Each day we create a wealth of online data, especially on social media
By Susan Brown
Few of us plan our legacy for when we’ve died and how we’ll live on in the lives of others. At Marie Curie our nurses help terminally-ill people to create memories for their loved ones. One nurse helped create a mixed music playlist to help a spouse sleep when their loved one is no longer lying next to them. Others helped to record stories, write letters or capture photographs. These are all very intimate and physical legacies, but as technology advances and we are increasingly living more of our lives online, it’s time to think about what people’s digital legacies will be.
In an increasingly digital world, we’ve shared online mourning when a celebrity dies, we’ve grieved when people we met online have died, and we’ve also been touched by stories of people online that we didn’t know.
Most of us have digital assets and online accounts. We need to think about what will happen to them when we die and if we want to leave a digital legacy online.
The Law Society advises that people should leave instructions about what should happen to their social media and online accounts after their death. The Digital Legacy Association has materials on its website to help people consider and leave a digital will.
There’s been a recent trend of video blogging, where people tell their stories to be shared after their death. Facebook has a feature to allow accounts to be memorialised so you can set a legacy contact to manage your account. Other technologies, such as Afterbook, enable you to create a home for memories, stories and photos.
It’s important to think about what you want to leave behind, and how you want to be remembered online. It’s also important to consider who owns any data left behind, how accessible and enduring that data will be, and how it will be protected.
In my lifetime we’ve seen incredible advances in technology. We’ve moved from VHS to DVD to Blu-ray. We’ve gone from no mobile phones to basic Nokia 3210s to the iPhone. Likewise, the way we interact online has changed. The first social media site was launched in 1997. Two years later, the first blogging sites were established and in the early 2000s we saw sites such as Myspace and Bebo which have either been replaced or lost the popularity they once had.
Are we naïve to think that any of the current websites and software will still be available and as commonly used in the next 20, 50 or 100 years? It’s impossible to accurately predict what the world will look like then.
Unless data is transferred across platforms, carefully planned online legacies may not be accessible to others in the future.
Even if they are, memorialising a Facebook page doesn’t ensure that what we want to be left behind will be seen. There’s a whole wealth of data on my social media to sift through, data that it’s likely no one will want to access in the future.
In comparison though, my grandfather was a plane navigator in the Second World War. I know this because he’s told me his stories, I’ve seen the photographs and held his medals in my hand. Although he is still alive, his memory will live on and will be passed down generations.
It’s interesting that physical artefacts could stand the test of time more than digital artefacts. There’s a common perception that when something is online, it will last forever, but that might not be the case.
These are all concepts explored in prominent psychologist Elaine Kasket’s new book, All the Ghosts in the Machine. Elaine highlights that while privacy is a fundamental human right, it is not a right for the dead. There is no legislation that protects people’s privacy when they’re gone. A digital will can ensure that only certain people can access someone’s data, but that might have serious implications, especially if a loved one finds information in an online account that the person never intended to share and is no longer there to explain. That’s part of a digital legacy too, and can cause real pain to those left behind. What can that do to the grieving process of the bereaved?
It comes to us all in the end. But despite the inevitability of death, few of us feel comfortable talking about it and most have made no plans for how we would like our final moments to play out, according to research.
Now, leading experts from the Academy of Medical Sciences are launching a campaign aimed at making death a more acceptable topic of conversation.
Prof Dame Lesley Fallowfield, a cancer psychologist at the University of Sussex, is urging people to draw up death plans, much like they prepare for the birth of a baby.
“We have birth plans where people record what they’d prefer to happen,” she said. “We all know that events sometimes supersede your wishes, but we can think it through and make it the best it can possibly be. Making a death plan shouldn’t be seen as a macabre thing to do.”
Fallowfield said failure to plan and talk about death meant many people do not spend their final weeks and hours as they would have chosen and families are frequently left with regrets.
A poll by the academy, conducted by Ipsos Mori and published this week, found that six in 10 people feel they know little or nothing about the final hours of life, with many people getting information about dying from documentaries or soaps rather than conversations with medical professionals.
One third of the nearly 1,000 people who participated in face-to-face interviews declined to answer questions about death and dying, suggesting that many feel uncomfortable talking about the subject. “Challenging this taboo is at the heart of the academy’s national campaign,” said Prof Sir Robert Lechler, the academy’s president.
To jump-start the conversation, the academy has opened a pop-up installation, The Departure Lounge, at Lewisham shopping centre in south-east London, aimed at engaging people with the topic. Occupying what was previously a mobile phone shop, it features a large pile of suitcases emblazoned with messages and questions about the final journey we all face.
On the first day of its month-long residency, it prompted mixed reactions from shoppers.
Michelle Charlesworth, 35, from Lewisham, said that as a result of her visit she was planning to write down what she would like to happen when she dies. “It takes that responsibility off your loved ones,” she said. “It sounds like a small thing, but I’d want to be in a really nice pair of pyjamas. I’d probably want to be cremated or buried in them too, actually.”
The Departure Lounge has prompted some to make plans for their death.
Bella Vivat, who works in palliative care research at UCL, said visiting had convinced her to draw up an advanced directive, a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves. “We live our lives as though we’re not going to die,” she said. “I’m going to go away today and do that.”
Bambii Nzinga, 24, an actor and screenwriter, who is working as a host at the installation, said she initially took on the job because she thought it might provide interesting writing material. Then her four-year-old son started asking her about death. “I was so prepared for the birds and the bees conversation,” she said. “But when he asked me if I was going to die, I didn’t know what to say.”
On the spur of the moment she told him she was never going to die, but has since revised her answer. “Children are happy to talk about death, it’s us that put the fear in them,” she said.
Some wandered into the lounge under the impression that a suitcase sale was underway and looked baffled after reading signs such as “everybody’s got to die of something”. “I’m not ready for death,” one unsuspecting shopper exclaimed making a quick exit.
Smaller versions of the lounge will be appearing at 30 other locations across the UK over the summer.
Fallowfield said that while death was normally sad, failing to talk about the inevitable can make the experience more traumatic for both the person who is dying and their relatives afterwards. “It’s quite awful when you see families who’ve never talked about it having these hollow conversations and feigned smiles about a future that’s never going to be realised,” she said. “When you see families who have openly acknowledged death, they often share sad and tearful moments, but also laugh and comfort each other.”
The poll found that people were around as likely to get information about death from documentaries (20%) or films, dramas and soaps (16%) as they are from medical professionals (22%). The distressing or even glamourised portrayals of death in films and television meant that people may be getting a unrealistic picture of what lies ahead.
“In films you often get dying words – someone gasping out things like ‘Please tell Jim I love him’, which sort of makes me laugh,” said Fallowfield. “I’ve never seen that happen.”
Instead, she said, people normally “quietly drift away”. “They start to lose consciousness, their breathing may become laboured,” she said. “It’s really important to hold their hand and continue talking to them. That makes you feel good too. It doesn’t necessarily have to be horribly traumatic.”
Not long after they die, even the best novelists start to stink.
Maybe that explains why we have so few great stories about what happens after we die. The novelistic tradition is rich with deathbed scenes and moving explorations of grief, but serious fiction about mortality inevitably stops at death’s door. Remarking this pattern in 1927, E. M. Forster blamed novelists’ hesitation to write about the dead on the dead themselves. “[D]eath is coming,” he admits in his influential treatise Aspects of the Novel, but we cannot write about it in any convincing way because — as the saying goes — dead men tell no tales. “Our final experience, like our first, is conjectural,” he concludes. “We move between two darknesses.”
