Hospice Nurse Penny is everywhere on social media with her fast-paced, humorous, informative commentary – through which she offers education about death and dying. As a hospice nurse, Penny sees firsthand the misconceptions about hospice and how, when understood for its what it is and what it is not, “Hospice provides education and support and a team.”

On this episode we talk about:

✅ How do you “get on” hospice?

✅ How are families supported when they choose hospice?

✅ When is the “right” time to visit?

✅ What is hospice and what is it not?

✅ What is the “end of life rally” that is sometimes seen?

✅ What do we mean by quality of life over quantity of life?

✅ What do people need to know to take advantage of what hospice has to offer?

Learn more and follow Penny on IG at instagram.com/hospicenursepenny

Transcript:

Diane Hullet: Hi, I am Diane Hullet and you’re listening to the Best Life Best Death podcast. And today I’ve got another amazing hospice nurse. Joining me today is Penny Smith, also known as Hospice Nurse Penny, and she’s on all the socials, TikTok, Facebook, Instagram, you name it, LinkedIn. She’s there. So welcome, penny.

Hospice Nurse Penny: Hi. Thank you. 

Diane Hullet: I’m excited because I feel like hospice nurses really have a lot to say to an audience and, you know, my listeners are both kind of lay people who are curious about end of life and also end of life workers and doulas and nurses and doctors and, you know, people who just wanna ignite this conversation.

And I feel like that’s what you do. So tell us, you know, just give us a little introduction about yourself. 

Hospice Nurse Penny: Well first of all, I was a late bloomer, so I actually didn’t even go to nursing school until I was 40. And I knew when I went to nursing school that my end goal was going to be a hospice nurse.

So after working in a clinic for a year and in a med-surg. Unit for about three months. I was hired at a hospice care center and I worked in inpatient hospice, which I always think of as at the bedside in your face, death and dying. Lot of experience with death in that environment. I did that for about seven years and then I went into home hospice and was a case manager for several years, and then I went into quality.

So I’ve been in quality regulatory education. I’ve just kind of, Done pretty much about everything you can do as a hospice nurse within hospice. 

Diane Hullet: Wow. And then, and then when did you kind of say, I’ve kind of got some attitude and some fun and some education to throw up on social media? When did you get started with that?

Hospice Nurse Penny: Well, I’ve always been really passionate about educating around death and dying and advocating for hospice. It’s always been something I’ve been passionate about. And then during the Covid shutdown, I found my way to TikTok. And to be honest, when I started on TikTok, I wasn’t even. Remotely thinking about talking about death and dying.

I was trying to learn how to shuffle dance and, you know, watching people cooking things, it wasn’t something that ever crossed my mind, but for some reason, one day I decided to tell a story about an experience I had as a hospice nurse and people really liked it. It went viral and I started to gain a lot of followers and I realized that this could be a kind of grassroots way of.

Reaching people and spreading the word about hospice and educating and normalizing death and dying. 

Diane Hullet: I feel like people like you and Hospice Nurse Julie and some other really amazing people on Instagram and social media are, are definitely impacting people who go to those platforms, right? Like I think a younger generation is going to have a really different experience.

Do you, do you find, like, is your audience ever go to the over 70, over 80 crowd or not so much? 

Hospice Nurse Penny: It. I am not sure because on the social media platforms, you know, it usually shows age ranges in your demographics and they get to 50 and it’s usually 50 plus and then it. So I don’t know, you know, I don’t know how many older people now I, you know, anecdotally, I could tell you there are people who tell me in their comments, I’m 75, or, you know, they’ll tell me that they’re older.

I’m not sure how many people in that age range. Use social media. So it, it’s really hard to know, but I, I do know that I have a lot of followers who are, you know, 13 to 18, 18 to 25. I do have the, the younger generation, which I love. And, and it’s one of the reasons that I. Present a lot of my education in the way that I do, which is, you know, using the TikTok trends or dark humor or dancing and pointing to words to, to educate about things because I feel like the younger audience that’s more appealing to them to see those little, and, and for people who have a short attention span, you know, a 15 second clip can, you can, you can say a lot in 15 seconds just by putting some words on the screen.

And it really does reach a lot of people. 

Diane Hullet: For sure, and I think yours really stand out with this blend of, like you said, kind of dark humor and truth telling and they’re kind of funny and you sometimes do song mashups that really work. I, I think it’s so interesting. It’ll be really interesting to see as that generation ages, like what their experience is.

