For years, we kept death at arms length. We awkwardly avoided it, looked the other way, and hid it behind layers of euphemism.
But since January, death has been inching closer, a drum beat in the back of our minds getting louder as COVID-19 spread around the world. Body counts became the focus of every news update. Field hospitals in Central Park. Mass graves in Italy. A gnawing sense that within weeks, this could happen here.
In the United States, deaths started losing their meaning. The numbers quickly dwarfed 9/11, then Vietnam, then every war combined since Korea. While 189 Australians have died, and the numbers keep rising through Melbourne’s awful outbreak, there’s still a sense of distance. People die from COVID-19 in hospitals, and nursing homes, far away places we can easily ignore.
But with COVID-19, the issue isn’t who dies, or where they die, it’s often how they die. And that is something we, as a death-averse culture, might not be ready for.
A death with dignity
For a culture where talk of dying is so taboo, so many of us want the same thing — a death with dignity.
A good death, says University of Wollongong Associate Professor of General Practice Joel Rhee, can be hard to achieve. But what is key is having a sense of control.
“It’s a death where you’re in an environment where you’re surrounded by people you love. You’ve got some dignity about how you’re going through the last few months,” says Rhee.
“It’s when your concerns, fears, psychological and spiritual needs are taken care of.”
COVID-19 takes away all that. The virus robs people, no matter their age, of any sense of control over their final days.
People die slowly and painfully, choking to death in near silence. They die alone, isolated from friends and loved ones, with exhausted health workers draped in PPE. And when they go, the atomising force of the virus disrupts the post-death rituals that give loved ones the closure they need.
Funerals are restricted to just a handful of people. The whole process of collective bereavement, gathering under one roof to hug and cry, is suddenly too risky. When residents died at St Basil’s in Melbourne, their families couldn’t even enter the facility to collect their belongings.
It’s that loss of dignity and control, that isolation from loved ones, that make the cynical calls to let the virus rip seem all the more callous. Deaths from COVID-19 aren’t just numbers on a spreadsheet. They’re real people, with families who are robbed of the chance to do right by them.
Jennifer Philip, chair of palliative medicine at the University of Melbourne, says the pandemic has made the job of supporting people in their final days so much more challenging.
“A big part of what we do in palliative care is communication and supporting families. But that’s all done remotely, behind layers of PPE,” Philip says.
“When you’re doing telehealth, many of the usual gestures we use are not visible. And there’s a lot of work with connectivity — using iPads and technology that older people may not be comfortable with.”
We need to talk about dying
But even before the pandemic hit, what stops people getting a good death, according to Philip, is our inability to talk about it, often till it’s too late.
“We don’t talk about it in a meaningful way, or grown up way. Certainly not in a nuanced way,” she says.
That’s something Jessie Williams wants to change. She’s CEO of the Groundswell Project, a not-for-profit that is trying to change the way Australians talk about death.
Once upon a time, Williams says, death was sudden and it was everywhere. But as we got wealthier, as medical science advanced, we were better able to draw out our final years, and push it away.
“We don’t see death, we don’t touch it and we don’t smell it,” Williams says.
Williams, who works with businesses, and runs public campaigns, to promote what she terms “death literacy”, says she’s felt a bit of a change during the pandemic.
“We’ve been overwhelmed — we’ve seen more engagement from new people coming on board.
“We’ve had more people coming forward for end of life planning workshops, more people are reaching out to access materials.”
In his work as a general practitioner, Rhee says he’s had more patients wanting to talk about death. They’ve seen the numbers, and the pictures. They don’t want to go like that.
“They see people passing away, and they think about it a bit more,” he says.
The pandemic has upended our lives so much in under a year that it’s hard to tell what will stay entrenched. Even habits like social distancing and hand hygiene, so much a part of our conversations in March, seem to have fallen by the wayside a little.
But perhaps this period, where death is everywhere, could start to subtly rewire how we view the end.
When we understand pain
Sometime around the 4th or 5th Century BCE, in what is now Nepal, there lived a prince. Raised amid total luxury, the prince’s parents did everything to shield him from nasty, brutish and short life outside the palace grounds.
