What Should Happen to Our Data When We Die?

Anthony Bourdain’s A.I.-generated voice is just the latest example of a celebrity being digitally reincarnated. These days, though, it could happen to any of us.

By Adrienne Matei

The new Anthony Bourdain documentary, “Roadrunner,” is one of many projects dedicated to the larger-than-life chef, writer and television personality. But the film has drawn outsize attention, in part because of its subtle reliance on artificial intelligence technology.

Using several hours of Mr. Bourdain’s voice recordings, a software company created 45 seconds of new audio for the documentary. The A.I. voice sounds just like Mr. Bourdain speaking from the great beyond; at one point in the movie, it reads an email he sent before his death by suicide in 2018.

“If you watch the film, other than that line you mentioned, you probably don’t know what the other lines are that were spoken by the A.I., and you’re not going to know,” Morgan Neville, the director, said in an interview with The New Yorker. “We can have a documentary-ethics panel about it later.”

The time for that panel may be now. The dead are being digitally resurrected with growing frequency: as 2-D projections, 3-D holograms, C.G.I. renderings and A.I. chat bots.

A holograph of the rapper Tupac Shakur took the stage at Coachella in 2012, 15 years after his death; a likeness of a 19-year-old Audrey Hepburn starred in a 2014 Galaxy chocolate ad; and Carrie Fisher and Peter Cushing posthumously reprised their roles in some of the newer “Star Wars” films.

Few examples drew as much attention as the singing, dancing hologram that Kanye West gave Kim Kardashian West for her birthday last October, cast in the image of her late father, Robert Kardashian. Much like Mr. Bourdain’s vocal doppelgänger, the hologram’s voice was trained on real audio recordings but spoke in sentences never uttered by Mr. Kardashian; as if communicating from the afterlife, the hologram expressed pride in Ms. Kardashian West’s pursuit of a law degree and described Mr. West as “the most, most, most, most, most genius man in the whole world.”

Daniel Reynolds, whose company, Kaleida, produced the hologram of Mr. Kardashian, said that costs for projects of its nature start at $30,000 and can run higher than $100,000 when transportation and display are factored in.

But there are other, much more affordable forms of digital reincarnation; as of this year, on the genealogy site MyHeritage, visitors can animate family photos of relatives long dead, essentially creating innocuous but uncanny deepfakes, for free.

Though most digital reproductions have revolved around people in the public eye, there are implications for even the least famous of us. Just about everyone these days has an online identity, one that will live on long after death. Determining what to do with those digital selves may be one of the great ethical and technological imperatives of our time.

Ever since the internet subsumed communication, work and leisure, the amount of data humans create daily has risen steeply. Every minute, people enter more than 3.8 million Google search queries, send more than 188 million emails and swipe through Tinder more than 1.4 million times, all while being tracked by various forms of digital surveillance. We produce so much data that some philosophers now believe personhood is no longer an equation of body and mind; it must also take into account the digital being.

When we die, we leave behind informational corpses, composed of emails, text messages, social media profiles, search queries and online shopping behavior. Carl Ohman, a digital ethicist, said this represents a huge sociological shift; for centuries, only the rich and famous were thoroughly documented.

In one study, Dr. Ohman calculated that — assuming its continued existence — Facebook could have 4.9 billion deceased users by the century’s end. That figure presents challenges at both the personal and the societal level, Dr. Ohman said: “It’s not just about, ‘What do I do with my deceased father’s Facebook profile?’ It’s rather a matter of ‘What do we do with the Facebook profiles of the past generation?’”

The aggregate data of the dead on social media represents an archive of significant humanitarian value — a primary historical resource the likes of which no other generation has left behind. Dr. Ohman believes it must be treated as such.

He has argued in favor of designating digital remains with a status similar to that of archaeological remains — or “some kind of digital World Heritage label,” he said — so that scholars and archivists can protect them from exploitation and digital decay.

Then, in the future, people can use them to learn about the big, cultural moments that played out online, like the Arab Spring and the #MeToo movement, and “zoom in to do qualitative readings of the individuals that took part in these movements,” Dr. Ohman said.

Public social media profiles are one thing. Private exchanges, such as the email read in the Bourdain documentary, raise more complicated ethical questions.

