What People Actually Say Before They Die

Insights into the little-studied realm of last words

By

Mort Felix liked to say that his name, when read as two Latin words, meant “happy death.” When he was sick with the flu, he used to jokingly remind his wife, Susan, that he wanted Beethoven’s “Ode to Joy” played at his deathbed. But when his life’s end arrived at the age of 77, he lay in his study in his Berkeley, California, home, his body besieged by cancer and his consciousness cradled in morphine, uninterested in music and refusing food as he dwindled away over three weeks in 2012. “Enough,” he told Susan. “Thank you, and I love you, and enough.” When she came downstairs the next morning, she found Felix dead.

During those three weeks, Felix had talked. He was a clinical psychologist who had also spent a lifetime writing poetry, and though his end-of-life speech often didn’t make sense, it seemed to draw from his attention to language. “There’s so much so in sorrow,” he said at one point. “Let me down from here,” he said at another. “I’ve lost my modality.” To the surprise of his family members, the lifelong atheist also began hallucinating angels and complaining about the crowded room—even though no one was there.

Felix’s 53-year-old daughter, Lisa Smartt, kept track of his utterances, writing them down as she sat at his bedside in those final days. Smartt majored in linguistics at UC Berkeley in the 1980s and built a career teaching adults to read and write. Transcribing Felix’s ramblings was a sort of coping mechanism for her, she says. Something of a poet herself (as a child, she sold poems, three for a penny, like other children sold lemonade), she appreciated his unmoored syntax and surreal imagery. Smartt also wondered whether her notes had any scientific value, and eventually she wrote a book, Words on the Threshold, published in early 2017, about the linguistic patterns in 2,000 utterances from 181 dying people, including her father.

Despite the limitations of this book, it’s unique—it’s the only published work I could find when I tried to satisfy my curiosity about how people really talk when they die. I knew about collections of “last words,” eloquent and enunciated, but these can’t literally show the linguistic abilities of dying people. It turns out that vanishingly few have ever examined these actual linguistic patterns, and to find any sort of rigor, one has to go back to 1921, to the work of the American anthropologist Arthur MacDonald.To assess people’s “mental condition just before death,” MacDonald mined last-word anthologies, the only linguistic corpus then available, dividing people into 10 occupational categories (statesmen, philosophers, poets, etc.) and coding their last words as sarcastic, jocose, contented, and so forth. MacDonald found that military men had the “relatively highest number of requests, directions, or admonitions,” while philosophers (who included mathematicians and educators) had the most “questions, answers, and exclamations.” The religious and royalty used the most words to express contentment or discontentment, while the artists and scientists used the fewest.

MacDonald’s work “seems to be the only attempt to evaluate last words by quantifying them, and the results are curious,” wrote the German scholar Karl Guthke in his book Last Words, on Western culture’s long fascination with them. Mainly, MacDonald’s work shows that we need better data about verbal and nonverbal abilities at the end of life. One point that Guthke makes repeatedly is that last words, as anthologized in multiple languages since the 17th century, are artifacts of an era’s concerns and fascinations about death, not “historical facts of documentary status.” They can tell us little about a dying person’s actual ability to communicate.

Some contemporary approaches move beyond the oratorical monologues of yore and focus on emotions and relationships. Books such as Final Gifts, published in 1992 by the hospice nurses Maggie Callanan and Patricia Kelley, and Final Conversations, published in 2007 by Maureen Keeley, a Texas State University communications-studies scholar, and Julie Yingling, professor emerita at Humboldt State University, aim to sharpen the skills of the living for having important, meaningful conversations with dying people. Previous centuries’ focus on last words has ceded space to the contemporary focus on last conversations and even nonverbal interactions. “As the person gets weaker and sleepier, communication with others often becomes more subtle,” Callanan and Kelley write. “Even when people are too weak to speak, or have lost consciousness, they can hear; hearing is the last sense to fade.”

I spoke to Maureen Keeley shortly after the death of George H. W. Bush, whose last words (“I love you, too,” he reportedly told his son, George W. Bush) were widely reported in the media, but she said they should properly be seen in the context of a conversation (“I love you,” the son had said first) as well as all the prior conversations with family members leading up to that point.

At the end of life, Keeley says, the majority of interactions will be nonverbal as the body shuts down and the person lacks the physical strength, and often even the lung capacity, for long utterances. “People will whisper, and they’ll be brief, single words—that’s all they have energy for,” Keeley said. Medications limit communication. So does dry mouth and lack of dentures. She also noted that family members often take advantage of a patient’s comatose state to speak their piece, when the dying person cannot interrupt or object.

Many people die in such silence, particularly if they have advanced dementia or Alzheimer’s that robbed them of language years earlier. For those who do speak, it seems their vernacular is often banal. From a doctor I heard that people often say, “Oh fuck, oh fuck.” Often it’s the names of wives, husbands, children. “A nurse from the hospice told me that the last words of dying men often resembled each other,” wrote Hajo Schumacher in a September essay in Der Spiegel. “Almost everyone is calling for ‘Mommy’ or ‘Mama’ with the last breath.”

It’s still the interactions that fascinate me, partly because their subtle interpersonal textures are lost when they’re written down. A linguist friend of mine, sitting with his dying grandmother, spoke her name. Her eyes opened, she looked at him, and died. What that plain description omits is how he paused when he described the sequence to me, and how his eyes quivered.

But there are no descriptions of the basics of last words or last interactions in the scientific literature. The most linguistic detail exists about delirium, which involves a loss of consciousness, the inability to find words, restlessness, and a withdrawal from social interaction. Delirium strikes people of all ages after surgery and is also common at the end of life, a frequent sign of dehydration and over-sedation. Delirium is so frequent then, wrote the New Zealand psychiatrist Sandy McLeod, that “it may even be regarded as exceptional for patients to remain mentally clear throughout the final stages of malignant illness.” About half of people who recover from postoperative delirium recall the disorienting, fearful experience. In a Swedish study, one patient recalled that “I certainly was somewhat tired after the operation and everything … and I did not know where I was. I thought it became like misty, in some way … the outlines were sort of fuzzy.” How many people are in a similar state as they approach death? We can only guess.

We have a rich picture of the beginnings of language, thanks to decades of scientific research with children, infants, and even babies in the womb. But if you wanted to know how language ends in dying people, there’s next to nothing to look up, only firsthand knowledge gained painfully.

Lisa Smartt at her father, Mort Felix’s bedside

After her father died, Lisa Smartt was left with endless questions about what she had heard him say, and she approached graduate schools, proposing to study last words academically. After being rebuffed, she began interviewing family members and medical staff on her own. That led her to collaborate with Raymond Moody Jr., the Virginia-born psychiatrist best known for his work on “near-death experiences” in a 1975 best-selling book, Life After Life. He has long been interested in what he calls “peri-mortal nonsense” and helped Smartt with the work that became Words on the Threshold, based on her father’s utterances as well as ones she’d collected via a website she called the Final Words Project.

One common pattern she noted was that when her father, Felix, used pronouns such as it and this, they didn’t clearly refer to anything. One time he said, “I want to pull these down to earth somehow … I really don’t know … no more earth binding.” What did these refer to? His sense of his body in space seemed to be shifting. “I got to go down there. I have to go down,” he said, even though there was nothing below him.