Because they’re hearing things. Well, you know what I was thinking? I was thinking it’s almost like, say at the turn of the century, death was more in the home, right? Mm-hmm. And people died at home and families understood that and young people were exposed to it. So this is almost like the current modern 21st century version of Death in the Home is having it on social media.

Yeah, I 

Hospice Nurse Penny: agree. Definitely. That really just resonates with me. I think about that all the time, about how death was in the home. People did experience it all the time. They didn’t close their eyes to it. They weren’t afraid to talk about it. They didn’t use euphemisms to, to talk about it, you know? And, and then we went into this.

Medical advancement where we could keep people alive forever and then they would die in the hospital and it, they were hidden away. People didn’t really see them. And, and that really kind of did a disservice to us as a human population because we did start to develop this. Fear around death and, and it became such a taboo topic.

But I, I do get young people who comment to me that they are experiencing this right now with the grandparent, or that they did, and that my videos have been helpful to them. I, I love the one, you know, the, it’s always good to know that somebody who felt guilt about an experience they had has that.

Guilt relieved by watching my videos, but I even love it more when somebody says, I’m going through this right now, and thank you, because I was able to explain to my whole family that what we were seeing was normal and we were all able to be with my person. You know, hearing the younger people or really anybody saying those things is very rewarding and, and lets me know I’m, I’m doing the right thing.

Diane Hullet: Yeah, you’re on the right track. Do you have any, can you do any examples come to mind of like a specific thing you’ve talked about that’s been helpful for people to 

Hospice Nurse Penny: know? Yeah. I, I have one that comes to mind every time somebody asks me that question and, and it’s when I first started, Doing the talks and I was dancing around.

The song lyrics were, it’s just water. So, so it was saying It’s just water. It’s just water. And I was dancing around, it’s less than 15 seconds long, and I put words on the screen that said if your person. Doesn’t want anything to drink. That’s okay. They’re not going to die from dehydration. They’re going to die from their disease.

Their, their body is shutting down. Something along those lines, you know, like basically explaining that people at the end of life don’t need fluids because their body is shutting down. And somebody sent me a comment and said, For 15 years, I have felt guilty that I thought my dad died of dehydration, and thank you so much for this video because now I realize that he didn’t.

And that was just, I mean, for me, I’ve never forgotten that. That was three years ago and, and I really just affirmed that people can learn from a quick little clip with a silly little song and some 

Diane Hullet: words on the screen. That’s incredible. Yeah. 15 years of guilt released in 15 seconds and some words.

That’s, yeah, that great. That’s a great example of that. Do you see yourself branching out? I mean, do you ever do longer things on YouTube or are you doing anything like that? Or do you like the short and kind of dark humor and fast and furious and music? Well, I’ll never 

Hospice Nurse Penny: stop doing those things because I, I’ve always had a bit of an entertainer streak in my blood and I really love dressing up and I love the lip syncing.

And I, and I love having fun and those are fun for me. But I am making longer versions of more explanation and putting them on YouTube. I’m trying to get myself set up with a better. Recording system to do that. I do speaking engagements. I would really love to start going to schools and speaking at at schools.

And as you know, hospice nurse Julie and I are doing a retreat this fall together to in-person, do some education and so yeah, I definitely am branching out. Say 

Diane Hullet: more about the retreat and the first time I saw you and Hospice nurse Julie together, you were, I think on Instagram doing some kind of really funny like calisthenics, gymnastics thing together, right?

We trying to like do this like dance move that was supposed to be very, you know, coordinated and fabulous and you both kind of fell over on the couch and I was like, these two are awesome. You know, you just put up your. Stakes and your humor all the time, hand in hand with death and dying messages. So, h how did the retreat come about and what, what will the subject be?

Well, 

Hospice Nurse Penny: so hospice nurse Julie and I met through TikTok and she’s in California and I’m in Washington, and we really clicked right away. We’re so much alike and it’s really fun to be together. We’ve been together in person a couple of times and somebody that does a retreat in it’s the Art of Living Center in Re Art of Living Retreat Center in Boone, North Carolina, reached out to us and said, would you like to do a retreat and.

So we talked about it and we said, yeah, we’d really like to do this. And it’s a three day retreat. It’s a beautiful place. It’s a I, I guess a very well known retreat center. And it’s gonna be a Friday through Sunday. We’re doing a meet and greet on Friday, like a q and a. And then we’re gonna do a couple of sessions on Saturday and one on Sunday.

