It’s game night on the top floor of a bank building in Medford, Mass., and 25 people have divvied themselves up around the circular tables. Four women, none of whom know each other well, are seated near the snacks busily discussing their future burials.
Katie Wallace, a native of nearby Somerville, is confident she wants to be cremated. But it’s a bit more complicated for her. The urns are accumulating. “I have a room in my house where I have the ashes of six different people,” she says. “So I have to figure out what to do with all of those people.”
As a lavender dusk settles outside the floor-to-ceiling windows, the women chuckle about whether Wallace should pass this “inheritance” on to a younger relative or, perhaps, invest in a columbarium.
This isn’t just small talk. It’s part of the game. These woman and men, all of whom are older, have gathered to play a card game — one with chips, a deck of cards, and a winner and losers. But this isn’t poker or blackjack.
Question 15: What music do you want to be listening to on your last day alive?
The game, called My Gift of Grace, aims to facilitate conversations about the end of life. It’s part of a growing trend: efforts aimed at encouraging talk of death well before it is imminent. From The Conversation Project to Honoring Choices and another card game called Go Wish, all seek to find ways around the usual distaste for facing death in advance, so that people can better control the care they receive at the end.
“I think we are on the early cusp of what I hope will become a groundswell of change,” said Dr. Lachlan Forrow, director of the Ethics and Palliative Care Programs at Boston’s Beth Israel Deaconess Medical Center, in a phone interview.
The idea for this game started when The Action Mill, a Philadelphia-based design firm, was interviewing a hospice nurse, remembers Nick Jehlen, who ultimately led the game’s design team.
“She said: ‘The most important thing you could do to make my job easier would be if you could make sure that everybody who shows up for me has had one conversation about the end of their life with their family, just one.’ ”
Dr. Forrow says that having that one conversation is a lot harder than it sounds; for most people, talking about death is incredibly difficult. “It is like the biggest, existential, overwhelming, huge issue for anybody: that we are mortal.”
But Jehlen and his team weren’t deterred. They set out to make that conversation a little bit easier.
A Game About The End Of Life
The first step for the design team was thinking about everything they wanted for the end-of-life conversation: they wanted it to be done in person, with a family sitting around a table together, and everyone having a pleasant time.
A card game checked all the boxes. “Nobody gets together with their buddies to play poker just to pass some cards and some chips around,” Jehlen says. “They actually go to tell stories and share insights.”
Susanne Wilkinson, one of the women sitting with Katie Wallace in Medford, says the idea of a game about the end-of-life made her “a little dubious,” but, she says, “I am more curious to see what comes out of this.”
Wilkinson, of Somerville, is willing to withhold judgment. She believes that “as a society we haven’t done this very well yet, so I am looking for any angles that might provide some avenues.”
Jehlen and the rest of his design team had the same thought. So they designed a deck of cards with a different question printed on each card.
Question 3: Write your own epitaph in five words or less.
Question 5: If you needed help going to the bathroom today, who is the first person you would ask to help you? Who would you never be able to ask?
Question 11: In order to provide you with the best care possible, what three non-medical facts should your doctor know about you?
Question 15: What music do you want to be listening to on your last day alive?
Every person answers the questions, and the other players decide whether an answer deserves a ‘thank you chip.’ The blue poker chips are meant to express gratitude for a thoughtful answer, and it’s those chips that end up determining the winner.
Jehlen says the design team wanted everyone in the family participating. The goal was to avoid focusing solely on the one person that might be nearing the end of their life.
Wilkinson particularly appreciated this element of the game. While death can be a lonely experience, she thought “the fact that it allowed you to connect with other people makes it satisfying.”
The game also sought to focus on life as well as death, since having a good death experience is often about understanding what one values in life.
Jehlen says he struggles to capture the game in words. “The problem we always run into is explaining the game is a little bit like explaining a joke.”
But he can’t remember a My Gift of Grace game where there wasn’t laughter. Recently, he was with a group of health care professionals, “in the middle of these 25 people playing the games,” he remembers. “I closed my eyes and it was just like rolls of laugher.”
Dr. Forrow was not involved in the development of the game but when he checked it out he found it to be “a wonderful blend of serious and humor.” He says that’s important but he tempers his enthusiasm.
Is The Game A Winner?
Dr. Forrow believes the jury is still out. He says there is one ultimate test for this game and for all the other efforts to facilitate an end-of-life conversation.
