Conversations on End-of-Life Care with Hospice Nurse Penny

Conversations on End-of-Life Care with Hospice Nurse Penny

In this episode of Peaceful Life Radio, host David Lowry and co-host Don Drew welcome special guest Penny Hawkins Smith, widely known on social media as Hospice Nurse Penny. Penny shares her journey into the world of hospice care, starting from her diverse career background and personal battles to becoming a beacon of support for those facing the end of life. They discuss her book 'Influencing Death, Reframing Dying for Better Living,' the intricacies of hospice care, and the misconceptions surrounding it. Penny provides valuable insights into the importance of having conversations about death, the difference between hospice and palliative care, and the critical role hospice plays in ensuring a dignified and supportive end-of-life experience. Tune in to learn more about navigating the difficult yet inevitable process of dying and how hospice care can make a difference.

00:00 Introduction and Special Guest Announcement
00:40 Penny Hawkins Smith: Journey to Hospice Nursing
04:31 Understanding Hospice Care
06:31 The Importance and Misconceptions of Hospice
08:49 Personal Stories and Experiences with Hospice
18:28 Facing Death with Resilience and Courage
25:54 Palliative Care vs. Hospice
26:50 Penny's Social Media and Resources
27:46 Conclusion and Final Thoughts

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Transcript

David Lowry: 0:29

Hello everyone and welcome to the second half of life you're listening to Peaceful Life Radio I'm David Lowry and with me today is my good buddy Don Drew.

Don Drew: 0:38

Hello, everyone. Good to be here.

David Lowry: 0:40

Don we have a person I bet you've heard of on social media.

Don Drew: 0:44

I hear we have a very special guest. Why don't you go ahead and introduce her?

David Lowry: 0:47

Those of you who pay attention to social media have no doubt at one time or another seen Penny Hawkins Smith, known as Hospice Nurse Penny. And the font of all knowledge was TikTok for me when I first ran across your videos, but I also find them on YouTube, instagram, all the social media outlets. Nurse Penny, welcome to the program.

Penny Smith: 1:08

All right. Thanks. Thanks for having me on.

David Lowry: 1:10

We're glad you're here and we want to talk about the book you wrote and hear your story about how you came into this world of hospice work. I've got the book in front of me called Influencing Death, Reframing Dying for Better Living. Penny, tell me why you wrote the book and what led you into hospice?

Penny Smith: 1:29

Well, that's a long story. So, I wrote the book because I started writing stories about hospice patients and I started in hospice 20 years ago, I started writing stories. I found that my experiences were amazing and I wanted to document them and I've always loved writing things down. And I started writing the stories shortly before I learned of TikTok before the pandemic, probably about 2018 actually. I found a website that Amazon had published where you could go in and write a screenplay and it had the formatting and everything in there and I was really disappointed with the way that death and dying and hospice were portrayed on television in the movies and I thought, we need a television show that's realistic about death and dying. So, I started putting my stories in there and kind of developing what I hope would be selected by Amazon to be a screenplay. But after about a year or so of putting things in there, Amazon. got rid of the website and didn't do that anymore. So, I shelved it for a while. Then I got on TikTok and started hearing people telling me that I should write a book. And once I had, significant amount of followers, I thought, Hmm, maybe I really should write a book. And that is how my book came to be. It is a memoir. It's not just a, how to be a hospice patient or what it's like to be a hospice patient. It's about my life growing up, what led me to be a hospice nurse and my experiences working in hospice and with the dying that really changed my life. And that's a good segue into the next part of your question, which is what led me to be a hospice nurse. So, I didn't go to nursing school until I was 40. I was getting divorced from my second husband and I needed a career. I had been a stay at home homeschooling mom for 10 years. And prior to that marriage, I had been a bartender and cashier, store stocker and stuff like that. I didn't really have a career. So, I wanted to do nursing. In my earlier life, in my twenties, had a real rocky pathway. I was a drug addict. I went to jail. I gave my son to his dad to raise because I wanted to party. So, as I was choosing the area of nursing that I wanted to go into, in the back of my mind, kept thinking, I really want to do something that I would consider service work. All nursing is service work. All nursing is meaningful and important. But I felt like I needed to do something above and beyond to make up for the transgressions of my youth. There's lots of layers to this. You guys are going to get the whole deal here. So, I had also had experience with hospice because my soon to be ex husband at the time, his stepmother had died a year before on hospice. And I recognized that what those nurses were doing really was service work. It was just sacred. And I just thought how that's something I would really be interested in pursuing because that just seems to fit what I'm trying to achieve. I also had severe death anxiety. So, I had a bit of a morbid curiosity and thought, you know what, maybe if I do this work, it will help me not be so afraid of death and dying. And that did turn out to be the case, by the way. So, that's really what led me to being a hospice nurse.