And we’re going to be talking about everything related to death, grief, caregiving durable medical equipment. You know what to expect when your person is dying, how to be with your dying person. And then we’re also going to be helping people fill out five wishes, which is an advanced directive like Booklet that has not just things about tube feeding and resuscitation, but what kind of things do you want?

It’s like a death plan, basically. And so we’re going to help people fill that out if they have questions. A lot of people have questions about tube feeding. You know, when should we choose it? When should we not? And so we’re just gonna kind of help people fill that out so that they have something to take home with them.

So we’re really looking forward to it. 

Diane Hullet: That sounds amazing and, and again, sort of like a way to do this in community and have a good time with it while facing the reality of mortality. I mean, it sounds really, really awesome and so it’s aimed at the general public, but you’ll probably end up with professionals there as well.

Hospice Nurse Penny: Yeah, it’s, it’s open to anybody. We expect that there are going to be probably some healthcare professionals, death doulas and, and just people who are interested in learning more about death and dying. It’s, it’s, it’ll definitely be a good time when Julie and I get together. We like to have fun.

What are the dates of it? It’s September 15th, I believe it’s the Friday through that weekend. Awesome. 

Diane Hullet: So September 15th, and this is 2023 in case someone’s listening to this, you know, a year from now, right? Yes. 

Hospice Nurse Penny: And if you’re listening a year from now, there might even be some more. We’re hoping to take our show on the 

Diane Hullet: road at some point.

I could totally see that. So you can probably find out about that on either of their websites or watch Instagram and so on. Well, what. As a, as a hospice nurse. Let’s kind of bring it back around to that penny. Like what do you think people need to know about hospice that they don’t know about hospice? I mean, I’ve said before on my podcast, like I’m a little bit odd because I’ve had eight family members die at home with, so I kinda, wow.

Well, that’s just what you do, right? You call hospice and you get support and. Most of them have been, you know, a longer amount of time, four months or two months, or a few weeks, that kind of thing. So it, it, it just sort of, you know, has opened my mind to realize that that is not a lot of people’s reality.

But what do people need to know to take advantage of what hospice has to offer? 

Hospice Nurse Penny: Well so many things. First, let’s start with how do you get to hospice and people think that you need to have a doctor’s referral and you don’t. You can actually self refer to hospice. I always recommend that people talk to their provider.

I. First to see what their provider thinks. But if they’re getting pushback and they, you know, sometimes family members really see more with their person than what the doctor sees in a little 40 minute or 20 minute visit. And so if, if somebody’s getting pushback from their provider and they feel like.

They’re seeing something different and they’d like somebody else who’s more professional, or I won’t say more professional, let’s say more experienced in hospice to evaluate their person. They can self refer to hospice. You do not have to go with the ho hospice that is if you’re person’s in a hospital and the hospital is saying, here, you can go to, you know, Joe Schmo Hospice.

You don’t have to go to the hospice that you’re referred to at the hospital. You can choose your own hospice. You also have the right to transfer to a different agency if you’re not satisfied with the agency that you have. A lot of people will say, I had a terrible experience with hospice. I kept calling.

Things weren’t getting better, and I say, Ooh, you can change to a different hospice if you don’t like the one that you are currently with. Another thing that’s important to know is that hospice is for a life expectancy of six months or less. It’s not for just the last final days when a person is dying.

We want people to come on as early as they possibly can because we have so much to offer. We wanna be able to get to know our patients so that we really know how to help them best at the end of their life. People also think sometimes that choosing hospice means choosing death that you are, you know, that’s it.

It’s over. We’re resigned to, this person’s gonna die. And while it is end of life focused, it is for people who are terminally ill. We don’t ask people to give up hope. We ask them to change what hope means to them, to hope to stay in their home with their family and their friends at the bedside. To hope that they can avoid going to the ER or being hospitalized at the end of life.

There are so many things that we can do to help people to have a higher quality of life at the end of life, and that really is our goal, you know, is quality of life over quantity of life. We don’t do anything to prolong life, but we don’t also don’t do anything to hasten death. You know, it’s really about making the best of whatever time that they have left.

Diane Hullet: I’m so glad you brought that up like that because I think it’s amazing how many people associate hospice with hastening death, and in fact, the person is dying. Hospice is there to support that experience for the dying person and for the fa and I think people forget how much support they’re going to need as family members.

