Dr Munguntsetseg and Australian Volunteer Diane Anthony talk with family members of patients at Mongolia’s National Cancer Centre. Diane helped set up training sessions and support groups for carers of patients in the palliative care ward. Mongolia 2013.
[D]eath and dying surrounds us, yet many of us see it as an uncomfortable taboo subject. As part of a series of articles on encouraging an open dialogue around death and dying, we asked various healthcare professionals, academics, and members of the public who have experienced palliative care the following question:
How important is it that we as a society are open to discussing death and dying?
‘It is never too soon in life to talk about death and dying: I have seen too many people regret the fact that they did not know the final wishes of a loved one – and I have also experienced the joy of attending a funeral that was a true reflection of a life lived… As a former Hospice Social Worker, but primarily as a human being, my advice would be:
For everyone’s sake – let the conversation begin!’
– Sue Taplin is a qualified social worker with a practice background in palliative care. She has held academic posts at the University of Nottingham, University of Suffolk and currently at Anglia Ruskin University, and has a Doctorate in Social Work from the University of East Anglia.
‘My mixed-race background has given me different perspectives when discussing death and dying. My Asian grandmother, totally dependent on her two sons, regularly has frank discussions about her end of life. I think these help not only her, but also close family in preparing themselves for the inevitable. Conversely, my English grandparents who live alone do not have the same level of openness about the topic with relatives, and consequently the future holds great fear of the unknown. To me, these personal examples highlight the importance of having these conversations.’
– Sian Warner is a Third-Year Medical Student at the University of Birmingham.
‘Death is certain. What is uncertain is when. So what do we do? Talking about death will help make the final stage of life as good as possible, instead of pretending it will never happen. So, advance care planning is a big part of the solution. All of us, including health and social care professionals, need to create opportunities for people to talk about the things that matters most to them, what they do and don’t want to happen. This will enable more people to live well until they die, allowing a good life to culminate in a good death.’
‘I was given the news two years ago that I could not be cured of my cancer. I feel it is important to be able to openly discuss my fears and thoughts on dying. I feel that society as a whole has a taboo about the question of dying, and most people will side-step the issue when talking to me. Death is something we all face – rich and poor alike – and I think we can all do more to make the discussion more open and informative. I have found that Palliative Care is a refreshing format to further the discussion.’
– John Joyce is from Mayo, Ireland and has been fighting cancer for five years. John is a member of Voices 4 Care.
‘Palliative care should be available to anyone who needs it regardless of diagnosis or location of care. Talking about death and dying can be perceived as contentious with some suggesting that it can be distressing for people to think about their own mortality. However, recent research indicates that people appreciate the opportunity to talk about their preference for care at the end-of-life. Advance care planning provides people with the opportunity to think and talk about their wishes and provides healthcare professionals with the chance to ensure that these wishes, where possible, are met at the end-of-life.’
‘Due to our ageing population, we can expect an increasing number of people dying in the next 25 years. Over half of these deaths will be people aged 85 years or over. It is important and timely for us to have a public debate on how we best prepare for this, to understand what aspects of care are important to people nearing the end of life, and where we should be directing investment to meet these growing needs.’
– The Palliative Care Research Society is a society dedicated to promoting research into all aspects of palliative care and to facilitating its dissemination.
‘It shouldn’t be, but it is the complete conversation stopper: “Have you thought how you would like to die?”
Death, dying, and passing on surrounds us on a daily basis in our neighbourhoods, on the television, and on social media, yet we never personalise it, never look at our own bodies and imagine them injured, ageing, or terminally ill. We never try to visualise our own non-existence and its effect on others – we shiver, shrug, and continue with our finite lives. “All living things have a designated lifespan – but not me!”’
– Elizabeth Fuller is a long-term volunteer at the Specialist Palliative Care Ward at Our Lady’s Hospice, Harold’s Cross, Dublin.
Just as life and birth is a common part of society, so too is death and dying. The celebration of life and birth promotes it as a shared experience. The birth process is very patient and family-centered with attention to social, cultural, and spiritual context. However, death and dying is not celebrated in this way and results in isolation, avoidance, and surprise. The result is many deaths are medicalized and are not guided by patient preference. Society needs to make death and dying more patient-centered.
– Constance Dahlin is the Director of Professional Practice for the Hospice and Palliative Nurses Association in Pittsburgh, Pennsylvania and a Palliative Nurse Practitioner at North Shore Medical Center in Salem, Massachusetts. She is a co-editor of Clinical Pocket Guide to Advanced Practice Palliative Nursing (OUP, 2017).
