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What Are Death Doulas?

by Monica Lozano

When people say someone had “a good death,” they usually mean that someone was comfortable and not in pain. But what if you could help their final days include the things they treasure — like their favorite song playing, who is at their bedside, even the scent of a candle in the room — so they feel at peace.

That’s why some people turn to end-of-life doulas. They are among the professionals who can help someone prepare for their death and reflect on their life: their greatest joys and regrets, any fears or worries on their mind, and how they want to be remembered.

It’s work that many people don’t want to think about.

“We live in a death-denying culture,” says Elizabeth Johnson, executive director of the Peaceful Presence Project, a nonprofit end-of-life doula collective in Bend, OR. Doulas can be part of the team that helps prepare people for death by opening up conversations about it, as well as providing comfort and resources. Hospice care teams and other palliative care practitioners also work in these areas.

Doulas and Hospice

Hospice care often involves a team of people, such as a social worker, a chaplain, and a nurse who checks a patient’s vitals, administers medication, and changes bandages. Doulas, on the other hand, have no required medical background and do not perform any clinical or medical tasks. They may read aloud to a patient, clear clutter, or sing with someone.

“Doulas are able to step into those unsupported spaces,” Johnson says. Where a hospice social worker or chaplain may visit once a week, “Doulas have more time and bandwidth. They are available for deep listening during acute windows of need,” says Johnson, who is on the board of the National End-of-Life Doula Alliance (NEDA).

Doulas can assist patients outside of hospice, too. Merilynne Rush, RN, a doula in Ann Arbor, MI, and vice chair of the End-of-life Doula Advisory Council of NHPCO (formerly the National Hospice and Palliative Care Organization), recalls a client who was overwhelmed after taking her husband home from the hospital to die. Rush talked to her about palliative care, a social worker, hospice, and getting a hospital bed. “She didn’t have the first clue about any of that. No one in the hospital tells you,” says Rush, who is also a past president of NEDA.

Likewise, Cynthia Schauffler of central Oregon contacted Peaceful Presence about a friend with terminal cancer. “My friend asked me when she should call hospice and I didn’t have the wherewithal, resources, and contacts to help her.”

Doulas from the group began visiting her friend twice a week. The visits included reiki, art therapy, and conversation with a chaplain. They got her hospice care and talked to her family about what to expect.

No Typical Cases

You may hear end-of-life doulas referred to as a soul midwife, end-of-life coach, death midwife, transition guide, or death doula. Unlike hospice, the cost of a doula is not covered by Medicare.

Private insurers do not reimburse for doulas, either. But some doulas provide volunteer services through a hospice or nonprofit organization.

Doulas may charge an hourly rate, from $45 to $100, or on a sliding scale. Or you may be quoted a flat fee from $500 to $5,000. Costs will vary depending on the number of visits, location, whether the doula is staying overnight, or other service requests.

Similar to a birth doula, an end-of-life doula tailors services to each client. Beyond getting wills and advance directives in order, they encourage the dying to reflect on their life. Are there relationships they want to repair? Something they need to say or do before they are gone? Who do they want to see again before they die?

There is no such thing as a typical case when you’re a doula. “It’s all over the board,” says Rush, a former hospice nurse and midwife, too. It’s not unlike the old tradition of a neighbor, friend, or auntie coming into help, she says.

Doula visits can be daily, weekly, or span several years. They can assist with writing letters, doing laundry, planning a funeral, or creating a legacy. A legacy project might involve captioning photos, scrapbooking, or organizing recipes to pass on to family.

One of Johnson’s patients had an extensive record collection. She helped him write meaningful stories about his life that coincided with each album. She hung up the stories in his room for visitors to read and discuss with him.

Someone to Talk to and Cry With

Sometimes, the family needs practical or emotional support more than the person who’s dying does — especially if that person isn’t conscious or alert.

