Category: Cultural Expressions

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Obituaries are the only redemptive news anymore

By Philip Kennicott

Toni Morrison is dead. So are D.A. Pennebaker and Aretha Franklin, and Philip Roth, Stephen Hawking, Ursula K. Le Guin, Milos Forman and too many others to name, even when limited to artists and writers who have perished in the past few years alone. By some accounts, two people die every second, thousands every hour, tens of millions every year. But at this moment in American life, the death of our best people has become a collective lifeline and refuge for our anxieties. It sometimes seems that the obituary is the only news that makes us feel whole.

Morrison was our essential conscience, a writer of narrative brilliance and moral clarity. The magnitude of her loss, at this moment in our descent into barbarism, is incalculable. But to spend time today with her work, with memories of her life and the testimony of those who knew her, is infinitely more rewarding than reading about all the other terrible things that have happened in the past few days. The deaths of artists and other creators make us reflective, and we live at a moment when looking back is much easier than looking forward.

We also crave the reassurance that we are not, as a species, entirely spent. Morrison died only days after two mass shootings, which are not only a regular fixture of American life, but also a recurring reminder of our political paralysis and the corruption of our democracy. We are in the midst of a trade war, markets have plunged, Greenland is hemorrhaging ice and our president tweets racism to inflame a hungry audience of white nationalists who dream of a world without people like Morrison in it.

Death and remembrance, at least, come with the customs and norms that have been shredded in most of the rest of public life. If nothing else, death still inspires a pause in ordinary life and, in the case of artists, a respectful consideration of their habitually ignored accomplishments. The reflective look back on a life and a body of work such as Morrison’s is ultimately celebratory, a chance to think the best of another person and, by extension, ourselves. Artists, performers, scientists, writers and other creators rarely “make news” in the same way politicians do, even though their influence on our culture is greater, deeper and more meaningful. The obituary is a belated observation and acknowledgment that people like Morrison, in fact, made news every day through their work. They formed the deeper part of the minds that our pollsters seek to measure and quantify in the frenzied haste of the news cycle. They are the atmosphere of American culture, while all else is merely weather.

Obituaries are a paradox of sorts, a distraction toward meaningfulness, a diversion to what really matters. The response to the rest of the news is often an impulse to escapism, a turning away. But while Morrison shares space with the usual firehouse of bad news, her passing offers at least one impulse to go deeper, to read more, dig in, think more critically and disconnect from the ephemera. Obituaries like the ones that have been written about her in the past day are even better than the usual “good” news, which is often little more than a reminder that somewhere, somehow, someone has done an unnecessary kindness; obituaries are redemptive on a grander scale.

We seem capable of only two modes of existence: panic and sadness, the former fast-paced and full of collateral damage to the world around us, the latter at least sometimes constructive and reflective. America has experienced periods of intense reflection around death in the past, as when the last remaining veterans of the Revolutionary War were dying in the middle of the 19th century, leaving people to wonder whether there were any steady voices and clear heads to steer us away from, or through, the accumulation of civil strife and political violence. The deaths of those who fought in World War II offered an occasion to think about the fraying of the old 20th-century social contract, the dissolution of the bond between the generations enshrined in key social-welfare programs, and the extinction of American optimism — that we might live in a society without poverty, without unnecessary suffering, with genuine opportunity and social mobility.

But the death of an artist is different from the loss of political leaders, no matter how wise or benevolent, or the larger passing of a generation, which has continued since the beginning of time. Morrison’s work remains with us, intractable, urgent and uncompromising, and it is no less effective today than it was on Monday. It is curious to listen to people on television debating the effectiveness of this policy or that plan, often arguing themselves into the absurdity that because nothing has yet worked, therefore nothing new should be attempted.

Meanwhile, the work of artists outlives them, operating on minds too young to be cynical. Politicians die and, if they’re lucky, are memorialized for having fixed something in the broken world they inherited. Artists die, and we flock to what they left behind, reanimating it, refreshing its meaning and reincorporating it into the body politic.