Two very different books about death, by Kathryn Mannix and Caitlin Doughty, look at how we can face our final days with practicality, adventure and joy
[W]hen John Keats was dying of TB in Rome, just 25 and far from family and home, he wrote a series of beautifully judged, empathetic letters of farewell that deal lightly (yet never falsely) with his physical suffering and his emotional anguish. From the shrinking circle of his life, from his frail body drowning in itself, he reached outwards towards the friends he was leaving. In his final letter, he wrote of living a “posthumous existence”; his last phrase becomes his eloquent, courteous and self-effacing goodbye before he exits the stage on which he has had such a small parcel of time: “I always made an awkward bow.” Dying as a performance, dying as an art and a practice, dying as something solemnly profound and sorrowful and at the same time as normal, natural; dying as physical and as spiritual; dying as the end of a whole world because, as Oliver Sacks wrote, when dying himself: “There is no one like anyone else, ever.”
We live in our bodies and die in our bodies. In previous centuries, death was familiar and not hidden behind institutional walls: before the 20th century, there would have been scarcely an adult who had not seen their parents, some of their children, and their friends die. Moreover, there was faith that it was not the end. People witnessed death, dealt with it, prepared for it, even embraced it (John Donne used to sleep in his own coffin; Jeremy Taylor wrote his 17th-century manuals for the soul, Holy Living and Holy Dying, which became the preeminent works of the ars moriendi tradition; in The Tempest, Prospero consigns himself to an old age in which every third thought will be of death). Now, although we live with the sense of our own ending, we don’t really. We know we’re going to die, but we don’t know. Our body doesn’t know, except in dizzying moments of terror, until the sentence has been uttered and the gallows are being built under the window. Even then, death is often held at bay and life prolonged at all costs: the fragile and disintegrating body is plugged into machines, pumped full of oxygen and blood and drugs, its gallant heart restarted and kept going, no matter the pain, no matter the hopelessness of the endeavour, no matter that at a certain point this isn’t living, just a slowed-down, drawn-out, painful and undignified dying.
It has become easier to live longer, but harder to die well. Most people want to die at home; most die in hospital. Most want to be with family; often they are alone or with strangers. “Their death has been stolen from them,” writes Seamus O’Mahony in his bracing and unsentimental account of dying, The Way We Die Now, which charts how something that used to be public and acknowledged, with a common script, has become an aggressively medicalised and bureaucratic process placed in the hands of experts; sometimes banal, sometimes farcical, sometimes painful or undignified. Modern, sanitised death becomes a dirty little secret, almost embarrassing: our language circles round it, we don’t like to name it, cross the road to avoid those recently touched by it, and shy away from the physical, squeamish fact of it, so that the dead body is whisked away, frequently embalmed (for fear of its smell), cremated in “facilities” that are often in industrial zones.
Lady with the Lamp: Florence Nightingale tending the sick and dying.
Have we lost our way with dying and with death? In the last few years, there has been a crowd of books by doctors, scientists, writers and people who are scrutinising their own departure that have sought to show us different, kinder ways of ending: Atul Gawande, Oliver Sacks, Henry Marsh, Jenny Diski, Tom Lubbock, Marion Coutts, Paul Kalanithi, the luminous final poems of Helen Dunmore… the list is long. Behind them all stands the austere, magisterial work by Sherwin Nuland written in 1993, How We Die. Now Kathryn Mannix joins this distinguished group and her voice, though quiet and calm, is distinctive. A palliative doctor (or “deathwife”), she spends her days with the terminally ill and their families, witnessing and supporting them at times of intense suffering, terror and loss. About a quarter of deaths are sudden and unexpected, but she usually sees the ones that come slowly, over months or years, and while much of her work is diagnostic and medical, one of her crucial tasks is to help those who are dying and their families find ways of dealing with life’s final, great event.
With the End in Mind: Dying, Death and Wisdom in an Age of Denial is Mannix’s account of ways of dying, through a series of vivid stories, most of which disguise the protagonist, some of which are composite tales stitched together from several cases, and all of which are heart-wrenching testimonies to human courage and love. Her purpose is to describe many forms of death – the young man with testicular cancer treated in the room dubbed “the Lonely Ballroom”, the dying mother in the hospice who manages to walk her daughter up the aisle, the 22-year-old with cystic fibrosis, the teenager with leukaemia – and to show how in each case, while a death may be emotionally harrowing, it need not be intolerably painful; while it may be tragic, it need not be ghastly or full of the chaos that accompanies too many ends.
Like those romantic portraits of Florence Nightingale holding her lamp aloft as she walked between beds of maimed and dying soldiers, Mannix’s aim is to shed a soft, clear light on a subject she feels is too often avoided. She wants us to think about what dying and death mean for others and for ourselves and take the fear and recoil out of the subject. Mild, tender and conciliatory, she is punctiliously even-handed. If one story shows how denial is toxic and the truth needs to be gradually and gently revealed, in another she demonstrates the usefulness of denial; if one describes how precious time can be won for a patient, another is an example of how prolonging life can be cruel and death a necessary kindness. One person’s good death is not another’s – we all need to find our own way to take our bow and leave the stage.