Joanna Harmon of Finksburg, MD, described her doula as “a formidable advocate” who helped her weather the stress and emotional strain when her dad was dying in 2019. The doula was trained by Gilchrist, a hospice in Maryland that has offered volunteer doulas to their clients since 2010.

“She sat with my dad for as long as 3 hours and held his hand so I could leave the room.” The doula also helped get her mind off “the inevitable” by asking about her childhood with her dad. “She was someone to talk to, to cry to, to let those things off your chest,” Harmon says.

Schauffler says that her friend’s doula dropped everything to be there for her friend’s final hours and kept in touch with her husband afterward. “It made a huge difference,” she says.

Where to Find a Doula

To find an end-of-life doula, inquire at local hospices that may work with doula volunteers. Or start with the state-by-state directory of doulas from the National End-of-life Doula Alliance.

These end-of-life doula training programs can also link you to people who completed their course work:

  • International End of Life Doula Association
  • The International Doulagivers Institute
  • The University of Vermont Larner College of Medicine
  • Lifespan Doula Association

If You Choose a Doula

Ask prospective doulas about their training, experience, and fees, and also about their availability and backup, advises Rush, who also trains doulas as owner of The Dying Year. Plus, see if they offer the services you want. Massage therapy? Meditation? Meal prep?

You may opt to hire an end-of-life doula who has completed training courses and received certification. But there is no license or credential required to practice. “There is no universally recognized local, regional, or federal authority, regulatory or accrediting body that holds liability or provides monitoring for end-of-life-doulas,” states the website of National End-of-Life Doula Alliance. “There are a growing number of organizations offering certification but it is voluntary.”

Get references and also consider whether they have the experience but not formal credentials. “The person may have a lot of experience and no certification so don’t rule that out,” Rush says.

Complete Article ↪HERE↩!

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After Widowhood Comes a Second Act with Purpose

What I learned after my husband’s death helped me build a business to help others handle their own myriad of tasks

Ronnie Genser and Sandy Weinberg on the final cruise they took together before his unexpected death

By Ronnie Genser

My unexpected journey to my “second act” began on September 20, 2011, the second day of Rosh Hashanah (Jewish New Year 2011) when my beloved husband Sandy (Sanford) Weinberg, age 61, had an unexpected massive heart attack around 11 pm.

Sandy was a health care management professor at the graduate level and a worldwide FDA Regulatory Affairs consultant, who also lectured and trained pharmaceutical companies around the world on how to get their new drugs through the U.S. regulatory process. He had just returned a few hours earlier from a speaking engagement to European pharmaceutical executives at one of his client companies in Cork, Ireland.

A week later after two operations when his doctors told me there was no more they could do, they asked me what I wanted to do. Fortunately, I knew what Sandy would have wanted because ten years previously we not only completed our Advance Directives for Health Care in our home state of Georgia, but we also discussed our end-of-life values and wishes.

Doing What Needed to Be Done

Based on these discussions, I asked his doctors if I could have 36 hours for the immediate family to arrive, then say their goodbyes, and recite the Vidui (Jewish confessional) prayer at his bedside. I also told the medical personal attending him that afterwards it would be time to turn off the life support machines keeping him alive. He died on October 8, 2011 – Yom Kippur (the Jewish Day of Atonement), just as Neilah (the Yom Kippur closing prayer) was beginning in the Eastern time zone.

My long-time financial advisor and friend told me, if what had happened to me should ever happen to her, she’d have me on ‘speed dial.’

About three months after my husband’s death, while speaking with my long-time financial advisor and friend, she told me if what had happened to me should ever happen to her, she’d have me ‘on speed dial.’ This was because not only was her husband one of her employees, but also because I had shared with her many of the challenges and tasks I initially faced after my husband’s unexpected death. She also said she could not both run her business and do all the things that needed to be done.

