Ray Spadoni (4:46)

So it really sounds together like it's the coming together of your, your career, your interests, and what happened during the pandemic. In some ways, it all came together. I'm struck when I looked at your materials, when I heard you talk that day, that there's really two dimensions. One is helping folks to become more comfortable around death and also to confront their own mortality and perhaps their own fear of death. And those are two related, certainly, but different things. Let's talk about the issue of folks who are experiencing the death of a loved one, which can be quite traumatic, can be very frightening, can be very emotional. Yet you use humor, light humor, sometimes dark humor, storytelling. You mentioned dance, and you and, and you also mix in there a lot of very direct talk to demystify death. What has been the reaction to this approach?

Penny Hawkins Smith (5:55)

Well, overall, it's, it's positive. I, I, there are some people who are haters. They just hate hospice in general and don't like me making fun of death and dying and, and families who are experiencing the death of their person. But the humor works really well. Humor is a great coping mechanism. And having worked with thousands of dying patients and their families, I've experienced that humor with them. And so I feel comfortable being able to Educate using humor sometimes as an element. I always say the topic of death is a very dark topic. It's very dark. And so if I can lighten it up and make it a little bit more fun, if you will, and give it to people in little tiny digestible pieces which you can get with a 10 or 15 second TikTok, then it makes it easier for them to learn. Also, I recognize that there are many different learning styles. And so some people like to watch the little lip sync videos or the dance videos where I'm just pointing at words and others want the straight talk. And I do that as well. And I answer questions people have, so I reach people who learn in different ways. So I'm not like zeroed in on one type of learning style. And so I'm more able to reach a broader audience in that way.

Ray Spadoni (7:30)

I see. So. Well, you, you spent many years bedside working with family members, loved ones, patients, obviously, and this notion of, of people becoming more comfortable with it. Well, now you're doing it with a video camera and you're doing it through, through, you know, Internet and so forth. But I would imagine while the vehicle's quite different, a lot of the messages are the same. And so when you are working with someone, whether it's bedside or, you know, via the Internet, and communicating more remotely in that regard, when someone is experiencing the loss of a loved one and they become more comfortable with death and it becomes somewhat demystified, what is that like? What's the benefit of that? What do people experience when this happens?

Penny Hawkins Smith (8:25)

Well, they experience an opportunity to have some really meaningful conversations and to let the person who's dying know what they've meant to them, which is important. People want to know at the end of their life that their, their life had meaning. So it enables conversations with those people, you know, otherwise they're afraid to talk about the elephant in the room. The dying patient doesn't want to talk about the fact that they're dying to their family because it's going to bum them out, which they're going to be bummed out anyway. And the family doesn't want to talk to the patient about it because it might cause them to give up hope and die faster. And we know that's not going to happen. So when you can get it out all on the table and have a discussion, it just enables like some really beautiful connections between people at this, you know, time of life. That's, that's, it's sacred, you know, it happens to all of us in the end. And it just it facilitates these deeper, meaningful conversations.

Ray Spadoni (9:26)

You know, as someone who is not a clinician, but who has been in and around health care and, you know, certainly had some personal experiences as well, I recognize the fact that there may be people who encounter your content and who may be listening to this podcast who have fear of death, loved ones. And, you know, and intertwined with that, I'm sure, is this sense of confronting our own mortality, confronting our own death. And so I think the term you used is death anxiety. And so if someone's listening to this or someone's thinking about becoming one of your followers, but they feel a lot of trepidation about that, what advice would you have for those folks?

Penny Hawkins Smith (10:16)

Well, those are the people who absolutely should follow me. I had death anxiety myself, and becoming a hospice nurse is what helped me overcome that death anxiety. And for me, there were two layers. There was the. I wasn't raised with a religious belief, so didn't have a concept of an afterlife. So worried about what's going to happen after we die, and then just facing my mortality like everybody. I mean, many, many people have death anxiety. It's really common. I had no idea how common it was until I got on, on TikTok. But seeing people deathbed visioning helped me to kind of develop this belief in an afterlife, and that was part of it. But then something that I realized as I started educating about this on TikTok and people telling me, wow, watching your content makes me feel less anxious and afraid of death. I understood that accepting death is the key to stopping that fear. Because once we can say, I'm going to die, there's nothing I can do about it. I can put it behind me and I can focus on living my life instead. And honestly, I believe that is truly the key. And people do that just through watching these. These videos about it. You know, I poke fun at death and people just by watching these videos. Getting in the conversation, not being afraid to hear about it, not being afraid to talk about it is what helps them to get to that place of acceptance.