Forster’s reasoning seems sound enough. If we want to move from a pathologically death-phobic culture to a more well-adjusted one, however, we need to rethink our cultural tradition of giving death the silent treatment. That is the sentiment underlying the death-positive movement, a loose collective of artists, writers, academics, and funeral industry professionals agitating for more open conversations about dying. As the mortician and author Caitlin Doughty explains in her bestselling memoir Smoke Gets in Your Eyes, “A culture that denies death is a barrier to achieving a good death.”
At the very minimum, our culture of death denial creates a population unprepared for the inevitability of death, one in which every dying individual burdens family and friends with painful healthcare decisions, legal battles, and property disputes that could have been avoided with a little forethought. At its worst, death denial promotes a youth- and health-obsessed society whose inability to address death fuels overwhelming feelings of anxiety, depression, and powerlessness in the face of illness and age.
As Doughty — perhaps the most prominent figure of the death-positive movement — admits at the end of her memoir, “Overcoming our fears and wild misconceptions about death will be no small task.” She looks to the medieval spiritual guidebooks known as Ars Moriendi (Latin for “The Art of Dying”) for inspiration. We need to re-teach ourselves how to die, she argues — a process that begins with an open admission of our thoughts, fears, and beliefs about death. Treating death as a hushed affair will only make matters worse. “Let us instead reclaim our mortality,” she concludes, “writing our own Ars Moriendi for the modern world with bold, fearless strokes.”
We need to re-teach ourselves how to die—a process that begins with an open admission of our thoughts, fears, and beliefs about death.
The spate of books on death and dying published in the past two years suggests that many writers have taken Doughty’s words to heart. These works run the gamut from a grisly history of Victorian surgery to a study of American hauntings, and they include the lavishly illustrated essay collection Death: A Graveside Companion and Doughty’s own From Here to Eternity, a comparative analysis of death practices from around the world. For a group interested in the art of dying, however, the death-positive movement is strikingly uninterested in art of the literary variety: in its concentration on turning a spotlight on the facts of death, the death-positive movement has not yet explored the relationship between death and fiction.
If we want to reclaim the good death as part of the good life, we need to consider how we incorporate death in the stories we tell about ourselves. When we tacitly treat death as The End of every individual’s story, we only increase a collective sense of death’s unspeakability. What lies beyond the grave seems unthinkable in part because it remains unimaginable. Yet if Forster is right, it seems we are at an impasse: given the silence of the tomb, how can storytellers represent death as something other than a final stop?
If we want to reclaim the good death as part of the good life, we need to consider how we incorporate death in the stories we tell about ourselves.
Two award-winning attempts at writing the afterlife — one from 1999 and one from 2017 — offer two different approaches to answering the question. Taken together, Being Dead and Lincoln in the Bardo show that it is possible to tell smart, powerful stories that represent death as something other than a stunningly final silence. They also show that the precise forms such stories take have profound implications for the ways we value life, and the ways we understand the place of death within it.
The very title of Jim Crace’s Being Dead promises tantalizing access to that posthumous experience that Forster believed to be off limits. Yet there is a bit of a bait-and-switch here: Crace’s novel leaves little room for speculative adventures into otherworldly existence. Being Dead is a postmortem story in an almost clinical sense. It tells the love story of Joseph and Celice, two young scientists who get married, raise a daughter, and settle into late life together. But if this is love, it is love under the knife: Crace’s scalpel-sharp realism cuts to the heart of desire with a kind of ruthless detachment unmatched since Flaubert.
The result is less the touching portrait of a couple than an autopsy of their relationship — and that is only appropriate, because the novel opens with their murder. Joseph and Celice die of a kind of misplaced nostalgia. They have unnecessarily returned, in late middle age, to the sand dunes where they first conducted research together and gave in to youthful passion. The explicit purpose of their trip is to visit the dunes one last time before the place is destroyed by encroaching development. But the couple’s desire, here and elsewhere, is divided: Celice wants to make peace with the death of a friend that occurred exactly as she and Joseph first fell for each other, while Joseph only wants to reenact their tryst on the dunes.
Joseph’s “plan” is utterly transparent to Celice, who indulges him out of pity rather than affection. Their actual encounter ends in embarrassment; Joseph finishes before it starts. They resolve to try again after lunch but never get that chance. A furious stranger stumbles across the defenseless, naked pair as they sit together, and he bashes their skulls in with a rock.
Because the couple has already died as the story begins, the novel proceeds by alternating backward glances with real-time narration, interspersing Joseph and Cecile’s love story with the lurid details of their bodily decomposition. The result is touching and gruesome by turns, but not necessarily in the ways you would expect: the descriptions of decay offer welcome relief from the cringeworthy details of the awkward, lopsided desires that brought the couple together. The novel seems, in fact, to struggle with its own inevitable slide toward the romanticization of decay. “Do not be fooled,” Crace admonishes his reader early on:
There was no beauty for them in the dunes, no painterly tranquility in death framed by the sky, the ocean and the land, that pious trinity in which their two bodies, supine, prone, were posed as lifeless waxworks of themselves, sweetly unperturbed and ruffled only by the wind. This was an ugly scene. They had been shamed. They were undignified.
Yet Crace lingers almost lovingly over Joseph and Celice’s bodily transformations as they lie exposed among the seagrass. While their love life is painfully prosaic, the passages that describe their undiscovered bodies flirt with a far more idealistic vision of human attachment:
But the rain, the wind, the shooting stars, the maggots and the shame had not succeeded yet in blowing them away or bringing to an end their days of grace. There’d been no thunderclap so far. His hand was touching her. The flesh on flesh. The fingertip across the tendon strings. He still held on. She still was held.
Being Dead manages to recast our bodily afterlives as something not only speakable, but significant. It does so, however, by valorizing the unconscious peace of our material remains, casting that as preferable to the despicable fumblings of actual life. The intimacy of Joseph and Celice is only unproblematic when they have become unfeeling matter, generously supplying the landscape with the nutrients sloughing off their unprotected flesh. If Being Dead achieves an unusually death-positive outlook, it achieves it by becoming decidedly life-negative.
George Saunders’s more recent exploration of experience after death takes a radically different approach. Whereas Being Dead aligns itself with a kind of scientific detachment, Saunders’s Lincoln in the Bardo proves exuberantly grotesque from the outset. The story opens with the middle-aged Hans Vollman describing his gradual, tender seduction of his young wife. Alas, on the very day she promises to give herself to him, a loose beam falls and crushes his skull. Unable to accept the fact of his permanently unconsummated marriage, Vollman haunts the cemetery where he is buried, joining a number of other lingering spirits who convince themselves they are merely sick and will soon recover.
Saunders does not deal with decomposition in the straightforward way favored by Crace. His dead characters experience a progressive material instability instead, as they undergo bodily embarrassments that range from the familiar to the fantastic. Hans’s earthly fixations, for example, make him appear to other spirits with an oversized and irrepressible erection. He repeatedly bumbles into discussion of his physical shortcomings, from the baldness and lameness that plagued him in life to the mortifying fact that he pooped his pants after death. His fellow revenants suffer similar corporeal distortions: Roger Bevins III, a Whitmanian poet who killed himself in a fit of passion, fights to suppress the shapeshifting, hungry bundles of hands and eyes that sprout from his body in futile attempts to grasp after the experiences he denied himself by taking his own life.