I thanked her for the vote of confidence, but politely told her I did not have the time or personal bandwidth to start a new business. Not only was I attending to all the ‘after a death’ tasks (i.e., ‘the stuff’) I needed to do, but I was also running my 20-year-old business, Genser International Consulting, a sole proprietor international sales and marketing consulting company, focused on helping U.S. companies find export markets for their products, and overseas firms find new or additional U.S. markets.

Preparing to Start My New Business

Five months later, I had dinner with another long-time friend who had been in international finance for many years and had left that career to become a financial advisor. She immediately said I needed to speak to the Financial Planning Association of Georgia (FPA of GA) of which she was a member. Ten days after we spoke, she called to tell me I would be their monthly speaker in two months.

A man wearing a button up shirt and tie smiling. Next Avenue, bereavement, grief, widow
Sandy Weinberg

Great reviews after my speech led me to really think about starting a new business, which I did. However, it took me a couple of years to figure out what services I would offer, and more importantly how to verbalize them in a way potential clients could easily understand.

Because I didn’t know anyone who was doing what I wanted to do, there appeared to be a market opportunity for this type of service, especially as the boomers began to age.

I named my business “Bereavement Navigators”, not a great name for what I do, but after (1) my two friends and I spent a lot of time searching for words to name my business, (2) my FPA of Georgia speech date was looming on the horizon, and (3) I wanted to at least have business cards and a business license prior to my speech, even if I didn’t yet have clients, we settled on this name.

Complete Article ↪HERE↩!

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How should I talk to children about death?

Be brief but honest – and answer their questions

‘Young children in particular need reassurance that their life will go on no matter what happens.’

It’s important to give kids time to process information – and reassure them they’re safe and cared for

By

When Rechelle Leahy’s husband Allistair was diagnosed with stage-four colon cancer in 2013, they faced a difficult decision: when, and how, they would tell their two children – aged just six and four – about his impending death.

It’s a situation no one wants to find themselves in but, given the inevitability of death (and with one in 20 Australian children losing a parent before the age of 18), it’s a topic we ought to be prepared to tackle.

So how to do it?

According to the paediatric psychologist Deirdre Brandner, parents of young children can start this discussion with a focus on small creatures or plants, giving children the basic understanding that “living things die”.

“The death of pets, whether they are ours or others’, can be a helpful way to introduce this topic,” she says. “Talking about how we felt when a pet or someone we loved died will allow children to better understand the grief process.”

She says while children under five will struggle to understand that death is irreversible and universal, it’s still important that they’re told when someone they know has died, though parents might consider the amount of information shared.

“Keep explanations brief but honest,” she advises. “Young children tend to ask more direct questions and often ask the same questions over and over again because they are trying to process this event. Sometimes we want to avoid discussing death with children because we are worried or fearful about how they will cope, [but] talking to children about death will allow them to feel more secure and supported.”

Matthew Kwoka of Southern Cross Funerals, who runs a video series called Death Defined that aims to break the stigma around the “death conversation”, says children often gain an understanding of death when bearing witness to someone’s declining health during a terminal illness, but sudden or tragic deaths can be more traumatic.

“[The] immediate departure of a parent … is a totally different kind of grief,” he explains. “The shock factor is more traumatic for all involved and is a far more difficult situation to explain to a child.”

In such cases, Brandner suggests planning your talk first (running it by a friend can be helpful), speaking openly in language children will understand, using words like died or dead over “went to sleep” or “passed away”, which create confusion and do not help the grieving process.

“Tell children the truth and do so as soon as you can,” she advises. “Be calm and set the emotional tone. Carefully watch for your child’s reaction and follow their lead. Reassure them that they are safe and cared for. Don’t overwhelm them with too much information at the beginning but be there to answer questions in the coming days.”

While their responses will depend on their age and developmental stage, Brandner says it’s important to give children time to process the information, to validate their feelings, and to remember that there’s also “much variability in how any of us grieve”.