If you can believe it, the prince didn’t leave the palace till he turned 29. The first thing he saw when he’d snuck out was a man whose body was crippled by ageing. He’d never seen old age. Next was a sick man. He’d never seen disease. The prince then came across a funeral procession. He’d never seen death either. The last thing the prince saw was an ascetic — a man who’d given up life. The prince returned troubled by what he saw. The next day, the man who would become the Buddha gave up everything. Jarred by suffering and death, he chose to live the life of an ascetic.
One moral of the Buddha’s story is that the experience of death, of realising the depths of human suffering and the limits of our own mortality, can change us. Like the Buddha, many in the affluent West grow up insulated from death. And while grappling with our own mortality doesn’t necessarily produce such a radical transformation, it at the very least produces conversations and feelings we might not otherwise have.
Philip says when people start talking about death, it can be a moving, humbling and relieving experience. Often, the conversations they have aren’t laced with morbidity. Instead, they’re often far more mundane. People talk about what they value, and, at a time when they’re at their most mature, decide what matters to them.
Perhaps this is the way into talking about death. Because so much of our discomfort around dying is part of a larger, more innate human difficulty with talking about things that are inconvenient. We like to sweep uncomfortable conversations under the rug and forget about them.
The sooner those conversations about who or what matters to us happen, the better. As Philip says:
“You have to tell people you love them, or you forgive them, or you thank them. If those things are unsaid that’s a great tragedy for those left behind.”
Taiwanese people living in the United States face a dilemma when loved ones die. Many families worry that they might not be able to carry out proper rituals in their new homeland.
As a biracial Taiwanese-American archaeologist living in Idaho and studying in Taiwan, I am discovering the many faces of Taiwan’s blended cultural heritage drawn from the mix of peoples that have inhabited the island over millennia.
Language, religion and food from all these traditions can be encountered in the cities and villages of Taiwan today. Multiple beliefs and customs also contribute to the rituals Taiwanese people conduct to send family members into the afterlife.
This belief is fused with elements of the island’s other belief systems including Taoism, Indigenous spirituality and Christianity. Together, they form death customs that showcase Taiwan’s multiculturalism.
In the streets of Taiwan’s metropolises and villages alike, temples, churches and wooden ancestor carvings invite one to contemplate eternity while the odors of nearby food vendors – such as stinky tofu, a local delicacy – tempt people to pause and enjoy earthly delights afterward.
The rituals associated with passing from this life include cemetery burial or traditional cremation practices. The dead are cremated and placed in special urns in Buddhist temples.
On one side of these notes is an image of the Jade Emperor, the presiding monarch of heaven in Taoism. These bills can be obtained in any temple or even 7-Eleven in Taiwan. The belief is that the spirits of ancestor might return to complain if not given sufficient spending money for the afterlife.
Adapting in America
My Indigenous great-great-grandmother married a Chinese man and her great-grandson – my father – grew up speaking a typical blend of languages for the 1950s: the local dialect, Hokkien, as well as Japanese, Cantonese and Mandarin. Arriving in the U.S. at the age of 23 to study electrical engineering, my father mastered English quickly, married my Euro-American mother, and raised a family in the American West.
Taiwanese people living in America often cannot participate in the rites of mourning and passage conducted back home because they do not have time or money, or recently, pandemic related travel restrictions. So Taiwanese Americans adapt to – and sometimes, accept the loss of – these traditions.
When my Taiwanese grandmother, whom we affectionately called Amah, passed away in 1987, my father was unable to return home for the Buddhist ritual organized by his family. Instead, he adapted the “Tou Qi,” pronounced “tow chee” – usually conducted on the seventh day after death.
My father adapted the ritual to a modern U.S. suburban home: He filled our dining room with fruits and cakes, as my Amah was a strict Buddhist vegetarian and enjoyed eating cakes. He put pots of golden chrysanthemums on the table and incense whose smoke is believed to carry one’s thoughts and feelings to the gods.
He then opened every door, window and drawer in our house, as well as car doors, and the tool shed to ensure that our grandmother’s spirit could visit and enjoy the food with us for the last time. He then settled in for an all-night vigil.
After helping Dad with preparations, I returned to my small apartment across town, placed flowers and fruit and a candle on the kitchen table, opened the windows and doors and sat through long dark hours of my own small vigil.
