Billboard:
Lis Jones: Knowing what's coming next, takes a little bit of the fear out of it.
( soft piano music begins)
Ariel Lavery: Hospice, or end of life care, is a concept that has been with humanity for centuries. But for the US, the inclusion of hospice as necessary medical care for terminal patients has only recently become accepted practice.
(background voices fade in briefly)
Ariel Lavery: And although it comes with its own controversies, just like many aspects of medical care, I wanted to learn what hospice is for the people who provide it.
(theme music starts)
Lis Jones: Our goal is no regrets
(theme music swell)
Ariel Lavery: We’ve been hearing from women near and far this season on how living in rural America affects their health. For this last episode of the season, we’ll focus on the women working in a healthcare industry that might be a little misunderstood. Who Will Be With Me at the End? Today, on Middle of Everywhere, telling big stories from the small places we call home.
(theme music ends)
Scene 1: Why? What is Hospice?
(audio from hospice house fades in)
Sherri Boyd: This is one of my favorite areas of the whole building, is this patio.
Ariel Lavery: This is nice!
Ariel Lavery: Rural areas of the US have a higher need for hospice care than urban areas, simply because the population of rural residents over 65 is larger here. But, just like every other medical practice, the providers are also more limited.
Sherri Boyd: So we have no visiting hours, you come and go anytime you want to.
Ariel Lavery: In Murray, we are lucky to have a local hospice house that is funded by our county hospital.
Sherri Boyd: I am Sherry Boyd and I am the director of hospice services for Murray Hospital.
Ariel Lavery: With the residential AnnaMae Owen Hospice House in Murray, patients in our county can receive hospice care either at home, or in the hospice house, depending on their needs and desires.
Sherri Boyd: We are helping them complete this journey that we've all been on.
Ariel Lavery: Just like every other nursing profession, hospice nurses are overwhelmingly majority women, and Murray’s hospice program currently doesn’t have any male nurses on staff. This kind of work is a bit different than other nursing positions.
Sherri Boyd: I try to work to help them see that they have to have a different mindset for hospice nursing. They have to help the patients be able to weigh the benefit versus the burden of certain types of medical care. And if it's not going to benefit them that much, then why go through the burden of it.
(music swells and ends)
Scene 2: Why this work?
Ariel Lavery: What is the training like?
Sherry Boyd: Right off the bat they get a full day to a day-and-a-half with me, one on one. I go through the history of hospice with them, the philosophy of hospice. I don’t worry so much about nursing clinical skills as I do the attitude, the way they approach the patients and the families, the compassion that they have. With hospice we are not looking to cure anything. We’re not looking to fix anything.
(short pause)
Sherri Boyd: For the nurses that see patients in their homes, typically they start at the office, they'll try to plan a path.
(upbeat marimba music begins)
Lis Jones: I admit that I am anxious before I do admissions or something where I'm anxious if we have a patient who I haven't met yet, and they have a lot of issues going on, or there's family issues going on.
Ariel Lavery: I sat down with several hospice nurses that work for Murray-Calloway County Hospital at their homes.
Lisa Jones: My name is Lisa Jones. I go by Lis. And I am a PRN hospice nurse. I work as needed. I've always been interested in death and even as a child, I was very interested in death and not necessarily afraid of it. My parent’s church was all white hair, was all elderly. So we would go, probably, to a funeral a week. And, because my mother wanted felt that her way of of serving God was to visit their friends in nursing homes and take care of them. So my mom would drag me as a little kid, because there's nothing nursing homes love more than children. Right? (Ariel laughing) Oh, my gosh, (crosstalk) is everyone wants to touch you, hug you. And so my mother would drag me along.