Ray Spadoni (11:48)

Well, you brought up the spiritual dimension, and you mentioned your own experience relative to that. For the folks who you've encountered when you were a hospice nurse or now in this work, can you talk a little bit about. Given there's such important distinctions here, for those who might believe that death is a passage versus death is the end, I would think that they might react to what you say and what you do and what you're trying to accomplish through your work. Do you feel that there's something for everyone across that spectrum of possibilities when they find out what you're doing and hear your message.

Penny Hawkins Smith (12:36)

Absolutely. Because my message isn't just about death not being the end. My message is about death being a normal part of our lives. It's the circle of life. And doesn't matter what you believe happens to us after we die, you're still going to have a death experience in your life, usually with somebody else or even a pet. And knowing what to expect is going to make that experience easier. The afterlife aspect of it is just a small piece of it. I have lots of atheists who follow me and they're like, yeah, I don't believe anything happens after. But this information about what happens before is pretty good to know because especially to them, what is happening during our life is more important than what may or may not happen after our death. And so it's helpful for anyone because it really is just everything about end of life, not just afterlife. That's a really small part.

Ray Spadoni (13:37)

Well, you know, for someone who might feel intimidated about diving into this topic, I would only say that as I was watching your videos, I found it very helpful, just the basic information of what to expect during the dying process. And if you are with someone who is dying, you can find that to be very difficult. But also you may have a hard time helping them and knowing what's happening, when to call help, when not to call help, you know how to react. And that's very empowering. And so I would imagine empowerment for the person who's doing the accompanying is also a very important part of this.

Penny Hawkins Smith (14:27)

Yes, absolutely. Teaching them what, again, what it comes back to, what is normal about the dying process? When should they call for help and when do they not need to call for help? You know, when should they give medications and when do they not need to give medications? It's very helpful for them to really identify these things that are normal. And again, reduces the fear immensely. Because I've seen so many people who really worried that their person was, you know, maybe not breathing right. It looks like they can't get any air. It looks like they can't breathe. And I say, oh, that's agonal breasts. That's normal. It's an autonomic response to the dying process. They're not suffering. We know that because we look at their face, they're relaxed. And people would say, oh, that's normal. Yeah, it's normal. Oh, you know, their relief is palpable. And I, I have people in. I mean, I, I had that experience as a clinician at the bedside with families. But also I have that experience through my social media with people commenting and saying thanks to you. I knew that I didn't need to worry about that gurgling noise they were making thanks to you. I was able to hold their hand and be with them even though they didn't look the same anymore. Which is another thing I like to point out, you know, that death and dying doesn't look like what television movie producers want us to believe. It's completely different than that. And when people see somebody who they love look completely different than they used to, and if you're not used to it, you could think it's off putting the way that people who are dying or dead look. But if you understand that that's to be expected, it's easier for you to be with that person.

Ray Spadoni (16:14)

Well, I'm interested, Penny, in your own experience of coming to this work and the fact that you produce a lot of content. There's a lot there and you continue to produce it. So maybe this is two sides of the same coin, but I guess the first one is you are teaching quite a bit, but are you also learning? And then the second part is, how are you coming up with ideas on this topic and still find a way to make it fresh and interesting?