I reflected upon the memory of my grandmother: a petite woman who raised six children during World War II by hiding in the mountains and teaching them to forage for snails, rats and wild yams. Her children survived, got educated, and traveled the world. Her American grandchildren learned how to stir fry in her battle-scarred wok, lugged all the way to the U.S. in a suitcase, and peeked curiously as she performed Buddhist prayers each morning in front of the smiling deity.
My vigil ended with the rising of the sun: the candle burnt out, the flowers drooped, and the fragrance of the incense faded. My grandmother, whose name in translation is “Fairy Spirit,” had eaten her fill, and said her goodbyes.
The coronavirus pandemic has drawn new business to start-ups that provide end-of-life services, from estate planning to a final tweet.
By Jennifer Miller
One day in April, as the coronavirus ravaged New York City, 24-year-old Isabelle Rodriguez composed a tweet she would send from the grave.
She wasn’t dying. She wasn’t even sick. In fact, her risk of contracting Covid-19 had been reduced after she was furloughed from her job at a Manhattan bookseller and retreated to her rural hometown, Callahan, Fla. But when she came across the poem “Lady Lazarus,” by Sylvia Plath, Ms. Rodriguez knew she had found the perfect words to mark her digital legacy:
Herr God, Herr Lucifer
Ms. Rodriguez logged on to Cake, a free service that catalogs users’ end-of-life wishes, instructions and documents, and specified that she wanted the verse sent from her Twitter account after her death. “Any of my friends know I’m obsessed with Sylvia Plath,” Ms. Rodriguez said. “That was the best way to put my personality out there one last time.”
Through Cake, Ms. Rodriguez also filled out a “trusted decision maker” form, appointing her younger sister to call the shots should she end up incapacitated. She was still debating other important details: Did she want to be buried or cremated? If the latter, would her ashes be scattered, pressurized into a diamond, composted into tree food? Also, how much would it annoy the guests at her funeral if she requested that her favorite album, “Wolfgang Amadeus Phoenix,” be played on loop?
Ms. Rodriguez conceded that it might seem a little weird to be considering all of this in her mid-20s. On the other hand, young people around the world were getting incredibly sick, incredibly fast.
End-of-life decisions can be overwhelming, but making those choices when she was healthy gave her more control. Knowing that she’d ease the burden on her family if the worst happened also gave her peace of mind. “It would be easier for people around me to know what I want,” she said.
Before the pandemic, end-of-life start-ups — companies that help clients plan funerals, dispose of remains and process grief — had experienced steady to moderate growth. Their founders were mostly women who hoped a mix of technology, customization and fresh thinking could take on the fusty and predominantly male funeral and estate-planning industries.
Still, selling death to people in their 20s and 30s wasn’t easy. Cake’s team sometimes received emails from young adults, wondering if the site wasn’t a tad morbid. Since Covid-19, this has changed. Millennials are newly anxious about their mortality, increasingly comfortable talking about it and more likely to be grieving or know someone who is.
“The stigma and taboos around talking about death have been way reduced,” Cake’s co-founder Suelin Chen, 38, said. This has driven conversation across social media, spurred interest in deathfluencers (they will discuss how funeral homes are responding to the coronavirus but also whether your pet will eat your eyeballs) and increased traffic to end-of-life platforms. From February to June, people signed up with Cake at five times the normal rate.
Another new company, Lantern, which calls itself “the single source of guidance for navigating life before and after a death,” saw a 123 percent increase in users, most of them under 45.
Lantern’s tone is soothing and earnest, but not everyone takes that tack. Cake skews playful. It features a tombstone generator and suggestions like “Viking funeral” and “shoot my ashes into outer space.” New Narrative, an event-planning company for funerals and memorials, introduces itself with a wink: “We’re not your grandma’s funeral (… unless it’s your grandma’s funeral).”
It’s a tricky opportunity for these start-ups to navigate. “When you have a brand that’s directly interfacing with people in the throes of loss and grief, you have to walk a fine line,” said Liz Eddy, 30, Lantern’s co-founder and chief executive.
All these founders stress they’re not trying to capitalize on the coronavirus. But this hasn’t stopped anyone from pivoting hard toward Covid-19. The companies have created new forums and content on how to plan for death, honor the newly dead and grieve virtually. They have initiatives with major health care providers to disseminate their products more widely and formed new partnerships with influencers. The start-ups have even begun to coordinate with one another, sharing tips in a cross-company Slack channel called “Death & Co.”
