Ever since my mother’s death I have found myself searching. Searching for missing pieces of her life that I didn’t know about, for pieces of paper with her handwriting, for faces in photos who might give me a clue as to what might complete her for me. I have also found myself deep in her work on Palliative Care. Not just as a way to understand her, but as a way to complete this circle of life.
My mother’s mission was to bring awareness about death and dying to people outside the medical world as well as to those inside the medical field who need reminding that we all do reach an end.
Because as we removed death from the lifecycle – note our stress on ‘life’ – we have become unaware, and therefore fearful, and silent. There are, of course, chat rooms, websites and podcasts dedicated to death and dying, but the people who turn to these resources in general tend to be part of that conversation already. What about people who aren’t aware there is a conversation to be had? The great majority of people who don’t know that knowledge about death and dying will at some point prove useful to them?
Here, it seems to me, social media can be useful, an instrument that so often delivers information we may not have known we were seeking. Sure, it can be a refuge for cat videos, or a viral hit where 5.3 million people watch a video of – a couple drinking coffee? But its seemingly random format can also be an opportunity, as when I stumbled across the TikTok account @HospiceNursePenny. Penny’s videos are often funny and definitely strange. She sometimes wears scrubs, but also costumes. She dances, sings and lip-syncs. She is provocative and unlike anything I’ve seen in the field. I immediately reached out to her and this was our conversation.
Elle Flanders (EF): As a slightly younger older person, or maybe I’m an older younger person, I was very excited to see all the things that are happening on social media around death and dying. And then you popped up as a whole other phenomenon. A star, the queen of TikTok death talk! Some of your videos have gone viral. Can you tell us what you do exactly and why?
Hospice Nurse Penny (HNP): My name is Penny, and I am a Certified Hospice and Palliative Care Nurse in Seattle, WA. I’ve been a hospice nurse for 17 years in a variety of different roles within hospice. On social media, I’m trying to help to remove the stigma around hospice, to get a conversation going about death and dying so as to normalize it, because I know that if you can get to a place of acceptance, you will have a better death.
I’ve seen a lot of trauma around death, not only for the person who is dying, but for the family who is experiencing that journey with them. And most of the time, it’s because they don’t know what to expect. If you see something happening to your dying person, and you no one has ever told you that it’s normal, that can be very scary.
I also wanted to help people overcome their death anxiety more generally, because I suffered from death anxiety when I was in my thirties.
EF: Were you afraid of dying, or were you just afraid you were going to die badly?
HNP: It was more like ‘What if I die and there’s nothing else? Like, what if there’s just nothing?’ I didn’t think a lot about the actual process of dying, I just worried about what would happen after I died. Based on my experience, and hearing from people who reach out to me through social media, death anxiety is really just another way of saying a lack of acceptance, and a lack of knowledge about death and dying, because we fear the unknown.
And because death is such a taboo topic, our brain can take us to all kinds of places, and that creates anxiety. Getting the conversation going has certainly alleviated that anxiety for me, and I’ve found that it also has for others. I get constant messages saying ‘I used to be afraid of death, and I started watching your videos, and I’m not afraid anymore.’ And that’s the way forward.
EF: How did your foray into social media start? After all, you’re not seventeen, or even thirty-five. I believe you said you were a boomer?
HNP: Yes, I’m going to be sixty in September!
It all started with the pandemic. I was in a lockdown when I heard about Dr. Nicole Baldwin, who had made national news because she was getting death threats after posting a pro-vax video on TikTok. So I downloaded the app to check her out.
I’d never even heard of TikTok before, but I found it was full of people shuffle-dancing, which I thought looked really cool. So I kept watching TikTok because I wanted to learn how to shuffle dance! I used to be in community theatre when I was younger, and I sang in a rock band. So I thought, ‘Oh, these look really fun. I like to dance.’ I posted a few videos that were just silly, fun TikToks, but then I start to see more educational posts and I thought, well, I have a really great story about being a hospice nurse. So I made one about that, and it went viral. I realized there was a need for this, people are interested in hearing about death and dying. And plus, when you’re a hospice worker, you know, dark humour is our go-to for coping; I have always been into comedy and making people laugh.
EF: I realize you have almost a million people who follow you regularly, but then there are people like me who just come across your content randomly, like the Public Service Announcements that were on TV when I was a kid in the 1970s. I found this incredibly exciting, an opportunity to reach people who might not even know they were looking for this. But your videos are also a bit cheeky sometimes. What’s the response like?
HNP: When I look at my analytics, there’s a variety of age ranges, from thirteen all the way up: men, women, nurses, doctors, people who are dying, people who know someone who’s dying, people who had somebody who died — I’ve got followers from every category. And so, to your point, depending on the day that you see my video, you’re going to get a different type of PSA, because I’m big on adult learning. I know people learn in different ways, so I do TikTok trends: I do dancing to educate; I answer questions; I do story time. Just like I have a range of people, I have a range of ways of reaching them.
As for the dark humour, I actually haven’t had negative feedback from any hospice or palliative care doctors, although every now and then somebody makes a comment, criticizing my hospice education because they know what my liberal political views are.
EF: Wow. OK. Good to know the troll factory doesn’t discriminate. Well, will you describe one of your TikTok videos?
HNP: There’s one I did quite a while ago that went viral. The song goes, ‘it’s just water, it’s just water’, and I’m just dancing around to the song lip-syncing while the words on the screen say that a dying person doesn’t need fluids, their body is shutting down, they aren’t going to die from dehydration but from their disease. And that one went pretty viral. Someone reached out to me and said, ‘You know, that for all these years I thought that I caused my loved one’s death because I wasn’t giving them anything to drink.’ You can keep saying it, but until people are ready to hear they won’t hear. Having these different styles of education is going to work differently for different people at different times. And this confirmed what I believe to be true: even though it’s just lip-syncing and dancing around, it helped that person at that time. At the right moment, in the way that they need, even silly videos can be helpful.
EF: I see a lot of your posts, you’re very creative, but it looks like it takes a lot of work. How do you manage to work as a hospice nurse too?
HNP: Well I don’t do patient care anymore. I did it for eleven years and I was ready to move on to other parts of hospice to learn more. I’ve been a case manager and now I work in quality control but yeah, it’s hard. It’s a second job. I’m starting to get brand deals now and actually earning some money, and I had to tell my boss I was going to have to cut back on my hours. Fortunately, my position became virtual, so I can work from home. And I do have a schedule that I can flex. I get up early and work on social media before I start work, and then when I get off work, and on the weekend, I make videos.
EF: Do you miss physically caring for patients?
HNP: There was a period of time where I really was missing that connection. In fact, my death anxiety actually started to return, and I felt like it was because I was no longer connected to death. But when I got on TikTok and started reaching out, I felt like now, even though I don’t do patient care, I’m still doing patient care: I’m taking care of people and their families through the education that I provide.
This interview has been edited for clarity and length
This article is reprinted with permission of Palliative Care McGill and the McGill Council on Palliative Care from their newsletter, Palliative Care in Action, 2022
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