If death positivity means staring unpleasant facts in the face, Being Dead would seem to be a more death-positive novel than Lincoln in the Bardo. Crace treats both the issue of decomposition and the unconsciousness of the dead in frank terms, whereas Saunders passes over putrefaction to depict a world where the dead might yet live — at least temporarily. But reading the texts together suggests that death positivity cannot emerge from objective attention to facts alone. In fact, Lincoln in the Bardo reveals that the fascination with prurient facts that underpins Being Dead emerges from a kind of puritanical fear of our fleshly existence, a fear inseparable from the novel’s reliance on an omniscient narrator.
We have become comfortable with the idea that a story can be told by the all-seeing eye of a disembodied voice. Strictly speaking, however, this supposedly objective “view from nowhere” is an absurd fiction — at least as impractical and unrealistic as any postmortem point of view. The impracticality of objective narration is especially apparent in Being Dead because the novel is so preoccupied with death, the very moment supposed to divide subjective from objective existence.
By viewing the bodily histories of Joseph and Celice from the outside, the narrator of Being Dead does them — and us — a disservice. The novel only pretends to a fearlessly honest account of human bodies, when its perspective is essentially fearful. Rather than acknowledging the embodied experience the author shares with his subject matter, it retreats into the sham detachment of an etherealized narrator, an imaginary voice pretending to possess unearthly objectivity.
The result is an impossibly disembodied account of what bodies are, one that ends up portraying all embodied consciousness as disappointing, limited, and pitiful. Rather than treating death as an inevitable part of a continuous material experience we all share, Being Dead idealizes it in the way it idealizes all objectivity: in Being Dead, death offers a welcome break from the painful awkwardness of embodied consciousness. Saunders, by contrast, dives with rollicking good humor into the oddness of bodies, acknowledging such awkwardness — and embracing bodies all the more for it.
Lincoln in the Bardo has no imaginary narrator watching earthly existence from the outside. The story is told through a series of (mostly dead) characters whose interwoven monologues clumsily strive to explain their current state while avoiding any admission of their own deaths. The result is a world — the Bardo — that seems, at first, sui generis, a marvelous oddity sprung from the mind of one of our foremost storytellers. Soon, however, it acquires an uncanny familiarity.
For all its unworldliness, the community Saunders depicts is very like our own. His novel is a gently satirical portrait of a society founded on an elaborate charade of death denial; the plot turns on the shades’ need to realize the absurdity of the fiction that they can avoid their own deaths. It begins with the introduction of a newcomer — a freshly dead soul who is promptly welcomed with Vollman’s raunchy monologue. But Vollman is suddenly (and hilariously) taken aback to discover that he has just told his tale of penises and poop to a young, innocent, sad-faced boy who turns out to be the president’s son, Willie Lincoln, who has died of typhoid fever in the early days of the Civil War.
The timing of this weirdest of historical fictions cannot be coincidental. As Doughty and others have observed, the American Civil War marks the starting point of the modern death industry. Embalming, once considered a ghastly and unnatural process, became mainstream in the United States when families faced with the logistical problem of transporting bodies intact over long distances — the bodies of soldiers who were dying in unprecedented numbers far from their birthplaces. Embalming solved the problem, but it required a new kind of expertise. Suddenly the preparation of bodies — once an intimate affair, largely the work of women who cleaned and dressed their dead at home — became an invasive professional process. The Civil War thus launched the profession of the funeral director into the mainstream, driving a wedge between Americans and their dead.
Saunders’s novel offers us a glimpse of a more intimate antebellum relation with the dead to remind us of what we lost. It offers a profoundly moving account of an entire community of people awakening to an awareness of their own mortality. The story is simple enough: the denizens of the cemetery welcome young Willie, then watch in confusion as Abraham Lincoln repeatedly returns to his son’s tomb after dark to open it and embrace the body. As they look on, the roving spirits begin to recognize the loathing of their own bodies that lies at the heart of their death denial. The spirits speak in a series of rapid epiphanies about their own self-hatred, triggered by the loving touch Lincoln bestows on his son:
To be touched so lovingly, so fondly, as if one were still —
—roger bevins iii
Healthy.
—hans vollman
As if one were still worthy of affection and respect?
It was cheering. It gave us hope.
—the reverend everly thomas
We were perhaps not so unlovable as we had come to believe.
—roger bevins iii
The intimate attachment of the dead with the living fills them — and us — with something other than horror. It provokes surprise that gives way to admiration and awe as the dead realize that their shared fate does not deserve the hatred they have wasted on it.
It is an impressive portrait of a world to come. Of course Lincoln in the Bardo is, finally, a fiction — and a deeply unrealistic one at that. Nevertheless, the novel’s fantastical qualities do not make it less useful to the death-positive movement. If anything, its very lack of realism clarifies the important role fiction must play in our collective struggle to reimagine our relationship with death.
Lincoln in the Bardo shows accepting death to be inextricable from accepting the oddness of bodies. In Lincoln’s repeated visits to the cemetery, the spirits discover an individual not only unafraid of bodies but positively in love with one. Lincoln’s conflictedness shows him loving his son as a physical being — even in his diminished, postmortem form — and indulging that love precisely because he knows the body cannot last, that he must finally let it go.
What Vollman, Bevins, and the others come to understand through Lincoln’s example is how to reattach their senses of identity to their bodies. They learn to be generous to themselves as messy material beings, to include both their bodily joys and their bodily fallibility into their essential understanding of what it means to be. When they accept this epiphany they vanish, receding into something beyond our reach. But that disappearance no longer feels like an abrupt rupture of subjective experience, or something at odds with life. Death becomes, instead, a kind of higher accomplishment — a letting-go that most of us are not yet ready to aspire to.
That kind of awed acceptance is finally unavailable to Being Dead. Crace’s novel revels in a species of passionless scientific accuracy whose view is finally less able to understand death, and less able to represent it, precisely because death is such a deeply subjective experience. Death, in other words, only happens to subjects, to embodied beings immersed in material experience. That is precisely the experience that Being Dead, like works of strict nonfiction, refuses to include.
Lincoln in the Bardo reminds us that it makes no sense to aspire to unflinching objective accuracy when we are all flinching, subjective, and messy bodily beings. The attempt to adopt a dispassionate perspective on death is itself an example of our absurd aspiration to inhabit an undying, unearthly worldview. It is at once unhealthy and impossible. Clinical detachment from our shared embodiedness is the most pernicious of fictions.
The attempt to adopt a dispassionate perspective on death is itself an example of our absurd aspiration to inhabit an undying, unearthly worldview. It is at once unhealthy and impossible.
The death-positive movement has already made enormous strides toward making death a subject of public discussion. What we need now, however, is an examination of death as more than just a matter of fact. We need new fictions that understand death as an imaginative challenge — a challenge that cannot be overcome by stricter adherence to objective detachment, the interminable piling of fact on fact. We need innovative modes of storytelling that can disabuse us of this unhelpful obsession with objectivity, stories that help us see physical matter not as an assuredly lifeless, senseless object we all eventually become, but as the very thing that defines and enables our existence — the thing from which life and mind continuously, mysteriously emerges. Only then will we be able to forge a way forward that leaves us unafraid of our shared inhabitation of our fragile, corruptible, beautiful bodies.