Penny Hawkins Smith (16:46)

Well, as far as have I learned things, I. I have learned. I've learned a lot. Like I said, I've learned about people having death anxiety. And honestly, I didn't realize that it was the acceptance of death that is the ultimate answer to reducing that death anxiety until I got onto TikTok. And the way that happened was I had done patient care for years and so I had those experiences with seeing the deathbed visions and got this like belief of the afterlife and was like, oh, okay, now you know, I'm okay with death. But then when I stepped away to the from the bedside to do a hospice quality and education role, after a while I started feeling that death anxiety creeping up in me again. When I got on TikTok and I started talking about it and educating about it, it went away. And that's what made me realize it's. That's what it comes down to is that acceptance. So that was a big thing that I learned through this. I've also learned about adult learning and how to reach other people in different ways, as I said. And then as far as coming up with ideas, some of my ideas aren't fresh. Like they're the same concepts over and over. And that's because of the nature of how social Media works. I can have 2 million followers across my platforms, but not all of them are going to see every video that I make. They're going to see some, but not all. And so I can use the same concepts and apply different techniques, if you will, trends, and it's still fresh to the audience. And other than that, I don't know where I get these ideas. I watch these trends and I think to myself, how can I make that about death? You know, how can I make that about cpr? How can I make that about morphine? How can I make that about starving patients? You know? And then it just comes to me. I don't know. I'm just creative and it comes to me.

Ray Spadoni (19:03)

That's great. What's your challenge? What's hard about this for you?

Penny Hawkins Smith (19:10)

Well, right now what's hard about it is that TikTok is being banned and I'm going to have to find. And I mean, I am I a very big presence on Facebook, YouTube and Instagram as well. And I'm in a new ch, a new Chinese app called RedNote. But my challenge is that I really use TikTok to. For the trends. That's where. And that's my. That's kind of my biggest, like, seller, if you will. People like the straight talk too. I'm really very much shoot from the hip. I don't mince words. And they like that I can answer their comments. And, and, and that's going to go away with TikTok because no other platform has the ability to do that. And then the trends, like, that's what people love. They love the humor, they love the dancing. The majority of my audience, that's what they really like. And that I get from TikTok. My inspiration comes from TikTok. The sounds come from TikTok. There's no other app like it for recording those types of videos. So that is unfortunately the biggest challenge that I'm. That I'm facing. I would say the other challenge that's been ongoing is, and I don't really consider it that much of a challenge, but they're just. There are people who don't like hospice. They hate us. They think we murder our patients. There's a group called Murdered by Hospice on Facebook and they come after me often, target me. They've reported me, tried to report me to the. Well, they did report me. Somebody reported me to the board of nursing. So I had to send them all of my continuing education information was unfounded. I told them right off the bat, this is the deal. People don't like me because of what I talk about. So that's a bit of a challenge. But I, I don't, I'm not somebody who is easily intimidated by hateful comments by people who are considered trolls on the Internet who like to come in and say nasty things and accuse me of, of being awful and I shouldn't be a nurse and I typically don't. Those things aren't really a challenge for me because I'm, I'm not bothered by them.

Ray Spadoni (21:22)

The anti hospice, you know, groups and the, and the sentiment that you've encountered, do you think that that's more based on a sense that it's an unnecessary, unhelpful care pathway, or is it more about what you read about in the papers about hospice organizations that may be up to mischief and doing some things that aren't helpful? And you know what, like what, what's the root cause of the anti hospice sentiment, do you think?

Penny Hawkins Smith (21:53)

The root cause is that there are people who still don't want to talk about mortality. They, they don't. They believe that hospice is intentionally killing our patients. And especially in this murdered by hospice Facebook group. These are people who had a loved one who went onto hospice and died and they are absolutely certain that hospice hastened their death. It's like they believe that without hospice, their person would still be alive today. And most of these people have, they did not have the legal decision making authority for their person. Somebody else did. And so they're bitter because a family member chose to put their person on hospice and they had no say in it. The other thing is, and this is unfortunate but true, that a lot of our patients do die quickly when they come on a service because of the late referrals that we get. And so people associate hospice with causing death to happen faster because my person was fine and then they went on hospice and they died three days or a week later, but they were dying. They believe that we're starving people because people don't want to eat at the end of life and we say, okay, that's okay. So really I think it just comes down to people not accepting the death of their person. And, and they're in such grief that they, they just can't get there. And, and so they need someone to blame. And so it's easy to blame hospice. And, and to your point, there are some stories out there about hospices doing some unscrupulous things. And I'm sure you know that those stories are of agencies that are far and few between most hospice agencies are legit we don't go into this to try to kill people faster. And I will often point out that it makes no sense for us to end our patients lives faster because we don't get paid anymore once they die. And not that it's all about money, but if you're, you know, if you think about it, why would that benefit us? But, and then there's, there's myths that people just buy into it's conspiracy theories. Hospice gets a bonus when they die. They get paid more. So I do educate around the hospice benefit. That, that is the, that is the advantage that I have over my other hospice nurse colleagues who are now on social media and there are a lot of them and that is that I am really well versed in the regs because of my, my position in quality and regulatory. And so I do talk about the levels of care and the fact that a person can be a full code on hospice. And you know, the things that I know about that are legal to do on hospice or not legal to do like killing our patients. I'm able to speak to those, to those things.