I agree with almost everything Mannix says; I would like her, or someone like her, to be my compassionate, wise doctor when I lie dying, easing me out when my time has come. Yet in her desire to show that death can be well managed, she leaves out the mess, fear, pain and unpredictability of so much dying – its scandal, its wildness and its impossibility. Not all passing can be gentle and not everyone can be brought to acceptance in the face of their own obliteration. However we dress it up and think about it, death remains blankly ungraspable and stark.
Enter Caitlin Doughty, American mortician, joyful member of the death-positive movement, who describes what happens to our mortal remains with boisterous relish – “ya tell it like it is”, she wrote in her first book, Smoke Gets in Your Eyes. Skin slip is skin slip; putrefaction stinks. The body fails and the body rots and death is a tragedy and a farce. Jaunty, boisterous and unsentimental, Doughty believes that we in the west have made death and its aftermath into a corporate, perfunctory affair, in which the meaning of an ending is denied. Her mission is to “reclaim public understanding of dying” and to bring individuality and joy back into our dealings with the dead – and so, in From Here to Eternity, she embarks on a journey of discovery: to the only open pyre in America; to a sky burial in Tibet, where the body breaker slices the corpse into parts, pounds the flesh with a mallet, mixes it with barley flour and yak butter or milk, and leaves it to the shrieking vultures to consume; to burial towers in India; to the people of Tana Toraja in Indonesia, where mummified bodies are cared for in their home (offered food, dressed, even given a bed with the living) over months or years until the family can sacrifice an animal and put the dead to their final rest; to Barcelona’s mass bone pits; Mexico’s Day of the Dead. Skulls used as flowerpots, bodies made into compost on a body farm, corpses covered with rose petals, funerals conducted by men with dreadlocks and purple frock coats – what Doughty relishes are those rituals that acknowledge death, its bodily fact and its emotional enormity.
And although the book is in love with extremes, it actually shares Mannix’s desire to be balanced: one culture’s practice is another culture’s taboo. We might not like the thought of ripping the rotting flesh from our loved one’s bones, but for some, burning a body is equally repugnant. What is important is “to hold the space” – to banish our fear and shame, and create a ring of safety around the grieving family and friends where they can mourn, each in their own way.
Animals perish; only humans die – because we are creatures who are aware of our own mortality. This awareness, which can feel vertiginous, unendurable, is also what gives us selfhood, and life shape and meaning. “Death destroys a man; the idea of death saves him,” wrote EM Forster. It is Henry James’s “distinguished thing”, Martin Amis’s backing to the mirror, Rochefoucauld’s sun that we must not stare at too long lest we go blind with seeing. It’s the great nothing; the everything, which makes us and unmakes us, and to which we all come in the end. Nothing is more certain; nothing more bewildering, strange, scandalous, downright impossible, forever true.
[D]eath lurks in the corners of our lives, threatening to emerge from the shadows at any moment.
Our society’s aversion to death and dying isn’t just unrealistic — it’s unhealthy. How can we begin to accept death as part of our lives?
When it bursts into our day-to-day existence — sometimes unexpectedly, occasionally anticipated — it is almost always unwelcome.
In Canada and the western world, we have reached a point where we will do almost anything to convince ourselves that death doesn’t exist.
“Death is the last great taboo,” writes Julia Samuel, a grief psychotherapist and founder patron of Child Bereavement UK, in her bestselling book “Grief Works.”
“We seem happy to talk about sex or failure, or to expose our deepest vulnerabilities, but on death we are silent,” she writes. “It is so frightening, even alien, for many of us that we cannot find the words to voice it.”
But experts who work in the field of death and dying say our increasing tendency to ignore death, no matter the cost, is hurting us.
Our death illiteracy means we are woefully unprepared to handle the growing number of aging people in our society, says Denise Marshall, associate professor of palliative care at McMaster University and the Medical Director of the Niagara West Palliative Care Team and McNally House Hospice.
According to Marshall, unless we begin to talk about death — to “befriend it,” as Samuel says — we will see suffering on a massive scale.
“This is like the perfect storm in North America,” said Marshall. “There will be too many people with too many needs, and not enough of us able to support them. We won’t know what to do with all of these dying people in frailty.”
Where did we go wrong?
When it comes to death and dying, where did we, as a society, start to go wrong?
First, Marshall says, it’s important to understand that our aversion to death is a uniquely postmodern, western phenomenon. While risks like communicable diseases or complications from childbirth used to bring death into our homes, in our modern society, death is something that happens far beyond the reality of our day-to-day life: in an impoverished or war-torn country, perhaps, or behind the closed doors of a hospital.