They are all hoping the pandemic will be the event that turns end-of-life planning — from designing a funeral to writing a will and final tweet — into a common part of adulthood.
The Obituary Game
In 2012, a friend invited Ms. Chen and her fiancé to dinner and suggested they play an unusual party game: Write and share their own obituaries. “It’ll be fun!” the friend said. “They do it at Stanford Business School.”
At first, Ms. Chen was delighted by the exercise: Both she and her fiancé wrote, in the imagined past tense, about a music album they hoped to one day record. But when Ms. Chen started reading what she had written about her career, she was seized with panic and started bawling at the table.
“I just lost it,” she recalled. “It was confusing to me, because I loved my job. I was happy in the most obvious ways, but there was part of me …” She wasn’t sure how to describe the upswell of emotion.
Around this time, Ms. Chen was advising health care companies in commercial strategy. While interviewing last-line cancer physicians, she would constantly run a calculation in the back of her head: “If this treatment extends life by three months, how much money is it worth?” And yet she’d wonder: But at what quality of life? The system of prolonging life at all costs seemed out of whack.
Ms. Chen had also recently lost her grandfather, who died at 95 after a long period of suffering. He lived in Taiwan, where death in very old age is treated as a celebration, Ms. Chen said. And yet there had been a lot of family conflict around the experience.
Amid the pain and relief of her grandfather’s being at rest and the joyful commemoration of his life, Ms. Chen understood that she needed a new path. She didn’t yet know what it would be, but a few years later she met Mark Zhang, a palliative care physician and technologist, at an M.I.T. health care “hackathon.” The pair won first place at the event and went on to found Cake. The platform now includes resources and templates to help users write their obituaries along with guidance for how to get them published.
The venture-backed company makes money through partnerships and will eventually add fee-based services. The pandemic has been especially busy. Cake’s services, for example, soon will be integrated into the website of the British bank RBS/NatWest.
In April, Ms. Chen learned that Partners HealthCare, a large health care system in Massachusetts, was recommending Cake to all its members. Ariadne Labs, run out of the Harvard School of Public Health and Brigham and Women’s Hospital, also came calling. They wanted help distributing their end-of-life conversation guide beyond a relatively small audience of doctors and patients. They also wanted real-time feedback from a young and healthy audience like Cake’s.
Cake also teamed up with Providence Health System, a network of 51 hospitals and 1,000 clinics in seven states, to share Cake’s “trusted decision maker” form, the document specifying an individual’s medical preferences if the person becomes incapacitated. Through Cake, individuals could submit the form to their doctor without needing a notary and two nonfamily witnesses, which are often required but difficult to get under quarantine.
The next step is offering premium services, tailored to different types of users. “Are you here because you just lost someone, or because you just had a kid, or have an aging parent, or because a celebrity just died and you had an existential crisis?” Ms. Chen said. “We’re trying to automate based on what we know about the person.”
The Pandemic Hits
In April, Ms. Chen learned that her head of product’s grandfather had died from Covid-19. She had heard of people texting and messaging their condolences, but even email seemed inappropriate, overly impersonal. Unsure of what to do, she turned to Cake. Following an article from the site, Ms. Chen shipped her colleague soup, rolls and cookies with a note: If and when you’re ready, I’d love to hear more about your grandfather.
“In the modern age, the norms around supporting people who are grieving are not super clear,” Ms. Chen said. “It used to be that you belonged to a religious community or lived in a small town, but now we’re far away from where we grew up. We’re more secular.”
During the pandemic, condolence-related traffic on Cake doubled. To address the need, the company started a forum where users can crowdsource their questions and concerns.
Lantern provides its own grief and condolence content, including a “pandemic-proof” guide to “inclusively addressing grief at work.” In recent months, more people are grieving on the job, where the emotional distress for people of color over high Black and Latino rates of coronavirus infection is compounded by anguish over police brutality.
“Especially during Covid, it’s how can you incorporate the grieving process into 9-to-5 and day-to-day work?” said Alica Forneret, 31, who runs grief workshops and just started a namesake consulting agency to help companies address this question. “Employers, managers and H.R. need to understand there’s an extra burden on people of color and especially Black people when they sit down at their computer in the morning and are expected to engage and perform.”