Dying as one wishes has become a luxury. Even though 70% of people would prefer to die at home surrounded by loved ones, most forfeit their future to a windowless hospital room, attached to tubes and monitors. What was once a homebound stage of life has become a lonely, sterilized experience with a host of unfamiliar faces. America, a country founded on rugged individualism and freedom, can’t accommodate even the simplest of last choices.
“Too many people die clinical deaths,” says Beth McGroarty, vice president of research and forecasting for the Global Wellness Summit.
The Global Wellness Institute, a nonprofit organization dedicated to healthy living, identified an emerging trend gaining traction among multiple U.S. age groups. It’s death wellness, in which healthcare experts, academics, and spiritual leaders welcome us to confront anxiety about eternal rest, as well as learn how to support the individual and family throughout the dying process.
Also called the “death positive movement,” it encompasses events, workshops, and new modes of care. Death doulas (sometimes dubbed death midwives) coach those on their deathbed; death cafes gather the morbidly curious to discuss their fears; and legacy projects force the dying to communicate their will and essence. An entire cottage industry has stepped in to make people more prepared to accept their finality, establishing itself as an alternative to the medical establishment’s gaps in care. A good death, some will say, is now part of a good life.
“Everything around dying is getting radically rethought–from making the experience more humane to mourning and funerals getting reimagined,” notes the Global Wellness Institute in its 2019 wellness trends report.
Baby boomers, who invented the wellness industry with their insistence on aging differently, currently lead the movement. They still exercise, listen to rock music, and value their independence. (They also control approximately 70% of all disposable income.) As such, notes McGroarty, their last chapter shouldn’t be any different: “They are basically saying, ‘I refuse to have a terrible death.’”
A break with history
In the 19th century, Americans died in their own homes, which also hosted their wakes and funerals. The Victorian era was obsessed with dying and mourning; numerous rituals memorialized the deceased and absorbed the grieving period. In fact, it was customary to observe the body for up to three days to ensure the dead didn’t wake from a “deep sleep” prior to burial.
A Victorian-era advertisements for mourning garb.
That changed in the early 20th century, when more hospitals were being built due to advances in the medical field. Over time, specialized medicine replaced the family doctor. Families no longer saw loved ones day in and day out until the end. The process was outsourced to medical institutions, where patients lacked the emotional and spiritual care previously afforded their predecessors. Death became less familiar and people became more disconnected.
Doctors now concentrate on delaying death and managing pain, with few trained in end-of-life conversations. One survey found that half of medical students and residents report being underprepared to address patient concerns and fears at the end of life. “We train vigorously on how to delay the onset of death, and are judged on how well we do that, but many of us get little training on how to confront death,” Junaid Nabi, MD, a physician and medical journalist, recently wrote.
To that end, hospice care was meant to support those battling terminal diagnoses. But in reality, hospice care workers–along with chaplains, social workers, and religious leaders–have little time to tend to the dying. Hospice workers have basically become comfort care, spending just a few hours each week with individual patients. Factor in the loss of religious rituals and cultural practices, and that leaves humanity with little framework on how to console the dying.
Americans might avoid dealing with death for other reasons. We are fixated–near obsessed–with wellness and living. Anti-aging rituals, biohacking, and Silicon Valley’s mission to “overcome death” have induced a frenzy which categorizes death as a failure of sorts.
In her book Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer, author Barbara Ehrenreich bemoans society’s newfound addiction to betterment and medical intervention, a false sense of control that she argues makes dying all the more painful and humiliating. We are anxious about death, paralyzing our ability to actually deal with it.
“You can age ‘successfully’ if you do everything that you’re told, and that dying itself [can] be postponed further and further and further away if again you adhere to all the rules of diet, exercise, medical care, etc.,” argues Ehrenreich. “And that’s a cultural illusion, I would say. We do not control our own health completely.”
The rise of death doulas
Enter the death doula. Introduced in 2003, death doulas, much like birth doulas, fill a gap–in this case, between medical care and hospice care. They emotionally support patients before, during, and after death. Their popularity has soared. The International End of Life Doula Association (INELDA), a nonprofit that offers online programs and weekend workshops, has trained more than 2,000 individuals as well nearly a dozen hospital staffs in under three years in the U.S. Its programs routinely sell out.
INELDA trains individuals how to intently listen to patients and meaningfully discuss death, along with how to develop “a vigil plan” (a blueprint, more or less) for their last days. That might entail everything from where they envision themselves resting to what music or poems they want recited. The doulas spend several hours a day talking to their patients about how they feel about all the oncoming changes, both emotionally and physically. As such, they might institute guided imagery for pain management and personalized rituals. The latter can sometimes be as simple as implementing meditative, silent moments.
Trainees are also taught “active vigiling,” which is support for when the person is dying. The doulas are there to calm the patient and inform the family about signs to expect. “We don’t really understand death and dying anymore in our society,” says INELDA president Janie Rakow. “So people get very fearful at what they see, like breathing changes.”
The doulas are there as much for the dying as they are for the surrounding loved ones. Throughout the dying process, they check in with family members to alleviate their stress. Once the patient has died, they guide the surviving members through the grief process, educating them on the emotional stages to expect and how to practice self-soothing.
The majority of death doulas are volunteers, but a portion are available for hire. Prices range depending on care–they might charge anywhere from $30 to $100 an hour, or up to a few thousand dollars per week. Some work with a family for a few days a week, whereas others might engage in round-the-clock care for the last days.
Today, the death doula is evolving from a niche status in the care community and infiltrating mainstream medicine. The National Hospice and Palliative Care Organization recently formed an End-of-Life Doula Council, and it’s now even acknowledged at the academic level. In 2017, the University of Vermont Larner College of Medicine started the End-of-Life Doula Professional Certificate Program. The eight-week online course teaches students how to “honor the wholeness of a person in their journey,” says program director Francesca Arnoldy, author of Cultivating the Doula Heart: Essentials of Compassionate Care.
Like INELDA, the University of Vermont program focuses on the importance of legacy projects. The doulas collaborate with patients on artifacts, be it a recipe book, a scrapbook, or an audio recording, which speak to who that person is. Doulas act as scribes or mediators, pushing patients to review and find meaning in their lives.
So far, those registered mostly span the medical professional field, such as doctors, nurses, mental health workers, as well as spiritual care providers. They also get family caretakers who want more support tools. Following certification, some are hired by hospitals to complement hospice workers, but most serve as unpaid volunteers.
“We can’t keep up with our waitlist,” Arnoldy says of skyrocketing interest in the program. “The last time we opened up registration, the applicants crashed our system.”
Talk therapy
Nothing is certain except death and taxes, and yet our society only ever really talks about the latter. A California HealthCare Foundation survey found that 82% of people say it’s important to write down their end-of-life wishes, yet only 23% do so. And nearly 80% say they should talk to their doctor about end-of-life care–only 7% ever do.
A large theme of death wellness involves simply talking about the hushed-about matter. Festivals, dinner gatherings, and newly founded websites aim to strip death of its taboo status. Reimagine End of Life, for example, is a week-long series of events in San Francisco that delves into the topic through the arts, design, and performances. Though clearly about death, it bills itself as a “celebration of life.”