He also repeated words and phrases, often ones that made no sense. “The green dimension! The green dimension!” (Repetition is common in the speech of people with dementia and also those who are delirious.) Smartt found that repetitions often expressed themes such as gratitude and resistance to death. But there were also unexpected motifs, such as circles, numbers, and motion. “I’ve got to get off, get off! Off of this life,” Felix had said.

Smartt says she’s been most surprised by narratives in people’s speech that seem to unfold, piecemeal, over days. Early on, one man talked about a train stuck at a station, then days later referred to the repaired train, and then weeks later to how the train was moving northward.

“If you just walk through the room and you heard your loved one talk about ‘Oh, there’s a boxing champion standing by my bed,’ that just sounds like some kind of hallucination,” Smartt says. “But if you see over time that that person has been talking about the boxing champion and having him wearing that, or doing this, you think, Wow, there’s this narrative going on.” She imagines that tracking these story lines could be clinically useful, particularly as the stories moved toward resolution, which might reflect a person’s sense of the impending end.

In Final Gifts, the hospice nurses Callanan and Kelley note that “the dying often use the metaphor of travel to alert those around them that it is time for them to die.” They quote a 17-year-old, dying of cancer, distraught because she can’t find the map. “If I could find the map, I could go home! Where’s the map? I want to go home!” Smartt noted such journey metaphors as well, though she writes that dying people seem to get more metaphorical in general. (However, people with dementia and Alzheimer’s have difficulty understanding figurative language, and anthropologists who study dying in other cultures told me that journey metaphors aren’t prevalent everywhere.)

Even basic descriptions of language at the end of life would not only advance linguistic understanding but also provide a host of benefits to those who work with dying people, and dying people themselves. Experts told me that a more detailed road map of changes could help counter people’s fear of death and provide them with some sense of control. It could also offer insight into how to communicate better with dying people. Differences in cultural metaphors could be included in training for hospice nurses who may not share the same cultural frame as their patients.

End-of-life communication will only become more relevant as life lengthens and deaths happen more frequently in institutions. Most people in developed countries won’t die as quickly and abruptly as their ancestors did. Thanks to medical advances and preventive care, a majority of people will likely die from either some sort of cancer, some sort of organ disease (foremost being cardiovascular disease), or simply advanced age. Those deaths will often be long and slow, and will likely take place in hospitals, hospices, or nursing homes overseen by teams of medical experts. And people can participate in decisions about their care only while they are able to communicate. More knowledge about how language ends and how dying people communicate would give patients more agency for a longer period of time.

But studying language and interaction at the end of life remains a challenge, because of cultural taboos about death and ethical concerns about having scientists at a dying person’s bedside. Experts also pointed out to me that each death is unique, which presents a variability that science has difficulty grappling with.

And in the health-care realm, the priorities are defined by doctors. “I think that work that is more squarely focused on describing communication patterns and behaviors is much harder to get funded because agencies like NCI prioritize research that directly reduces suffering from cancer, such as interventions to improve palliative-care communication,” says Wen-ying Sylvia Chou, a program director in the Behavioral Research Program at the National Cancer Institute of the National Institutes of Health, who oversees funding on patient-doctor communication at the end of life.

Despite the faults of Smartt’s book (it doesn’t control for things such as medication, for one thing, and it’s colored by an interest in the afterlife), it takes a big step toward building a corpus of data and looking for patterns. This is the same first step that child-language studies took in its early days. That field didn’t take off until natural historians of the 19th century, most notably Charles Darwin, began writing down things their children said and did. (In 1877, Darwin published a biographical sketch about his son, William, noting his first word: mum.) Such “diary studies,” as they were called, eventually led to a more systematic approach, and early child-language research has itself moved away from solely studying first words.

“Famous last words” are the cornerstone of a romantic vision of death—one that falsely promises a final burst of lucidity and meaning before a person passes. “The process of dying is still very profound, but it’s a very different kind of profoundness,” says Bob Parker, the chief compliance officer of the home health agency Intrepid USA. “Last words—it doesn’t happen like the movies. That’s not how patients die.” We are beginning to understand that final interactions, if they happen at all, will look and sound very different.

Complete Article HERE!

Patients in end-of-life care to be treated with magic mushrooms

A spokeswoman for Palliative Care Australia said anxiety is a common and distressing symptom for those entering the final stage of their life.

By Benjamin Ansell

Palliative care patients will be treated with the psychoactive ingredient in magic mushrooms in a bid to reduce their anxiety during end of life care.

The first of 30 patients in Melbourne’s St Vincent’s Hospital trial will be treated with psilocybin in April after a year-long battle to have the study approved by the ethics committee, as well as state and federal authorities.

Patients will be given a single dose of the psychedelic drug, which stimulates feelings of euphoria and is believed to be able to ease anxiety, fear and depression for up to six months.

Applicants will be screened, requiring a state government permit to take the medication, and will be closely monitored by two clinicians on the ‘dose day’ while the initial high wears-off.

“With therapists in the room providing therapy it will allow people to have a heightened awareness of their situation, see the problem and work through it,” Mark Bowie, director of Palliative Medicine at St Vincent Hospital, said.

St Vincent’s clinical psychologist Dr Margaret Ross said patients in the study will be given a single dose of the drug in capsule form.

A similar trial conducted at New York University found 70 per cent of patients later reflected on the psilocybin experience as one of the top five most spiritually significant experiences of their entire lives, while 87 per cent reported increased life satisfaction overall.

Vice President of Australia’s Psychedelic Research In Science and Medicine Association Dr Stephen Bright told 9News that the study “sets a precedent” for more research into the medical application of psychoactive substances.

Patients will be treated with the psychoactive ingredient in magic mushrooms.

“I think it’s fantastic this study has been able to obtain the requisite approval, there have been multiple attempts to use psychedelics which have all been knocked back,” Dr Bright said.

“The fact that this has been able to secure approval is very encouraging.”

Dr Bright, also a senior lecturer at Edith Cowen university, is currently attempting to secure funding and ethics approval for another study on the potential of MDMA to be used in the treatment of Post-Traumatic Stress Disorder.

A spokeswoman for Palliative Care Australia told 9News.com.au anxiety is a common and distressing symptom for those entering the final stage of their life.

“This can be triggered by concerns and fears about how they will die, how their families and loved ones will cope as well as existential or spiritual concerns,” the spokeswoman said.

Complete Article HERE!

I trekked to a graveyard to learn how my ancestors died.

But can genealogy help predict how long I will live?

By Debra Bruno

Fascinated with genealogy, I’ve started spending too many hours chasing snippets of family stories. I figure if I can learn something about my family tree, it might shed light on my health and how long I will live.

I’ve become obsessed with two ancestors in particular: Permelia Van Valkenburgh and her son Amasa Matoon Van Valkenburgh.

Permelia was my great-great-great grandmother. Married at 17 to a distant cousin who shared her last name, she gave birth to 10 children over 18 years and died in 1855 at age 42.

Permelia was a 19th-century farm wife in the Catskill Mountains, a place where people didn’t roam alone at night for fear of panther attacks. Two of her 10 children died in infancy and one at 20. Her next-to-last child, Amasa, was my great-great grandfather. He was 9 years old when his mother died.

What killed her? If it was childbirth, there is no record of a child born or buried the year she died. If it was flu or tuberculosis or another contagious disease, there is no evidence of anyone else in her family dying in May 1855, although both were common causes of death in 19th-century communities. Maybe it was a laceration that became infected, picked up in unrelenting farm and housework. The month of May in the high Catskills could be chilly, and the winter stores of food would have been nearly depleted. Crops would not yet have produced anything. There was the occasional flash flood in the nearby creeks, so maybe she drowned.