For Ms. Forneret and other millennial founders, preparing for death and navigating grief during the pandemic has become a form of self-care. That has created new opportunities and partnerships. When Ms. Eddy pitched funders, she situated Lantern’s end-of-life services as an untapped market in the $4.5 trillion global wellness industry.
“We’ve been called a niche market,” she said. “But death and dying is possibly the least niche market out there.”
Corporations are rethinking the wellness programs they’re offering employees, Ms. Eddy said. They’re no longer just gym memberships and kombucha on tap. Studies have found that being able to talk about your mortality makes you a happier person and improves your relationships. The thinking, for employers perhaps, is that access to end-of-life services can make people happier (and more productive) at work.
This market potential is also why Near, a start-up that connects users with grief and end-of-life support services, like death doulas and art, sound, music and massage therapists, recently decided to seek investment. The company also moved its debut from September to June and is expanding its offerings to even more unconventional end-care providers like end-of-life photographers.
“Before Covid, we were looking at being a smaller platform. We’d be able to keep up with need through bootstrapping,” a Near co-founder, Christy Knutson, 36, said. “But the demand is far greater.”
This spring, a beauty writer and skin-care company chief executive, Charlotte Palermino, approached Lantern about co-hosting an Instagram Live. She had been watching her friends “panic post” death rates and was feeling increasingly anxious.
“I know people who got really sick, were suddenly on ventilators in their 30s,” Ms. Palermino, 33, said. She received such an overwhelming response from her followers that in June, she filmed a similar video for her Generation Z audience on TikTok.
Death & Co.
In May, a large senior care company asked Ms. Eddy about a partnership. Ms. Eddy, who declined to identify the company, was intrigued but skeptical. In search of guidance, she did something that would normally be unexpected. She reached out to Ms. Chen at Cake, Lantern’s closest competitor.
Ms. Chen wasn’t surprised to hear from Ms. Eddy. In fact, she said, this kind of collaboration is frequent among end-of-life chief executives. “There’s a lot of texting and calling all the time: who are the good investors, the partners, give me the lowdown on these people,” she said.
The most common means of communication among end-of-life founders — and where Ms. Eddy went to reach Ms. Chen — is the cheekily titled Death & Co. channel on Slack. It was born in December during End Well, a conference about improving the culture, products and policy around end of life.
After one of the sessions, a handful of female founders gathered for an impromptu happy hour. They bonded over the rarity of having so many women running companies in the same industry, all them, in one way or another, trying to challenge the corporate, predominantly male funeral industry.
They discussed the difficulties of securing funding as womenand the challenges of trying to make a distinctly unsexy product accessible and affordable. Ms. Chen said a male founder had told her: “No one thinks about death. I don’t. I’m immortal.” Ms. Eddy said another had told her that he thought she’d be more successful if she created the “Tesla” of end-of-life services.
The women decided to start a WhatsApp group, which one of them named “Death Chicks.” A couple of months later, with more people wanting to join, including a handful of men, Ms. Eddy moved everything to Slack and renamed it Death & Co. For some months, the group was largely dormant. That changed in March.
“At the beginning of coronavirus, we came together and said this can all be reimagined with alternative, more modern solutions,” said Christina Andreola, 31, the founder of New Narrative, who joined the Slack channel in March. “My colleagues were asking: How can we team up to be competitive?”
The channel has around 70 members. They have worked together on a white paper about the funeral industry and Covid-19, raised funds for personal protective equipment for funeral directors and created short video guides for health care workers to talk about end-of-life options with their patients. Eterneva, a company that turns ashes into diamond jewelry, used the group to start a series of Instagram Lives about collective grief. LifeWeb360, which creates multimedia memorial scrapbooks, teamed up with New Narrative to create resource guides for planning virtual memorials.
The women have also freely shared connections and leads. Ms. Knutson of Near joined Death & Co. in March. She used the group to meet end-of-life photographers, a small and elusive set, and expand her provider list of death doulas, caregivers who help dying individuals navigate the end-of-life process.
“Overnight I walked into a virtual room with loads of smart, driven leaders who are building things that it would have taken me months if not years to hear about otherwise,” she said.
Not everyone is finding what he or she needs at Death & Co. Ms. Forneret, one of the few Black members, left after the police killing of George Floyd in Minneapolis in May. She said that the channel had done a lot of good for the industry and that she worked closely with Ms. Eddy and other members. But at this moment, she wants to align herself with other founders of color, she said.