“We don’t know that Bourdain would have consented to reading these emails on camera,” said Katie Shilton, a researcher focused on information technology ethics at the University of Maryland. “We don’t know that he would have consented to having his voice manipulated.” She described the decision to have the text read aloud as “a violation of autonomy.”

From an ethical standpoint, Dr. Shilton said, creating new audio of Mr. Bourdain’s words would require the permission of those close to him. In an interview with GQ, Mr. Neville said he “checked” with Mr. Bourdain’s “widow and his literary executor,” who approved of his use of A.I.

For her part, Ottavia Busia, Mr. Bourdain’s ex-wife, said she did not sign off on the decision. “I certainly was NOT the one who said Tony would have been cool with that,” she wrote on Twitter July 16, the day the film was released in theaters.

Celebrity Holograms and Posthumous Privacy

As Jean-Paul Sartre once put it: “To be dead is to be a prey for the living.” It’s a sentiment that philosophers are still mulling over today, and one that Patrick Stokes, the author of “Digital Souls,” sees as directly related to digital remains.

As he sees it, creating a digital version of a deceased person requires taking qualities from the dead that are meaningful to the living — such as their conversations and entertainment value — and leaving the rest behind.

“We’ve crossed into replacing the dead,” said Mr. Stokes, a senior lecturer in philosophy at Deakin University. “We’ve crossed into not simply finding a particularly vivid way to remember them, but instead, we found a way to plug the gap in existence they’ve left by dying.”

In the case of public figures, there is an obvious financial incentive to create their digital likenesses, which is why their images are protected by posthumous publicity rights for a certain period of time. In California, it’s up to 70 years after death; in New York, as of December 2020, it’s 40 years post-mortem.

If a company wants to use the image of a deceased person sooner, it requires consent from the deceased’s estate; resulting collaborations can be mutually profitable. As such, moral guardianship can be complicated by financial motives.

Some artists are explicitly expressing their desires. Robin Williams, for instance, who died in 2014, filed a deed preventing the use of his image, or any likeness of him, for 25 years after his death as an extra layer of protection on top of California’s law.

Consumers are also making their opinions known. The company Base Hologram, which has produced hologram shows of Roy Orbison, Buddy Holly and Maria Callas, reversed plans to put likenesses of both Whitney Houston and Amy Winehouse on tour, after they were criticized as exploitative. Just because producing such performances is legal doesn’t mean audiences will accept them as ethical.

Currently, United States federal law does not recognize the dead’s right to privacy, said Albert Gidari, a lawyer and former consulting director of privacy at the Stanford Center for Internet and Society.

“But,” he said, “as a practical matter, because so much of the information about you is in digital form today, residing with platform providers, social media and so on, the Stored Communications Act actually does protect that information against disclosure without prior consent.”

“And obviously, if you’re dead, you can’t consent,” Mr. Gidari added. A consequence is that families of dead individuals often cannot recover online data from their loved ones’ digital accounts.

As a way of asserting agency over their digital legacies, some people are choosing to create their own A.I. selves using a growing number of apps and services.

Some, like HereAfter, are focused on family history. For $125 to $625, the company interviews clients about critical moments in their lives. Those answers are used to create a Siri-like chat bot. If your great-grandchildren, for instance, wanted to learn how you met your spouse, they could ask the bot and it would answer in your voice.

Another chat bot app, Replika, creates avatars that mimic their users’ voices; over time, each of those avatars is meant to become the ultimate empathetic friend, ever-available by text (free) and voice calls (for a fee). The service gained traction during the pandemic, as isolated people sought out easy companionship.

Eugenia Kuyda, the app’s creator, got the idea after her friend Roman Mazurenko died in 2015. She used what is known as a neural network — a series of complex algorithms designed to recognize patterns — to train a chat bot on the textual data he left behind, which communicated convincingly enough to charm Mr. Mazurenko’s mother. That same technology underpins Replika’s chat bots.

“Replika is primarily a friend for our users, but it will live on past their death bearing the knowledge about its creator,” Ms. Kuyda wrote in an email.

In December 2020, Microsoft filed a patent for “Creating a conversational chat bot of a specific person,” which could be used in tandem with a “2-D or 3-D model of a specific person.” (“We do not have anything to share about this particular patent,” a Microsoft representative wrote in an email.)