“We’ll find out whether it’s helpful or not by seeing people using it,” Dr. Forrow says.
The Action Mill has sold about 2,000 games since it went on sale in December.
Dr. Forrow thinks a lot more people need to be having this conversation. And, despite seeing progress, he says, “I don’t actually think anybody is yet doing a good job.”
In an effort to get more people playing the game and having the conversation, Jehlen and his colleagues had the idea of public game nights. Wallace and Wilkinson attended one of the 10 games nights that have been held across the country so far.
While the game was designed for families to play during the holidays, Jehlen says, “the feedback we started hearing was that actually playing the game, talking about end-of-life issues with strangers seemed like it was easier than maybe having this conversation with your family.”
Wallace would agree, but she has a word of warning. She says it’s comfortable either with “complete strangers or very close friends.” But when these game nights happen in small communities, there is the possibility of seeing “people you know in a very casual way,” and that, she says, is “a little odd.”
Jehlen has been viewing these public game nights as something of a warm-up for a family game night. But it’s not just families and strangers, it’s health care professionals too.
Where Does Medicine Come In?
To Jehlen’s surprise, “many of the people who are buying and playing the game are actually health care professionals.” About a third of their sales have been to hospitals, hospices and other health care groups.
On the one hand, this could be a vote of confidence for the game. But on the other hand, Dr. Forrow says, it’s helpful to have this end-of-life conversation in a non-medical context. He worries that when sitting in a doctor’s office, medical concerns dominate the conversation.
“I adamantly, firmly believe that for the conversations to be really about what really matters that they should start maybe even as far away from the hospital doctor’s office as they can,” Dr. Forrow says, “because these are much more fundamentally human issues than medical issues.”
Despite that fundamental nature of the topic, Dr. Forrow believes that it can be helpful not to think about it in such broad terms. “I think focusing on some simple concrete task that you did or did not do, like designating a health care proxy,” can make it easier, he says.
Jehlen admits there aren’t yet clear, concrete steps to take after playing the game. While many of the questions in the deck have a medical undertone, right now there isn’t a guide to help people translate game answers into a Living Will or an Advanced Care Directive. Although, he says, the game’s maker is considering putting downloadable end-of-life care forms on the website.
Regardless of what the next official steps may be, Susanne Wilkinson knows her next move: Before leaving game night, she said she wanted to borrow the game and play it again.
Leslie Christian recently added unusual language to her living will: After death, she hoped her remains would be reduced to soil and spread around to help out some flowers, or a tree. In essence, compost.
“It seems really gentle,” said Ms. Christian, 71, a financial adviser. “Comforting and natural.”
A bill before the Washington State Legislature would make this state the first in the nation — and probably the world, legal experts said — to explicitly allow human remains to be disposed of and reduced to soil through composting, or what the bill calls recomposition.
The prospect has drawn no public opponents in the state capital as yet, but it is a concept that sometimes raises eyebrows. Funeral directors say a common reaction to the idea, which has been explored and tested in recent scientific studies, is to cringe.
“There’s almost a revulsion at times, when you talk about human composting,” said Brian Flowers, the managing funeral director at Moles Farewell Tributes, a company north of Seattle that supports the bill.
In truth, composting is an ancient and basic method of body disposal. A corpse in the ground without embalming chemicals or a coffin, or in a quickly biodegradable coffin, becomes soil over time.
But death certificates in many states include a box that must be checked for burial or cremation, with no other options. Aboveground composting, through a mortuary process that requires no burial or burning of remains, is a new category without regulation about how it should be done or what can be done with the compost. What that means is that hardly any funeral director — even in states where laws about human remains are loosely worded — would risk offering it without state permission.
Pete Seeger, the folk singer, crooned about the idea: “If I should die before I wake, all my bone and sinew take. Put them in the compost pile to decompose a little while,” goes the song “In Dead Earnest.”
“When radishes and corn you munch you may be having me for lunch.”
In America, there are regional patterns to what comes of bodies after death. In the South and Midwest, where religious or cultural traditions run deep, more families opt for caskets and concretes vaults, and fewer choose cremation, experts say. In the Northeast, where family roots sometimes extend back centuries, people often favor burial in local cemeteries alongside ancestors.
In the Pacific Northwest, by contrast, death is treated somewhat differently, for reasons that sociologists and religious experts have long pondered. It’s a region where transient newcomers have defined the culture since pioneer days. Church attendance is among the lowest in the nation. Preservation of the environment is a central concern.