Don Drew: 5:01

So, Penny, what is exactly hospice?

Penny Smith: 5:05

Hospice is end of life care. The hospice is for people who have a terminal condition with a life expectancy of six months or less. Now people can live longer than that or shorter than that. That's why the or less. And we don't kick people off when they hit six months, if they're still alive, we have a recertification process. And as long as they still meet that requirement of six months or less life expectancy, then we can keep them on. Sometimes people stay on for a year, two years, even three years. It is really focused on caring for people at the end of life. We provide a lot of education to the caregivers. So, we don't do 24 seven care. We do in some circumstances where there's acute symptom management need. But for the most part, people die in their own home or wherever they call home with family or hired caregivers. And we do a lot of education with them. The person is choosing to no longer receive treatment for their illness. So, if they have cancer and they've been doing chemo, they have to stop the chemo. It's really end of life focused. There's a whole team. We take care of people through an interdisciplinary team. It's very unique from other health care providers. We have a doctor, we have social workers, nurses, chaplains hospice aides. We have a lot of volunteers. It's very, very person centric. It's very whole person care. It's not just we're going to treat your disease. We are treating you as a person who has this disease that's going to end your life. So, it's really, focused around meeting the person's end of life goals, making sure that they're comfortable. Making sure that their family is okay with caring for them. And then once the person dies, we actually provide grief support services for the family. So, our care extends through the person into their family as well.

David Lowry: 6:58

So many people are fearful of the hospice process. Can you talk to us about this fear of hospice by telling us why hospice is so necessary in this day and time?

Penny Smith: 7:07

Well, I'll talk about why it's so necessary first. So, it's so necessary because allowing people to acknowledge the end of their life is the best way for them to have a good death experience. When people are not accepting of the fact that they're dying, and that happens a lot if hospice is not involved, they keep going to the ER, they keep going to the hospital and then they end up ultimately dying in the hospital. And it's just not the best death experience to die in the hospital. Being at home with your loved ones present is just all the way around going to be a better experience for that person. Hospice does also keep people out of the ER and it keeps them out of the hospital because now we are going to the home and we are helping provide that care at home so that they don't have to call 911 and get an ambulance when they're dying and waste that time. People who have a limited life expectancy want to use their time for the things that they enjoy doing. They want to be with their family and friends. They want to check off that bucket list. They don't want to end up in the hospital, in a clinic waiting room. I don't even like sitting in a clinic waiting room and I'm healthy. It's just, it feels like a waste of time. Right. And so it helps to facilitate them using their time more wisely. So, that's why it's so important. Also when you're talking about why people are afraid of hospice. It's almost like a vicious cycle. People are afraid of hospice, so they don't enroll until the very last minute, and then they die soon after that. And so people equate going on hospice with immediate death. Or they misunderstand hospice, and they think that you have to be really close to death to go on hospice, and you don't. So, they associate hospice with immediate death. If I go on hospice, it means I'm going to die faster. This is one of the things we hear the most often. Like, I'm not ready to go on hospice, I'm not ready to die yet. You're going to die with or without hospice. And in fact, studies have shown you have a better chance of living longer if you go on hospice. There are two studies that were done that prove that if you go on hospice, you have a better chance of living longer.

Don Drew: 9:19

Penny, my first wife, Marsha, passed away after being in hospice for about two months. And during that time, we had what I would describe as a really great experience with the nurses. But there's more to hospice. We had a woman that came in once a week that washed hair. That was part of hospice care. I remember a chaplain called just to check on us and so forth. That's all part of hospice as well. Is it not?

Penny Smith: 9:42

Yeah, absolutely. Yes. The hospice aid can come once a week, twice a week. Sometimes we send them every day. The social worker who provides grief counseling. They help with figuring out funeral home arrangements, financial paperwork. If somebody is, trying to figure out how to do their advanced directives. Social work helps with that. The chaplain or the spiritual care advisor or spiritual care counselor provides spiritual care to meet people where they're at with their religious needs or their spiritual needs. And then volunteers. So, we have to have volunteers with our program. It's a requirement from medicare that we use volunteers. Oftentimes if somebody doesn't have a whole lot of family or friends coming around. Maybe they're by themselves or they just want some company. We can have volunteers that go and put puzzles together with them, take them to do errands, help clean up around the house. We had volunteers that helped patients who were moving from one place to another, box up all their belongings. Volunteers can do a number of things for patients. So, yeah, there's so many things that we do for people.