Other projects seem aimed at offering emotional closure after the death of a loved one. In February 2020, a South Korean documentary called “Meeting You” was released. It chronicled the virtual-reality “reunion” of a woman named Jang Ji-sun and her young daughter who died from cancer.

The daughter’s avatar was created by Vive Studios in close conjunction with the Jang family. The company has considered other applications for its V.R. technology — creating a “digital memorial park” where people can visit dead loved ones, for instance, or teaming up with health care providers guiding patients through grief.

This is all happening in the midst of a pandemic that has radically altered the rites around death. For many families, final goodbyes and funerals were virtual in 2020, if they happened at all. When digital-afterlife technologies begin to enter mainstream use, they may help ease the process of bereavement, as well as foster connections between generations past and present and encourage the living to discuss death more openly with each other.

But before then, Mr. Stokes, the philosopher, said, there are important questions to consider: “If I do start interacting with these things, what does that say about my relationship to that person I loved? Am I actually doing the things that love requires by interacting with this new reanimation of them? Am I protecting the dead? Or am I exploiting them?”

“We have a rare chance to actually be ethically ready for new technology before it gets here,” Mr. Stokes said. Or, at least, before it goes any further.

Complete Article HERE!

An increasingly popular way to be buried

— Become part of an artificial reef

Family members watch as a concrete “reef ball” — made in part with the cremated remains of their loved one — is lowered into the water off the coast of Ocean City, Md. The memorials help replenish reefs.

By Kathryn Fink

When Rob Shepherd’s wife, Beth, died of brain cancer at age 66, he knew she had wanted to be cremated. He didn’t know that six years later, he’d be waving goodbye to her remains from a boat in the Atlantic Ocean. Her ashes, now mixed in a concrete ball, were headed to the ocean floor to help form a reef.

Rob, a 69-year-old retiree in St. Louis, had been storing Beth’s cremated remains in their original plastic bag on a living room bookshelf; an urn, to him, felt too permanent. He had been planning to return her to Maryland, her childhood home — and he says it was “a gift from heaven” when he discovered a nonprofit called Eternal Reefs. Since its founding in 1998, Eternal Reefs has worked with families to create concrete “reef balls” that incorporate cremated remains, or “cremains,” and small personal items. Part memorial, part conservation method, they’re deposited to the ocean floor to replenish reef systems. The balls weigh between 600 and 4,000 pounds, and require a crane to be transported.

“I put in our two wedding rings and her favorite pair of earrings, because I know she wouldn’t want to be without her earrings,” Shepherd said in Ocean City, Md., in May, on the day Beth’s remains were placed into the sea. Her reef memorial cost $3,995 — not including the price of cremation, which is $350 on average. The median cost of a funeral with a viewing and cremation was $5,150 in 2019, according to the National Funeral Directors Association.

To avoid dealing with the Transportation Security Administration — which requires specific types of containers for traveling with cremains in carry-on luggage and can prohibit their entry onto planes — Shepherd had driven Beth’s remains from St. Louis. Later that day, he watched a crane lower her memorial ball into the Atlantic — permanently becoming a part of Russell’s Reef, an artificial reef site off the coast of Ocean City. He and the other families memorializing loved ones aboard the boat clapped.

Eternal Reefs grew out of the intersection of “deathcare” — an array of products and services related to death and memorialization — and the environmental movement. Now, against the backdrop of the pandemic, the green burial industry is proliferating. A 2021 survey conducted by the trade magazine American Funeral Director found that 51 percent of respondents have attended a green burial, and 84 percent would consider one for themselves. The green approach aims to reduce the environmental impact of burial and, in some cases, uses remains to repair the destruction humans have inflicted on the earth. These options can take many forms, including coffins made of mushrooms, water-based cremation (in which water and chemicals break down the body) and biodegradable pods that use remains to grow a sapling.

Like the rest of the funeral industry, green burial is regulated. A final disposition — the legal term for what happens to your body after death — is a complicated issue. Many emerging technologies require state legalization, including a new green burial approach of composting human remains. In December, a funeral home outside Seattle became the first to legally perform the process, known as “natural organic reduction.” Several other states are currently weighing its legality.