Curious about what killed people in rural New York in the mid-19th century, I found the U.S. Census Mortality Schedules for the state from 1850 to 1880. The United States recorded this information once every 10 years and listed only those who died the year of the survey. Even so, I found some interesting details for Greene County, where she lived, in 1850: consumption (tuberculosis), cholera, dysentery, whooping cough, infection of lungs, infection of hand, infection of brain, asthma, childbirth, drowning and cancer were listed as causes of death. The most frequent cause was cholera. Many times, the named cause of death for people in their 80s and 90s was “old age.”

Did any of this have any meaning for me? Probably not. “The big picture is the shift from infectious disease as a major cause of death to chronic diseases,” said Charles Rosenberg, professor of history of science at Harvard. Causes of death such as tuberculosis were “background noise,” he said, so common that they were unremarkable. What drew more attention were cholera epidemics or influenza sweeping through communities.

Susan Speaker, a historian with the National Library of Medicine at the National Institutes of Health, said that before the 1920s, more Americans died of “microbe-caused diseases” than anything else. The balance started to shift by the 1930s and ’40s, she said.

In other words, a farm wife living in the country — while not exposed to the overcrowding and bad water of cities — would have had a number of other health challenges.

For instance, “if you came down with appendicitis in the 1900s in the country, you might be out of luck,” said Speaker, “unless you had a local practitioner who was a decent surgeon.”

While I was getting closer at making an educated guess at the cause of death, my mother and I ventured into the Catskill Mountains one Sunday morning in August after services at the First Reformed Church in Athens, N.Y., the village on the Hudson River where we both grew up and where many of our ancestors now rest.

We drove high into the mountains until the ski resorts and gift shops dropped away, the houses became more spread out, and the forests got thicker in the Catskill State Park, land first preserved by the state in 1885. Finally we reached the turnoff to Westkill, the hamlet of a hamlet, tucked between hills in a valley.

The cemetery was small, with maybe 40 stones. The grass had been newly mowed, and damp cuttings thrown by a power mower still plastered the white sides of the Westkill United Methodist Church (built in 1848) and, next to it, the Westkill Baptist Church (built in 1830). One or two graves had collapsed, leaving a deep, grass-lined trench in the earth. We peered inside the churches, but both had been long abandoned. Even the pews were gone.

Back at the far edge of the cemetery, just before the ground dropped off to a creek, I found a dark, mottled headstone. It read:

PERMELIA A.
Wife of Jacob Van Valkenburgh
Died May 7, 1855
Aged 42 years, 3 mo, 5 ds

Near her was the stone of James, the 20-year-old son who died just two years before her. Along with losing babies Elizabeth, Huldah and George, did James’s death in 1853 lead to her decline?

Just a few steps away was her son Amasa, my great-great grandfather.

Amasa M. Van Valkenburgh
Died July 1, 1890
Aged 44 years

Here was another ancestor who died young. Amasa married at age 24, had five children with his wife, Christina Smith, and died in the middle of the summer.

Town records in Lexington, N.Y., eventually turned up his cause of death: “acute peritonitis,” which is an inflammation of the abdominal wall. Untreated, as it would have been in pre-antibiotic times, peritonitis leads to sepsis and death. What is still a mystery is what caused the peritonitis. It could have been a puncture wound to the stomach. It also could have been cirrhosis of the liver, which often leads to peritonitis. NIH’s Speaker said it would be impossible to know whether the peritonitis resulted from cirrhosis, a perforated gastric ulcer, a burst appendix or a ruptured gall bladder.

Buried alongside him was his wife, Christina. She went on to remarry and outlive a second husband. Christina passed away in 1946 at age 96. She would have remembered the Civil War, World War I, women getting the right to vote and World War II.

Of her five children with Amasa, two lived into their 90s, and another to 87. And her grandson, my grandfather Orrin, lived to 97.

Does this mean, then, that I could count on a longevity gene?

study published in Genetics shut down that fantasy. Looking at 400 million people born between 1800 and 1920, whose information had been collected from public family trees in Ancestry.com, investigator Graham Ruby found that only about 10 percent of human longevity is inherited. Previous estimates ranged from 15 to 30 percent.

Our intuition is that long life spans run in families, Ruby said. And yes, genetics does contribute to life span, he said, “but to a much lesser extent than we thought.”

“Honestly, all of us were a little surprised,” said Catherine Ball, chief scientific officer at Ancestry, which collaborated with Ruby at Calico, a California research-and-development company.

“What this work has shown is not that longevity isn’t inherited,” she said. “It is inherited, but the cause is not often genetics.” In other words, humans also inherit money, property and social status, which also influence longevity.

Both Ruby and Ball said that a much more important role in longevity is “assortative mating.” In other words, people tend to marry people who are similar to them in location, socioeconomic status and education, and those factors also influence longevity. People are more likely to match the longevity of their in-laws than their ancestors, Ruby said.

The research showed fascinating patterns such as a drop in longevity about 1918, when World War I and the Spanish flu were killing millions, Ball said.

“Over time, the types of things that caused mortality were very different,” she said. “Infectious disease was a much more important killer then than now. Childbirth was not something you really wanted to go through.”

In other words, both researchers said, much of what foreshadows our longevity today involves healthy lifestyles and access to medical care more than genes. I didn’t necessarily uncover any clues about my own health ancestry in my research, but I did develop a greater respect for the enormous achievements of modern medicine.

Complete Article HERE!

Seattle, It’s Time to Talk About Death

There are many things we want to talk about with family and friends; death isn’t usually one of them. But from Death Salons to Death Cafes and dinners, there are plenty of signs in Seattle that this is changing

BY: Jen Swanson

There are a couple of ways to kill a dinner conversation. First, discussion of politics, a truism that is magnified in our divisive modern age. Second, religion, although this doesn’t often come up on this side of the Cascades. Finally, death, though most people would never consider raising a subject so morbid. In terms of topics to avoid discussing over dinner—or ever—mortality ranks high on the list.

However, one local entrepreneur and author, Michael Hebb, considers such conventional thinking dead wrong. “It’s like the opposite end of the continuum of talking about the weather or of a cocktail conversation,” says Hebb, whose new book, Let’s Talk About Death (Over Dinner), describes death as the most important conversation we’re not having. Such silence bears serious repercussions, and not only in terms of missed opportunities to connect with your loved ones. The book identifies end-of-life hospital expenses as a leading factor in American bankruptcies, Medicare patients outspending their total assets, and the sad fact that 80 percent of Americans die in hospitals, despite most wanting to die at home.

CONVERSATION STARTERS: The dinner table is the perfect place to gather and talk about death, says Michael Hebb whose new book helps foster these conversations

To Hebb, whose deep interest in death-related discourse led friends to throw a living funeral for his 40th birthday, one problem is that modern Americans no longer make time to eat together. “Just like we’ve forgotten how to pickle and can and preserve, we’ve also forgotten how to come together around the dinner table and have meaningful conversations,” he says, ruing the loss of this important “cultural engine.” The book and its companion website , inspired by a course Hebb taught at the University of Washington, offer an easy, DIY format intended to help readers host their own death dinners, with personalized cues and prompts that have fostered 150,000–200,000 dinners worldwide since launching in 2012. “There hasn’t been a single Facebook, email or Twitter response indicating a dinner went badly, which tells me that people know how to have this conversation,” says Hebb. “Maybe they’ve had a forgettable experience, but no one having a bad experience tells me that we’ve tapped into a basic human need.”