David Lowry: 10:55

So, my knowledge of hospice didn't start until several family members found themselves at the end of life. And at that point they were so far along in the process that the hospital called comfort care. But it was really their own version of hospice. And I feel like it would have been so helpful if I had known about this earlier and could have given much more compassionate care. It was like you mentioned. You would be sick. You would go to the hospital. Maybe you'd get a lot of transfusions. You'd be good for, I don't know, four weeks or so. And then you'd be hurting again. And then you might go back. In the case of our stepdaughter, the last year was really horrendous. The doctors wouldn't give up. They would just keep doing one thing for her cancer and another. And she was in such discomfort and I remember feeling so frustrated in talking to the doctor on duty at the final hospital she was in. I said, she has stage four cancer. It's not going to get better. We've been here so many times. Isn't there something we can do to make her comfortable and peaceful and let her have some dignity here? And he says, Oh, are you saying we should just stop? And I said, Well, I don't think she's going to get any better. It was a hopeless situation. So, I'm going to leave the story there for just a moment. Penny, what could we have been doing instead of this going back and forth?

Penny Smith: 12:16

Yeah, what she could have been doing is being at home and having her symptoms managed for the optimal. Comfort at the end of life and having her family with her and having open visiting hours, people could come and go as they please. She could have been enjoying the last bites of food that she wanted to have instead of hospital food. She could have been not being woken up in the middle of the night to get her vital signs taken. I mean, so, so many things. And I want to touch on comfort care versus hospice. So, comfort care is what the hospital does. I like that. It's not the same it's basically They are providing comfort they're going to usually stop the vital signs or maybe not do them as frequently, and they're going to be more liberal with the medications, so that they can be comfortable that's comfort care. Hospice is a whole program, like it's, that's where you get your social worker, your spiritual care counselor, your grief support after the death of the person, the nurse who's visiting, you get so much more, it's an actual program, it's an insurance. Benefit is what it is, a hospice benefit, and so that's really two different things. Comfort care is usually something that's done, like, that's your last ditch effort, you're in the hospital, and now, like you said, can we stop this? And I have to say, that is so distressing to me, because I know that happens all the time. And this is why we have people who are referred to hospice so late, is because our doctors are so reticent to accept the fact that the person is not going to get better from the treatment they've been giving to them for however long. And in their defense, they don't learn about that in, in medical school. They learn to do everything. They learn to try to save people's life or to prevent illness. They don't learn about How to take care of somebody who's dying and it's really sad because everybody's going to die someday But every oncologist who's treating a cancer patient should always be saying this is not your only option Right and they tend to do that. They said this is all we can do This is all we can do and it's not there's always another option and that is to not do that treatment and I've had many patients who regretted doing that treatment because it did not only it impacted their life so negatively because they were having to spend so much time in the hospital. A lot of times those treatments make them ill or cause them worse harm in the end than the cancer did. I know somebody personally who had colon cancer and one day she told me I'm not going to die from the colon cancer anymore, I'm going to die from heart failure because the chemotherapy ruined her heart. So, it's sad to me that you actually, as the non medical professional, had to go to the medical professional and say, Isn't there something else we can do? And their response was, well, I guess, do you want us to stop? Like, yeah! Yes! And then again, that was the option he gave you was, well, do you want us to stop? He didn't say, do you, would you like to stop? We could do hospice instead. Like. That was it. Do you want us to stop? And somebody else might have said, well, I don't know. What does that mean? If you stop, then what happened? You know what I mean?

David Lowry: 15:34

Yes, exactly. Wow.