Since Eternal Reefs’ inception, it has deployed more than 2,500 reef memorials in 30 permitted locations, including off the coasts of Florida, New Jersey and Texas. CEO George Frankel says the demand for reef memorials has grown steadily — but in the past year, information requests and advance burial plans have skyrocketed. He attributes that uptick to the pandemic. “One of the problems we’ve always had as a culture in this country is that we don’t talk about death very easily or very comfortably,” he told me. “The covid virus has forced everybody to look at their own mortality in a whole different way.”

Still, plenty of people decided to pursue this option long before the pandemic. Linda Froncak, who was memorialized in her home of Ocean City the same weekend as Beth Shepherd, made preparations for her burial in the early years of Eternal Reefs. Originally from Minnesota, Froncak died of a heart attack two years ago at age 64, which is how 22 Minnesotans ended up flying halfway across the country to the coast of Maryland, sporting custom T-shirts in her honor that said “Reefer Madness” on them.

The funeral industry, which has long hinged on tradition, is seemingly at odds with the advent of green burial. However, funeral homes vary widely in their willingness to embrace new options. Crystal van Orsdel Marchant, a fourth-generation family employee at Van Orsdel Funeral & Cremation Services in Florida, told me that her fellow millennials are all for facilitating green burial, but the industry has always been resistant to change. She points to the 1970s as an illustration: Her family’s funeral home, like most others, held out on offering cremation services even as interest grew. They eventually bought a crematory after her father told his father repeatedly that they needed one.

Five decades later, cremation has surpassed the casketed burial rate in the United States, according to the National Funeral Directors Association — and Van Orsdel Funeral & Cremation Services now offers eco-friendly burial options, including willow caskets and biodegradable urns. Van Orsdel Marchant says the funeral home may also eventually replace its fleet of hearses with electric vehicles.

Some funeral home owners told me they’ve seen only the occasional request for green burial options. Whether low interest is a symptom or a cause, though, depends on whom you ask. “Funeral homes are reluctant to change because they’re saying, well, nobody’s asking for this,” says Darren Crouch, co-founder and president of green funeral goods supplier Passages International, whose products include biodegradable urns. “If Toyota came out with a Prius 20 years ago and they didn’t put it in the front of their lot, Prius would probably not be a thing right now. We’re trying to educate funeral directors that there is significant demand.”

As for Rob Shepherd, memorializing his wife via reef ball was more than an environmental decision, and more than an homage to her love of Ocean City. It was an unusual, yet heartening, way to process loss — especially for his grandchildren in attendance, who were too young to get to know Beth when she was alive. “We all took turns stirring,” Shepherd said of the process of mixing her ashes with concrete. “We decorated around the top with some of the trinkets and flowers. And we drew pictures with sidewalk chalk on the side — hearts, and goodbyes, and ‘Miss you.’ ”

Complete Article HERE!

An urn that doubles as a planter

— It’s the latest in L.A.’s death positivity movement

Inspired by universal stories of loss, woodworker C.C. Boyce crafts custom-made wood urns for cremation remains that can be used as planters.

By Lisa Boone

When Los Angeles woodworker C.C. Boyce selects locally sourced pieces of California sycamore and speckled maple at Angel City Lumber in Boyle Heights, the artisan has powerful inspiration for her custom-made planters: the deceased.

“I never intended to get into the death care industry,” Boyce says of the planters she designs and builds in her downtown Los Angeles studio. But these are not like the planters you find at plant stores and nurseries. Her planters are, in fact, urns filled with cremated remains and topped with a living plant.

She is turning urns into vessels for life, inspired by universal stories of loss.

“It has been such a rewarding experience,” she continues. “Especially during the pandemic. It felt good to know that I was helping people. We all felt that hopelessness while sheltering in place. It emphasized that you never know what someone is going through.”

Urns have been around for thousands of years, but the funeral industry has been slow to update them for the 21st century home.

Often, Boyce says, clients will reach out to her because they are struggling to find an urn “good enough” for their loved one. A person’s essence is eternal, after all, which explains why so many of us want to keep a part of our loved ones close after they have died.

Artisan C.C. Boyce demonstrates where cremation remains are placed in the bottom of a “Planturn” — a custom-made wood urn to hold cremation remains.