Pam Paschall: My name is Pam Pascall. And I work PRN, which means as needed. So I'm retired. My dad was a fireman. So I'll think I always looked up to him as being someone that helps someone. But I knew when I was in high school, I wanted to be a nurse. I actually, years ago, worked in home health. And then the school nurse at Murray had never had a school nurse. And so I took that job. And they'll laugh at me because one little patient she was, you know, little confused or whatever. And, and I'd say, now look at me. And that's probably that country. (Ariel laughs) I'd say now look at me. And then I think oh, wait, these you know, I'm not in the school anymore. And she would start laughing every time I say that, but she'd look at me. (Ariel laughing) And then I'd get my I'd say now I'm gonna teach you this. So now look at me.
Kaycee Cooper Byrd: Well, there was an army of nurses that I felt like saved my life that day. Let’s see that was August 29th 2015 when my daughter was born. I left the hospital into September.
Ariel Lavery: You decide almost immediately that you want to pursue nursing?
Kaycee Cooper Byrd: Yeah, I think I knew before I left the hospital. I’m Kaycee Cooper Byrd. I am a registered nurse with the Anna Mae Owen Residential Hospice House in Murray. I was at the time working for a food distribution company still in restaurants. I mean, that's still what I was doing. And just was like, Yeah, I'm sorry, I'm quitting my job. I'm going to nursing school now. People always say you di… that’s two different worlds–restaurant business and nursing. But what I have said for a long time, it's all customer service. You know, I worked in intensive care through COVID.
(marimba music turns minor)
Kaycee Cooper Byrd: And then taking this job with hospice, my mom and my husband both were like, are you sure that this is what you want to do? You know, you've had a lot of loss in the last few years, and it's really affected you, are you sure you want to go somewhere that that's all you're going to do is lose people?! Working in the intensive care unit, and seeing what we put people through, you know, the body, the medicines, and you know, take a drug to take a drug. It changed my own health care directive.
Lisa Jones: I think the majority of the nurses that I've known have been ICU nurses who were all done with it because so many times they've had to have these conversations, right? And unnecessary treatments and trying to, you know, advocate for the patient. Let her go. Let her go.
(music swells and fades)
Scene 3: Dealing with Death
Ariel Lavery: Obviously, every hospice nurse must learn how to face death. As Sherri discussed, it is a skill that can be learned. But one unexpectedly common experience was people’s surprise at these nurses’ choice to do this work. Just like Kaycee mentioned, they all had people in their lives who didn’t believe this could be a positive, even enlightening, work experience, including other nurses.
Lis Jones: Nurses say, Oh, I couldn't do that job, I, I’d I'd be crying all the time, right? And I get choked up just thinking about it. Like, I show people my emotions.
Pam Paschall: People come up to me now and they'll say, Now, what are you doing? And I'll say, Well, I'm working at the hospice house, and their whole body, their whole demeanor, their face, it's, O!, It’s that, oh, you know, I don't know how you do that. And I say, Well, it's not, it's not about just about death.
Ariel Lavery: Educating the family about the dying process, becomes a priority for hospice nurses.
Lis Jones: Knowing what's coming next, takes a little bit of the fear out of it,
(wondering piano and guitar music starts)
Lis Jones: I find because I really like anatomy and physiology, understanding why the body is doing this really helps people deal with it, when it when it finally comes.
Kaycee Cooper Byrd: I have been amazed at how much I've learned, you know, in this setting, about the human body, it's it's amazing what it can still do, to the very end. The design the mechanisms that happen. Terminal congestion, for example. The body begins to hold fluid. So there becomes a lot of fluid in the lungs. The body will run a temperature. Well, in that situation, the body starts a small temp because it's trying to evaporate that fluid away, right, which helps with comfort and breathing.
Pam Paschell: I've seen more of the process of death. I'll tell them now, their breathing pattern is going to change. You may look over and there's a period of time where there's 30 seconds, and they're not breathing, and then they start breathing again. So that's normal, that, you know, that's part of it. There may be gasps.