It’s, you know, my husband and I were talking about it. It was like, This is like a level of adulting that you suddenly have to jump into and you have no experience for it, and suddenly you’re just supposed to figure out how to do this. So hospice, I think, really does provide that education and support and team, because often, most often family members are the primary caregivers.

But you’ve gotta have a team beside you and behind you if you are getting on board with hospice sooner rather than later. 

Hospice Nurse Penny: Yeah. Thanks for bringing that up, because that’s another thing that’s really important for people to know. Hospice. It is not a place, and it’s not 24 7 care. You don’t get a nurse that’s gonna come into your home and take care of your person 24 hours a day.

You do have a nurse that will come as often as needed. You know, it’s individualized to the person who’s dying to with their needs. There is a social worker, there’s a spiritual care counselor, there’s a hospice aide to come, you know, a couple days a week and bathe the person. But we. Educate and train the family members to take care of their dying person, and they are the caregivers.

Absolutely. Thank you for bringing that up because that, that is a, a common myth. People will say, well, I was expecting 20, even when it’s exp. Explain to them before they sign on to services, we still have. So I’m in quality. So I see the comments on the surveys that we send out after the person’s death and they’ll say, I thought they were gonna be there all the time.

You know? And no, we are not. There is a nurse available by phone twenty four seven. We often send people out in the middle of the night, you know, to manage symptoms that have. Have started to become problematic. But yes, we do not do that 24 7 care in the home. And 

Diane Hullet: I think we’re ill prepared for that.

And, and families are so disparate, you know, living all over the country, there might be the son who lives nearby. Maybe that person is married and they’re trying to be their supportive and two other siblings are, you know, thousands of miles away. It it, it is a challenge to figure out how to patch together that care.

For the family member who’s dying, especially if it takes some time. 

Hospice Nurse Penny: Yeah. And it’s imp it, it, it’s really difficult for people who are far away to even wrap their mind around what’s going on because they’ve seen that person when they were healthy. And when I worked at the care center, I remember calling people who lived far away and, and I would say, you know, you need to come.

They’re hospice. You should always, you know if, if somebody goes on hospice and you’re trying to figure out when to go see them, you know, I’ve had so many people say to me, well, like, I’m trying to figure out when to take my vacation. When is the best time to come? I always say, now is the best time to come.

They’re dying. They’re on hospice. You will never regret coming to see that person if they live longer than you expected. But if they die faster and you didn’t make it there, you’re gonna feel really bad that you weren’t there on time. So, yeah, it’s, it’s hard for people to, to think about, gosh, I just saw my, my grandpa.

Two months ago at the family reunion and he looked really good. Yeah. And things changed really fast sometimes, and. You know, it’s really important to try to, that’s kind of nice about Zoom now. When I started doing hospice, I’ve been doing hospice almost 18 years. When I started doing it, we didn’t have Zoom calls.

We had flip phones still. We didn’t have smartphones, and we did not have that technology to be able to hold a camera up and say, here is what they look like, you know? And so it’s kind of nice that we have that now, but, but you know, again, it’s. It’s really hard for people to, to, to wrap their mind around somebody dying when they just saw ’em not very long ago and they looked fine.

Diane Hullet: I think I’m so happy you brought that up. I think that’s really, really powerful to hear that and to really think like the time to go is now. And even when you see them, they might kind of rally and seem a little better than they were the week before, but that doesn’t mean they’re not dying. You know?

That doesn’t mean right. Isn’t still coming sooner rather than later. And so if that’s important, I think that that visiting time, if you can afford it, if you can do it, I always feel like that’s one of those once in a lifetime things you’re, you’re never gonna be like, oh, too bad I did that and went and saw the person, you know?

Sometimes you might even go a second time. I remember it being very difficult to leave a grandparent who we knew was not gonna be alive for long, and yet we had to leave and go back to our, you know, work and life. And it was so difficult to leave. I, I really would’ve preferred to stay through the end.

And that was one of the most painful goodbyes I remember was knowing that it was the last goodbye and they were still okay, but very much towards 

Hospice Nurse Penny: the end. Yeah. Hey, let’s talk about that phenomenon of the end of life rally. So many people are, are blown away by that. You know, anytime I do a video about the rally it, it usually goes viral.

