Several hospice nurses have emerged as social media influencers and authors who aim to demystify death and dying for the general public.

Individually and collectively, these nurses have amassed millions of social media followers on platforms such as TikTok, Facebook, Instagram and YouTube. A number have also written books about their experiences as hospice nurses and the lessons they’ve learned about the end-of-life experience for many families.

Hospice nurse Penny Hawkins Smith, author of the book Influencing Death: Reframing Dying for Better Living, was among the first to venture online. She began exploring TikTok during the COVID-19 shutdown. Today, she has more than 4.2 million followers across four platforms.

Hawkins Smith went to nursing school at age 40 after years of being a stay-at-home mom and working in various jobs, such as bartending and food service. Her experience of seeing her now ex-husband’s stepmother die in hospice care led her to enter the field.

“I decided to tell a story about a hospice patient [on TikTok], and I’ve always been a very passionate advocate for hospice and educating and normalizing death and dying. It’s been a big part of my career to do that,” Hawkins Smith told Hospice News. “When I made that video, it got a huge response. It went viral. It got several hundreds of thousands of views, and I got like 10,000 new followers overnight. I just realized that this was a topic that people wanted to know more about.”

These nurse influencers frequently have a common goal — to educate patients and families about hospice care and what they can expect during the dying process, according to Julie McFadden, author of the New York Times bestseller Nothing to Fear: Demystifying Death to Live More Fully. McFadden currently has more than 3.5 million followers across all platforms.

“The most important [goal] is just decreasing fear around death and dying through education, dispelling myths about hospice and educating people about how hospice actually works, what they can actually expect,” McFadden told Hospice News.

McFadden entered the nursing profession about 17 years ago, starting her career in intensive care units. After about eight years in the ICU, she “took the leap” into hospice nursing. Her jump into social media-based education came almost “on a whim,” she said.

The seed was planted a few years ago when the parents of two of her close friends were nearing the end of life. McFadden tried to help by informing them of available care options, including hospice, and what they could expect going forward. Following this, her friends encouraged her to take her knowledge to a wider audience, be it through a podcast or other format.

She started by making five videos that were posted to TikTok. One of these went viral, a discussion of the work of Barbara Karnes, another hospice nurse turned author. Karnes has written a number of pamphlet-sized books on death and dying, including Gone From My Sight: The Dying Experience.

With that video, McFadden gained 10,000 followers overnight. Within a year, she had more than 1 million.

Hospice nurse, death doula and educator Suzanne O’Brien is also seeking to change the conversation about death and end-of-life care. O’Brien is the founder of the Doulagivers Institute, which provides education to families facing the end of life and trains professional death doulas.

O’Brien will soon publish a new book, The Good Death: A Guide for Supporting Your Loved One Through the End of Life, to help foster greater education for families facing a loved one’s terminal diagnosis.

“The first and foremost thing that I really want people to know is that I think we just forgot that death is not a medical experience,” O’Brien said. “It’s a human one. It can go really, really well with the right education, kindness and support.”

Meanwhile, hospice nurse Hadley Vlahos’ book, The In-Between: Unforgettable Encounters at Life’s Final Moments, spent seven weeks on the New York Times bestseller list. She entered the nursing field following the birth of her son while studying at Florida State University. She was 19-years-old at the time.

She soon “fell in love” with nursing after spending some time interning in labor and delivery, medical-surgical and emergency departments at a local hospital, she said at the Home Care 100 Conference in Florida. After taking a job as a nursing home supervisor, she found herself impressed with the hospice nurses who would enter the facility to care for patients, leading her to move into end-of-life care.

She rose to prominence on social media after making the difficult decision to send her newborn second child to stay with her mother during the COVID-19 pandemic. This enabled her to continue seeing patients without putting the child at risk of contracting the deadly virus. She posted a video on Facebook in which she spoke about that choice.

The video eventually landed on TikTok, where it also went viral. Within just a couple of hours, she had garnered more than 2 million followers, Vlahos said at the conference.

“I have millions of followers now just from sharing my stories as a bedside hospice nurse, and from there, I learned that I could still follow my dream of being an author,” Vlahos said at Home Care 100. “I got a book deal with being a Random House, and now my book has been translated into over 23 different languages and has sold close to a million copies. Despite all of that success, there is something that I have noticed with the general public, through social media comments and through the more general world — people don’t understand that there is so much life in end-of-life care.”