Penny Smith: 15:37

So, if they're in the hospital, you can certainly talk to the hospitalist about it, the doctor who's caring for, but if you're not getting a good response, or if you're getting somebody who's saying, well, I think we should keep doing this, you can self-refer to hospice. Anybody can self refer to hospice. You can call hospice. You can choose your own hospice. You do not have to go to the one that a doctor refers you to. You get to choose. My dad was in the hospital with a terminal condition and I was a hospice nurse for five years. And I kept going to the hospitalist and saying I'm a hospice nurse and I need you to level with me because things don't look great right now. Now this was before palliative care came along. So, now we have palliative care and we can talk about that too. But this was before palliative care. And they kept, Oh no, it's fine. We think it's, we think we know what's going on. We're going to, we're going to treat with this. It's going to be fine. Then he was just not doing well, and I went to them again, and I said, he's just not doing well. No, we thought it was this, but it's actually this, and we're going to treat this instead. And what it was, was pneumocystis carinii, which is a fungal infection in the lungs, and my dad had a lung disease, that was his terminal condition. So, I did some research on it, and I'm like, oh, okay, well, people who have a compromised immune system, which he did because they had convinced him to do chemo earlier on They had like a 50 chance of recovery from this. So, this is not looking good at all and my dad is not looking good at all And so again, I go to them like should we be thinking hospice? No, no, it's fine. It's fine. We got the right, he's going to do fine. My dad ended up in a BiPAP in the ICU, which is a machine that helps him breathe. I walked into the room and he said, well, it's not looking good. They think maybe I have a year left and they're talking about hospice. And I said, well, that doesn't even make sense because hospice requires a life expectancy of six months or less, not a year. And my mom just threw her hands up and said, we're so confused. Can you call the pulmonologist? So, I called the pulmonologist and I said, is it time for a hospice consult? And he said, yes, I believe it is. If your dad has another event like that, he's going to end up on a ventilator and I don't think he wants that. And I said, I know he doesn't want that. So, yes, we need a hospice consult. My dad was on a fluid restriction. He was on a diabetic diet, which he hated. My dad was a big guy from the South who loved to eat. He loved his massive venti Starbucks. He was so thirsty all the time and eating terrible diabetic hospital food. So, as soon as we got that hospice console, we went out and we got him a massive plate of meat from the Golden Corral. They call it a meat buffet. We got him a huge venti Starbucks. We all spent a little bit of time with them. The plan was to take him home the next day. I would be his nurse. And we were so thankful that we did all that for him because he died that night! He was on hospice for less than 12 hours. I'm a hospice nurse. I'm pushing these doctors every single day and they're pushing back. So, you can imagine how hard it is for somebody who's trying to advocate for their person when you've got doctors who think that they can cure anything.

David Lowry: 18:58

You've seen a lot of people come to their final moments and one of the things that I hope our program can do in the second half of life is face this with resilience and with integrity and with courage. Tell us some things you think can help us as we come to these final chapters of our life and things our caregivers should know as well.

Penny Smith: 19:21

Definitely what we're doing right now, and that is having discussions about it, talking about it. People have a lot of fear around dying because we don't talk about it. It's unknown. And so anything that we're not familiar with is going to be scary to us. It's become such a taboo topic. Nobody wants to talk about it. So, really, I think that's part of the key to, getting to a place of acceptance that we are all going to die, because we absolutely are, is to be able to have open conversations around that. It also will facilitate, closure and goodbyes at the end of life to be able to do that. I really always encourage caregivers not to be afraid to have conversations with the person who's dying. People, when they first are told that they're going on hospice, oftentimes, the knee jerk reaction is to be terrified and sad. And that's, understandable, right? I always say I'm not afraid of dying, but if I was told that I was now qualified for hospice, I would be like, oh crap, you know, like, I'd be sad and I'd be scared because, darn, I don't want to lead this life yet, I want to live as long as I can just like anybody else. And when I get that way, by the way, other people are so uncomfortable with that, with how they feel. They want to fix it. People will come to me in my comment section and say, look, this person who has cancer is on Tik TOK and they're crying because they're dying, help them. I'm like, I can't help that. They have to come to terms with this on their own. And it's fair that they feel that way. They need to feel that way. You need to go through that grief process. You're grieving the inevitable end of your life that you're now faced with. So, it's important to allow people that grief, but also be there for them when they're willing to finally talk about it because many, many people who are dying want to talk about that with their family and the family shuts them down or the person who's dying is afraid of bumming their family out. I just talked to somebody the other day who was saying that their uncle was very close to them and they were in the doctor's office together and the doctor said, it's metastatic there's no more treatment. He's going to die from this and his reaction to hearing this news about his uncle was just to lose it and to just really cry and cry and cry. And from that point on, his uncle would never acknowledge to him that he was dying. And the nephew thinks, he's in denial. But really what's probably happening is the uncle doesn't want to have to see that pain anymore. And so he's like, let's not talk about it. I don't want to talk about the fact that I'm dying. Or I'm not dying. I'm not going to die. I'm going to live forever. So, it tends to keep the person who's dying from talking about it. So, the number one thing that I tell people whose person is on hospice is have conversations. This is your chance to really talk about what's important and most people who are dying want to know that life had meaning. That's the most important thing.

David Lowry: 22:28

Tell me more about that. I'd like to explore that. Your life had meaning. Should we talk about the things they did that made a difference in our life? Give us some of the things we should be putting into them at this time.