The Go Wish card game invites players to discuss how they envision end-of-life care options. They rate the importance of statements such as, “not being connected to machines.” The object of the game? “To help you voice these choices.”
There are numerous organizations facilitating hard conversations. Death Cafe, a program which brings people together to “eat cake, drink tea, and discuss death,” has had more than 8,200 events in 65 countries since 2011. Likewise, Death Over Dinner, a nonprofit that organizes shared meals for people to embrace their own mortality, facilitated more than 200,000 dinners, translating to nearly a million people served.
“The more challenging, the more taboo the topic, the more potential there is for transformation and human connection,” says Michael Hebb, founder of Death Over Dinner. “[In America] we have this perfect storm of a broken system that could be improved by open conversation.”
Death Over Dinner attempts to normalize death, giving people the tools to discuss it frankly over some roasted chicken. The online platform provides a customizable script for hosts to engage their guests, most of whom are middle-aged or boomers. The program is partnering with the Cleveland Clinic, in addition to large-scale events with Memorial Sloan Kettering. Most dinners are sponsored by health organizations or religious groups, which welcome guests free-of-charge.
The dinners don’t just attract boomers or those inching closer to the ticking clock. Death Over Dinner sees interest among millennials, who are “incredibly passionate about this conversation,” reports Hebb. Millennials even have their own salon series called The Dinner Party, which coordinates potluck meals centered on death and grief.Lennon Flowers, executive director of The Dinner Party, sees a generation rallying against a “conspiracy of silence” that stripped them of any outlet to discuss the topic. Should someone in their 20s or 30s suffer a family member’s death–or be faced with a terminal diagnosis–the person often had only support groups to turn to. Generally, those consist of much older individuals.
“The reality is they might not go back [to the support group],” explains Flowers. “When you’re the first among your peer group to experience loss, that kind of compounds the isolation and loneliness.” They are perhaps the first in their community to experience loss, but they can’t find adequate support in their own social circles. The Dinner Party aims to fill that role. Since 2014, The Dinner Party grew to 4,000 members who meet regularly at 235 tables. It fields over 100 new member submissions per week.
The beginning of a movementWhile death wellness is mostly an awareness and support movement, some startups have begun commodifying what a “good death” might feel or look like. Megilla, for example, is an online video recording program for the elderly. Described as “legacy-building for the modern age,” the site features more than 500 questions meant to encapsulate a person’s values, hobbies, and stories.
Founder Nathan Firer, a former TV producer, previously filmed the elderly for posterity projects, which ran about $5,000 to $7,000 per client. It wasn’t terribly affordable, not to mention he noticed that clients were usually uncomfortable with being filmed. With Megilla, users can privately answer questions from the comfort of their laptop for $5 a month.
But for the most part, the death wellness movement is made up of volunteers and medical practitioners who have seen firsthand the shortcomings of contemporary end-of-life care. Death Over Dinner’s Hebb sees the pendulum swinging back from medicalization toward a more holistic attitude of death. It’s hit the cultural zeitgeist, he says, “but I think we’re still just at the very beginning.” Awareness of death wellness may be spreading, but its services are still not available in most hospitals, and they are generally not covered by insurance.
In the meantime, those advancing the movement are adjusting best practices for a modern, stressed society. “When you hide something away or when you forget how to do something, there’s a whole lot of wisdom that’s left behind,” says Hebb. “It’s just not a medical act; it’s a human, community act. People are feeling more and more empowered to take back some ownership over these decisions.”
What do you want to happen to your remains after you die?
For the past century, most Americans have accepted a limited set of options without question. And discussions of death and funeral plans have been taboo.
That is changing. As a scholar of funeral and cemetery law at Wake Forest University, I’ve discovered that Americans are becoming more willing to have a conversation about their own mortality and what comes next and embrace new funeral and burial practices.
Baby boomers are insisting upon more control over their funeral and disposition so that their choices after death match their values in life. And businesses are following suit, offering new ways to memorialize and dispose of the dead.
While some options such as Tibetan sky burial — leaving human remains to be picked clean by vultures — and “Viking” burial via flaming boat — familiar to “Game of Thrones” fans — remain off limits in the U.S., laws are changing to allow a growing variety of practices.
‘American Way of Death’
In 1963, English journalist and activist Jessica Mitford published “The American Way of Death,” in which she described the leading method of disposing of human remains in the United States, still in use today.
She wrote that human remains are temporarily preserved by replacing blood with a formaldehyde-based embalming fluid shortly after death, placed in a decorative wood or metal casket, displayed to family and friends at the funeral home and buried within a concrete or steel vault in a grave, perpetually dedicated and marked with a tombstone.
Mitford called this “absolutely weird” and argued that it had been invented by the American funeral industry, which emerged at the turn of the 20th century. As she wrote in The Atlantic:
“Foreigners are astonished to learn that almost all Americans are embalmed and publicly displayed after death. The practice is unheard of outside the United States and Canada.”
Nearly all Americans who died from the 1930s, when embalming became well-established, through the 1990s were disposed of in this manner.
And it’s neither cheap or good for the environment. The median cost of a funeral and burial, including a vault to enclose the casket, was $8,508 in 2014. Including the cost of the burial plot, the fee for opening and closing the grave and the tombstone easily brings the total cost to $11,000 or more.
This method also consumes a great deal of natural resources. Each year, we bury 800,000 gallons of formaldehyde-based embalming fluid, 115 million tons of steel, 2.3 billion tons of concrete and enough wood to build 4.6 million single-family homes.
Mitford’s book influenced generations of Americans, beginning with the baby boomers, to question this type of funeral and burial. As a result, demand for alternatives such as home funerals and green burials have increased significantly. The most common reasons cited are a desire to connect with and honor their loved ones in a more meaningful way, and interest in lower-cost, less environmentally damaging choices.
Rise of cremation
The most radical change to how Americans handle their remains has been the rising popularity of cremation by fire. Cremation is less expensive than burial and, although it consumes fossil fuels, is widely perceived to be better for the environment than burial in a casket and vault.
Although cremation became legal in a handful of states in the 1870s and 1880s, its usage in the U.S. remained in single digits for another century. After steadily rising since the 1980s, cremation was the disposition method of choice for nearly half of all deaths in the U.S. in 2015. Cremation is most popular in urban areas, where the cost of burial can be quite high, in states with a lot of people born in other ones and among those who do not identify with a particular religious faith.
Residents of western states like Nevada, Washington and Oregon opt for cremation the most, with rates as high as 76 percent. Mississippi, Alabama and Kentucky have the lowest rates, at less than a quarter of all burials. The National Funeral Directors Association projects that by 2030 the nationwide cremation rate will reach 71 percent.
Cremation’s dramatic rise is part of a huge shift in American funerary practices away from burial and the ritual of embalming the dead, which is not required by law in any state but which most funeral homes require in order to have a visitation. In 2017, a survey of the personal preferences of Americans aged 40 and over found that more than half preferred cremation. Only 14 percent of those respondents said they would like to have a full funeral service with viewing and visitation prior to cremation, down from 27 percent as recently as 2015.
Part of the reason for that shift is cost. In 2014, the median cost of a funeral with viewing and cremation was $6,078. In contrast, a “direct cremation,” which does not include embalming or a viewing, can typically be purchased for $700 to $1,200.