If you want to change the world, authentically and for the better, would you live your life like a politician, or a businessman, or a pharmaceutical executive or Donald Trump? Or would you live it like Toni Morrison?

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Emptiness and Filling Out Forms:

A Practical Approach to Death

Dying with compassion means having a plan in place for those left behind. A practitioner recounts how she navigated the process with her dharma friends.

By Rena Graham

As a Tibetan Buddhist practitioner, I am constantly reminded that we never know when death might approach, but for years, I’d avoided dealing with one of the most practical aspects of death—the paperwork. I was not alone: Roughly half of all adults in North America do not have a living will. Then recently, I suffered a near-fatal illness that left me viscerally aware of how unprepared for death I was, and I made a pledge with two of my friends to get ready to leave our bodies behind for both ourselves and the people who survive us.

Bridging the end of December 2017 and the beginning of January 2018, I spent a month in a Vancouver, British Columbia hospital with a bacterial lung infection that had also invaded my pleural cavity—the first time I’d come down with a severe illness. After ten days in an intensive-care unit, I was moved to a recovery ward where I suffered a relapse. I spent my 62nd birthday, Christmas, and New Years with strangers in the hospital.

One night in the ICU, while I was partly delirious and falling in and out of sleep, I had a vision of a deceased friend reaching out to me. From what felt like disengaged consciousness, I looked down at my body on the hospital bed and realized I wasn’t ready to die. I hadn’t studied my lama’s [teacher’s] bardo teachings to navigate the intermediate state between death and rebirth, and did not want to take that journey without a road map. It didn’t matter whether this was a drug-fueled hallucination or an actual near-death experience. The important thing is that I rejected death, not out of fear, but through a recognition of the dreamlike nature of reality. After this experience, I felt that my attachment to this life and the things in it had diminished. I no longer wanted to ignore what came next. I wanted to be prepared. 

When I told my friends Liv and Rosie about this vision, we agreed to study the bardo teachings together once I’d had a couple of months of recuperation. By March, however, our plans shifted. Rosie had heard about a man (I’ll call him Ben) who had died on Lasqueti Island, an off-the-grid enclave in Canada’s Southern Gulf Islands that a local cookbook once described as “somewhere between Dogpatch and Shangri-La.” He had left his closest friends without any instructions. They had no idea if he had a family or where they might be.

“And he left an old dog behind!” Rosie said, “Can you imagine?”

“Not the bodhisattva way to die,” I replied, referring to the Buddhist ideal of compassion. I  also imagined what mess I might have left, had I not made it. 

Promising they would never leave others in such a quandary, Ben’s closest friends created a document called the Good to Go Kit, which detailed information required for end-of-life paperwork. (It is now sold at the Lasqueti Saturday market to raise funds for their medical center.)

“I’ve been wanting to make a will for 20 years,” said Liv, who would soon turn 70, “but research throws me into information overload, which adds to the emotional overwhelm I feel just thinking about it.”

“What if we did this together instead of studying the bardo?” suggested Rosie, who was in her early 50s.

Writing a will, figuring out advanced healthcare directives, and noting our final wishes didn’t have the mystical lure of bardo teachings, but we set that aside for a year while we took on this more practical area of inquiry. 

To use our time wisely, we set several parameters in place. We decided to meet one weekend a month to allow time for research and reflection between meetings, and we chose to keep our group small for ease of scheduling and to allow us to delve deeper into each topic.

 “I’d like this to be structured,” said Liv, “so it doesn’t devolve into a social event.”  

Rosie and I agreed but we knew better than to believe there didn’t need to be some socializing. She offered her place for the first meeting and said she’d cook. 

“We’ll get our chit-chat out of the way over dinner,” she said. “Since we can all be a little intimidated by this process, we have to make it fun.”

Later in March at Rosie’s garden suite, we sat down to dinner and Liv passed out copies of “A Contemplation of Food and Nourishment,” which begins with the appropriate words: “All life forms eat and are eaten, give up their lives to nourish others.” The prayer was written by Lama Mark Webber, Liv and Rosie’s teacher in the Drikung Kagyu school. (I also study with Lama Mark, although my main teacher, Khenpo Sonam Tobgyal, is in the Nyingma lineage.)  Turning our meetings into sacred practice seemed the obvious container to keep us on topic.