Hebb isn’t the only local focusing on this topic. From Death Salons to the locally produced Speaking of Dying film and companion workshops, there is a quiet movement in the area that’s giving voice to this once taboo subject. “This is a great region that’s having an interesting undercurrent conversation,” says Taryn Lindhorst, Ph.D., LCSW, a Behar professor of integrated oncology and palliative care social work at the University of Washington, who cites the Pacific Northwest’s counterculture vibe, antiauthoritarian bent and focus on experimentation as some of the reasons why.

Karuna Duval hosts Death Cafes which offer a safe place to talk about death

While Michael Hebb was restoring the lost art of breaking bread, the concept of discussing existential topics—like death—over tea and cake was gaining traction in England. The idea for Death Cafes was originally conceived in London in 2011, but quickly spread across the pond to North America and particularly to Seattle, where Death Cafes have cropped up in libraries, mortuaries, houses and actual cafés.

“It’s a safe place to talk about death,” says Karuna Duval, an ordained interfaith minister, hospice chaplain, certified death doula and one of many volunteer facilitators hosting Death Cafes in and around the city.

Duval has hosted Death Cafes in Washington and California, where she used to live, and estimates 7,200 Death Cafes have now taken place in 52 countries worldwide. “I just found it so fascinating because of the experience of so many people,” says Duval of attending her first Death Cafe in 2012 in California, following the deaths of her father, grandmother, partner and first husband. Such open discourse hadn’t been evident 10 years before, when Duval, inspired by a book titled Talking About Death Won’t Kill You, tried to organize her own workshops to foster end-of-life discussions and planning. The response then was lukewarm, but a decade later, the temperature had changed. “It felt like a relief,” says Duval, who was seeking to process all the loss in her life. “It was like, oh my gosh, I can finally be around people who aren’t like wigged out or weird talking about this stuff.”

There are all sorts of reasons why people don’t talk about death: A desire not to sound overly morbid. Fear of the unknown. A remove from death that has happened because so many people now die in hospitals, not at home. The superstitious notion that talking about death might hasten the event. The “go, fight, win” mode often prompted by serious illness. “In fact, the opposite is true,” says Hebb, describing how our cultural programming can work against us. “If somebody has a terminal diagnosis, having end-of-life conversations will extend their life. And that’s clinically proven.”

Our underlying “death anxiety” was the key focus of the late scholar, author and roving professor Ernest Becker, whose seminal book, The Denial of Death, won the Pulitzer Prize in 1974. “Ernest Becker was a cultural anthropologist who developed theories about how the uniquely human awareness of our mortality impacts our behavior,” explains Deborah Jacobs, executive director of the Seattle-based Ernest Becker Foundation, which was founded by a retired physician in 1993.

“I would posit that the death-positive movement is founded on Ernest Becker’s thinking,” says Jacobs of the growing swell of Death Cafes, death dinners and other efforts in recent years to reclaim the ways in which we talk and think about death, actions that echo the foundation’s longstanding efforts to bring our underlying awareness of death to the forefront.

To Becker, who saw death anxiety as a key driver in everything from religion and culture to our choices of partners and jobs, knowledge of our inevitable passing also drives each person to embark on an “immortality project,” or a quest to fill our lives with meaning. “Meaning has to last beyond our demise, our physical demise, so it could be making children, writing books, being good at your job, being a war hero, being a terrorist,” says Jacobs, noting Becker’s diverse appeal.

LIFELINE: Retired hospital chaplain Trudy James, through her company Heartwork, offers workshops that tackle numerous end-of-life issues

Trudy James, a retired hospital chaplain, also sees Becker’s theories at play in our current health care system. “The medical system became part of what was already the underlying denial of death,” says James, describing a system in which doctors don’t talk to their patients about death or dying. This marks a departure from James’ early career, which stems from the 1980s AIDS crisis, when patients knew they were going to die, openly discussed it and ultimately died more peacefully. “We live in this fantastic medical environment where we’re the beneficiaries of fabulous health care and have all these new procedures and new clinical trials and new treatments and new medications,” she says. “It’s caused people to believe they can live forever.”

James’ solution was to create a four-part series of end-of-life workshops and a documentary film, Speaking of Dying, which follows patients, families and medical professionals through various end-of-life options, including Washington state’s “Death with Dignity” law. Screened at churches, senior homes and other venues in Seattle since debuting at the Frye Art Museum in 2015, the film always draws attendees, including doctors and hospital chaplains who’ve never discussed death with their own families, says James, describing the documentary as an instant conversation starter. Meanwhile, the workshops, offered since 2008 through James’ company, Heartwork, offer participants a safe, intimate space to share stories, address questions and fears, complete advance directives and get familiar with hospice/medical procedures, such as CPR, which rarely works out in real life like it does in the movies. Doing this “real work of dying,” as James calls it, allows people to spend their final moments in peace with their family.

Death Doulas
These coaches help ease the end of lifeAs more people decide to die at home, death doulas, also known as end-of-life doulas or death midwives, guide patients and their families through the end-of-life process in a way similar to how regular midwives would assist with home births. Death doulas play various roles, from offering patients comfort and companionship in their final days to supporting the family by performing basic caregiving tasks, assisting with funeral planning and helping loved ones grieve. “It’s not to replace any of the components of hospice,” says Karuna Duval, a hospice chaplain who is also a death doula, of the two programs’ complementary functions. The International End of Life Doula Association (INELDA), founded in 2015, is just one of many organizations offering training and accreditation to anyone interested in joining this budding movement.

“If you haven’t had these conversations by the time you get to the hospital, the hospital is a terrible, terrible place to have them,” says Lindhorst, the UW professor, noting the ease with which hospitals can overwhelm patients who haven’t considered their options beforehand.

“It’s kind of like a conveyer belt,” says Lindhorst, describing a medical system whose default status is always set to treatment. “Once you step on it” and start down that path, “then treatment implies the next thing, implies the next thing, implies the next thing,” she says, noting how easily people can get moved through the system, in part because doctors don’t often have more than 15 minutes to explain various options. “It’s not anybody’s fault per se, but the system is so strong in this,” says Lindhorst, who saw early on in her career, which was also rooted in the HIV/AIDS epidemic, that the onus is on patients to be knowledgeable and empowered.

ACTING OUT: Playwright Elizabeth Coplan channeled her grief over the death of a family member into a a play, The Grief Dialogues which is also now a book of essays by 61 authors

The medical community could learn something from Elizabeth Coplan, a playwright who four years ago was struggling to cope with the death of a cousin, a freak accident that claimed a loved one and octogenarian in-laws so fearful of dying they refused to entertain any end-of-life discussions. “Some people write in journals,” the theater veteran remembers of her efforts to process the situation. “I’m going to write about my cousin’s death as a play.”

That exercise resulted in The Grief Dialogues, a series of short plays structured like The Vagina Monologues, but with actors exploring scenarios centered on grief, death and dying. The 90-minute production, which invites a grief counselor on stage to lead an audience Q&A after every show, immediately resonated with people, says Coplan, who credits the play’s passive, third-party presentation as a safe way to broach a taboo topic. “By sharing my stories that way, which you could just take as strictly theatrical or you could take it as entertainment,” people finally started to open up, she says. “Suddenly, people who were afraid to talk about death in general, or their own experiences with grief, all of a sudden wanted to share their stories.”