Cremated remains can be buried in a cemetery or stored in an urn on the mantle, but businesses also offer a bewildering range of options for incorporating ashes into objects like glass paperweights, jewelry and even vinyl records.
And while 40 percent of respondents to the 2017 survey associate a cremation with a memorial service, Americans are increasingly holding those services at religious institutions and nontraditional locations like parks, museums and even at home.
Going green
Another trend is finding greener alternatives to both the traditional burial and cremation.
The 2017 survey found that 54 percent of respondents were interested in green options. Compare this with a 2007 survey of those aged 50 or higher by AARP which found that only 21 percent were interested in a more environmentally friendly burial.
One example of this is a new method of disposing of human remains called alkaline hydrolysis, which involves using water and a salt-based solution to dissolve human remains. Often referred as “water cremation,” it’s preferred by many as a greener alternative to cremation by fire, which consumes fossil fuels. Most funeral homes that offer both methods of cremation charge the same price.
The alkaline hydrolysis process results in a sterile liquid and bone fragments that are reduced to “ash” and returned to the family. Although most Americans are unfamiliar with the process, funeral directors that have adopted it generally report that families prefer it to cremation by fire. California recently became the 15th state to legalize it.
Going home
A rising number of families are also interested in so-called “home funerals,” in which the remains are cleaned and prepared for disposition at home by the family, religious community or friends. Home funerals are followed by cremation, or burial in a family cemetery, a traditional cemetery or a green cemetery.
Assisted by funeral directors or educated by home funeral guides, families that choose home funerals are returning to a set of practices that predate the modern funeral industry.
Proponents say that caring for remains at home is a better way of honoring the relationship between the living and the dead. Home funerals are also seen as more environmentally friendly since remains are temporarily preserved through the use of dry ice rather than formaldehyde-based embalming fluid.
The Green Burial Council says rejecting embalming is one way to go green. Another is to choose to have remains interred or cremated in a fabric shroud or biodegradable casket rather than a casket made from nonsustainable hardwoods or metal. The council promotes standards for green funeral products and certifies green funeral homes and burial grounds. More than 300 providers are currently certified in 41 states and six Canadian provinces.
For example, Sleepy Hollow Cemetery, the historic New York cemetery made famous by Washington Irving, is a certified “hybrid” cemetery because it has reserved a portion of its grounds for green burials: no embalming, no vaults and no caskets unless they are biodegradable — the body often goes straight into the ground with just a simple wrapping.
Clearly Americans are pushing the “traditional” boundaries of how to memorialize their loved ones and dispose of their remains. While I wouldn’t hold out hope that Americans will be able to choose Viking- or Tibetan-style burials anytime soon, you never know.
Images of sandy beaches, sun-kissed swimming pools and azure blue skies gleam from the window and walls of what appears to be a new travel agent opening in a London shopping centre. But browsers may be surprised by the destination, for it is a journey every one of us will one day take: death.
Look more closely at the posters and it becomes clear that the words are all about “passing away” (half of British adults prefer to avoid the word “death”, apparently). The Departure Lounge, in Lewisham, south London, is the brainchild of the Academy of Medical Sciences, whose mission is to promote biomedical and health research. Death, it turns out, is one of the most under-researched areas in healthcare, accounting for less than half of 1% of money spent.
The idea of the Departure Lounge, explains the academy’s president Professor Sir Robert Lechler, is to enable visitors to ask any questions they might have about the dying process, and also to collect ideas and experiences that could inform future research. “The best time to have conversations about death probably isn’t when you’re confronting it, but well before,” he said. Which is why a shopping centre was deemed an appropriate location – the hope is that the Departure Lounge will attract people who might not be regular visitors to science museums.
Death has been a zeitgeist subject for some years now – witness the Death Café phenomenon, the growth of conferences and books on dying and TV series like the recent Ricky Gervais Netflix comedyAfter Life. But, says Lechler, the conversation is becoming more urgent. Put simply, there’s more of it about. “Between now and 2040 we’ll see an increase of 25% in the number of deaths per year,” he said. And it’s more than numbers: the run-up to dying is different. “We’re living longer, and the context of death is changing. Longer life means we accumulate more long-term conditions, and people tend to be frail for longer,” he said. “The risk is that people are going to die badly, as opposed to dying well.”
Dr Katherine Sleeman, a palliative care consultant at the Cicely Saunders Institute at King’s College London and a member of the advisory group behind the Departure Lounge, says patients often want to talk about death. “People call it the last taboo, but that’s not my experience. Healthcare professionals can be fearful about raising the subject, but I find patients are often relieved when it’s mentioned. They know they’re dying, and they want to talk about it.”
Also much misunderstood, she says, is that palliative care, far from spelling the end, can mean much better outcomes. “Research shows that when provided early, palliative care is associated with fewer hospital admissions, better pain relief and lower financial costs to the NHS,” she said. “I always say that my aim isn’t to help you live longer, it’s to help you live better.”
On hand will be guides including Yvonne Oakes, a former palliative care nurse who now works as a “soul midwife” or end-of-life doula, supporting patients and their families. In her experience, many people have had negative experiences of death with relatives, and assume that when their time comes isolation, pain and discomfort will be inevitable. That, she says, simply isn’t true. “There is definitely such a thing as a good death. It comes mostly, I believe, from accepting death rather than struggling against it.” And The Departure Lounge, she hopes, will enable people to start to think about acceptance of death, “in a non-threatening, and unforced, way.”
Research into dying, says Sleeman, really matters and can make a real difference. “Many people, and that includes doctors and academics, say: what’s the point of research if it’s not going to prolong life? But that isn’t the point. Quality is crucial: research is quite clear that most people would choose quality of life over length of life.”
The Departure Lounge is supported by the Health Foundation and Wellcome Trust; more information at departure-lounge.org
Top tips for a good death
Remember this is your death: it’s OK to think about what you really want and don’t want, and be clear about it.
Don’t be afraid to ask for help, and to accept help if it’s offered and you want it. You don’t have to struggle on alone.
Make amends for past hurts and disappointments. Some people write letters – you don’t have to post them.
Consider making a death plan, which is the life-end equivalent of a birth plan. Where would you like to die? Who do you want with you – and who do you not want there? Would you like music to be playing? Do you want to avoid attempts to resuscitate you?
Be aware that death involves loss, so there is inevitably going to be emotional pain, both for you and for those you love. But that doesn’t mean you can’t look for the joys in life, even as your health deteriorates. Life can have meaning and enjoyment right up to the end.
He was an avid sailor, a talented dancer, a devoted father and an entrepreneurial fireworks professional whose gunpowder-fuelled chemical concoctions lit up New Zealand skies in dazzling displays of sound and colour.
When Anthony Lealand died last June at age 71, following surgery-related complications, he went more gently than many into Dylan Thomas’ good night. His body was washed and dressed by his two children, placed unembalmed in a macrocarpa coffin made by son Nicholas in the shape of a boat, then lowered into a shallow grave on a gently sloping lawn overlooking Lyttelton Harbour.
Eight months later, few signs remain at the new eco-burial site in the Diamond Harbour Memorial Gardens Cemetery. No headstones, no permanent markers. Just some native grasses, a cluster of young coprosma, the smell of pine, the sound of birdsong, the glint of the sea on which Lealand loved to sail.