Lis Jones: For instance the death rattle. If somebody is completely lax, unresponsive, usually on their back, mouth open, whether they're tilted up a little bit or not, because they're not swallowing, the little bit of saliva pools in the bottom of the throat. And so when they breathe in and out, it makes a rattling sound. And it's far more upsetting to the family. For patients that have come back out of that and become more responsive. They didn't seem to care. It’s just a little tickly rattle. So if you can lay a person on their side for a while that will work its way down, and then they're not breathing through it. But it's really upsetting to listen to somebody that you love breathing through bubbles. There are some meds for it. They just dry up the mouth.
(Wondering piano and guitar ends and concerned steel guitar comes in)
Kaycee Cooper Byrd: With any medication there’s a little bit of side effect to that too. So like, if we put the scopolamine patch on ‘em, it might make them sound a little better, but it's gonna make them have really bad cotton mouth. Do, is that more comfortable for them? Probably not. So, a lot of times, it's it's telling the family and making them understand, I promise you. They're not hurting or feeling this discomfort from that sound. It's bothering you. We can watch for signs and symptoms of things that tell us they're in distress, or we can see that they're not in any distress. I feel like there is a point in the last typically 24 to 48 hours of a patient's life, where what becomes uncomfortable is no longer them. It's the ones that are with them that become uncomfortable.
Pam Paschell: And then we see those levels of, they’re eating. They're not eating. Their breathing was normal. Now it has a different pattern. They have a fever, that's part of it, the body's dehydrating, that's part of the dying process.
Ariel Lavery: While hospice nurses work to normalize each stage of change in dying patient’s bodies, some of the hardest parts of their jobs don’t necessarily have anything to do with their clinical nursing skills.
(tense marimba fades in)
Ariel Lavery: It has everything to do with their compassion for the patient.
Kaycee Cooper Byrd: They just want it to stop.
Ariel Lavery: That’s when we come back.
(tense marimba fades out)
Scene 4: When it’s Hardest
Kaycee Cooper Byrd: …and they've just made a choice that they're done, again, like I said, getting poked and prodded and this test and that test and this medicine and that medicine, they just they just want it to stop.
(concerned steel guitar comes in)
Ariel Lavery: The hardest part of the job, for the nurses I spoke with, is mediating loved ones.
Kaycee Cooper Byrd: they can come in and they want us to do A, B and C to fix x y, and z. Well, we're not doing that. You know, we're not going to send them to the hospital to get a chest X ray, we're not going to probably start antibiotics because they don't want that anymore. There are medications we give, you know, specifically, let's just say morphine, Lorazepam. Which, you know, a lot of people have preconceived, you know, ideals of what that means, based on, you know, what we've heard in the last even twenty years about morphine because there's a drug pandemic. They come in and think we're giving them drugs that are killing them.
(concerned steel guitar crescendos and fades out)
Pam Paschell: It’s okay, if they don't want to eat, it's okay. You know, and that's a big area, we say, you know, in our society, what do we do when somebody's sick? Let's feed them, let's give them food. And they just, well, Mama's not eating or daddy's not eating? And it's okay.
Kaycee Cooper Byrd: Everybody wants to like force feed these people to just eat. I mean, think about, you know, if you were just laying in bed 24 hours a day, and people are just forcing you to eat all this food, you're gonna feel terrible.
Ariel Lavery: Do you ever feel like you kind of have to protect the patient in some ways from those from families’ actions?
Kaycee Cooper Byrd: Absolutely!
(concerned steel guitar and bass fades in)
Lis Jones: The family, oh my gosh, some of the families that just there's, you know, ah! People showing up thinking that somebody's dying, so they want to scope the house, you know, relatives, arguing over who's watch this is or that kind of stuff is the downer. I have to say the only times where I've really felt I had to win somebody over is when the first thing the family says is, well, our cousin is a doctor and he says, blah, blah, blah. And I say, Well, where does he live? And they say, you know, Florida? And I say, well, has he seen the scans? No. But he knows. It's like, well, (uncomfortable laugh) oh my gosh, this is so frustrating.