In Washington State, a larger percentage of residents are cremated than in any other state. Washington has more “green cemeteries,” which encourage a return to nature without manicured lawns and chemicals, than most states; only California and New York have more. And laws allowing physicians to help terminally ill patients hasten their deaths, known as “death with dignity,” were pioneered in the Pacific Northwest.
“It’s this interesting combination of environmental sensibility and individual choice,” David C. Sloane, a professor of public policy at the University of Southern California, said of the Northwest region. Now the prospect of legalized human composting, he said, puts many of those regional impulses in a spotlight. “It’s a test case for seeing how people think,” he said.
A container used in a study of human remains and composting last year at Washington State University.
Jamie Pedersen, a Democratic state senator from Seattle, is leading efforts to pass the legislation to permit a composting process after death.
Democrats control both chambers of the State Legislature, and Mr. Pedersen, the bill’s sponsor, said he had enlisted support from Republicans as well. Gov. Jay Inslee, a Democrat, has taken no position, a spokeswoman said.
At a hearing this month, no one spoke in opposition, though a state association of funeral directors said that it hoped clearer information could be added to the bill about where composted remains could be distributed. It was uncertain, too, whether such a measure would be seen as a priority during a legislative session crowded with issues that may be easier for politicians to talk about and win points on.
The bill would also legalize a separate process sometimes known as water cremation or alkaline hydrolysis. Under that process, already legal in 16 states, bodies are dissolved using a mixture of heated water and lye, leaving behind bone fragments and a sterile liquid.
People are drawn to the idea of aboveground decomposition mainly for environmental reasons, Mr. Pedersen said. There’s no coffin, no chemicals, none of the fossil fuels that would be needed for cremation, and no expensive cemetery plot required. Some religious traditions also favor ideas of simplicity and of earth returning to earth.
Though the process sounds simple, it would not be cheap. Preliminary estimates suggest that it could cost at least $5,000 — less, perhaps, than an elaborate burial service, but more than the most basic cremation.
In a study last year at Washington State University, six bodies donated for the research were placed in a closed container, wrapped in organic materials like alfalfa, then bathed in a stream of air warmed by microbes, and periodically turned. Lynne Carpenter-Boggs, a professor of soil science and sustainable agriculture and the lead researcher in the study, said that after about 30 days, the bodies essentially became soil.
Fears that composted remains might smell bad or contain toxic elements — from dental fillings, for example, or pharmaceutical residues — were allayed, Dr. Carpenter-Boggs said. She said that the heat generated by micro-organisms broke down organic matter and pathogens, and levels of pollutants like cadmium and mercury were within federal limits.
“It certainly is feasible that families would take home a small portion that they could keep for a long time,” Dr. Carpenter-Boggs said. “Or families could bring home a small amount that would be interred into their landscape, placed under a loved one’s favorite tree, similar to what people do with cremains.”
Katrina Spade, the founder and chief executive of Recompose, a Seattle company that hopes to build the first facility to use the new method and conduct funeral services based around it, said the movement toward cremation — now used in more than half of deaths in the nation — has led to an erosion of essential rituals. Remains are often just picked up from a crematory, she said, and that’s that.
“This is not simply a process to convert bodies to soil; it’s also about bringing ritual and some of that ceremony back,” Ms. Spade said.
Ms. Christian, the woman who is hoping recomposition will be an option after she dies, says she has long been uncomfortable with the other choices. She has ruled out burial. And she does not like the idea of cremation because of environmental costs — emissions and climate impacts of fossil fuels used in the burning process. But her friends remain divided on the issue.
“The vast majority are like, ‘That is so cool,’” she said. “And then the other response is, ‘Oh, gross.’”
In recent years, many Americans have begun looking for new ways to approach death. The death-positive movement supports people who prefer to die at home, and even those who wish to care for the bodies of loved ones the way many families did before the rise of the funeral industry. Historian Karol K. Weaver took a close look at that earlier approach, studying the business of death in early nineteenth century Pennsylvania, when care for the dying and dead fell mostly to women.
In those years, Weaver writes, watchers or watch-women—sometimes also referred to with the more generic term “nurse”—tended to the dying. These might be friends, family members, or hired help.