“I’d much rather think of my father at the beach,” says Nicholas. “He wasn’t very spiritual or sentimental about his body. We know he is in the ground just there, but he isn’t in his physical body – he is in his life’s work, his children. The soul is this elaborate metaphor to mean all the things that are outside your physical body, and that part of him continues on. His business is still running, his friends still tell his jokes – all that is still there, but his body is just compost.”
Anthony Lealand
No surprises
So, what’s needed for a good death? As palliative-care doctor Janine Winters writes in Death and Dying in New Zealand (edited by Emma Johnson) the person should be comfortable, in the location of their choice, with people they care about. They should have a caregiver, be warm, dry and clean, and have the necessary medication for physical symptoms. “There are no surprises,” she writes. “They have had the opportunity to put their affairs in order. They are able to say those things that need saying. I forgive you. Please forgive me. Thank you. I love you. Goodbye. All these things together – comfort, agency and preparation – provide for what I understand as dignity.”
But it’s what comes next that’s breaking down our traditional ways of thinking about and dealing with death. Increasingly, a generation taught to tread lightly on this earth in life is looking to do the same on the other side of the grave as it questions the need for permanent memorials, costly and potentially ground-contaminating coffins and even embalming.
For Nicholas Lealand, these were neither important nor appropriate. “Embalming, putting make-up on – it is lying to yourself. It is saying he is not really dead or he’s just sleeping. And it always felt really disrespectful for the final act of your existence to be to poison the soil.”
Anthony Lealand’s boat shaped coffin
In a natural, green or eco burial, the body is not embalmed – although it may be refrigerated or treated with oils. It is buried in a biodegradable shroud or a box made from cardboard, untreated wood or fibres, then buried in a relatively shallow grave – 60-100cm rather than the traditional 1.8m or six feet under – where there is more biological activity to aid decomposition. Instead of a headstone or plaque, a tree is often planted above the plot, with GPS and map co-ordinates to allow the site to be traced.
Demand for such low-impact burials is growing. The Italian art project Capsula Mundi has designed biodegradable egg-shaped burial pods, in which ashes or a fetal-crouched body can be placed and buried like a seed beneath a tree to offset the person’s carbon footprint and contribute to a cemetery that is more woodland than graveyard. US company Coeio sells burial suits and shrouds lined with fungi and other microorganisms that aid decomposition.
According to Bloomberg magazine, about 8% of the more than 150,000 burials that take place in the UK each year are now natural burials, up from about 3% just three years ago. A 2015 study found that 64% of US citizens aged 40 and over would consider a green burial, up from 43% just five years earlier.
Diamond Harbour
The Kiwi connection
New Zealand’s eco-burial tradition goes back 20 years, when public relations consultant Mark Blackham and his wife, Sola Freeman, wanted to bury their baby daughter in native forest. They weren’t allowed, says Blackham, “but I couldn’t see any practical or sensible or ideological reason why you wouldn’t do it”.
Inspired by the fledgling green-funeral movement in Britain, he began his “infamous round of phone calls” to every council in the country. Nearly a decade later, in June 2008, the Wellington Natural Cemetery at Makara became the first natural cemetery in a city outside the UK.
Today, Blackham’s not-for-profit organisation, Natural Burials, lists six certified natural cemeteries in Wellington, Kāpiti, Carterton, Marlborough, New Plymouth and Westport. Other uncertified natural cemeteries have been formed in Auckland (the natural burial site at Waikumete Cemetery was awarded the Innovation Award at last year’s Cemeteries and Crematoria Collective Conference), Hamilton, Thames, Nelson, Motueka, Dunedin, Invercargill and Whangārei – now home to New Zealand’s first cemetery in an existing forest. Smaller initiatives, such as that at Diamond Harbour, offer eco-burial alternatives, often within existing cemeteries. Some funeral directors are also coming on board, helping clients choose green, low-cost or DIY burial options.
Driving this interest, says Blackham, is concern about the environmental toll of conventional burials. Standard coffins may contain glues, chemical binding agents and metals. Embalming products – and 90% of the dead are embalmed before being lowered into the ground – can include glutaraldehyde, methanol, phenol, paraformaldehyde and formaldehyde.
Forest burial: Mark Blackham and his wife Sola Freeman
A 2017 University of Pretoria study found that even though only about 3% of the formaldehyde used in embalming percolates down through the soil, two of the 27 soil samples studied had concentrations of the chemical considerably higher than what is deemed tolerable by the World Health Organisation. The study also found high levels of various metals and phthalates from the plastic and varnishes used in coffin materials.
Left to its own devices, however, a decomposing cadaver is a high-quality nutrient resource; it has a low carbon-to-nitrogen ratio (good for decomposition) and a high water content. According to the prosaically named Corpse Project in the UK, a cadaver can provide 17 of the 18 elements required for plant growth. Cremated remains, in contrast, are usually of little use in the soil and can be harmful.
A recent report from the University of Sheffield estimates that 0.25g to 1g of mercury from amalgam tooth fillings is released from each cremated body. Though this is a tiny fraction of overall mercury emissions, five European countries have banned or significantly reduced the use of amalgam largely on environmental grounds. Several US states now offer bio-cremation – a chemical process in which bodies are broken down into their chemical components, leaving bones and a recyclable liquid – as a less polluting alternative to cremation.
Young people in particular are influenced by environmental concerns such as these, says Blackham. “They understand the cycle of carbon and nitrogen and want to be part of that cycle, not to turn their body into pollution but to turn it into something that plants and the soil can use.”
For those closer to death, he says, interest in green burials is often driven by more modest ideas around nature and simplicity. “Simple in the sense that there is something simple about reconnecting with nature – it is not an eco-nazi type of thing. They are thinking about their own relationship to the Earth, about their life, about their attitude to life. It is a contribution to the environment, to the growing of a forest and a place of contemplation – a nice place where relatives can come afterwards.”
Editor of Death And Dying in New Zealand, Emma Johnson
Increasingly distanced from death
Returning a shrouded body to the earth is nothing new. The practice is documented in the Bible, the Torah and the Koran. But over the past century, our distance from death increased. We tend to live apart from our families. About 70% of deaths of those 65 and over happen in rest homes and hospitals. Increasingly, the roles of body preparation, transporting, wakes, viewings and even organising a funeral are delegated to professionals.
“When we died at home and looked after each other as family groups, we knew how to do this,” says British palliative-care specialist Dr Kathryn Mannix, who is on a speaking tour of New Zealand. “Now we can take people to hospital to make them better, but we still take them to hospital when we can’t make them better. And they end up dying there, so no one sees normal dying at home any more.”
Instead, our understanding of death is diminished by unhelpful euphemisms, such as “passed away” and “lost the battle”, or hyped up by the dramatic blood-soaked killings dished up by TV crime series or computer games.
“But normal dying is not dramatic,” says Mannix. “The physical process is very gentle – it is really not that interesting unless you love that person. More-open discussions about death and dying will reduce that fear and superstition and allow us to be honest with each other at a time when well-intentioned lies can separate us and waste what precious time we have left.” As she writes in her new book, With the End in Mind: Dying, Death and Wisdom in an Age of Denial, this involves being explicit about the likely course of the illness, the necessary support, the availability of required resources if a person is to die in their home and the nature of dying itself.