Pam Paschell: You know, I've seen some with what we call the terminal delirium. And that's hard. Because they have no idea what they're doing.
Lis Jones: I had a patient with what's called terminal delirium. And so he was throwing punches, didn't recognize his family, trying to get up. Could not stand. Hadn't been able to stand in a long time but didn't realize it, right. And it's almost like there's a really deep primal moment of clarity that some people have even in the middle of terrible confusion. And they, they feel like if I can't get out of this bed, I'm going to die. I've got to get up, I've got to get up, I gotta, and they make up stuff make up stuff, I gotta go the store, I got to pick up, you know, Johnny, who's, you know, moved to Idaho, 10 years ago.
Ariel Lavery: So this moment that you're describing, this is a moment that happens right before death.
Lis Jones: It doesn't happen to many people, it's just when it happens. There's, there's not a lot of recourse. Someone who's in that much fear is not, it's not a good place to be.
Pam Paschall: And then the families will say you, they would feel terrible to know they're doing this. We don't judge them. We know this is not them.
Ariel Lavery: Despite the amount of conflict a hospice nurse may encounter from family members…
Kaycee Cooper Byrd: The hardest thing is when you have patients that don't have loved ones to be with them. There's a there's a deep sadness in that to me, you know. that someone cannot have someone at the bedside to hold their hand when the time comes.
(concerned steel guitar and bass ends)
Ariel Lavery: One of the hardest jobs I heard about was one I hadn’t even considered before talking with these women.
Lis Jones: The only thing I said is that I didn't want to ever care for children at end of life because I didn't think that I could keep my emotions in check. When we've had children, Tonia has taken care of them.
Tonia Kelly: Tonia Kelly and I’m a registered nurse. I been here 20 years in August.
Ariel Lavery: First of all, just curious how you became the nurse that handles children's hospice?
Tonia Kelly: Because nobody else wanted to. (chuckle)
Ariel Lavery: Okay.
Tonia Kelly: And still most of them don't want to. They don't want to.
Ariel Lavery: And what made you willing?
Tonia Kelly: Don't know, I love kids. My first huge experience with kids in nursing–I was still in nursing school–I had just found out I was pregnant with my second child. And the kid that I had at St. Jude's was the same age as my eldest, which was four at that point. But when nobody else wanted to do it, I just continued… it was just… They need it just as much as adults.
(ethereal synth and piano music starts)
Ariel Lavery: Do you remember roughly like how many children you’ve…
Tonia Kelly: Probably about eight in 20 years. So we don't get them real often. But when we do get them, it's heartbreaking. But when you've got a little one that hasn't had chance to live that life yet, it's a little harder to have those conversations.
Ariel Lavery: You ever find yourself when you're in the midst of the family? Having to hold back emotion?
Tonia Kelly: Oh, absolutely. And I don't always. I mean, it's emotional that you're human. Honestly, I don't really know that the families even noticed that at that point, they are so emotionally tied up themselves into what's going on. I had one mother, that when the patient passed, she wanted me to take that baby, in a moses basket to the funeral home myself. That was hard. You know, we get so attached, There's always those memories there. There's always, you know, one little fella. (chuckles) He hated my cold hands. So I went out and bought special gloves to wear what I saw him, soft, furry gloves so that my cold hands didn't, you know, bother him and I would go in and he would pretend to cut my leg off or cut my arm off. And you know, he was a typical little boy, you know? So there's always those memories that you're going to have that you… they're not going to leave. Probably 10 years ago, the insurance is changed. So they could be, pediatric patients can be on hospice, but still getting curative measures. That's not the case at all with adults. But pediatrics, they decided that patients or families could have that hospice support, and still be seeking curative measures. So that kind of makes it sometimes a little bit more difficult in treating the patient. Because there's a lot of things, you know that we have a goal of one thing, but then all of a sudden, the doctor calls and says, Oh, no, we're going to do this. And then I may change some of those medications that we've done or whatever, because it doesn't go with what their goal is. And to me… to me, it almost gives those parents false hope as well. The end result is probably going to be the same. A lot of times, we run into family members who don't want to tell their loved ones what's really wrong with them. So then you're kind of having to tiptoe around and patients asking what's wrong with me? Why aren't I getting better? Why? I think the patient has the right, especially if they're in their right mind. They have the right to know what's going on and why they're not getting better and where we're headed with this.