After dinner, Rosie rang a bell, we said a refuge prayer and recited the traditional four immeasurables prayer to generate equanimity, love, compassion, and joy toward all sentient beings.  

We traded our prayers for notebooks and reviewed our Good to Go Kit. Rosie smiled at the expected question of pets—including the name of the person who would be caring for the pet, the veterinarian and whether money had been set aside for their expenses. The form also asked whether we had hidden items or buried treasure.

Liv laughed and said, “People still bury strongboxes in their backyards?”

My answer was more prosaic: “Storage lockers.”

Rosie, Liv, and I are all single and childless. We are all self-employed and independent and have chosen Canada as our adopted homeland, meaning we have no family here. So we considered what roles friends might play and focused on those who were closer geographically than sentimentally. 

Pulling them in to act on our behalf seemed like such a “big ask” as Rosie said, but it was time to get real about our needs. The three of us shared our feelings about involving friends outside the dharma versus those within. 

When I was in the ICU, my friend Diane visited on several occasions and later told me she remained calm until she reached her car, where she cried uncontrollably. In marked contrast, my dharma friend Emma calmly asked what I needed and didn’t make much of a fuss. My Buddhist friends tend to view death as a natural transition from one incarnation to the next, while other friends may see it in more dire terms: as a finality or even failure. For end-of-life situations, asking non-Buddhist friends for limited practical support seemed kinder for all involved. 

We started to familiarize ourselves with the responsibilities of someone granted power of attorney for legal and financial proxy and enduring power of attorney for healthcare. Months later, we agreed our network of “dharma sisters” would be the perfect fit. While we hope to maintain our ability to make decisions for ourselves, should we require long-term care, we felt the baton could be passed between a dozen or so trustworthy women. We have since spoken casually about this with a number of these women and have made plans to organize a get-together and discuss our plans in greater detail, offering reciprocal support for what the Buddhist author Sallie Tisdale calls “the immeasurable wonder and disaster of change.” 

We concluded our five hours together by dedicating the merit and reciting prayers of dedication and aspiration. Long-life prayers for our lamas were offered, a bell rung, and heads bowed. Without the need for further conversation, we made our way into the chilly spring evening, silently reflecting on our new endeavor.

The next meeting and those following included menus and discussions that varied widely. Our research grew monthly with documents from government agencies, legal and trust firms, and funeral homes. None of which felt specific to Buddhist practitioners, until Rosie told us about Life in Relation to Death: Second Edition by the late Tibetan teacher Chagdud Tulku Rinpoche. This small book is out of print, but I purchased a Kindle copy. In the introduction, Chagdud Tulku, a respected Vajrayana teacher and skilled physician, reminds us that “[t]here are many methods, extraordinary and ordinary, to prepare for the transformation of death.” A book of Buddhist “pith instruction,” it includes in its second edition appendices that above all I found most valuable. These include suggested forms for “Durable Power of Attorney for Health Care,” “Advance Directive for Health Care (Living Will),” “Miscellaneous Statements for Witnesses, Notary and Physician,” and “Letter of Instructions.” It even includes a wonderful note for adding your ashes to tza-tsas, small sacred images stamped out of clay. We loved that idea, though we couldn’t imagine asking friends to go to that extent to honor our passing. 

We decided to use a community-based notary public to draw up our wills, but with further research, Liv realized she could also hire them to act as her executor, rather than use her bank. She found someone experienced and enjoyed the more personable experience. In contrast, Rosie and I’ve decided to pay friends now that we’ve found ways to simplify that process for them. 

Memorial Societies are common in North America and help consumers obtain reasonably priced funeral arrangements. Pre-paying services at a recommended funeral home allows us to leave funds with them for executor expenses, should our assets be frozen in probate. End-of-life insurance “add-ons” we like include travel protection—should we die away from home—and a final document service to close accounts and handle time-consuming administrative tasks. 