British palliative-care specialist Kathryn Mannix.
Some cultures keep a closer proximity to death than others. In Death and Dying in New Zealand, funeral director Kay Paku explains the Māori belief that keeping the body surrounded by loving family and friends “helps to calm and free the spirit”. Throughout Catholic Ireland, says Mannix, when someone is dying, people will call in, talk to the family, say their goodbyes: “They wouldn’t pretend it wasn’t happening.” Emma Johnson recalls witnessing the burning funeral pyres in Varanasi in India. “The realisation we are physical matter becomes very clear,” she says, “whereas for us, a lot of that is behind closed doors.”
Death and Dying in New Zealand swings open those doors. It includes essays on Māori tangi, funeral poverty, cemetery architecture, the workaday world of a coroner and the truly, madly, deeply successful funeral-home series The Casketeers.
Former midwife then hospice nurse Katie Williams recounts the history of her coffin-making club in Rotorua, the “happiest and most enjoyable club” in town. On the phone before giving a TedX talk, she describes the moment in 2010 when she first suggested the idea as a U3A course (an organisation that selects and creates courses for people of retirement years). “There was dead silence – but at the end of the meeting there was a line of people waiting. It is a way of taking control. You are going out in something that means you, not mahogany and gold.”
She describes a man who was close to death, a young father who had never had a go-kart as a kid. “So, we made him a go-kart – he went off in huge style, he had a wonderful exit.”
Katie Williams
“Death-positive movement”
“Alone we are born/And die alone”, wrote James K Baxter in 1948, but in planning our own “wonderful exit”, the dying part is becoming a lot more social. The death-cafe movement, launched in England in 2011 to encourage open conversations about dying, is now a global tradition taking place in coffee shops, offices, community halls, libraries and living rooms in more than 50 countries, including New Zealand. Death walkers, death midwives and death doulas now offer their services to assist people through the dying process.
Once a month, about a dozen people turn up at Christchurch’s Quaker Centre to discuss all things related to death. Convener Rosemary Tredgold says it’s an opportunity to discuss issues many haven’t considered out loud. Do you need a funeral director? What sort of coffin do you want? What sort of service? Do you have a will? Do you have an advanced-care plan? Do you have power of attorney? How can you get a cheaper funeral? What’s going to happen when I die?
“If you look back at my parents’ generation, we couldn’t talk about death – one didn’t. It was very, very difficult. When my father died, it was exactly the same as when his father died – you didn’t talk about trauma, about war, about dying. But there is such value in sharing ideas.”
In sharing her ideas, US mortician and self-professed funeral industry rabble-rouser Caitlin Doughty developed a cult following. Her first book, Smoke Gets in Your Eyes, was a New York Times bestseller. Her latest, From Here to Eternity: Traveling the World to Find the Good Death, is pitched as a search for “the good death”, in contrast to American death practices she describes as brief, distant and sterile. Her work has spawned a tell-all “death-positive movement” that encourages people to speak openly about death, dying and corpses (Tenet 1: I believe that by hiding death and dying behind closed doors, we do more harm than good to our society).
Grief specialist Tricia Hendry sums it up as a “happy belligerence”, the result of an ageing population – by 2051, one in four of us will be 65 or over – and a lifting of taboos, “whether it is tampon ads on TV to talking about death and euthanasia. It’s an information age – there’s a lot more information at the click of a button – and because we are living longer, I am conscious of a confidence in older people that wasn’t there a couple of generations before us. There is a fighting spirit now – a sense of life going on for longer and I want to exit it on my own terms.”
Although these terms may include a green or eco-burial, there are drawbacks. Such burials are not cheap alternatives. There are savings from having no embalming, prefabricated coffins and headstones, but imported willow or seagrass caskets can ratchet up the cost and councils still need to charge for land that will never be used again. According to Blackham, natural cemeteries can be a couple of hundred dollars more expensive than a standard interment.
And, because the shallower burials allow only one interment per plot, this does not help those cities fast running out of cemetery space. Today, only 30 of Auckland’s 53 council-owned or -managed cemeteries are operational. Manukau Memorial Gardens has sufficient space for lawn burials until 2035 and North Shore Memorial Park until 2050. Waikumete, New Zealand’s largest cemetery, is expected to run out of new body burial plots – as opposed to ash burials – within the next three to five years. Already, the council has announced it will be seeking feedback on potential new burial areas in the cemetery and different forms of burial, including private and public mausoleums, vaults and “niche walls” for ashes.
“There is not any immediate urgency,” says the newly appointed manager of cemetery services for Auckland Council, Nikki Marchant-Ludlow, “but it is something we need to consider as we grow. We are working on a plan to consider what our options are in terms of utilising the land we have and whether there is any other land we could consider in and around the area.”
To cope with competing demands for land, some countries offer burials for limited tenure, after which the remains are disinterred and reburied deeper or put into an ossuary box.
Families in Spain and Greece rent an above-ground crypt where bodies lie for several years. Once they have decomposed, the bodies are moved to a communal burial ground, so the crypt can be used again. In this country, until the late 19th century, Māori of high status were buried close to settlements, then their bones were disinterred and placed in secret locations.
Rules not okay
Today, burial locations are mandated by legislation. New Zealand law allows a body to be buried in a public cemetery, a Māori burial ground, a religious/denominational burial ground, a private burial place used for burial before April 1965 (with permission from a District Court judge or mayor), on private land if there is no cemetery or burial ground within 32km of the place where the person died or is to be buried (again with permission from the Ministry of Health and the local council), or in any other place if the ministry agrees in advance that the place is safe and appropriate for burial. Burial at sea is allowed at five offshore burial sites around the country with a permit from the Environmental Protection Authority and evidence to show the burial took place at the agreed location, that the casket remained in one piece when it entered the sea and that it sank straight to the sea floor. Since taking over the regulatory role in 2015, the Environmental Protection Authority has received and approved only two applications for burial at sea.
In its 2015 overview of the 1964 Burial and Cremation Act, the Law Commission concluded the legislation is “old, out of date and fractured”. Citing increasing immigration, the changing nature of family relationships, increasing use of cremation and growing demand for eco-burials, biodegradable coffins and DIY funerals, it recommends the law be replaced by new statutes for deaths, burials and cremations.
It recommended extending the power to determine the cause of death to some nurses (this was integrated into an Act amendment last year); loosening restrictions on new cemeteries (although still keeping them under local authority management); and allowing people to appoint someone as a “deceased’s representative” to make decisions about the funeral according to their wishes or tikanga.
It also recommended exploring “alternative methods of cremation” or other means of disposing of bodies. Although applications for cremation on an outdoor pyre, the traditional method of cremation for some religions, are few – the Ministry of Health is aware of only two cremations outside approved crematoria in the past 25 years, both for highly respected Buddhist monks – the Law Commission report suggested this option should not be limited to religious denominations as is currently the case; “rather, it should be the sincerity of the application that is relevant”.
As society changes, such funerary and burial options will need to be addressed at a policy level. On a personal level, to allow for a grieving process that is meaningful and uncomplicated, Johnson is hopeful more people will start discussing their own end-of-life wishes, writing them down, recording them in an advanced care plan.
“Talking about death and about what you want at the end of your own life allows for that resilience in society. Having that open conversation goes on to living life better and being able to grieve in a healthier way.”