It was while applying for grants for her production that Coplan came across The Order of the Good Death, a Los Angeles–based group of funeral-industry insiders, academics and artists seeking to promote a culture of “death positivity.” She was especially taken by the group’s Death Salon, a weekend conference on mortality styled in the vein of an 18th-century gathering of intellectuals, so much so that she volunteered to bring the event to Seattle. “It was kind of like a Comic-Con for death,” says Coplan, recalling the Victorian-style hairstyles, makeup and dress on display during the sold-out affair, which took place early in September 2017, in partnership with the UW School of Social Work.

The event marked an important turning point for Seattle’s death community by uniting the diverse leaders of a fragmented movement that had so far existed on the relative fringe. Presentations were delivered by Chanel Reynolds, whose husband’s untimely death led her to found GYST (Get Your Shit Together), a website introducing others to the easily avoided world of wills and life insurance. Other presentations included a Death with Dignity panel moderated by Sally McLaughlin, executive director of End of Life Washington; an introduction to green burials; a film about Death Cafes; and an exploration of postmortem pet options with Caitlin Doughty, the 34-year-old mortician who founded The Order of the Good Death in 2011. Lindhorst, the UW professor, explained the natural signs and symptoms of approaching death, knowledge that’s becoming increasingly rare as fewer people die at home. Nora Menkin, executive director of The Co-op Funeral Home of People’s Memorial—the country’s oldest and largest funeral cooperative and also a Death Salon cosponsor—examined alternative death care. Katrina Spade, the founder of Recompose, described her pioneering efforts to transform human remains into soil. On the first night, The Grief Dialogues debuted to a full house at the UW’s Ethnic Cultural Theatre.

“People who are into this, they’re hungry for it,” says Jacobs of the Ernest Becker Foundation, describing the Death Salon as a “critical community builder,” which has a mission similar to the foundation’s of providing “a home” for like-minded seekers. Along with cosponsoring the event—and participating in Death Salons in Philadelphia and Boston—the foundation facilitated a lunchtime dialogue, allowing guests to break from the conference format and engage in a round-table discussion about death.

The success of the Death Salon conference is one indication of our region’s relative death positivity, which could be attributed to the sheer number of innovators working in this space. “The good-death movement, or the death-positivity movement, used to be defined by a couple of individuals,” says Hebb. “Now, there’s a huge community of thought leaders, practitioners and enthusiasts, so that’s the big change,” he says. “It’s a very multidisciplinary community of people considering these issues,” he says, pointing to the mix of artists, entrepreneurs, doctors and “blue-chip establishment folks,” like Cambia, an organization that runs an entire center devoted to palliative care at the University of Washington, feeding Seattle’s “unique influence and impact.”

Such attitudes could also be influenced by our diversity, speculates Lindhorst, who points to our large Asian population as an example. Religions originating in Asia, she says, “have a very different kind of orientation towards death,” contrasting the Christian biblical literalist interpretation of death with Buddhist movements flourishing on the similarly progressive West Coast. “In many Asian cultures, that idea of integrating daily thinking about death is actually part of the spiritual condition as opposed to the dominant avoidance that we have here in the United States.” Social media, which makes it easier than ever to find and share information, also factors into the death-positive movement’s recent swell.

“I think more of us are talking about death and grief in a very open way,” says Coplan, describing today’s conversations about death as less a “macabre, voyeur” issue and more of an academic one, even if society still has some way to go. “I actually give the millennials a lot of credit for this kind of chipping away of the stigma around talking about death,” says Coplan, who has two millennial sons and meets plenty more at her shows. “They are incredulous that their parents are getting so worked up and don’t want to talk about death,” she says, describing the younger generation’s lack of fear regarding what they know to be a natural eventuality. “We talk about sex, we talk about drugs, why don’t we talk about death?”

Why Talk About Death?

There are lots of good reasons to talk about death, and not only because such discussion helps us prepare for the inevitable. Completing your advance directive, a set of legal documents that detail your last wishes, and communicating its contents and location to loved ones clarifies your thoughts on life support and other medical interventions. (Advance directive forms are available from your physician or most health care organizations.)

Sharing your post-life wishes up front removes any guesswork involving the funeral, which, pending legislation scheduled for the upcoming January session in Olympia, could soon extend beyond the standard burial and cremation options to include alkaline hydrolysis, a water-based cremation also known as “aquamation,” and recomposition, a natural process that converts human remains into soil. Communicating the contents of your will and choosing an executor of your estate helps avoid surprises and legal pushback. Moreover, having these conversations beforehand alleviates stress on your loved ones, allowing them to avoid making difficult decisions under pressure and simply focus on their grief.

“The people who have had the conversation and at least know what the deceased person wanted, if they got a chance to talk about what was important to them, they’re much more confident in making the decisions and going through the process,” says Nora Menkin, executive director of People’s Memorial Association and The Co-op Funeral Home on Capitol Hill. “The people that tend to have the hardest times are ones that didn’t have any conversation, therefore there was absolutely no preparation for it,” says Menkin, whose organization, in addition to regular end-of-life planning workshops, furnishes each of its 70,000-plus members with end-of-life planning documents that double as excellent conversation starters. “We also want to make sure it starts the conversation with the family, because it does the family absolutely no good for Mom to say, ‘Oh, it’s all taken care of,’ but not tell them what she wanted.”

A Few Tips for Getting the Conversation Started

It’s never been easier to instigate conversations about death, at least if you have a copy of Michael Hebb’s new book, Let’s Talk About Death (Over Dinner). The book builds a solid case for why the dinner table is actually the perfect place to discuss death and dying followed by ideas and tips—including what to eat, whom to toast, and a menu of conversation starters—for hosting your own death dinner at home.

Prompts include, but aren’t limited to, the following thought-provoking questions:
• If you had only 30 days left to live, how would you spend it? 
• What is the most significant end-of-life experience of which you’ve been a part? 
• Do you believe in the afterlife? 
• Would you ever consider doctor-assisted suicide?
• If you were to design your own funeral or memorial, what would it look like?
• What song would you want played at your funeral? Who would sing it? 
• What does a good death look like? 
“It’s like a board game,” says Hebb of the death dinner series’ easily replicated structure, which is also available online. “The only thing we don’t provide is the food.”

Complete Article HERE!

A Gentler Death

The one thing everyone shares in life is that some day it will end. Pāhiki Eco-Caskets wants to shape a final resting place that is environmentally friendly for all.

By Matthew Dekneef

Like most people, Cortney Gusick never considered the prospect of purchasing a casket until she needed to select one for a family member. Eight years ago, her dad died from pancreatic cancer, and she was thrust into the death-care industry as a consumer. The most difficult part of making the funeral arrangements was finding the right casket. Gusick wanted something that reflected who her father was in his very full life: a Hawai‘i boy who cared about the environment and carried those values with him to Oregon, where he raised his three daughters. Ultimately, Gusick settled on a simple pine box from a small-scale, non-commercial business. “His body was going to biodegrade as it was designed to do, and it would provide some kind of nourishment for the earth,” Gusick says. She reasoned that the receptacle in which he was buried should do the same.