People are just fascinated by that. We don’t have any explanation for it, but it is difficult when, like you said, somebody says, Hey, they’re dying. And then you go there and they’re like, Hey, yeah, let’s have a party. I wanna play some games and I want something to eat in the day. Before they looked like they were gonna die any minute.

Everybody thinks, oh, they’re getting better. They can come off of hospice. But the reality is they’re closer to death and it doesn’t last very long, and then they usually die within about a week. So always we have to make sure that we manage people’s expectations when that happens. I, I, Educate about that a lot on my social media, but in real life, seeing patients, it wasn’t something I would usually bring up ahead of time unless it happened, because if it doesn’t, right, then they’re disappointed, they’re expecting it.

It happens in about four out of 10 dying people that they have that that end of life rally. But when we would see that happening, then I would say, yeah, we see this a lot. It doesn’t usually last long. It’s a great window of opportunity for you to be with your person, but it may not last long. So just, you know, be prepared.

Diane Hullet: Right. I was so struck. I recently read a book in that I loved so much, and I can’t remember the title right at the moment, but it was this beautiful book about a husband and a wife, and the wife is planning a medical aid and dying death, and she’s dying of a kind of cancer and yet, He still feels, he still on some level feels like they have more time.

This is a true story. Mm-hmm. And, and he’s very kind of shocked and saddened when he realized they just had their last conversation. And I found that so poignant, you know, that we don’t know what the last conversation will be. And then, you know, they had this little moment one afternoon, not, she wasn’t very lucid, but they had a, an exchange and then she just, Really became, maybe not comatose technically, but, but very much out of it.

And He was so beautiful writing about that in this book about how he, he just, he didn’t know that was coming and, and it was like this anticipatory grief that he hadn’t expected that he mm-hmm. That it’s like, oh, I wish I’d anticipated that last conversation. I would’ve been even more. Maybe expressed more love even than he did, you know, something like that.

But this was a very loving, connected couple. And they, they, they did what? That they did what they could do, you know? And yet those last moments, we don’t always know when the last moments are. 

Hospice Nurse Penny: Most of the time we probably don’t. I think the only time we really do is when they do medical aid and dying.

In the US the person has to be able to self-administer the medication. So typically they are gonna be. Know, having a last conversation and everybody knows it, but I think most of the time, regardless of how a person dies, if it’s in a car accident, if it’s, you know, if you’re murdered, if you’re die, a natural death in the hospital, we, we don’t really ever know when that last conversation might be.

That’s why it’s important to always make sure that all of our conversations are, are as meaningful as possible, and we never leave things unsaid that are important. 

Diane Hullet: Yeah. I love, especially the idea of these, these things that are kind of niggling at us. You know, I sometimes bring that up with, with clients, you know, it’s like, well, what’s, what’s the niggle?

You know? What’s the thing that if you were suddenly hit by a car and lying in the ambulance knowing you were maybe dying, what do you wish you had said? Go say it. Go do it. Write the email, send the text. Yeah. Yes. Out, because we don’t get those moments back. Yes. Well, I love I love what you bring Penny.

I, I just think your directness and humor, and I, I’m sure it’s not for everyone, right? Some of the dark humor rubs people wrong. And, and I understand that people do bring trauma from past deaths and sometimes they’re just too raw to take that kind of I don’t know, probing and humor and music and sparkles on Instagram, but I think for those of us who can take it in you, you bring a real service that like you said, 15 seconds can change an experience of 15 years really quickly.

Yeah. 

Hospice Nurse Penny: Thank 

Diane Hullet: you. Well, I hope you and Julie have lots of people at this retreat and that you continue to do lots more. It sounds like just a great way to come together in community and have these kind of surprising conversations that are enlivening and enlightening and shift the way we handle this huge life transition called death.

Yes. Thank you. 

Hospice Nurse Penny: Where can people follow you, penny? I’m on YouTube, Instagram, Facebook, and TikTok. My username on all of those things is at Hospice Nurse Penny. I have a website that I’ve just started. It’s hospice nurse penny.com. There’s not a whole lot there yet, so depending on when your listeners go to see it, maybe if it’s, like you said a year from now, there might be a whole lot there, but if you go today, there may not be, there’s less.

Yeah. 

Diane Hullet: Wonderful. Well, thanks so much Penny. Thank you. Appreciate it. You’ve been listening to the Best Life Best Death podcast, and you can find out more about the work I do at Best Life. Best death.com. Thanks for listening.