Their singularity is also what makes it so hard for us to process their absence, which is why so many urns end up gathering dust on bookshelves and inside closets. In some instances, Boyce’s clients have waited so long to find an appropriate resting place for their loved one, they can’t remember where they placed the ashes.

“I had a man message me that his wife died three years ago and he had given up trying to find something for her because everything was ugly, mass-produced and not her style,” Boyce says. “Another man said his design-savvy partner would be so angry with him if he put him in something ugly. I hear a lot of stories like that.”

Her untraditional designs are a part of the emerging death positivity movement, a largely women-driven attempt to shatter taboos and discomfort regarding death. You can see it everywhere when it comes to death services: in death doulas, green burials, diamonds created from ashes, death cafes and human composting known as natural organic reduction.

Urns, in particular, have been long overdue for a makeover.

People don’t like the fact that urns look like urns because they remind us of the morbid caricature of death, says Jill Schock, a Los Angeles death doula who works primarily with terminally ill cancer patients.

“The shape of the traditional urn is so embedded in our psychology,” says Schock. “We all have unconscious anxiety about death. When people see a traditional urn in your living room, they immediately know what it is and it makes them uncomfortable.”

She estimates that more than half of her clients, and Baby Boomers in particular, choose cremation over more traditional and costlier burials.

Enter Boyce’s Planturn, a modern, minimal and decorative cremation urn ($250-$600) composed of two pieces of wood and topped with a living plant. While many urns are vase-shaped, Boyce’s urns are geometric and created with woods sourced from fallen trees and coated in an eco-friendly finish.

The urns come in three sizes to accommodate pets and humans along with a muslin bag to hold the cremains and are topped with a plant holder. Boyce recommends succulents, cactuses and air plants because they don’t mind being crowded and don’t need a lot of water.

The top and the bottom of the urn are secured by strong hidden rare-earth magnets to create a seamless piece, often from two types of wood or cork. Sometimes people share stories with her, and sometimes they don’t. “They often have a lot going on,” Boyce says. “Grief affects people differently, and I try to respect that.” Over the last year, she has made urns for pets, parents and grandparents, a 19-year-old woman, a 2-year-old who died of leukemia, and an infant. “Those are heart-wrenching,” she says. “I use speckled maple for infants because it represents innocence.”

Boyce, 47, grew up in Wisconsin, the daughter of an engineer who installed a family wood shop in the basement. When she was 5, she attended her first funeral, an event she remembers vividly.

“They laid out my great-grandmother’s body at the wake, and everyone paid their respects,” she recalls. “I remember being curious and unafraid. They put a rosary in her hands, and I remember playing with it. The funeral director got miffed, and my mom told him to allow it because she was my great-grandmother. My mom was the one who made it so that death was not taboo, that it was something that should be acknowledged and talked about. A lot of people are uncomfortable with death. I’m not.”

Thirteen years later, during her freshman year of college, she experienced a series of losses so staggering, she worried her college professors didn’t believe her when she said she missed multiple classes to attend funerals. “I lost five people close to me in one year. Young, old, expected, tragic. An accidental overdose. A murder. A 4-year-old cousin was killed in a car accident.”

Last year, she lost her mother to COVID-19, and had two pets die.

A closer look at the Planturns: Boyce recommends airplants and succulents to top them off.

The interweaving of death and craftsmanship clearly inspires her work.

“Experiencing so much loss has taught me to hold on to empathy,” she says. “I never really lose sight of what people are going through. Sometimes people don’t take pet empathy seriously, but I do. I’m always willing to listen. And I always think about the people who died as I make each urn. Sometimes I try to match the wood to the pet’s fur.”

Her clients are grateful to have something so personal that reminds them of the ones they lost.

Julie Maigret, a Los Angeles interior designer who purchased a Planturn for two departed dogs and a cat, says no one has ever guessed that the planter in her living room is an urn. “I tend to it like a little garden,” she says. “I have something beautiful that reminds me of my pets. I placed a tiny trailing plant in the urn not realizing it is called red stem tears. There is nothing out there like what C.C. is making and that’s symbolic of the being that you lost. That’s very powerful.”

Juggling restaurant work and custom woodworking jobs since 2015, Boyce made her first Planturn in 2018 as a custom request for a friend’s father. Thinking it was a one-off, she was taken aback when she received an avalanche of positive responses after sharing the planter-urn on her Instagram account.