Ray Spadoni (25:12)

Well, you know, families are complicated and end of life of a loved one is a very intense time and I'm sure brings out the very best and the very worst in our families. And if there's an element to the, the angst that this has prompted, it sounds as though a root cause of some of that is avoidance. And your approach is a lightning rod that is confronting avoidance in many respects. And so I could see how being a lightning rod, I mean this is the leader's dilemma. If you're going to be out in front, you're going to be the first to encounter whatever's coming at you. And I think you've done a fair bit of that. And so I think for those who benefit from understanding what the hospice benefit is and having some understanding of what the death process is like, I have to imagine that the, that the appreciation far, far outweighs any of the, the aggravation that you experience. Fair?

Penny Hawkins Smith (26:22)

Oh yeah, absolutely. Absolutely. Yes. I, I mean I wouldn't have as many followers as I, I have if people didn't want to hear what I have to say. Definitely. And people who, right, right now people are feeling their, feels about TikTok being banned. And so lots of people are coming into my comment section and telling me how much they appreciated me and how I made the death of their person so much better. And you know, it's very rewarding. I get a lot of messages and DMs and emails from people who are telling me how I change their whole perspective and their experience. And, you know, they were able to tell their family what was unfolding with the person that was dying, and the whole family was able to be present with the person. And so, yeah, there's a. There's a lot more reward than there is, you know, hate.

Ray Spadoni (27:21)

Yeah. Probably worth mentioning that we're recording this in mid January 2025, and the future of TikTok does appear to be up in the air. On the one hand, it looks like we're on the path to it being banned here in the United States, but that's far from certain. There are a lot of, you know, we have a new administration coming in that may think differently, so who knows, we'll see. But I would imagine that you could pivot to another platform. You're on other platforms, but perhaps the dominant platform for your content could be something other than TikTok. So I wish you the best of luck in whatever comes there.

Penny Hawkins Smith (28:00)

Thank you. Yeah, I definitely have huge followings on my other platforms as well. Again, it comes back to trying to navigate finding content trends and figuring out how to record those now that the. The tick. I've heard that TikTok's other app that they have is called Cap Cut and that's an editing app. And I've heard that that one may also be included in this ban. And that's just another. Going to be another problem for me. But, yeah, it might take me a minute to figure out, but I'm not going to give up. I'm going to continue my. I do have a huge audience on all three of the other YouTube, Facebook and Instagram. Very over a million on those three combined.

Ray Spadoni (28:49)

Well, I will make sure in the show notes to put a link to your website and that will include all the various ways to find you and so forth. But, you know, it's just this matter of TikTok. It's just as a person who is podcasting and putting some stuff out in social media himself, it's, it's. It's a little daunting to think about the fact that you can build up so much presence someplace to then have a decision made someplace else that would flick a switch and you'll lose it overnight. That doesn't sound very pleasant. So, you know, I guess that's a word of warning to anyone that you best diversify your versify.

Penny Hawkins Smith (29:29)

Yes. Yeah, absolutely. I'm really glad that I did that. A lot of people haven't and they're finding that they need to now try to build an audience on another app.