In mid-June, Ms. Forneret participated in a Zoom panel featuring five Black entrepreneurs. The topic: how to have a “good death” in a racist society. The event was organized by Alua Arthur, 42, who runs a death doula training company, Going With Grace.
Ms. Arthur serves as an adviser to Cake and Near and has become a de facto spokeswoman for Black-owned death care businesses, especially in the last couple of months. She has become exhausted in this role and said end-of-life start-ups should be working harder to reach communities of color, which are largely underserved in the industry.
Even so, all of these founders share a mission: to democratize end-of-life planning and care. Ms. Arthur said the searchable database and broad collection of providers on Near were a step in the right direction.
Trust and Will, a company that bills itself as Turbo Tax for estate planning, charges a small fraction of what most lawyers do. Eterneva, the company that turns your loved one’s body into bling, just rolled out financing. Cake’s and Lantern’s basic preplanning services are free. Given that the average cost of a funeral in 2019 was $7,640, this kind of foresight could reduce the cost of dying. Because maybe you don’t want to languish on a ventilator or need a fancy coffin.
At the very least, when we can personalize our deaths the way we do our weddings and our wardrobes, we can feel a little more control over life’s greatest uncertainty. It’s something of a silver lining to this very scary moment.
“We’re never going back to the way it was,” Ms. Chen said. “That’s a positive thing — to accept the reality that we’re not immortal.”
Jennifer Miller is the author most recently of the novel “Mr. Nice Guy.” Her next book follows a year in the lives of first-generation college students.
One year ago on this date, July 11, 2019, my wife, Norma, was freed from the prison of Alzheimer’s disease. So exactly one year later it is appropriate to celebrate Norma Houghton’s life and share with my readers personal reflections on my recovery.
You who have been with me all the way from diagnosis in 2010 to last summers’ final breath know the documented story of a lady who gave an extraordinary gift to sacrifice her privacy to help others. The sadness in over 10 years of seeing her drift away was softened by the concern of many readers, as well as numerous caregivers.
My restoration and renewal following our 57 years of marriage has been facilitated in part by periodic messages this past year from her hospice caregivers from Compassus. A healing journey of recurring memories was predicted by their periodic communication.
Norma’s good works have been recognized with the Norma A. Houghton Staff Award in the Birthing Center of Monadnock Community Hospital and an annual scholarship for a graduating student from one of our three local high schools choosing higher education in nursing.
As past co-chair of the Western New Hampshire Walk to End Alzheimer’s, I have been given the satisfying task of using my wife’s story as a monthly “mission moment” to cheer on the current walk committee through the challenges of planning a major event during the pandemic.
So her legacy lives on and, though grief has come to my life, spiritual growth and a new life have also emerged as predicted and aided by Compassus. I can now see that hospice is not about dying but helping caregivers and patients live life to the fullest.
When our time on Earth comes near a close, the choice of hospice provides a better quality of life than if aggressive end-of-life medical care were applied. Dr. Gawande’s classic treatise, “Being Mortal,” about “medicine and what matters in the end,” is on point.
You may remember an early column about full body donation for medical education. I expect next week to travel to Boston University Medical School to bring Norma’s ashes back to Jaffrey. Plans are being laid at the United Church to develop a memorial garden as a final resting place for beloved members of the church.
If you want to find out more about hospice services, visit the hospice and palliative care organization (www.nhpco.org). It is not true that hospice is only for the final days or hours of life. Hospice is about helping patients and their families have the best possible quality of life as they can when life expectancy is limited.
Usually a patient’s doctor and the hospice medical director work together to offer experience with hospice criteria, guidelines and clinical judgements. Hospice Medicare coverage includes nurses, other caregivers, medicines, supplies and equipment, with little or no cost to patients, families or caregivers.
Clearly for me hospice care provided even more than medical, emotional, social and spiritual support. I find myself surrounded with family and friends who share my loving memories of Norma and continue to offer peace and support as I come to this special date.
Compassus gave me positive relief and strength during a time of extended grief, allowing me to create appropriate remembrances and lasting reminders of a life well lived. Since they suggested a celebration on the anniversary of my loved one’s death, isn’t it a joy that my July column is published as a tribute on this very date!
“Enjoy life. Have fun. Be kind. Have worth. Have friends. Be honest.