Ariel Lavery: Regardless of their age?
Tonia Kelly: Yeah, realistically, I mean, obviously, with kids, you have to explain it to them in a different way. But yeah, I mean, I, I do.
(ethereal synth and piano music swells and fades)
Scene 5: The Best Rewards
Lis Jones: When a patient, in their right mind, understands that they're terminal. They become so honest.
Ariel Lavery: Despite a process that seems destined to place endless obstacles in front of hospice nurses, I never heard ANY despair in any of the women’s voices. In fact, it was quite the opposite. There were intense emotions, of course, but there was also a lot of hope resonating in their words.
Lis Jones: When they look at you and say, Am I really dying? And you'd say well, you know what, we do graduate people from hospice. When we get patients who say they've, they've been a bunch of doctors, they've had meds that were never discontinued. So now they're on 28 meds, right? They've, they've had everything wrong with them. And so this happens when they get home, finally. We meet with them. We get rid of all the extraneous meds, right, and now they're at a place that's quiet where they have food that they like, where they're with their dog in their favorite, you know, comfy recliner. And we'll see people bounce back up a bit. And if you don't need the meds that you've been taking for however many years for something that happened once, if you don’t really need these meds, you find that the appetite comes back. A lot of people feel better. They're glad they're doing better. Right? Graduating from hospice is great!
Ariel Lavery: Right, right, right. Best graduation you could ever have.
Lis Jones: That's right! I'll see you guys later! And I like to say we'll see you down the road.
Ariel Lavery: Yeah, OK.
Ariel Lavery: Kaycee told me about a man who, when this episode publishes, will have been in hospice for nearly 5 months.
Kaycee Cooper Byrd: He's our diabetic who eats three milkshakes a day.
(sweet ukulele music comes in)
Kaycee Cooper Byrd: When they came into the hospice house that day, they expected days, weeks.
Ariel Lavery: Wow
Kaycee Cooper Byrd: He has had to have part of his foot removed, because that's typical with diabetes, right? He's got osteomyelitis in the foot. He had an amputation. So he's in the hospital, getting all these, you know, his battery of tests and medications and all the stuff. And they told him, they were gonna have to remove more of his leg to fight this infection. And he said, I don't want it. I'm done. I don't want to be cut on. I don't want to take your medicine. I'm just, I'm just done. And they had a hard time accepting that, because he's a very vibrant man. And he's 100% here. He even asked us recently, you know, he said, Is it getting better? And you just, you know, no, it's not gonna get better, bud. His daughter, she and I have talked about it. I just try to make sure she still understands that, you know, he does have diabetes. So us not controlling his blood sugar right now, is feeding that infection. I mean, you have to be very honest, because she said recently, he even said, I thought this was the place where you came to die. Why, why I'm not not dead yet?! (laughing)
(sweet ukulele music fades out)
(sounds of hospice house fading in)
Sherri Boyd: He’ll wave at ya. If I come in here, talk to the nurses, I’m standing here. He’s sitting there waving.
Ariel Lavery: Yeah. He’s apparently had a great time here.
Sherri Boyd: Yeah he loves it here.
(hospice house fades out)
Ariel Lavery: What have you learned about death since doing this work?
Pam Paschall: Um (chuckles) I don’t know about your podcast, like, religion and stuff. That part of it, and I can get emotional. (voice cracking) It's just seeing that, you know, it's time. You know, it's their time. And they've gone through that process. It's hard. (voice cracking) Sorry. Woo! (takes deep breaths) (whispering) Give me a second.