She suggests rituals, experiences and routines as a way to help the process. This could include creating memory books or slideshows to remember the person, along with planting their favourite flower or making their favourite meal, or lighting a candle. She also suggests sticking to children’s regular routine where possible, to bring a sense of normalcy to their days.

“Young children in particular need reassurance that their life will go on no matter what happens,” she says. “Some children will not display any adverse reactions, but others may exhibit increases in irritability, anxiety, clinginess or anger outbursts.

“There can be changes in appetite, losing themselves in screens or retreating to their rooms. We do need to provide comfort and flexibility in supporting children during this time. However, children respond and are best supported by routine and consistency. It makes them feel secure that their world is still the same.”

Leahy says her boys were understandably sad after their father’s death. They’d ask questions about whether Allistair could see them, if he was missing them and what he would do now that he wasn’t there in person any more. As a family they’ve been open about their feelings since Allistair’s death: celebrating his birthday with cake and his favourite movies, and releasing balloons on the anniversary of his death with notes attached, telling him what they have been up to.

“The conversation [about his death] was the hardest we had as a family,” Leahy says. “It was devastating to know that the loss of the boys’ dad would leave such a big gap in their lives, but it was also a way to show the boys that it was OK to have complicated emotions, to show them that adults get sad too.”

After losing her mother, grandmother and husband in 10 years, Leahy launched iDecide, a platform with “bank-level” security that allows users to plan and store crucial information for loved ones in case of their death. She says being open and honest helped alleviate her children’s anxiety at an incredibly tough time.

“We need to include our families in this conversation,” she says. “It empowered Allistair to manage the narrative around his own death and [helped] the boys understand that when he died it was not him abandoning them, but that death is part of the lifecycle and he would still be with them every day because he is part of them.”

Complete Article ↪HERE↩!

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9 Death Positive Books for Newbies to the Movement

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American culture, as a whole, has a lot of Puritanical holdovers, especially around death. We just don’t like to talk about it, or when we do, it gets classified as morbid — an unhealthy interest. Despite death being a natural part of life, we keep it separate from everything else and fear it. We don’t talk about what we want to happen after we shuffle off this mortal coil until the curtain is just about to close on our final act of life, to the point where if someone dies unexpectedly, it’s up to their family to guess what they want done, and try not to get sucked into the whims of the funerary business. There’s a lot of options out there beyond just cremation or casket burial, not that there’s anything wrong with them if that is your choice (beyond the ecological ramifications). But that’s where the death positive movement and death positive books come in.

So what is the death positive movement? Built upon death centered movements reaching back as far as the 1970s, this modern iteration is focused on removing the fear around death. It aims to show that it’s not morbid to talk about death in “polite society,” but in fact is part of living in a healthy society. The movement works to educate others on their options around death, fights to ensure that people have a right to choose how they die, and that they have access to those choices. Being death positive doesn’t mean that you are happy when someone dies, it just means you’re more willing to discuss your grief and experiences around death. Death isn’t something to be sequestered away in some basement mortuary or behind closed doors at a funeral home. To help guide you into that frame of mind, I (a thanatologist) have some recommendations to welcome you into the death positive movement.

from here to eternity cover

From Here to Eternity by Caitlin Doughty

It couldn’t be a list of death positive books if I didn’t include at least one book by Caitlin Doughty. She could make up most of a list by herself, honestly. She’s one of the founding members of The Order of the Good Death, one of the current driving forces in the death positive movement. She’s also the individual behind the Ask a Mortician videos. In From Here to Eternity, Doughty travels the globe, researching different death traditions from Mexico’s Dia de los Muertos to the Tana Torajas’s death involved lives. She poses the question of just what is a good death, and is the way Americans approach death really the best? Can’t we do better? If you’re brand new to the movement, this is the book you want to start your journey.