“Laugh. Die with dignity. Make the most of it. It’s all we’ve got!”
The voices of Black, Indigenous, and People of Color (BIPOC) need to be amplified so we are going to use our newsletter and social media platforms to aid in their sharing. Here are a few resources for us to explore racism, privilege, and bias in death care:
Sayin It Louder: A Conversation About “A Good Death” in a Racist Society.
For centuries Bali’s Trunyanese people have left their dead to decompose in the open, the bodies placed in bamboo cages until only the skeletons remain.
It is a ritual they haven’t given up — even as the COVID-19 pandemic upends burial practices worldwide with religious leaders in protective gear, cemetary workers in hazmat suits, and mourners banned or unable to comfort each other because of social-distancing rules.
Across Indonesia funeral workers are now required to wear protective equipment and bodies are laid to rest quickly, all in a bid to prevent the spread of the deadly respiratory disease.
But in Bali local officials claim the novel coronavirus, which has infected at least eight million and killed more than 430,000 globally, has yet to reach the remote north east where the Trunyan live.
“The funeral process remains the same but now we have to wear masks,” explained village head Wayan Arjuna.
Tourists are temporarily banned from visiting for fear of them bringing in the disease, he adds.
“We’re afraid of getting COVID-19,” said Arjuna, but added there was no suggestion of stopping the open-air burial process.
Unlike many in the rest of Hindu-majority Bali, the Trunyanese — who fuse animist beliefs and traditional village customs with their own interpretation of Hinduism — do not bury or cremate their dead.
Instead they let nature take its course as the corpses decay in the open, believing it to be a way to keep a link with the deceased.
“This makes us feel connected to our loved ones,” Arjuna said.
“Like when my grandmother died, I felt like she was close”, he added.
– Skull Island –
It is a short boat ride to their open-air cemetery from tiny Trunyan village, overlooked by volcano Mount Batur and a sprawling Hindu temple carved out of volcanic rock.
There are 11 cages for the corpses — placed close to a fragrant banyan tree that hides the putrid smell of death, locals say.
In one cage, a recently deceased woman could almost have been mistaken for someone sleeping, but her waxy greying complexion revealed the truth.
Nearby, a flesh-less foot poked out of clothing left on the bodies, while a skeletal jaw lay agape in another cage.
“I used to be a little scared working here, but it’s been so long now that I’m used to it,” said veteran guide Wayan Sukarmin, who was spent 20 years showing people the custom on what outsiders have dubbed “Skull Island”.
When AFP visited in February before the World Health Organisation declared a pandemic and travel restrictions were put in place, signs warned visitors to wear appropriate clothing and refrain from using bad language.
Rubber sandals, cigarette packages, toothpaste tubes and pots and pans were scattered around the site, along with baskets filled with coins and crumpled money — all left by mourners for dead relatives to use in the afterlife.
“Locals won’t take anything because it belongs to the dead. That’s our belief,” Sukarmin said.
“I don’t know what the consequences would be if you took something but I believe in karma,” he added.
– Millennia-old custom –
If the cages become full then older corpses are moved to an open ossuary, to make way for new ones.
Then when there is no flesh left, the skulls of the long dead are placed upon a stone altar, until they too crumble back into nature.
Nearby, there is a second cemetery for the unmarried and children, while a third location is for those who died unnatural deaths like murder or passed away from acute illness.
The Bali Aga — or mountain people — who live in these isolated villages, claim to be descendents of the original Balinese and the main temple in Trunyan village dates back to the 10th century according to historical records.
The origin of the custom of open-air burials is subject to debate.
One legend has it that the area’s early inhabitants fought over the prized Banyan tree, so to keep the peace, leaders decided to place the dead there, believing the smell from the corpses would make the spot less attractive.
Another story suggests that the ritual was adopted to avoid angering the rumbling volcano nearby by cremating people.
“There are several versions of the legend so I can’t decide which one is correct,” Arjuna said.
But these open-air burials are now so rooted in the culture that few expect much to change in Trunyan, even as the pandemic ravages the world.
“It’s relatively easier to prevent infections in isolated and faraway places,” said Bali’s virus taskforce chief Dewa Made Indra.
“There aren’t any reported cases in Trunyan. But if that happens then we’ll handle it with special procedures and I think the villagers will understand.”