Common caskets are not earth-friendly. Nearly every model found in funeral home catalogs is manufactured with metal, paint, silicone, synthetic polyester fabric, and other non-biodegradable materials. That greener options aren’t readily available in the modern burial industry concerns Gusick, especially in a place like Hawaiʻi, where a reverance for one’s natural surroundings is part of daily life. After her dad’s death, she saw the metaphorical light at the end of the tunnel, and she came out the other side a casket builder. “This is what I want to offer for people,” she says. “For someone’s eco-legacy to be, ‘I did right by the earth.’”

Last year, Gusick started Pāhiki Eco-Caskets, a low-impact, environmentally sound casket manufacturer, in the backyard of her Mānoa Valley home. The venture was a 180-degree pivot from her ongoing job at the Silicone Valley-based company UserTesting as a test engineer in the amorphous world of software and mobile applications. “I had zero background,” Gusick admits. But the 37-year-old felt equipped for the intensely tactile field she was about to enter. “My dad taught his girls how to do everything, how to change our own tires, acid-strip a deck, lacquer the house’s wainscotings,” she says. She binged on online tutorials to gain a baseline knowledge of woodworking. “Between Dad and YouTube,” she says, “I felt like, ‘I got this.’”

Three months later, she teamed up with Logan Baggett, a friend she met in Oregon who had previously worked in Hawaiʻi’s solar industry, to help finesse Pāhiki’s offerings of 4- to 6-foot-long, 100 percent biodegradable caskets crafted from untreated, Hawaiʻi-grown wood. Soon after, the company attracted five investors and received a business loan from the Office of Hawaiian Affairs, which they used to buy hardwoods and build out inventory.

In Hawaiian, the word pāhiki means “to pass quietly, go lightly, touch gently,” a definition the duo strives to embody. Their caskets are made with reclaimed local albizia, monkeypod, mango, avocado, and Norfolk pine provided by Waimānalo Wood, a lumber mill that also houses their workshop. Pāhiki caskets range in price from $1,800 to $2,200 (less than the $2,400 median cost of a standard metal casket). In the circumstance that someone needs a keiki casket, Pāhiki provides it for a dollar.

Gusick considers every dimension of her industry. We’re trapped in a “death-denial culture,” especially in the United States, she says, which is obsessed with indefinitely preserving the deceased in ways that only benefit the living. For Gusick, the more grandiose style of caskets, which can cost upwards of $15,000, are more for the living than the dead. Those caskets “resemble pieces of high-end furniture that belong in this world, that belong in a house, and look like they’re meant to last over time,” she says. But the reality is they go into the ground, never to be seen again.

Pāhiki’s unobtrusive design aesthetic is in direct response to that. The final products—caskets that trade metal, paint, synthetic fabric, and lacquer for wood, non-toxic glue, muslin, and coconut-oil finishes—are crafted to allow the wood grain to shine in its most organic state. The caskets are stripped of sensational flourishes, but not of sentiment. Family members can opt to purchase the “collaborative option,” for which Gusick and Baggett affix biodegradable linen loops around the casket’s perimeter to hold flowers from funeral guests.

Pāhiki also has a keen interest in engaging with communities that have large Native Hawaiian populations on Oʻahu and neighbor islands. During community talk stories, Gusick presents information about Native Hawaiian burial rights and practices—which involve cremating a body in an imu, wrapping the bones in kapa cloth, and burying them in lauhala—and how to perform them legally. As a Native Hawaiian, Gusick feels especially called to apply a Hawaiian understanding of ʻāina to her work. “Hawaiians were the original environmental stewards,” she says. “I can rewind back through so many generations of people where this was always their charge, to take care of the land, and now I can do it in a way that’s modern.”

As long as humans are dying, the death-care industry, which sees profits in the billions of dollars, will remain open for business. Pāhiki’s niche market is a fractional percentage of that, but it is poised to grow as an aging population becomes more informed of greener burial methods. While Pāhiki’s prototypes are evolving, the emotional gravity of the caskets will always be the same. “Isn’t it so crazy that we’re responsible for this thing that is so intimate for a person we’ll never meet?” Gusick often thinks. “We’ll never get to look into their eyes, never get to shake and touch their hand. It’s this very special, unique thing that will only be crafted and given to them once.” It’s a heavy order, but Pāhiki hopes to treat it lightly.

Above Ground

People who work in the death-care industry bring the lessons they learn in the field into their daily lives in quiet but profound ways. Here is what Gusick and Baggett have learned from the dead about how to live better every day.

Be introspective “Most people should contemplate death; it shouldn’t be an afterthought,” Baggett says. “We know it’s coming, we know it’s part of life—it’s just a transition, in my eyes.” Thinking about death and removing its negative connotations can lead to a more present and purposeful approach to life.

Be clear about your wishes “Documentation is an act of love,” Gusick says. “Put it in writing and in thoughtful detail.” The way you live isn’t always enough to let loved ones know how you want to be buried.

Be nice “There are 20 million things I don’t know about a stranger, but there is one thing I can guarantee I know about them and that they know about me,” Gusick says. That is the inevitability of death. “In society, you can quickly and easily dehumanize another person in the way you talk about them off-handedly or the way you treat them, not thinking back to that completely timeless experience you know you share with that person. If you reverse-engineer that awareness when you interact with people, you can use it to make a kinder, more insightful connection with someone. Or, you know, just try to not be a jerk.”

Complete Article HERE!

What do dying people really talk about at the end of life?

by Stacey Burling

It is common wisdom that nobody ever wished he’d spent more time at the office when he’s at death’s door.

That certainly makes sense, but Michael Ent, a social psychologist at Towson University, did what researchers do when confronted with unproven beliefs. He wondered if it was true. Then he tried to find out.

He and Mary Gergis, a nurse who also teaches at Towson, asked hospice nurses what dying people really talk about at the end of their lives. The 124 nurses from the Hospice and Palliative Nurses Association who responded to an online survey said patients are often more consumed with worries about how their families will fare after their deaths than they are with their own fates. They are about as likely to savor lives well led as to grapple with regrets. Many are worried about legacy and finances, a sign, Ent thinks, that some of them do indeed wish they’d worked more, or at least done a better job of managing their money.

Ent said the information, which has been accepted for publication in the journal Death Studies, could be helpful to caregivers. Some may be reluctant to push patients to engage in “life review” — end-of-life discussions of life history that have been shown to help alleviate anxiety and depression. “Sometimes patients might feel that it’s intrusive for a stranger to start asking them about their personal lives,” Ent said. However, if patients bring up some of the topics the nurses mentioned, that could be an opening for a deeper conversation.

Ent, whose wife is a nurse who has worked with hospice patients, said he was interested in what we could learn from the dying. Most of the academic studies he was able to find were more focused on practical aspects of support for the dying than on trying to harvest their wisdom. He couldn’t find anything about which subjects were on their minds. He read The Five Invitations: Discovering What Death Can Teach Us About Living Fully, written by a Buddhist hospice founder, but Ent wanted to do something more concrete and systematic. He read The Top Five Regrets of the Dying, also written by a hospice worker, and particularly questioned the top regret: “I wish I’d had the courage to live a life true to myself, not the life others expected of me.”

Again, Ent was skeptical. “I couldn’t imagine that being a top deathbed reflection,” he said.

For the survey, Ent and Gergis asked the nurses to list up to five “reflections” they heard most frequently from hospice patients. He concedes it would have been better to talk to patients themselves, but said privacy rules make them harder to reach. The nurses’ answers covered a wide range, from regrets to pride to faith in an afterlife. “I don’t want to be a burden” was a common sentiment, and many patients worried about how survivors would cope after they died. Some wished they had taken better care of themselves. Some said they were ready to go, while others wished for more time. They were thinking about whether their lives had mattered.