Penny Smith: 22:40

Telling them how the presence of them in their life or in your life has made you a better person. Or changed how you think about things or just enrich your life in whatever way, to let them know that they also want to know that the things that they, the survivors of people that they loved will be okay. They want to know that they're going to be okay. So, it's funny because when I first started hospice, it used to always, the focus was on let them know you'll be okay. Let them know you'll be okay. And, as I grew in my knowledge in hospice and work with more and more people who are professionals and kind of hospice grows too, because I've been a hospice nurse for 20 years we've grown too with how we look at things. Things have changed a lot and realizing that there are more things than just, they want to know that their person's going to be okay. They want to know that the things that they cared about are going to be taken care of it, whether that's. People, pets, the house that they built, that whatever, but also fundamentally that their life had meaning. We all want to feel at the end of the day, that there was a whole reason for us to be here and go through everything that we went.

David Lowry: 23:51

Could you describe a situation that you've been through yourself over the years that sticks in your mind of maybe the ideal way to go through this process. I think we have so few great examples of people who leave this world that can set an example for now that's the way I want to go out!

Don Drew: 24:09

Yeah, so somebody who had a good death.

Penny Smith: 24:12

So, one, I remember was a wildlife photographer and she was at our hospice care center. So, I've worked in hospice care centers and this is where people come when they have symptoms that can't really be managed at home. They come into the hospice care center. And her family brought in these Beautiful pictures that she had taken in Africa. They were all framed and they put them up in the room. And she would go in there and tell us all about these pictures that she had. She was writing her own obituary. She said, I'm the only one who can really tell my story. And her sons came to visit and one of her sons was a musician and he had this electric keyboard and he would put it in the hallway and play music for her every night. It was just absolutely beautiful. She was so accepting of the end of her life. She was just like I've had a wonderful life and I'm ready to go. I had another patient Who had cancer when she was a child and her leg was amputated. She lived to be in her forties and had so many friends and they were visiting all the time and it was just so wonderful. She would reminisce with her friends and she didn't want to be in a hospital bed. It's always important to the hospice nurse to get a hospital bed in the house, even if it's not something they're going to sleep in all the time, because people don't usually die really fast. They don't just drop dead. They go through a dying process and part of that time they're going to be unresponsive and you have to care for them. So, if they're in a regular bed, it's really hard to do that. So, I convinced her to get a hospital bed and she put it in the living room. And she said, well, I'm going to die in my own bed, but I'm willing to have this hospital bed. So, during the day. I can be in the hospital bed. She went through photo albums with her sister, and she picked out the photos that she wanted for her memorial. And then when the time came, she made it to the hospital bed, and she died in her hospital bed in her husband's arms.

David Lowry: 26:11

That is a love story right there. I wish our listeners could see Penny as we do and see your face as you tell these stories of these beautiful people you've known and their last moments in passing.

Penny Smith: 26:23

I do want to circle back for a minute on the palliative care and hospice because I did bring that up. So, palliative care, some people think of it as a stepping stone to hospice. Palliative care providers don't necessarily look at it that way. But palliative care is for people who have a life limiting disease or a terminal condition with any life expectancy, and that is when they are going to start focusing on more symptom management. So, again, they're looking at the whole person, not just treating the disease. The oncologist is there to treat the cancer. Palliative care helps to determine if there are other things that are going to help to enrich that person's life and make that better for them. And then from palliative care, oftentimes people end up transitioning into hospice. The big difference is that with palliative care, you can continue the treatment for your disease hospice. You have to stop it. And hospice does go to people's homes where palliative care is really more clinic based or hospital based.

Don Drew: 27:20

Penny, you've written a book and you have a podcast and I think a number of other social media things going on out there. Can you tell us what all you've got going on?

Penny Smith: 27:29

I am on all the socials facebook, YouTube, Instagram, and TikTok HospiceNursePenny. I also have a website, HospiceNursePenny. com. I have resources on my website, including an interview guide. So, if you're calling a hospice and you want to ask questions about things that you might want from that agency that can help guide that. My podcast is called Death Happens: An Insider's Guide to Dying. I do that with my partner, who's a hospice social worker. And that can be found wherever pods are on tube as well. And then my book Influencing Death, Reframing Dying for Better Living can be found anywhere books are sold. online. There's an audio version. I did create that myself. And then links for that are also in my website. My website has all that information.

Don Drew: 28:16

Nurse Penny, thank you very much for being with us today. This has just been a great conversation. And to our listeners, we hope you were able to find perhaps some comfort and ideas that might make your life better. Thank you for joining us today on Peaceful Life Radio.