The watchers offered physical care and prayer, and organized visits by clergy and loved ones. Another important part of their job was observing the attitude of the dying person. If they could report a Good Death—characterized by courage and faith—it would comfort the other survivors. On the other hand, a Bad Death filled with struggle and pain could make for a cautionary tale aimed at the insufficiently pious.
Weaver writes that the final and most important job of a watcher was to verify that her charge was dead, observing the cessation of breath and even shaking the body to be sure no life remained.
Once the watcher’s work was done, “layers out of the dead” would wash, dress, and groom the body. They would also close the mouth of the deceased, using a tied cloth or a stick propped between the chin and breastbone, and use coins or other objects to keep the eyes closed. Layers out might also perform the skilled jobs that would later fall to undertakers, such as removing internal organs, blocking orifices, and slowing putrefaction by applying alum-covered cloth or filling body cavities with charcoal.
Like watchers, some layers out were unpaid family members or friends, but others were paid professionals. Looking at Philadelphia city directories from the early nineteenth century, Weaver found business listings for these women. Sometimes, they also advertised themselves as nurses or midwives—jobs that involved intimate care in a domestic setting just as laying out the dead did. Some listed themselves as “widows” in the directories. Weaver writes that this title suggested their connection with death and also explained the lack of a husband’s income that forced them to work for money.
Over the following decades, women’s death work declined. Increasingly, people died in hospitals rather than at home. With the Civil War came the need to transport Union soldiers’ bodies home, inspiring the rapid growth of undertaking as a business—often a father-and-sons affair. Now, families had a one-stop shop for coffin, burial plot, hearse, and the care and preservation of the body.
By 1867, the Philadelphia directory listed 125 male undertakers, one female undertaker, and four female layers out of the dead. The death industry as we know it today had been born.
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.
With more than 1.4 million Americans receiving hospice care every year, the demand for high-quality end-of-life care is only projected to rise in years to come. In Minnesota, a “death-positive” movement is to thank, experts say.
While the aging population is growing rapidly, a broader cultural shift is also largely to credit: More doctors are encouraging and accepting of hospice, more mediums are portraying it positively, and more people are discussing and planning for end of life.
“There is a huge death-positive movement happening now,” Christin Ament, organizer of Death Cafes in the Saint Paul area, told the Pioneer Press.
Death Cafes are just one example. Created in 2004, the concept is to offer a place for people to eat, drink and talk about death. Beyond Minnesota, thousands of death cafes are currently operating in more than 60 countries worldwide.
Similarly, the spike in hospice use transcends any one state. Hospice admissions and utilization in the U.S. continued to rise in the second quarter of 2018, according to the latest trends report from Atlanta-based analytics and metrics firm Excel Health.
Experts say the biggest reason for the shift is a change in attitude among doctors, according to the Pioneer Press. Traditionally, doctors have focused on lengthening life by whatever means necessary, opting for curative care as opposed to services more closely aligned to patient comfort.
“At times, you were fighting against what the body wanted to do,” Lindsey Pelletier, a hospice nurse who formerly worked in intensive-care units, told the Pioneer Press. “At times, you were doing something unnatural.”
But now, hospitals have entire teams focused on palliative care, and doctors respect that high-quality end-of-life care is sometimes best for terminal patients.
In addition to making patients’ final days more comfortable, hospice care has also been shown to save money by curbing overall health care spending. With health care costs rising at an unsustainable rate, hospice costs only a fraction compared to many alternatives.
For example, intensive care bills from hospitals can cost thousands of dollars per day, while daily Medicare reimbursement for hospice is $180.
Besides death cafes, the international rise of “death doulas” is also emblematic of the death-positive cultural shift. A type of end-of-life care expert, a death doula carries out a dying person’s plan for how and where he or she wants to die, while also providing spiritual guidance and holistic support.
Some hospice companies have even begun to work with professionally licensed doulas as a way to separate themselves from competitors. On a high level, baby boomers are partially to thank to the the shifting perception of death, experts say.
“My particular demographic is a take-charge-of-my-own-life kind of demographic,” Synthia Cathcart, Compassus’ vice president of clinical development and education, previously told Home Health Care News. “We see more and more openness about, when there isn’t another option given, really embracing that stay-at-home, quality-of-life conversation.”
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.”