In her book Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying, Sallie Tisdale says, “Your body is the last object for which you can be responsible, and this wish may be the most personal one you ever make.” Traditionally in Tibetan Buddhism, the edict is to leave the body undisturbed for three days after death so your consciousness has time to disengage. Tisdale states that American law generally allows you to leave a body in place for at least 24 hours and that while a hospital might want to give you less time, you might be able to negotiate for more. 

We then turned to the thorny topic of organ donation, with Rosie and Liv both deciding against. Knowing someone would soon be taking a scalpel to your cadaver would not enhance the peaceful mind they hope to die with, while my view was just the opposite. Besides gaining merit through donation, that same scalpel image provides great motivation to leave the body quickly.

While reading Tisdale’s chapter titled “Bodies,” I began entertaining thoughts of a green burial, but after months of discussion, I ended up where we all started: with expedient cremations. Rosie wanted her ashes buried and a fragrant rose bush planted on top. Liv and I were more comfortable in the water and decided our ashes would best be left there, but not scattered to ride on the wind. We selected biodegradable urns imprinted with tiny footprints. Made of sand and vegetable gel, they dissolve in water within three days, leaving gentle waves to lap our remnants out to sea. 

By getting past the practical and emotional aspects surrounding death, Liv has found herself in a space of awe. 

“There’s a wow factor to dying that I can now embrace,” she said. 

Rosie no longer worries about who will care for her in later years. Without that insecurity, she’s left with a yearning to be as present for the dying process as possible. And I have found that my understanding of life’s importance as we reach toward enlightenment has been heightened. 

Our small sangha still meets monthly and is now studying bardo teachings in our ongoing attempt to create compassionate dying from compassionate living. As we have continued with our arrangements, we’ve reflected on what we gained from our meetings. We feel blessed for the profound level of intimacy and trust we now share. We have a deeper regard for other friendships and feel enveloped by an enhanced sense of community. And we all feel more cared for.

As Chagdud Tulku Rinpoche wrote in Life in Relation to Death: “Putting worldly affairs in order can be an important spiritual process. Writing a will enables us to look at our attachments and transform them into generosity.”

Complete Article ↪HERE↩!

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Apes and Monkeys Have an Awareness of Death

Performing Grieving Rituals and Mourning the Deceased, Study Suggests

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Researchers say non-human primates exhibit an awareness of death.

Non-human primates like monkeys and apes appear to have an awareness of death in the same way humans do, scientists have said. After analyzing over 200 years worth of research into how primates deal with death, they found common behaviors emerged—including carrying their dead, defending the deceased from threats and exhibiting a grief-like response.

There are many stories about apes and monkeys grieving for their dead. For example, a BBC documentary in 2017 appeared to show a group of langur monkeys grieving for what they believe is a dead baby—even though it was actually just a robotic spy monkey.

The same year, scientists observed a chimpanzee using tools to clean the body of a deceased group member. A female sat down with the dead male and used a firm stem of grass to clean his teeth. The practice, researchers say, suggests chimps may have a more sophisticated response to death than we currently know.

Andre Gonçalves from Japan’s Kyoto University and Susana Carvalho from the University of Oxford in the U.K. say there is a huge amount of anecdotal evidence relating to they way non-human primates deal with death—but a review of the literature to find specific characteristics and behaviors has been lacking.

“For the past two centuries, non-human primates have been reported to inspect, protect, retrieve, carry or drag the dead bodies of their conspecifics and, for nearly the same amount of time, sparse scientific attention has been paid to such behaviours,” they wrote in a study published in Biological Reviews.

In their analysis of 240 reports, Gonçalves and Carvalho showed that specific responses emerge among different non-human primate species. Often this involves carrying the dead around—especially mothers and their dead babies. Species that are unable to grasp objects—such as lemurs and tamarins—are observed trying to carry their dead even though they lack the ability.

A chimp cleaning the teeth of a deceased group member.