Boyce’s first thought on reading the comments was: “Am I on to something?”

For a year, she researched cremation, urns and the death care industry as she built prototypes in a variety of shapes and sizes. In 2019, she launched a successful Kickstarter campaign to help buy the equipment she needed to make the urns in an efficient manner. When she was laid off from her restaurant job in March 2020 due to the pandemic, it was the impetus she needed to pivot to making Planturns full time.

“I thought, ‘We’re in a pandemic, and I make cremation urns. Houseplant sales have skyrocketed. It’s now or never. I didn’t think I could quit my job until the urns were more successful. But as it turned out, I had to make the urns successful because I lost my job.”

As someone who deals with death regularly, Schock has seen how customized urns like these can help people process death.

“I know that people who have lost someone enjoy being around their remains,” she says. “This is the reason why people visit a cemetery or have an urn: They want to be close to their loved ones. It’s important to have the urn out and smile and think there’s my loved one, pet or child.”

That is Boyce’s mission.

Complete Article HERE!

We Used to Photograph the Dead

What a curious Victorian practice reveals about our modern approach to death

By Brandy L Schillace

It’s a wistful image. The unknown woman seems pensive, gazing reflectively into the foreground. Her head rests upon lace, possibly her own handiwork, and behind is a shelf of small vials, the homemaker’s apothecary. She is graceful, quiet, restive.

In truth, the woman is dead.

The picture (below) was taken postmortem, her body poised under the direction of memento mori photographers using the daguerreotype processes (iodine-sensitized silvered plate and mercury vapor).

Why go through all this trouble? The nineteenth century saw a sudden and increased interest in public cemeteries and mourning rituals of all kinds (such as brooches made of human hair, complex funeral fashions), partly due to Queen Victoria’s own prominent widow’s weeds, and partly because the middle classes had means to acquire them. But it was the advent of photography that offered the best means of permanently memorializing the dead.

From the collection of Steve DeGenero, c/o DEATH’S SUMMER COAT

As a historian and author, I’ve been researching death and dying for years. My first book, Death’s Summer Coat, took a long look at our grieving rituals — and in this series, I have been re-examining those practices in light of Covid-19.

There are two images from my research into memento mori that I find particularly moving. The first is presented above. But the second wounds me with its grace, its heartfelt grief. If offers us a picture of the mother in mourning, having lost her infant child — and it offers a reminder that in the 19th century, the odds of raising your children into adulthood were dismal. Disease, poor hygiene, the absence of germ theory, and lack of vaccines all contributed to extraordinary mortality in children under the age of 5 (that is 46% or roughly 463 deaths per 1000 births).

From the collection of Steve DeGenero, c/o DEATH’S SUMMER COAT

Photography, with its use of mercury and silver, was expensive. So much so that most people never had a photo taken at all, or only on their wedding day. Imagine, then: no baby pictures. No photos of children at play, no images of holidays gone by. The human memory loses detail quickly; the context fades, then the contours, then the features of even well-beloved faces. Posing a child in death, often as though sleeping or still alive, was a means of keeping their face fresh before you — a way of remembering.

These images were not hidden away either. They would be displayed in the home, along with other features of grief. Black draped over mirrors or windows, and of course, the mourning clothes worn by those who could afford them. In our present world of rush and hurry, we are encouraged to get over our grief and come back to “normal,” understood as a state prior to loss — so great is this impulse that lingering grief is considered pathological. But for Victorians, grief was public, communal, and long lasting.

When Queen Victoria’s husband Albert died, she withdrew from public and wore black for the rest of her life. She was, in many respects, defined by her grief. It has been argued that the responsibility for making mourning ‘fashionable’ lies with her — by the height of the Victorian period, mourners were living memorials (even mourning billboards) to death.

In the first year of mourning, for instance, a widow wore black crape, a scratchy silk material that was stiff, crimped, and reflected no light. In her second year, she wore “secondary mourning,” which was still black but might be trimmed with white collars or cuffs. “Ordinary mourning” was next, again, still black, but now the fabric could be shiny — and then “half-mourning” when gray or purple was permitted.