 

Being Mortal cover

Being Mortal by Atul Gawande

Did you know that we are currently outliving our bodies and are butting up against the natural lifespan of humans? We have made so many advances in medicine that our bodies cannot keep up and we are medically prolonging our lives. Now, this isn’t necessarily a bad thing, but in some cases, this does mean that suffering may be prolonged as well, and that is exactly what Atul Gawande discusses here. He argues that we should be able to choose how we die, and be able to die on our own terms. He also holds nothing back, letting you know exactly what will happen to your body as you age and after you die. It can be kinda gross. You’ll learn what hospice and assisted living is like too, with first hand accounts from both the elderly and the staff. This is a must read for everyone.

Stiff cover

Stiff by Mary Roach

So you’ve died, got through this thing called life, and had your affairs in order so your family knew what you wanted in death and got the ball rolling, so to speak. You’re officially a cadaver. What’s next? Mary Roach has the answer for you. And not just answers from modern day autopsies and medical discussions: you’ll learn about cadavers that have changed the course of history, different death rituals across time and cultures, what donating your body to science really means, and other various stories about humans after death. It can get a little gross, but there are too many jokes to laugh at to get too skeeved out.

cry, heart, but never break book cover

Cry, Heart, But Never Break by Glenn Ringtved and Charlotte Pardi, Translated by Robert Moulthrop

Death is a difficult topic to broach with children, whether it’s in preparation for a funeral of a loved one, or explaining why their beloved fish is swimming upside down. This book is a good place to start. It focuses on four siblings who live with their grandmother, who is slowly declining. The four of them come up with a plan to stall Death when he comes for her, and he does, inevitably, as he does for us all. But he takes the time to tell a story, a story that helps them understand the connection between life and death, joy and grief. Death is a complicated subject to teach, but this picture book handles it magnificently, teaching how to say goodbye in a way that is heartfelt and only a little bit tear-jerking.

death and the idea of mexico book cover

Death and the Idea of Mexico by Claudio Lomnitz

While this, admittedly, leans more towards a more academic-type of text, it’s still deeply important to read, especially with a conversation centered on death. This book is the first look into the social, cultural, and political history of death within a country, extending all the way back to the sixteenth century. Death is an important part of Mexican identity, and Lomnitz demonstrates that expertly, laying out clearly the death practices of the pre-Columbian age, how colonization and imperialism affected the culture (especially in regards to Catholic diaspora) and even touches upon the new religious movement around Nuestra Señora de la Santa Muerte, more colloquially known as Santa Muerte.

ghosts and the japanese book cover

Ghosts and the Japanese: Cultural Experience in Japanese Death Legends by Michko Iwasaka and Barre Toelken

Learning about how a culture thinks often requires looking at the stories it tells itself. Seeing how a culture views death is no different, nor is reading cultural ghost stories. This book catalogs some of the more recognizable ghost legends from Japan. It also looks at their place within Japanese culture as a whole, and the varied views of death within the country, especially those rooted in pre-Buddhist beliefs. This is another scholarly level of work, but is still accessible to those willing to pick it up, and it’s a short book as well, only about 162 pages.

grave injustice book cover

Grave Injustice by Kathleen S. Fine-Dare

One cannot talk about death, both the study of and the laws that essentially regulate the management of it, without acknowledging the repatriation efforts focused on Indigenous remains. This book lays out the constant struggle of Native Americans to reclaim remains of family members that were appropriated and sold to collectors or museums by colonists. It traces the histories of laws surrounding the subject, as well as the cultural reasons for both sides of the fight, before finally culminating in the fight that brought about NAGPRA: the Native American Graves Protection and Repatriation Act.

with the end in mind book cover

With the End in Mind by Kathryn Mannix

Written by a doctor who practiced palliative care for 30 years, this book is a meditation on how to greet death gently, with eyes wide open, rather than ignoring what is coming. Told through case studies of patients, Dr. Mannix argues that having clarity around what will happen before, during, and after death is therapeutic, and we shouldn’t forestall death simply due to the terror of it. We must find the line between what is enhancing life versus extending suffering out of fear.