They also found that group members defend the bodies of the deceased and returning to the body or site of death: “Such places may hold residual information about the event which can arouse curiosity or emotional distress,” they wrote. This behavior tended to happen when an adult died, rather than a juvenile. The researchers speculate this could relate to attachments, with members needing to re-categorize from living to dead—a behavior they say is essential to the grieving process.

In one anecdote about a family of chimpanzees studied by Jane Goodall, a mother named Flo died before her son Flint had become fully independent. After her death, Flint would stare at the nest they shared and returned to the site of her death. He exhibited signs of clinical depression and stopped eating and interacting with other group members. Eventually his immune system became too weak and he also died.

In another case, an adult male howler monkey was observed staying close to the corpse of a female for five days after her death, “suggesting close proximity between these individuals in life.”

“Considering all these findings and given their cognitive abilities, we argue that non-human primates are capable of an implicit awareness of death,” Gonçalves and Carvalho wrote.

They say more research will be needed to confirm whether non-human primates are aware of death—and to what extent they are. “It’s not an all-or-nothing ability,” Gonçalves said in a statement. “Awareness of death includes things such as animate/inanimate distinction, or the sensory and contextual discrimination of living/dead. The concept of death is something we humans acquire between ages three to 10. We can infer that non-human primates have some aspects of death awareness but, thus far, only humans conceptualize it at a higher order.”

The researchers also say further investigation could help shed light on the evolution of our own funeral practices: “Given that there exists a considerable gap in the fossil and archaeological record concerning how early hominins might have interacted with their dead, extant primates may provide valuable insight into how and in which contexts thanatological behaviours would have occurred.”

Complete Article ↪HERE↩!

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What People Actually Say Before They Die

Insights into the little-studied realm of last words.

By Michael Erard

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 the dying. 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 the dying. 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 the dying, there’s next to nothing to look up, only firsthand knowledge gained painfully.

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 the dying, and to the dying 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 the dying. 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 the dying 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↩!

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Not all Americans have a fair path to a good death – racial disparities are real

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What does it mean to “die well”?

The world got an idea recently from the 92-year-old Buddhist monk and peace activist Thich Nhat Hanh, who popularized mindfulness and meditation in the U.S. The monk returned to his home in Vietnam to pass his remaining years. Many admired his desire to live his remaining time in peace and dignity.

Researchers from the University of California, San Diego recently did a literature search to understand what Americans might consider to be a “good death” or “successful dying.” As can be expected, their findings varied. People’s views were determined by their religious, social and cultural norms and influences. The researchers urged health care providers, caregivers and the lay community to have open dialogues about preferences for the dying process.

As scholars who study social health and human services psychology, we found something missing in these conversations – how race impacts life span.

It’s important to recognize that not everyone has an equal chance at “dying well.”

Black population and ill health

Take the disease burden of the African American population.

African Americans experience an earlier onset and greater risk of what may be referred to as lifestyle-related diseases, including cardiovascular disease, stroke and diabetes. More than 40% of African Americans over the age of 20 are diagnosed with high blood pressure, compared to 32% of all Americans.

In addition, the Centers for Disease Control and Prevention reports that the likelihood of experiencing a first stroke is nearly twice as high for African Americans compared with whites. African Americans are more than two times more likely to experience a stroke before the age of 55. At age 45, the mortality rate from stroke is three times higher for blacks compared to whites.

This disease burden consequently leads to their higher mortality rates and overall shorter life expectancy for blacks compared to whites.

And while the life expectancy gap differs by only a few years, 75.3 for blacks and 78.9 for whites as of 2016, research suggests that African Americans suffer more sickness. This is due in part to the increased prevalence of high blood pressure, obesity and diabetes in this population.

Genetics, biological factors and lifestyle behaviors, such as diet and smoking, help explain a portion of these differences. However, researchers are still learning how race-related social experiences and physical environments affect health, illness and mortality.

Access to health care

factor is that African Americans have historically underutilized preventive medicine and health care services. They also delay seeking routine, necessary health care – or may not follow medical advice.