Ent categorized the comments and found that concern about loved ones was the most common response. Half of the nurses mentioned it. Regrets — these included people who thought they’d worked too much — came up 42 percent of the time, compared with 36 percent for gratitude. Concerns about legacy were cited by 29 percent of the nurses. Some of those people wished they had achieved more. About the same number of nurses said patients often said they were not ready to die (29 percent) as said they were ready (28 percent).

Ent said that the survey results show that hospice workers may want to spend more time allaying patients’ fears about how their deaths will affect family members.

He also thinks that research on what dying patients regret could help healthy people plan for the inevitable. Maybe fewer of us would be “blindsided” by our deaths if we talked more openly about mortality. Better financial planning could prevent many of the worries about unpaid bills.

Complete Article HERE!

What does dying — and mourning — look like in a secular age?

Twenty-nine percent of Americans anticipate a secular funeral.

Artist Day Schildkret works with New Yorkers to create an art installation as a way to remember the the beauty and dignity of human life.

By Tara Isabella Burton

When somebody dies in the Catholic tradition, people generally know what to do. There’s the saying of the Last Rites at a dying person’s bedside, the vigil for the deceased — also known as a wake — and, often, a formal Mass of Christian Burial.

In the Jewish tradition, there’s the practice of sitting shiva: the week-long mourning process during which the family of the deceased remains at home, and friends and relatives call on them to pay their respects.

In the Islamic tradition, the deceased’s body is ritually bathed and shrouded in white cloth before Muslims of the community gather to perform the Salat al-Janazah, the customary prayer for the dead.

But what happens when you die and you don’t follow any faith tradition?

When Iris Explosion — an entertainer and social worker who prefers to go by her stage name — was widowed unexpectedly at age 28, she and her friends had to create the memorial service for her husband, Jon, from scratch.

Explosion and her husband were not conventionally religious — she describes herself as a “lax Jew,” while her husband, a queer man interested in alchemy and other occult practices, often felt alienated from the born-again Christianity of his parents. The memorial service her friends created a few days after his death, she says, contained a blend of traditions and practices individual to Jon.

A Jewish friend recited the Mourners’ Kaddish. The group told stories — some reverential, some “bawdy” — that reflected all aspects of Jon’s personality. They played an orchestral rendition of the theme song to Legend of Zelda, Jon’s favorite video game. Friends from out of town dialed in on Skype to share their stores. Numerous friends gave Explosion rose quartz, a stone associated in some New Age and occult traditions with heart healing, as a gift.

The memorial service — as well as a second funeral service, which took place a few months later, and was similarly eclectic in style — focused on Jon’s personality and interests rather than being constrained by a specific set of traditions.

Explosion is just one person among the 24 percent of Americans who identify as religiously unaffiliated. For the religious “nones,” the issue of what happens when you die is an open question in more ways than one. According to a 2008 American Religious Identification Survey, the most recent year for which data is available, 29 percent of Americans do not anticipate having a religious funeral, for whatever reason, and given the steady increase in religious “nones” over the past decade, that number will likely only rise.

But what do secular funerals — or death rituals more broadly — look like? What can they provide that religious death rituals can’t? What are the challenges involved in putting them together?

And as secular funerals become increasingly individualistic, tailored to the preferences and needs of the deceased, rather than a given religious or spiritual tradition, what does that mean for the sense of community engendered by ritual?

Secular funerals are part of a wider “unbundling” of religion

It started with weddings.

Scholar and psychologist Philip Zuckerman, author of Living the Secular Life, suggested in a telephone interview that secular funerals are just the latest iteration of the secularization of major life stages overall.

Its genesis, he said, lies in the proliferation of secular weddings in America. In 2017, just 22 percent of American weddings took place in houses of worship, a nearly 20-point drop from 2009, according to data from the wedding website the Knot.

“The first thing we saw was zillions of people going online and registering with the Universal Life Church,” said Zuckerman, referring to an organization that virtually automatically ordains people over the Internet, “so they can perform their own weddings for friends and family, so they can still make it sacred but not under the auspices of religion.”

Different states have different laws about the extent to which Universal Life ordinations are legally valid for performing weddings. Funerals, however, have no such restrictions.

Zuckerman posits that among the people he’s interviewed for his book research, the desire to have a secular funeral isn’t just about not wanting to affirm the existence of a God or an afterlife that the deceased may or may not believe in. Rather, he says, it’s also about wanting to preserve a sense of the deceased’s individuality.

“They just don’t want fairy tales. They don’t want to be told, ‘So-and-so’s in a better place now,’ or, ‘So-and-so is now suckling the bosom of Jesus’ — they can find that talk annoying,” Zuckerman said. “We want to curate our own Facebook page. Why wouldn’t we want to curate our own funeral?”

More and more, Zuckerman said, he sees people choosing their own music and their own speeches that they want to be read after they die. “I think that is part of our growing individual and less of this care of tradition … more and more people want to feel the idiosyncrasies of the dead person and the specialness of the dead person.”

This attitude, he said, is particularly prevalent in the United States. “We all like to think in the United States that we’re special. Why wouldn’t we want our funerals to be special too?”

Certainly, for Iris Explosion, commemorating Jon’s life in a way that felt true to his personality and character was a priority. From sharing Jon’s favorite Spotify playlists with his friends to curate the music selection for the services to working in references to My Little Pony — a show Jon loved — Explosion and the couple’s friends created a memorial for Jon that fit his character.

By contrast, Explosion said, she declined to attend other memorial services, like one hosted by Jon’s family in his home state, that had a more Christian focus, instead circulating an email to attendees of that service asking them to donate to Planned Parenthood, which she felt better reflected her husband’s values.

Explosion’s experience dovetails with a phenomenon called religious “unbundling.” A term coined by Harvard Divinity School researchers Casper ter Kuile and Angie Thomas, who have covered how phenomena like CrossFit and Soulcycle function similarly to religions for their participants, “unbundling” refers to the way both the religiously unaffiliated and the religious alike are increasingly willing to pick and choose elements of spiritual traditions.

Someone might, for example, be a committed Christian but also practice Buddhist meditation or yoga, or be an atheist but attend Jewish family holidays and read tarot cards. In a pluralist landscape, in which people are used to gathering information and ideas from multiple sources (not least through the internet), a more individualized approach to religion and life rituals is all but inevitable.

As a culture, we still haven’t figured out what secular death rituals should look like

Even for those of traditional faiths, death is a phenomenon that defies easy answers. But for the religiously unaffiliated, processing and dealing with death and its aftermath can be an especially loaded task.

Brad Wolfe is trying to help them do that.

Wolfe is the founder of the week-long Reimagine End of Life festival. The singer-songwriter and author was inspired to work in the end-of-life space after watching a close college friend’s struggle with terminal cancer. The festival, which takes place in New York and San Francisco, partners with community centers and artists to curate a 300-strong series of events — from talks to workshops to performances to museum displays — dealing with the subject of death.

“Death is often the central coalescing element around which many religions are formed,” Wolfe told me in a phone interview. “As we’ve become more secular in some communities … there’s an increasing hunger for that space … to come together and explore this topic.”

The New York festival, which took place around Halloween, featured a range of explorations: a class on how to write your own obituary, doctors talking about dealing with their patients’ deaths, live musical performances exploring themes of loss and bereavement.