passed on book cover

Passed On: African American Mourning Stories: A Memorial by Karla F.C. Holloway

There are few communities in the United States that have as close a relationship with death as the Black community. Not just a close relationship, but a complicated one. From wrongful deaths and executions to malpractice at the hands of those in the death-care industry, death is an important facet of Black identity. Using interviews, archival research, and analyses of literature, film, and music, Karla F.C. Holloway investigates the myths, rituals, politics, and history of Black death practices. It gets heavy at times, even for a book about death, covering lynchings and medical malpractice and neighborhood violence and plots full of unmarked graves, even the story of her son’s death and how it drove her to the subject of death. But nonetheless, it’s an important read, especially considering the bones the United States has been built upon.

Complete Article ↪HERE↩!

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13 Scientific Findings About Death And Dying

Call us morbid, but death is inevitable so we want to read up on as much as we can before it eventually comes for us.

By

The only creature that is ‘biologically immortal’ is a jellyfish

The only creature that is biologically immortal' is a jellyfish The jellyfish Turritopsis dohrnii can switch between life stages in response to stress. Even though it can be killed, it could theoretically live forever. CRACKED.COM
Source: Australian Academy of Science

Humans are biased towards believing they are eternal

Humans are biased towards believing they are eternal Researchers asked children from different cultures about prelife, the time before they were born.. Children gave similar answers of a belief in eternal life, regardless of different cultural beliefs. CRACKED.COM

Source: ScienceDaily

Rigor mortis only lasts for a few days

Rigor mortis only lasts for a few days The stiffening of the muscles occurs between 2 to 6 hours after death, but only lasts between 24 to 84 hours, when the muscles will relax again. CRACKED.COM

Source: ScienceDirect

Being disgusted by the smell of death is important to survival

Being disgusted by the smell of death is important to survival The chemical putrescine (created when fatty acids break down) helps to create that foul odor, which encourages animals (including humans) to avoid or leave the area. This response is 420 million years old. CRACKED.COM

Source: Frontiers

 
 

Hair and nails don’t grow after death

Hair and nails don't grow after death Our skin and nail beds actually dry out and retract, making the hair and nails appear longer. CRACKED.COM
Source: BBC

There are 350 corpses stored in liquid nitrogen

There are 350 corpses stored in liquid nitrogen There are 300 cryogenically frozen individuals in the US, in the hope that one-day science will be able to revive them, but neuroscientists don't believe liquid nitrogen can preserve the complex brain. CRACKED.COM

Source: The Guardian

 

It’s a mystery why reduced oxygen makes us feel less pain rather than increased anxiety

It's a mystery why reduced oxygen makes us feel less pain rather than increased anxiety In near-death experiences, our brains continue to operate to create a positive and blissful experience as opposed to a panic-inducing one. CRACKED.COM

Source: Scientific American

People can actually be “scared to death”

People can actually be scared to death Being scared to death isn't just a saying... there's an actual link between extreme psychological stress and fatal heart attacks. CRACKED.COM

Source: ScienceDaily

Sorry, we can’t cheat death or aging

Sorry, we can't cheat death or aging Population biology suggests every species has a relatively fixed rate of aging. The historic increase of lifespan average is mostly due to reducing death among infants and children. CRACKED.COM

Source: ScienceDaily

 

Thinking about death leads to positive changes

Thinking about death leads to positive changes Scientific studies suggest that thinking about death helps us reprioritize our goals and values and improve physical health, even non-consciously. CRACKED.COM

Source: ScienceDaily

Some brain cells increase activity after death

Some cells in the brain increase activity after death Researchers analyzed fresh brain tissue, discovering that cells whose job is to 'clean up after brain injuries' grow after death. CRACKED.COM

Source: ScienceDirect

 

Life may actually flash before our eyes

Life may actually flash before our eyes A new study showed that in the 30 seconds before death, brainwaves followed the same patterns as dreaming or remembering. CRACKED.COM

Source: BBC

Complete Article↪HERE↩!