One study found that during an average month, 35% fewer blacks visited a physician’s office, and 27% fewer visited an outpatient clinic compared with whites.

“The only time I go to the doctor is when something is really hurting. But otherwise, I don’t even know my doctor’s name,” said a young African American male during a research study in Chicago, Illinois.

There are reasons for this mistrust. Researchers who study medical mistrust argue that high-profile cases of medical experiments are still playing a role in how African Americans view health care systems and providers. In the past, physicians have intentionally done harm against people of color. A well-known case is the Tuskegee Study of Untreated Syphilis in African American men, which lasted from 1932 to 1972.

In this clinical study, 399 African American men, who had already contracted syphilis, were told that they were receiving free health care from the government. In fact, doctors, knowing their critical condition, were awaiting their deaths to subsequently conduct autopsies and study the disease’s progression.

Even though penicillin had been proven to treat syphilis by 1947, these men were denied the treatment.

Why discrimination matters for health

Other studies suggest that regardless of their knowledge of past medical abuse, many African Americans have low levels of trust in medical establishments.

“Doctors, like all other people, are subject to prejudice and discrimination,” writes Damon Tweedy, author of “Black Man in a White Coat: A Doctor’s Reflections on Race and Medicine.” “While bias can be a problem in any profession, in medicine, the stakes are much higher.”

Unfortunately, these fears are underscored by empirical evidence that African Americans are less likely to receive pain medication management, higher-quality care or survive surgical procedures.

In addition, a growing body of literature has established that experiences of discrimination are extremely harmful for physical and mental health, particularly among African Americans.

This research adds to the body of evidence that experiences of discrimination harm people’s health and may contribute to the increased rates of premature decline and death among blacks.

What does it take to die well?

As African American scholars, we argue the “art of dying well” may be a distant and romantic notion for the African American community.

African Americans are also exposed to earlier and more frequent deaths of close loved ones, immediate family members and friends.

Their increased “vulnerability to untimely deaths,” writes Duke University scholar Karla Holloway, shows African Americans’ lack of access to equitable and fair paths in life.

Before defining “a good death,” American society must first begin to fundamentally address how to promote quality living and longevity across all racial groups.

Complete Article ↪HERE↩!

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Here’s How You Can Save the Earth, Even After Dying

Traditional funerals are terrible for the environment. But the green burial movement allows people to be kind to the planet, even after they’ve passed.

by &

If you’re planning a traditional Western funeral for a loved one, burial according to industry standards will cost you — in more ways than one. The materials typically used in the process, from embalming chemicals to casket varnishes and sealants, can seep into ground, polluting the water that you use every day.

In addition, U.S. cemeteries contain an estimated 15 tons of casket steel, enough to build almost all of the skyscrapers in Tokyo, according to TalkDeath, an online community dedicated to encouraging positive conversations around death and dying. Even cremation — often considered one of the most environmentally friendly options — spews fossil fuels into the atmosphere.

So what’s an eco-conscious funeral planner to do? A green burial uses biodegradable materials for caskets and shuns the use of chemicals to preserve bodies. That means adopters can help save the planet while saving themselves (or their families) money in the process.

To learn more about green burials, watch the video above.

Complete Article ↪HERE↩!

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This is what it’s like to be a death doula

The founder of Going With Grace, Alua Arthur, shares how she found her way into death work and how she manages not to take her work home with her.

Alua Arthur

By Anisa Purbasari Horton

For many people, the thought of being surrounded by death (and have that be a central part of how they earn their living) can seem quite morbid. But for Alua Arthur, the founder of the end-of-life planning service Going With Grace, it feels exactly the opposite.

Arthur is a death doula—also often referred to as a “death midwife.” Arthur’s journey to becoming a death doula is a profoundly personal one, but she represents a number of professionals who are active in the growing “death wellness” and “death-positive” movement. As Fast Company‘s Rina Raphael previously reported, this movement rests on the notion that having a good death is “part of a good life.”