I have spent a significant amount of time examining correctional health care practices and believe the process of dying in prison is one in which human dignity can be lost.
Prisoners grow old faster and become sick earlier. By 2030 some experts believe that one in three prisoners will be over the age of 55, increasing the likely population of prisoners diagnosed with conditions such as cancer, heart disease, liver and kidney disease, high blood pressure and diabetes.
A recent Bureau of Justice Statistics report revealed a startling increase in state prisoner mortality. Between 2006 and 2016, the last year for which the study provided data, there were more than 53,000 deaths in custody. More than half of the 3,739 deaths in custody in 2016 resulted from just two illnesses – cancer (30%) and heart disease (28%).
The proportion of prisoners requiring end-of-life care is twice as high as the general population.
Outside prison walls, a diagnosis of a terminal illness often means gathering friends and family to repair and restore relationships and thinking about end-of-life options. The coronavirus has, of course, affected who can be present in someone’s last moments, but the terminally ill still have options over their medical care, pain management, who to tell and how, and getting affairs in order. For prisoners, such choices are constrained by state regulation. Prisons are not well-equipped to provide human dignity at the end of life. Terminally ill prisoners have two options: compassionate release or end-of-life care behind bars.
Offering early release or parole to prisoners diagnosed with debilitating, serious and often terminal illnesses is considered compassionate release. Many in the medical profession consider compassionate release a constitutionally protected right as incarceration of prisoners with debilitating illness undermines medical care and human dignity. Others see compassionate release as a way to reduce correctional health care costs for a population posing little risk to the public. Iowa is the only state without a compassionate release law.
The process of qualifying for compassionate release is complex and statistics on how many succeed are hard to obtain, although we know the numbers are small. Prisoners’ medical conditions, age and time served determine eligibility. But exclusion criteria are extensive. For example, prisoners committing the most serious crimes are excluded. Most states allow stakeholders such as victims, police and court professionals an opportunity to say no.
For the terminally ill, release is often dependent on one’s “death clock” – how many months a medical professional certifies that you likely have before dying. In some states like Kansas and Louisiana, death must be imminent – within 30 to 60 days. In others like Massachusetts and Rhode Island, prisoners with as long as 18 months to live may be released. Applying for compassionate release can be daunting for someone with only months to live. Sadly, some die before they can complete the process.
Even if an inmate does get out, their family may be ill-equipped to deal with the challenges of caring for a dying loved one. In these cases, release may result in transition from one restrictive, isolated, institutional setting to another with care provided by unfamiliar medical professionals.
States must provide medical care to prisoners even though they are being punished for a crime. But the quality of such care is often inadequate. The prisoner does not get to select medical options; care is determined by the state. Death could mean dying alone in a prison cell, in an infirmary with only periodic check-ins from a nurse and prison volunteers or in a hospice unit managed by the state.
Pain management may be restricted by correctional policy and by staff who are reluctant to administer narcotics, such as morphine, to ease suffering out of concern that it could be sold or used illicitly. A recent report in the American Society of Clinical Oncology Post discussed how inadequate care caused unnecessary pain and suffering in prison and concluded: “No one in a wealthy and socially advanced country like the United States should suffer from untreated pain, especially at the end of life.”
While families are allowed to visit terminally ill prisoners, notification of the illness rests with the prisoner – a daunting task if the prisoner has lost touch with relatives over years incarcerated. State prisoners are often confined far from home, so even family members who would like to visit may be hampered by distance and cost. Another challenge for families is the bureaucratic process of prison admission. It is correctional staff at the gates rather than medical professionals determining who gets to visit on any given day.
Access to a mainstream faith leaders and last rites are provided when available. But it is not uncommon to find spiritual practices for the dying prisoner carried out by fellow prisoners.
For terminally ill prisoners “getting one’s affairs in order” includes trying to identify someone in the community willing to take responsibility for their body after death and ownership of personal effects gathered during incarceration. Even if the prisoner identifies a relative willing to take responsibility, there are no guarantees. A relative may be disqualified from handling prisoner affairs. In Ohio, for example, if the prisoner’s loved one is unable to accept the body within two days after notification, the relative may be disqualified.
If no one comes forward, then the prisoner will be buried in an indigent grave and prison officials will dispose of the prisoner’s belongings and monies remaining on prisoner accounts.