Death is our universal condition, and every culture has ways to deal with bereavement and loved ones’ remains. While these rites vary greatly, it is becoming apparent that many of the world’s traditional burial practices are unsustainable in the face of overpopulation and climate change. All the funerals I have attended have their roots in Christianity, and require that the deceased either be cremated, or buried in a coffin and vault. In America alone, it is estimated that every year traditional burials result in the deposit of: “20 million feet of wood, 4.3 million gallons of embalming fluids, 1.6 million tons of reinforced concrete, 17,000 tons of copper and bronze, and 64,500 tons of steel being.” (The New York Times)
It naturally follows that the toxins and heavy-duty materials used to embalm, preserve and contain bodies has a detrimental effect on the environment. While cremation was thought to be an ecologically sound alternative, the procedure actually causes high levels of carbon dioxide to be released into the atmosphere. In light of the somber findings of the UN Intergovernmental Panel on Climate Change’s (IPCC) report on climate change, it is clear that drastic steps are needed to prevent the environmental collapse. It is not only what we do during our lifetime that can affect change: innovative eco-burials are proving that we can reduce our carbon footprint even in death.
Funeral rituals vary greatly across the globe, from the New Orleans’ Jazz Funeral, which blends West African, French, and African-American traditions, to the Turning of the Bones in Madagascar, where relatives commemorate the diseased by dancing with their bodies. My personal favorite is the sky burial, a tradition that is prevalent in Tibet, amongst other cultures, and which involves depositing bodies at high elevations so that they may be consumed by vultures. Having attended only a handful of funerals in my lifetime—all of which were in Western cultures and did not include an open casket—the notion of seeing a dead body is completely foreign to me, not to mention the inevitable scavenging that follows a sky burial.
However gruesome the ritual may appear to the outsider, it stems from real environmental and spiritual practicalities. Indeed, in many parts of Tibet and Qinghai, a lack of timber and fuel made cremation impossible, just as the sturdy and rocky grounds prevented earth burials. Furthermore, the ritual is considered to be an act of charity on the part of the deceased, who makes a final offering to other sentient beings.
The notions of compassion and impermanence are essential to Vajrayana Buddhism, and sky burials are a reflection of these virtues. In fact, charnel grounds are also cited in the Early Buddhist canon; in the Satipatthana Sutta, the Buddha encourages his followers to reflect on impermanence by observing dead bodies undergo various stages of decomposition. Unfortunately, with the number of vultures diminishing every year, sky burials are becoming somewhat of a rarity.
With overpopulation rising, funeral practices around the world are facing similar difficulties. In Korea, for example, the lack of burial space has forced many families to dig up the remains of their ancestors and have them cremated. Add to this the imminent threat of climate change, and it is no wonder that funeral practices around the world have to adapt.
Vulture on the Tibetan plateau.
Fortunately, a number of people and organizations are coming up with innovative solutions to this problem. There are now several companies in Korea who specialize in transforming people’s cremated remains into colorful beads (this provides an alternative to the urn, which can appear eerie to some). Others have opted to have their remains turned into reef balls that are then placed in the ocean, creating a natural habitat for marine life.
For those who want to bypass cremation because of its negative effects on the atmosphere, there are now a number of green alternatives that promote the natural decomposition of bodies: allowing remains to seep directly into the earth and provide sustenance for the surrounding flora and fauna.
In order to be environmentally friendly, biodegradable materials are used to make cloths, shrouds and caskets; and artificial markers such as tombstones are replaced by naturally occurring flora, or a GPS system. According to the non-profit organization The Green Burial Council, going green also has its financial benefits, since eco-burials can significantly lower the cost of posthumous arrangements. For example, prices for a complete natural burial at Honey Creek Woodlands (Georgia) start at US$3,400 —approximately half the cost of a typical modern funeral.
For better or for worse, concerns over the future of our planet are forcing us to make changes to age-old traditions. It is perhaps for this reason that the Catholic Church, and many funeral industries, have embraced eco-burials; and in 2015, the Funeral and Memorial Information Council found that 64 percent of adults aged 40 and up would consider having a green burial. Linda Holzbaur, a member of the Greensprings Natural Cemetery board, explains that when she buried her two family members, everyone “chipped in” with digging the grave, making it a very personal experience for all involved. Artist Jae Rhim Lee, who devised a burial suit made of flesh-eating mushrooms, encourages the West to face death head on and address “the actual process and acceptance of decomposition.” (TedBlog)
In this way, natural burials not only help to protect our planet; they also provide us with an opportunity to rethink death and to incorporate lessons of compassion, interconnectedness, and impermanence into our rituals.