(female choral music fades in)
Lis Jones: It’s wonderful. And we all feel that way. We'll come in from the office and say, Oh, my gosh, I just had, you know, so and so is actively dying, and all kinds of wonderful things have happened. We were we were bathing somebody and it was springtime and the door was open. And the person's on a on a big hospital bed in the middle of a living room. And a dove flew in and landed on the foot of that hospital bed.
(chorus music swells)
Lis Jones: And we were stunned! We were stunned!
(choral music swells)
Lis Jones: And the bird just kind of looked around. And after a while we were like, Okay, we got to work here. Shooed the bird out. And the family said, when they all left to go to the to the funeral home for the funeral. A dove was on the peak of their roof watching, like watching them get in their cars, and they were getting in their cars and went oh my god, that dove is still there. The number of people on their deathbed that will reach up and or reach for things or see people or there's always children, women always like what are those kids doing in here? And all the you know, the hospice people look at each other like, Okay, we're getting close, the same things just seem to happen, no matter what their religion, or their race or their socio economic level. They just kind of, things happen. They see their loved ones. And oftentimes their loved ones are saying, I'll come back for you.
Tonia Kelly: This is where God wants me I wouldn't be able to do what I'm doing.
Sherri Boyd: Apparently, is something God wanted me to do. My faith has increased so much since I became a hospice nurse. There is such a huge part of the spiritual aspect of hospice nursing.
(female choral music fades ends)
Sherri Boyd: And Medicare will tell you the reason they require a chaplain to be part of a hospice team and part of a patient's plan of care is that if a patient has a spiritual issue that is unresolved, it can cause a patient to have completely uncontrollable physical pain, it can cause them to linger for days and weeks longer.
Scene 6: Death Doesn’t Just Happen to One Person
(wondering piano and guitar music starts)
Lis Jones: When they talk about like cardiac muscle, right, your heart grows stronger by exercise. And I feel like my heart emotionally grows stronger by the emotional exercise of loving people and losing them.
Kaycee Cooper Byrd: It's not an abnormal for us to come on our day off and see somebody because it matters to us to see them before they're gone. This gentleman that recently passed that I was really close to, you know, everybody up there knew if something happens, I want you to contact me. I did get to see him before he was not responsive to just get to say I love you buddy. I'm appreciate you you know, the joy you brought to my life.
Lis Jones: You know, we consider we consider the family, our patient as well. And I'll tell people when I'm at a death, I'll tell them we have grief recovery, counseling. There, we'll talk about bereavement. And I'll say just so you know, technically, your family now becomes our patient. we're just kind of changing who the the patient is, but really, the patient's been the family the whole time, because I, we cannot get the care for a home patient to happen, unless that family is on board.
(wondering piano and guitar music fades out)
Conclusion:
Lis Jones: We I'd say we all find it really an honor to be there.
(sweet ukulele music starts)
Ariel Lavery: In the moment a death happens emotions can feel perplexing. There is loss, but it’s maybe not all sad, not all grief for those also on this journey.
Lis Jones: And it's usually a great relief. I'll tell families, especially if they've struggled through a disease. You know, I know you guys really worked to get through to this point. And I want you to know it's okay to be relieved. It's okay, that’s a normal thing to feel. You made it to the finish line for them. You help them all the way and it's okay to be relieved.
Credits:
Ariel Lavery: This episode was produced by me, Ariel Lavery. Our editor is Josh Adair, who has helped me wrestle with and shape this episode when I found myself in over my head. You can find images of Holly on our website at middleofeverywherepod.org or on Instagram and Facebook at middle of everywhere pod and Twitter at rural underscore stories. Our theme music was composed and produced by Time on The String Sound Studio in Paducah Kentucky. Other scoring comes from APM music. This is a production of WKMS and PRX. This program was made possible, in part, by the Corporation for Public Broadcasting,a private organization funded by the American people.
(music ends)