In 1840, barrister Basil Montagu records that “in the mourning dress, the outward sign of sorrow, we call for the solace of compassion, for the kind words and looks of friends and for the chastened mirth of strangers, who, unacquainted with the deceased, respect our grief.” Walking down a city street, an onlooker might not only understand who was grieving, but in what stage of grief they happened to be.

Photographing the dead occurred at the very beginning of these stages, when the body still remained in the home — the literal funeral parlor. They would be posed, sometimes with still living children, as though still alive (sometimes with eyes open and propped into a seated position; many such photos are viewable in the Burns Archive). It inaugurated a period of intense grief, and provided a memento that would serve as the body itself was removed for burial. And yet, the practice fades and disappears by the end of the century.

Some of this is driven by the practical changes of photography; as it became less expensive, people had more living images of their loved ones to hand. But it is also true that the Victorian grief culture fell victim to the speed of life, industry, business, and changing ideas about what sort of emotions were too private the display. We are not very tolerant of grief, today. As though there is something wrong with feeling loss so keenly.

In my book, I reflected that “the modern man has lost loss; death as a community event and mourning as a communal practice has been steadily killed off.” That was 2014, and it seems a very long time ago; we’ve lived through a great deal since then, including a pandemic and mortality rates that simply cannot be ignored, screened, or hurried off

I’ve begun to wonder what we can learn from a cultural past that didn’t try to hide death — that even displayed photos of loved ones after death. Perhaps it’s time to revisit the slow process, slow like those vapor-produced daguerreotypes, taking form and changing shape and slowly coming to light

We are allowed our pain. And perhaps, if we were allowed it more publicly, we might all be kinder and gentler to each other. In my next piece for this series, I want to talk about time — taking time, having permission, and knowing that there is no wrong way to grieve.

Complete Article HERE!

What happens when someone is dying?

Dying is unpredictable. It is not always possible to know for sure that a person is in the last days of life, predict exactly when a person will die, or know exactly what changes the person you are caring for will experience when they are dying.

However, there are certain bodily changes that show a person is likely to be close to death. It is normal for these signs to come and go over a period of days, and if they do go, this does not usually mean that the person is recovering.

Some of these changes may be distressing, but it can be reassuring to know what to expect and how to help. Signs that a person may be dying can include:

By clicking on the links above you can find out more about these changes and whether there is anything you can do to help.

The links below give more information and practical advice relating to other concerns or questions that might arise:

More information about support available and what to do after a death is available at the links below:

Thanks to the National Council for Palliative Care, Sue Ryder and Hospice UK for their kind permission to reproduce content from their publication What to expect when someone important to you is dying, which can be downloaded or purchased from the Hospice UK website.

Complete Article HERE!

Scientists Monitored 631 People As They Died.

This Is What They Found

The largest international study of the physiology of death to date shows that death is “more of a continuum than the flipping of a switch.”

By Eleanor Cummins

The living have always worried about the dead coming back to life. It’s the plot of the New Testament, the reason 19th century families installed bells in their loved one’s coffins, and a source of tension in end-of-life care today.

While doctors work to reassure families holding vigil in intensive care units and hospice facilities that the end has indeed come, death remains something of a mystery—even among medical researchers. 

These unresolved questions around things like brain death, cardiac death, and more have led to the proliferation of “myths and misinformation,” said Sonny Dhanani, chief of pediatric intensive care at the Children’s Hospital of Eastern Ontario. 

“We felt [stories about the dead coming back to life] might have been impacting people’s motivation to consent for their loved one to be a donor, and for the medical community to offer, donations,” he said. “We wanted to provide scientific evidence to inform the medical understanding of dying.”

In a new study, published Thursday in the New England Journal of Medicine, Dhanani and his team report the results of the largest international study into the physiology of dying to date. It suggests the living can rest easy, kind of.

Between 2014 and 2018, the researchers observed the heart function of 631 patients in 20 adult intensive care units in Canada, the Czech Republic, and the Netherlands after they were taken off life support. The scientists found that 14 percent of the dead showed some flicker of cardiac activity—measured by the electrical activity of the heart and blood pressure—after a period of pulselessness.

But the doctors at the patient’s bedside never got a determination of death wrong. “No one lived. Everyone died. No one actually came back to life,” Dhanani said.

The sputtering was short-lived—the furthest cardiac activity came just 4 minutes and 20 seconds after their heart initially stopped beating—and not strong enough to support other organs, like the brain. 