Participants speak at the the Nocturnists storytelling event where doctors from Mount Sinai, New York University, Columbia, and other local hospitals share their personal experiences with death.

What connects each event is a sense of intentionally: that people are actively setting aside time and space to deal with a weighty topic.

Both Wolfe and Zuckerman identify similar elements of what that “coming together” looks like. Ideally, both say, it involves elements of ritual, community gathering, and a sense of meaning: How do we conceptualize a person’s death as part of a bigger picture?

Wolfe suggested that we might be better off looking at this “coming together” not as a nonreligious event but as an expansion of the definition of what religion means. At least two Reimagine events are, fundamentally, immersive theater performances. In one, participants are invited into a phone booth to have conversations they wish they’d had with somebody who has died.

In another, participants role-play members of a fictional bereavement support group. Speaking about these events, Wolfe argued that the lines between art, ritual, religion, and performance are deeply blurred.

“The boundaries between art and religion are more porous when it becomes a practice explored with intention,” he said. What matters is the sense of significance shared by participants: “Having a practice, a shared system, allows us to connect in ways that give us a sense of comfort and something we know we can turn to.”

The idea or combining artistic creation and end-of-life ritual is far from new to Janie Rakow, president of the International End of Life Doula Association. As a “death doula,” Rakow works in hospices, helping those facing the end of their lives develop rituals and practices around their death. While she works with patients from a wide variety of religious backgrounds through the hospice, she tailors her work and approach to the individual in question.

One of the most important parts of the end-of-life process, she says, is the act of creation. She helps her patients develop what she calls “legacy projects”: individual artistic works, from a memory box to audio letters.

“Everyone has a legacy,” Rakow says. “So [I ask myself] what kind of legacy project could we possibly create with this person to really leave behind a sense of who they are or were?”

Next, she asks patients to help plan their own death — where they would like to be? What music they would like to be listening to?

“There may be some ritual work done around that,” she says, even if it’s “as simple as surrounding their bed, holding hands, saying a prayer or saying poetry, reading something to them, [or] lighting a candle.”

The point is to help dying people take an active, creative role in the story they leave behind.

Doula Craig Phillips pauses before entering the room of a person who is near death at the Gilchrist Hospice in Baltimore on June 6, 2016.

Often, Rakow says, these rituals are tailored to individual passions. She gives the example of one man she worked with, who was dying from ALS, a degenerative neurological condition that prevented him from being able to move. With his wife, Rakow created a series of guided visualizations for the man, who loved hiking, “so we would bring him with his eyes closed on the most detailed and specific hike that we could from the very beginning to hiking all the way through.”

She’d walk him through ”smelling the forest and feeling himself walking up the hills and hearing the birds chirping and looking over at the crystal clear lake. And the more descriptive we could get, we were able to bring him back into his body that he wasn’t able to use through his mind.”

Secular rituals present their own set of challenges

One of the most difficult parts of creating secular death rituals is compensating for the lack of built-in community, or built-in structure, that often accompanies more established religious traditions.

Zuckerman pointed out that the secular bereaved don’t necessarily have a clear road map, or community support, to help them deal with the pragmatic aftermath of a death.

“One of the biggest problems for secular culture [is that] you have to cobble together and make it yourself. If you want your kid to have a bar mitzvah, it’s all taken care of. You want your kid to go through confirmation class in the Episcopal Church? Boom, they’re enrolled. If you want to do a secular version of that? Good luck. You’re on your own. You have to figure it out, explain it to people, rent the space, find people, figure out how to write up your own program. … It’s a lot of effort.”

The lack of intentional secular communities, Zuckerman said, only intensifies this problem. “With religious communities,” he said, “not only is the structure of the funeral in place, but there are going to be people who are going to immediately sign up to cook dinner for your family for a month and they’re going to deliver food to your doorstep and they’re going to help you get your kids to school and they’re going to do a lot for you. And when you’re secular, you don’t have those kinds of resources.”

Pallbearers escort the casket to the altar during the funeral for Watertown firefighter Joseph Toscano at St. Patricks Catholic Church in Watertown, Massachusetts, on March 22, 2017.

For some secular Americans, the idea of having a “chosen family” — a close-knit network of friends — helps fill in the gap. Just as Friendsgiving has become a phenomenon among urban millennials, friendship networks more broadly have become an increasingly vital part of social cohesion, replacing both extended family structures and traditional organized religious communities.

That was certainly the case for Explosion. She cites her friends’ involvement in making the service possible at a time when she didn’t feel capable of planning herself. “I needed camaraderie and community,” she said, and I feel like I had it.”

At the same time, she says, she had less of a blueprint for how to cope with the next stages of grief after about six months.

“People go back to their own lives,” she said. “And it was hard to feel that sense of community. Without a church or synagogue to bind us together, it maybe felt like it dissipated. People missed their friend and their co-worker. But for me, it’s like, I miss my husband who lived with me, and it was hard to feel that sense of community after time had passed.”

The next step forward might be intentional secular communities

Explosion’s story points to a wider tension in the world of secular funerals and the creation of secular culture more broadly. On the one hand, the benefits of the “unbundled” religious landscape, for many secular Americans, lie in the opportunity to create truly new, individualistic rituals and experiences. We have the opportunity to curate our identities and public personae event after death, creating experiences that feel unique to us.

On the other hand, what risks getting lost in the process is precisely that feeling of collective identity that demands subsuming our individuality in a wider whole. Religious rituals and language, from Catholic ceremonial liturgy to the Salat al-Janazah, may not feel fully and uniquely “us,” but they nevertheless define and orient a wider community and give us a sense of shared values.

The 19th-century sociologist Émile Durkheim saw religion primarily as a shared construction of identity; in his seminal 1912 work The Elementary Forms of Religious Life, he wrote, “The most barbarous and the most fantastic rites and the strangest myths translate some human need, some aspect of life, either individual or social.”

As more and more Americans leave organized religion, the next question is whether, and how, many of them will gather together, and how an increasingly individualistic conception of identity can be reconciled with the real, human need for group belonging. As secular funerals and death rituals become the new standard, we may see some of these rituals become more group-centric.

For Explosion, for example, the process of grieving led her to an unexpected new ritual. During her husband’s life, she said, she often played a video game called Destiny with him, looking up the location of objects hidden in-game and giving him hints to find them. While she never particularly got into the game, she said, she enjoyed playing it with him. After his death, she started watching YouTube videos of people playing the game, or its sequel, to remember the time they’d shared. Then she decided to buy the game’s sequel to play it herself.

“I’ve been playing this game I wouldn’t have played if he hadn’t died. And it’s been meditative for me. Finding the little things, like doing these things we used to do, felt like a pilgrimage in a way,” she said.

Sometimes, Explosion communicates with other players in the game online. While she’s only told a few of them about her personal history with the game, she’s nevertheless found a community that can accompany her in a time of grief.

“When we do a big quest or a raid together, there’s always a moment for me of, you know, okay, he would have done this. He did this in the old game. Now it’s me kind of picking up this mantle.”

The secular funeral liturgies we see in the future may transition from being individualistic to being based on other nonreligious elements that bring a community together. They may involve the music of My Little Pony or the playing of video games.

Ultimately, they’ll represent two fundamental human needs. First, to make sense of a beloved’s death. And second — and just as importantly — to not do it alone.

Complete Article HERE!