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First ever recording of moment someone dies reveals what our last thoughts may be

Does your life really flash before your eyes when you die?

By

What happens when we die?

Scientists may finally be in a position to answer that question after they recorded the brain waves of a patient as her life ended.

Crucially, they didn’t set out to capture this data – instead it ocurred by happenstance.

Researchers in the United States were running an electroencephalogram (EEG) on an 87-year-old man who suffered from epilepsy.

An EEG measures the electrical activity of your brain and, in this case, was being used to detect the onset of seizures.

However, during the treatment, the patient had a heart attack and died.

As such, the scientists were able to record 15 minutes of brain activity around his death. And what they found was extremely interesting.

Focusing on the 30 seconds either side of the moment the patient’s heart stopped beating, they detected an increase in brain waves known as gamma oscillations.

These waves are also involved in activities such as meditation, memory retrieval and dreaming.

We can’t say for sure whether dying people really do see their life flash before their eyes, but this particualar study seems to support the idea.

And the scientists say the brain is capable of co-ordinated activity for a short period even after the blood stops flowing through it.

‘Through generating oscillations involved in memory retrieval, the brain may be playing a last recall of important life events just before we die, similar to the ones reported in near-death experiences,’ said Dr. Ajmal Zemmar, lead author of the study, which was published in the journal Frontiers in Ageing Neuroscience.

‘These findings challenge our understanding of when exactly life ends and generate important subsequent questions, such as those related to the timing of organ donation.’

In the study, the researchers point out that similar changes in brainwaves have been detected in rats at the time of death.

However, this is the first time it’s been seen in a human.

Dr. Zemmar and his team say that further research needs to be done before drawing any definite conclusions.

This study arises from data relating to just a single case study. And the patient’s brain had already been injured and was showing unusual activity related to epilepsy.

It’s not clear if the same results would occur in a different person’s brain at the time of death.

‘Something we may learn from this research is: although our loved ones have their eyes closed and are ready to leave us to rest, their brains may be replaying some of the nicest moments they experienced in their lives,’ Dr. Zemmar said.

Complete Article ↪HERE↩!

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Death Is No Laughing Matter.

But on DeathTok It Is.

Americans struggle with talking about death. To remedy that, some hospice nurses have taken to TikTok to soothe people’s qualms with macabre humor.

An unlikely group of influencers on TikTok is using cheeky skits and viral songs to change our relationship to mortality.

By Jessica Lucas

Casual TikTok viewers might think of the app as just a feed of Gen Zers doing viral dances and lip-synch reenactments. But the social network has also provided a space for some unlikely influencers: hospice workers, morticians, and funeral directors. These content creators hope that their comedic takes on mortality will help people who find death hard to discuss, especially during the pandemic, in which more than 900,000 Americans have died. DeathTok, as it’s called, is a corner of the platform where skits about end-of-life care, funeral arrangements, and death-worker mishaps bring comfort to those suffering through grief and loss, and clarity to those who are curious about an oft-avoided topic.

Our inability to plainly discuss death and its circumstances stems, in part, from the American ethos of self-reliance, according to Cole Imperi, a well-known author and speaker on the subject of death and thanatology. “We value the story of somebody coming to the U.S with $5 in their pocket and they make it … needing nobody,” she told me over Zoom. The end of life, Imperi explained, sits in direct opposition to this philosophy: As people age and approach death, they rely on others for help. The fear of lost autonomy (be it one’s own or a relative’s) makes planning for, grieving, and processing death hard for many Americans. “We don’t have a lot of practice with knowing how to talk about something that’s painful, scary, or difficult all the way through,” Imperi said. She believes that the humor DeathTok offers can be a useful tool for pushing through this discomfort. “Having humor is critically important when it comes to death and dying,” she said. “Humor is necessary. Humor helps us heal.”