The data “help us understand how to medically define death, which is more of a continuum than the flipping of a switch,” according to Joanna Lee Hart, a pulmonary and critical care physician and assistant professor at the University of Pennsylvania’s Perelman School of Medicine.

“Our bodies are physiologically designed to stay alive… As our bodies try to keep us alive, they will pump out natural chemicals to sustain life as long as possible,” Hart wrote in an email to Motherboard. But, she added, “Once the dying process starts, it is very hard to return a person’s body back to a condition where the person can survive.”

This should be comforting to families and medical providers. Among other things, the research affirms that current practices, which typically tell doctors to wait 5 minutes after the pulse stops to name a time of death, are working. At that point, things like organ retrieval are safe to start.

While there are still plenty of questions about death, dying, and the afterlife, this study—which is unlikely ever to be repeated, given its scope—is something close to the definitive word on the question of the post-mortem cardiac activity.

“Determining death is so emotional to everyone,” Dhanani said. “We hope that rigorously studying death and dying, not being afraid of that conversation, will help.”

Complete Article HERE!

Canadian researchers build end-of-life predictor tool to support palliative care

The RESPECT calculator predicts frail people’s survival to assist caregivers in deciding about end-of-life care and services.

By Mallory Hackett

Understanding the trajectory of someone’s death to provide appropriate end-of-life care is a complicated process that the researchers from Project Big Life, a Canadian health calculation research group, hope to make easier with their Risk Evaluation for Support: Predictions for Elder-Life in the Community Tool (RESPECT).

The RESPECT calculator predicts frail people’s survival to assist caregivers in deciding what type of care and services they may need at the end of their life.

“Knowing how long a person has to live is essential in making informed decisions about what treatments they should get and where they should get them,” Dr. Peter Tanuseputro, physician-scientist at Ottawa Hospital, investigator at Bruyère Research Institute and a developer of RESPECT, said in a statement.

“As a person gets closer to death, the balance shifts from having curative care as the primary goal, to care that maximizes a person’s quality of remaining life.”

TOP-LINE DATA

In its validation study, the RESPECT calculator predicted a six-month death probability of 10.8% for the older adult cohort used in the study. The probability of death ranged from 1.54% in the lowest risk group to 98.1% in the highest risk group.

Survival time varied from 28 days in the highest risk group to over 8 years in the lowest risk group.

The top predictors of mortality were declines in a person’s ability to carry out activities of daily living, such as hygiene, using the toilet and mobility. The researchers found that these factors were more indicative of a person’s deterioration than chronic diseases they have.

METHODS

The researchers used population data over a six-year period derived from the Resident Assessment Instrument for Home Care (RAI-HC), a multidimensional clinical assessment used for care planning in the home setting in Canada. They collected data from more than 491,000 older adults between 2007 and 2013.

The majority (65%) of the cohort was female, and the average age was 79.7 years.

In addition to the data collected from the RAI-HC, which includes nearly 400 measurements, the calculator considered predictors such as physical functioning, cognitive impairment, sociodemographic factors, biological diseases, self-reported measures of health and recent symptoms.

THE LARGER TREND

Nearly every country in the world is experiencing a growing population of older adults, according to the United Nations. In 2019, there were 703 million people worldwide 65 years or older. That figure is anticipated to double to 1.5 billion in 2050, meaning that one in six people in the world will be aged 65 years or over.

The aging population places pressure on countries’ elder support systems, requiring new models to be created to care for this growing population segment, the U.N. says.

Digital health is poised to help end-of-life care with players like Papa, Spacetalk and Lively creating solutions for seniors. There’s also been a number of M&As in the space including Connect America’s acquisition of Royal Philips’ Aging and Caregiving (ACG) business and Amedisys’ purchase of Contessa Health.

ON THE RECORD

“The RESPECT calculator allows families and their loved ones to plan,” Dr. Amy Hsu, investigator at the Bruyère Research Institute, affiliate investigator at The Ottawa Hospital, and faculty in the Department of Family Medicine at the University of Ottawa, said in a statement. “For example, it can help an adult child plan when to take a leave of absence from work to be with a parent or decide when to take the last family vacation together.”

Complete Article HERE!