Ray Spadoni (29:39)

So I want to ask you a little bit about your audience. But first you brought up the issue of the hospice or I brought up, I think, the issue of the hospice industry. You commented on it. You're teaching about the hospice benefit. Given what this podcast is aimed towards, which is leaders and supporters of mission driven organizations, I've spent some time here talking about the shifts taking place in the broader health care industry. There's been a great shift that's taken place in hospice with the movement towards for profit, you know, within that industry. And there's been some press. You know, John Oliver did a piece a couple of months ago that was very funny, very pointed and, you know, fairly scary about things that are happening in the hospice industry from an industry perspective. I just wonder, given the primary audience of this and given the work that you do in this space, do you have any advice for people who care about such things or who tend to think top down about what's happening on the bigger chess piece related to the hospice industry?

Penny Hawkins Smith (30:47)

Well, I think it's important for agencies to start utilizing social media to be able to basically do the same thing I am. That is kind of the myth busting. I think it's really important that there are a lot of voices out there that are, you know, representing hospice authentically. And it is hard when John Oliver comes out and does his piece. And, you know, there was a little snippet in there about how most hospices are good, but the majority of his show was about these bad ones. And some of those stories were really old. They're not even current stories. And those hospice agencies were found, they were investigated, they were shut down, they were fined. I think some people were jailed. But that really puts a bad light on all the other hospices. So I think it's important for hospice agencies to start utilizing social media. Social media is where we get our news now. It is where people, we don't sit down and watch the evening news anymore. We get it from social media, a lot of us. And I think it's important for agencies, if they want to help, to dispel the lies that are put out there, to be able to utilize it in a way that's going to be more positive for them and for hospice in general.

Ray Spadoni (32:20)

Right. Well, it's the one bad apple phenomenon and it's important to understand what the bad players are doing so that you can counter it. But you have to be careful you don't paint with too broad a brush and extrapolate too much because as you said, and as I've certainly seen in my career, the vast majority of these organizations are in it to do the right thing and to be helpful and you know, in terms of your work. So you have a podcast called An Insider's Guide to Dying. Can you talk a little bit about, about that?

Penny Hawkins Smith (32:51)

Yeah, it's called Death Happens An Insider's Guide to Dying. And my partner is a hospice social worker and we have had some guests on there. But basically, you know, we're trying to empower people. Here's the other thing that I think it's important that hospice agencies do and that is empower people to know what is true about hospice and to know their rights when it comes to hospice. So a lot of what we talk about is, you know, the fact that you can transfer hospice agency, if you don't like it, you can revoke the benefit that you can, you know, you can be full code on hospice, that type of thing. Just really dispelling the myths about our focus on our podcast is much of what my focus on my other social media platforms are. And that is just telling the truth about hospice and helping people understand what their rights are.

Ray Spadoni (33:49)

Great. Well, not everyone listens to podcasts. I mean, many people do and not everyone watches videos and many people do. Some people still like to get it the old fashioned way, using words on a piece of paper. And your treatment of the issues can be quite a bit different. You can, you can elevate and elongate in ways that you can't necessarily in other ways. And I know you have a book that is just out. Can you talk a little bit about that and then where folks can get it? Yeah.

Penny Hawkins Smith (34:20)

My book is called Influencing Death, Reframing Dying for Better Living, and it is a memoir. My path to becoming a hospice nurse was littered with a lot of wreckage from drinking, drugging, going to jail, and other nefarious things that I did in my youth. I did not become a nurse until I was 41, I believe, and basically worked my way up from LPN to BSN and certified hospice and palliative care nurse. And so it's, it's about my life, but it's also about caring for dying people, the lessons that I've learned, caring for them, how that impacted my life. And then there's also a lot of education about death and dying that's wrapped into it. So I didn't want to write a book that was just a straightforward Gone from my Sight by Barbara Carnes book, which is, you know, the. That's the Little Blue Bible for hospice. And it's an amazing book, but I wanted mine to be something different, more entertaining, if you will, because that is, that's how I roll. And so, so it's funny. It's. It's got some poignant stories in there. I've had people telling me that they didn't expect to be in tears as much as they were, which kind of surprised me. But so far the feedback has been really good. It is out now and it's available anywhere. Books are sold online or if you like buying your book in a store, they can order it in for you. I don't expect it to be on bookshelves in bookstores at this point. Maybe in the future we'll see. But yeah, Amazon, Barnes and Noble, Tertullia. There's an audio version that I narrated. There's an ebook. So, yeah.