Although some find death-based comedy unpalatable, many TikTok viewers agree with Imperi’s estimation that the levity of a well-placed joke can sometimes make difficult situations easier. When I spoke with Penny Hawkins, a 59-year-old hospice quality-control manager from Washington, she explained how she uses comedy to educate others. “If you’re talking about a really heavy subject like death and you’re able to put kind of a funny spin on it, it makes it a little more palatable. It’s not quite so scary,” said Hawkins, who has more than 300,000 followers on her nurse_penny TikTok account. She encourages viewers to be curious about human anatomy by explaining what happens to failing bodies. For example, to tackle the misconception that hospice patients need to stay hydrated, Hawkins danced to the viral song “Just Water,” by the TikTokers Bryansanon and Tisakorean. To caption her video, she wrote: “If your dying person isn’t taking fluids, that’s ok. Their body is shutting down and doesn’t need it.” The chorus, which repeats the line “It’s just water!,” serves as a whimsical background to Hawkins’s blunt explanation.

Three scrolling tik tok feeds with a hospital gurney and ekg machine in background.

Hawkins has also used macabre comedy to illuminate the realities of hospice care. In one video, about the use of morphine at the end of life, an exasperated Hawkins appeals to the camera and feigns anger at a family who wants to withhold morphine from a dying loved one out of fear that they’ll become addicted. “They’re suffering and they’re dying,” Hawkins’s caption reads. “Addiction is the least of their worries.” Hawkins told me hospice patients aren’t typically at risk of developing an addiction, because many of them are not in end-of-life care long enough to become addicted (for instance, the median length of stay for Medicare recipients in hospice is about 18 days). As uncomfortable and dark as the video may be, it underscores Hawkins’s overall message that learning more about dying bodies and end-of-life care can only help.

Beyond the medical aspects of death and dying, some videos also warn people about one of the largest hurdles after a loved one’s passing: logistics. Lauren Taylor, a 28-year-old former funeral director who lives in Florida, shares farcical family stories on TikTok—such as a quarrel between a mistress and a wife over the burial of a shared lover—to make the point that planning is key. “Being preplanned, having everything written down ahead of time, and letting others know what your wishes are is so important,” she told me over the phone. Taylor, who asked to use her maiden name to protect her family’s privacy, has more than 400,000 followers on her account, @lovee.miss.lauren, and said she has witnessed how traumatic unplanned funerals can be for families and wants to inspire forethought. “These comedic situations where you kind of wonder, Is this real? It happens more often than people think,” she said. “It can be comical to talk about after the fact, but when you’re living in the moment, it’s the most stressful thing ever.”

While DeathTok has been a useful tool for families navigating their relatives’ mortality, it’s also helped death workers themselves cope with the demands of their job. Julie McFadden, a 39-year-old hospice nurse in California, told me that of her close-to-700,000 followers, her fellow medics are the loudest voices in her comments section. “Any of my videos that are more dark, that could be slightly offensive to some, I’m always 100 percent supported by nurses,” she said. In one video, she recounts the time she noticed that a patient was dead even though the rest of their family did not (set to the audio of a person screaming “Don’t worry!” in a panicked tone). The clip spurred other nurses to share similar stories, and one thanked her for her “positive outlook” on such difficult situations. McFadden told me that though nurses are taught how to care for and save patients, many aren’t coached on how to handle death psychologically. “As a community, it’s nice to come together and make light of the things we know are messed up,” she said. “What else are we going to do if we don’t laugh about it?”

When death workers make these short, funny videos, they provide more than just comfort to their colleagues or the bereaved. Their TikToks can be soothing even for patients dealing with a terminal diagnosis. Val Currie, a 32-year-old undergoing treatment for Stage 3 recurrent metastatic cancer, told me that DeathTok provides a much-needed release, and has helped her have discussions with her partner about end-of-life care. “I’m learning to laugh at the process,” she said. If viewers can laugh at death, then they can talk about it. And if they can talk about it, healing may not be too far behind.

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