Fast Company recently spoke to Arthur about her motivations for becoming a death doula and how she copes with work-life balance as she helps others through the grieving (and often stressful) administrative process that comes before and after a loved one’s death. The interview has been edited for length and clarity.

Helping people become clear on what death looks like

A death doula is a non-medical professional who provides holistic support for the dying person of the family and the family members. I help the people who are close to death on what it looks like. After that, I help family members deal with their affairs.

I also work with healthy people. The way I conceive it, as soon as someone comes into any recognition that one day they’re going to die, that’s the time to start preparing for that, so I help them with an end-of-life plan. It’s where we write down all the stuff that’s going to be a pain. We get clear for what their desires are for life support, and who’s going to make the decisions for them. We walk through important information and documents, like where’s their birth certificate? Where is their retirement account? Where do they bank? 

I also help people who are terrified of death. I find that people are more afraid of the dying process than death itself, so with them, I do death meditations. This looks like us going through the eventual decline of the body, their systems shutting down, and their breathing becoming ragged. It’s an opportunity for the person to lay there with whatever it is they experienced. A lot of times, people experience a sense of peace after going through this process.

The desire to build a career around death

Growing up, I wanted to be lots of things. I really wanted to be an astronaut. I loved to read and immerse myself in another world. I also wanted to be a conductor. I applied to a music conservatory, but I ended up in a liberal arts school that had an okay music program. I got involved in student government and decided to go to law school. I worked in property law, starting with government benefits, and then I moved to domestic violence and then not-for-profit development. I fumbled around for 10 years and started getting really depressed, so I took a medical leave of absence. That’s how I found death work.

I met a woman in Cuba. She had cancer and was traveling, and we bonded. We spent 14 hours on the bus together, and I asked all the difficult questions. What would be undone in her life if the disease killed her? What does she think happens after she dies? Did she live with the recognition of death constantly? They were questions I never really had myself. That was the first time it hit me that death was very real and that we don’t talk about it enough. It became clear that I wanted to spend my career talking about death.

That was solidified when my brother-in-law got sick and died. It showed me how all the ways that we do it now are broken. We had so many questions—how do we transfer the title for his vehicle, and what should we do with his leftover medication? There was nobody to answer them.

A day in the life of a death doula

A typical day always includes a lot of emails. So many emails. The part of my job that stresses me out is the business part. God, it’s the worst! I need to go back to my vision of helping people feel less alone to keep me in clear focus.

I start my day checking on various things—with the people who are dying, how things were over the course of the night. I’ll also check on plans for any funeral procession. I do a lot of phone calls and talk to therapists who work with people that are dying. If I do have clients that are dying, I see them in the afternoon, or I will see my end-of-life planning clients.

These days, I also do a lot of education around death and dying. I’m doing a lot of talks to reach people about how to do this work because we’re all going to have to do it for somebody in our lives.

When it comes to work-life balance, I do things like meditate daily, exercise regularly, and drink a gallon of water every day. I just got my nails done. I don’t deny myself pretty things.

On death and relationships

I talk about death all the time with my friends and family. I think sometimes I can be a little bit annoying because I want people to be authentic in their decision-making. I tend not to tell people what to say or do, and I listen actively. My best friend and I, we always have challenges because she always wants to tell me what to do. It is a struggle for my friends who have a hard time with the concept of their own mortality, because I’m talking about it all the time.

I don’t push the issue with my friends who are uncomfortable, but with my family members, I do. For my dad, he first had to come around to the idea that I wasn’t going to be practicing law anymore. Being an African parent, he wanted me to be either a lawyer, doctor, or engineer. I was like, how about death? He was like, how about what? That was a little tricky. But eventually, we got around to talking about it. After all, I’m the one who’ll have to deal with it when it happens.

I think people actually want to talk about death, but they feel like they don’t have permission to do so because it’s “heavy.” Well, it’s a regular part of living. Without death we wouldn’t have life. It’s funny: when I meet someone for the first time and I tell them I’m a death doula, so many of them say, “Oh, when x died, I wish that you had been there.”

Complete Article ↪HERE↩!