that I fell in love with, because I love hospice so much and I love to comfort those families. In that first moment it was so important. And now in my role as liaison too, so I moved around and I have such a big picture of it and I don't see myself doing anything else. I I just missed hospice so much.

Johnna: 55:52

I miss the patient care and the families.

Karissa : 56:02

Hospice is that one that you can take care of the families as well as the patients, and so I miss that and I came back. I don't see myself doing anything else. I love it so much.

Johnna: 56:13

Do we not touch on anything that you feel we need to touch on? Or do you feel like we covered it all for everyone? Because I want to make sure we try our best to just make this an easier conversation or easier to educate yourself to have a conversation. Do you feel like there's anything that we left out for anyone?

Karissa : 56:30

I just want to say the hospice is a holistic approach to die. It really is, and we don't have to do hardcore drugs if that's not needed or that's not wanted. We follow what the families want. We have had where we've had to arrange marriages oh wow, we've had, you know where the patient was passing, but they wanted to get married, so our team put together a small wedding in their backyard. We've had where, you know, we had a veteran and he only had his dog. We were able to get him home and so that he could pass away and his dog could be there with her by his side. So we follow what the family and the patient wants while guiding them as such a special time really in their life.

Johnna: 57:18

No, I think that's beautiful. So thank you all. If you're still here, I know this is a hard conversation to have. Thank you for sitting with us through this powerful conversation. Death doesn't have to be cold, clinical or feared, and hospice it's not a death sentence. It's a doorway to comfort, dignity and peace when it matters most. A huge thank you to our guest for reminding us that the end of life can be just as sacred and intentional as the beginning. If this episode moved you or made you think differently, share it with someone who needs to hear it. And if you're a provider, let's do better by our patience. Let's have the conversations that matter and let's do them early, before it's too late. Until next time, guys, let's keep staying honest, stay curious and don't be afraid to talk about the things that we were taught to whisper about. Bye you.