Ray Spadoni (36:03)

Well, I think, first of all, congratulations on writing the book and having it out there. And I think anyone who follows you, who watches your videos would recognize first that what you talk about is very interesting. But secondly, you are very interesting. So I think having a memoir that tells your story, I think that would be, that would be an interesting thing to read. I. I know. I'm going to. I'm going to pick up a copy. So glad you wrote that. So, given everything you've done and, you know, the journey that you've been on so far, I'm sure I could probably ask this question better after I read your book. But given all you've done and given where you are, where do you go from here? Do you have a sense of what's around the corner in terms of what you want to do in this topic in new ways? Different ways?

Penny Hawkins Smith (36:57)

Yeah. So like I said, I work in quality now. I work three days a week from home. I live in a cabin in the mountains, and I am a hospice quality assurance RN working from home three days a week. I have just officially submitted my retirement request for April 1st this year. I plan on continuing to make content as a social media content creator, but where my heart is is inpatient care. It's been a long time since I've been at the bed of the. At the bedside of the dying people. And I want to get back there. And I'm hoping to maybe buy summer, get a position as a per diem hospice nurse in my county. I live in a really rural area, a very big county that's sparsely populated. And there's only one hospice agency that serves this county in the state of Washington, where I'm at, you have to have a certificate of need to be able to open a hospice agency. And so far, there's only one hospice agency that has been willing to come to our county. They're three hours away. And so it's not, unfortunately not my organization. So I will have to go to a new organization if I want to do that. But that's always been. I wouldn't say always, but since I was a home hospice case manager in the Seattle area, and one of the things that drove me away from that into the quality position was the horrible traffic. The commute was terrible. And so I started thinking years ago, probably 10 years ago, that I would really love to be able to do visits in a rural area where you get to drive around in a scenic area instead of being stuck in traffic and seeing patients. So I think that's probably what's on the horizon for me, is just continuing to work in the field on a routine or not a routine, but as needed basis.

Ray Spadoni (38:59)

Well, that's. That's great. I. I wish you the best with your. With your book, with your continued work, with whatever happens with TikTok. And it sounds as though you're going to continue to do what you're doing, but if you're able to do the per diem hospice nursing work, that'll keep you grounded in the actual work, which is probably, probably important for the type of work that you do.

Penny Hawkins Smith (39:24)

Yeah, it is. I get a lot. People ask me what's my favorite part about being a hospice nurse? And my answer to that has always been educating. I love educating. I love normalizing it. And I still get to do that through TikTok. So that fulfill. Fulfills that for me. But I do. I miss that bedside element also. Keynote speeches, too. That's. That's something else that I'm now doing that is really exciting to me because I'm just. I'm really just passionate about talking about it. I just, I want to spread the word in every way that I can.

Ray Spadoni (40:00)

Well, the keynote speech is how I met you, and you were quite excellent at it. You had the audience quite captivated with your message and the way you delivered it, so certainly put in a little bit of a plug for you there. It was an excellent, excellent talk that you. You gave. If people are wanting to learn more about you, it sounds as though the best way to find you is on your website, which is where they can find your book and your podcast and the various places you can be found. Are there any other ways that folks can get in touch with you if they want to learn more talk talk with you, find out more about this this issue.

Penny Hawkins Smith (40:37)

Yeah so again hospice nursepenny.com is my website and they can find me on Instagram, Facebook, YouTube, TikTok if it's still still around RedNoteospice Nurse Penny and they can email me@hospicenursepennyoutlook.com Great.

Ray Spadoni (40:55)

Thank you so much Penny. Appreciate your time. This has been very interesting and wishing you the best in your work and with the personal mission that you have to demystify death and to help all of us come to grips with the fact that it's part of life.

Penny Hawkins Smith (41:13)

Thank you so much for having me on.

Ray Spadoni (41:16)

Thanks for listening. I hope you'll consider leaving a five star review on Apple Podcasts or your platform of choice that will help others find us here. My mission is to help empower organizations that matter by supporting those who lead them. Feel free to learn more about me and my work atredsale advisors.com.