Media Moguls: How a pair of hospice nurses TikTok'd into advocacy activists
By Alison Ramsey
IAHPC Pallinews Editor
Hospice nurse Penny. Photo used with permission.
Penny Smith came to nursing late in life, choosing this "meaningful, important" work as a kind of redemption for addiction problems in her youth. After years in family practice, she switched to hospice care. "My ex-husband's stepmom died of cancer in hospice. I was so impressed with her treatment." Her unmanaged pain was brought under control enough to return home for a time.
Julie McFadden was an ICU nurse before turning to hospice. "There are certain times when I feel that preserving life at all costs is doing a disservice to people with their families."
Though the women have significant differences—one is 63 and lives off the grid in a cabin in Washington State, the other is 41 and lives in Los Angeles—in the past few years they have both become palliative care social media stars.
Today, they earn enough on social media to have reduced their traditional jobs to three days a week.
Hospice nurse Julie. Photo used with permission.
The power of a single post
Neither of them began with a future goal in mind.
Julie's first post, done on a whim, was thanks to teenage nieces who introduced her to TikTok. "I talked about the Barbara Karnes little blue book, Gone From My Sight, on what to expect at the end of life. It went viral! To be honest, it wasn't a very good video: the lighting was bad."
Penny's first hospice-related post was equally unplanned, and equally popular. She did a few fun ones—like her attempt to shuffle dance—before posting a story about one of her patients.
"One evening the last visitor, a nun, told me, 'She's done.' I stood up with my stethoscope, when she added, 'No, she's not dead, but her spirit has left her. Her body has begun the work of dying.' I hadn't seen someone dying before. When I walked in, I saw her death stare: the lights were on but nobody was home."
They have each posted thousands of times on a wealth of topics related to death and dying: as many as three times a day for the first couple of years. They now have a combined reach just shy of 5 million followers (see the breakdown in the box).
The need is clear
While public reluctance to talk about death is the norm, individuals are clearly seeking information from knowledgeable, reliable sources. It surely helps that these nurses' videos are also often highly entertaining.
"I think that people are fascinated by death and dying. We took it out of the home and tucked it in hospital. Then, with Covid-19, people were dying left and right," says Penny. "There is a lot of fear. I had death anxiety but found, through my work, it was alleviated. Many, many, many people say that through watching the videos, they are no longer worried about death. I bring levity to the topic, and a lot of dark humor, which resonates with people."
Julie stresses that "we really need to start having end-of-life conversations: start talking sooner and be more up front. I think people would make different decisions." Her focus this coming year, after her book Nothing to Fear: Demystifying Death to Live More Fully is released this month, is on educating herself by attending conferences. That will undoubtedly lead to a fresh flurry of topical posts.
While she thought, at first, that she'd never run out of ideas, two years after starting, Julie found that she was repeating the same messages. But there is a never-ending cohort of people newly facing death—their own or that of a loved one—who are eager for help, information, and greater understanding.
Check out their videos on your favorite social media site: Penny at Hospicenursepenny, Julie at hospicenursejulie.
So You Want to Start on Social Media?
Must-haves:
-A topic that interests you, that you enjoy talking about.
-A desire to share your experiences and educate others.
-Being comfortable in front of a camera.
-The ability to let haters' comments slide off.
What you don't need, when starting:
-A plan
-Experience
-Technical skills
Advice:
-Keep it light and fun (even if the topic is death).
-Don't push hard to achieve "views." Remember your priorities.
-Block people who spread misinformation.
-For non-English speakers: do it in your own language.
-Speak to your population. (The topic of hospice care in any country is best addressed by those who live there.)
Penny and Julie rate social media platforms:
TikTok: "It's the place where trends start. You can gain a lot of followers." "It's the most fickle platform. Sometimes a video gets a million views, sometimes 2,000. It has a built-in algorithm that no one understands."
# of followers: 808K (Hospicenursepenny); 1.5 million (Hospicenursejulie)
YouTube: "It's the best platform for long-form videos." "It's how information is received" (as opposed to opinions).
# of subscribers: 255K; 426K
Facebook: "It's the meanest place." "I get some haters, but most people are very nice. It's where I get the most opinions."
# of followers: 493K; 777K
Instagram: "Everyone there is really nice. I get the most consistent views there." "It's user-friendly, good for stories. It's more engaging than some others."
# of followers: 352K; 353K
Read more of this week's issue of Pallinews
The Africa Palliative Care Association shares successful steps it uses to move palliative care forward
An interview with Executive Director Emmanuel Luyirika.
Plus Heads up for "Palliative Care in Persons with Brain Tumors" on June 27. Lecture given by Dr. Jessica Besbris, director of neuropalliative care at Cedars-Sinai Medical Center, USA, plus discussion with Sarah Gibson, a person with brain tumor. Third module of the Palliative Care in Neurological Conditions course. Free for IAHPC members. Join / Renew your IAHPC membership!
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