“At this very moment in other parts of the world, there is a huge death literacy — for often tragic reasons,” she said. “People are dying in famine, in war, in all kinds of things. The idea that death is a part of life, and it’s always there, has not been removed from the whole world.”
The tendency to eradicate death from our everyday lives is also a relatively new historical development, Marshall added. Just picture any death scene in a historical movie or novel; the dying person is likely to be at home, encircled by friends and family, rather than in a hospital surrounded by doctors. It has only been in the past hundred years or so that death became so highly medicalized.
Marshall dates the removal of family members from their loved ones’ deathbeds to the 1920s — the same time doctors started to better understand the infectious nature of tuberculosis.
“It’s the first time in the Western World that health care said, “You, the community, must stay out,”” said Marshall. “And so began the beginning of institutionalized death. It’s not that long of a history.”
Clare Freeman, the executive director of the Bob Kemp Hospice, sees families coping with death and dying every day. Residents only spend an average of 15 days at the hospice before they die, but Freeman says that some families are so wary of acknowledging death that they will avoid discussing it at all costs.
“Sometimes, residents will tell our staff things they feel afraid to tell their loved ones — such as, “I know I’m dying. They don’t think I am.””
“They don’t want to make their family sad,” added Trudy Cowan, the manager of events and community engagement at the Bob Kemp Hospice. “It becomes this elephant in the room.”
Freeman questions whether the declining role of religion in our lives may also be another factor in our denial of death. Most religions include rituals that mark the various stages of life, including birth, our entrance into adulthood, marriage, and death. Without these rituals, we may lose the touchstones in our lives that allow us to acknowledge these times of transition.
“The disconnection to faith in peoples’ lives has made us think, “Oh, we’ve escaped death,” Freeman said. “We’ve done a lot of things in society to remove ritual — to make it about individuality and choice — and that process of losing ritual is actually impeding our literacy about death and dying.”
Freeman argues that there is a cost to our death avoidance. She suggests that our society tends to put a timeline on grief, expecting family members to bounce back as quickly as possible after the death of a loved one. This turns a natural process — grieving — into a medical disorder.
“We somehow think that we’ve cured death. Then, since we’ve cured death, we’ve also cured mourning. So, if you’re sad or mourn beyond three days, we’re going to send you to a therapist. It becomes a clinical thing, whereas mourning and grief is a natural process,” Freeman said.
End-of-life care
For concrete strategies to help combat our society’s death-avoidance, Marshall points to the work of her mentor, Dr. Allan Kellehear.
Kellehear, a medical and public health sociologist, was the first to suggest that end-of-life care should be the responsibility of the entire community — not just medical professionals.
His groundbreaking 2005 book, “Compassionate Cities,” argues that workplaces, charitable organizations, clubs, churches, and community members should work alongside doctors and palliative care clinicians to care for the dying and bereaved.
The most effective way to foster this, says Marshall, is by “adopting a good old-fashioned public health approach.” Jurisdictions across Canada should invest in advertising, workshops, and awareness campaigns encouraging more conversation about death.
“We need for end-of-life care in Canada what we have done with smoking cessation. It’s a good analogy,” she said. “It takes time — this is a psychic shift.”
Many European countries are already using this approach.
In Ireland, coasters reading “Dying for a beer?” that described 10 ways to support a bereaved friend were distributed in pubs across the country as part of a public health campaign. In the United Kingdom, death education is part of the kindergarten curriculum.
Systemic changes like these are essential in order to handle the growing number of Canadians approaching the end of their lives, said Marshall. Currently, 70 per cent of deaths occur in hospital — and there’s simply not enough space in palliative care units, hospitals, and hospices to handle a major influx of the sick or dying.
In Canada, death rates continue to climb each year. Statistics Canada reports that the number of deaths across the country climbed from 654,240 between 2000 and 2002, to 722,835 between 2010 and 2012.
Unless our society learns to help care for the dying, Marshall says we will reach a crisis point where people will be abandoned at the end of their lives, left alone without medical or community support.
“Why is it a crisis? Because I don’t think we’ve fully grasped the fact that this isn’t going away. This is not a blip in society,” Marshall said. “We are living longer, with more complexities. One-hundred per cent of us, though, are going to be at end of life.”
Marshall points to China as an example of a jurisdiction facing a disproportionate number of dying people that completely outstrips the younger age group’s ability to care for them.
“That will eventually be us. It will be every country,” Marshall said. “What we’ll risk seeing is huge amounts of suffering in ways we haven’t seen before. True abandonment.”
Death education
In Hamilton, there are those who are already engaged in the type of grassroots advocacy that Marshall espouses.
Rochelle Martin is a community death-care educator. Her passion lies in supporting the dying and their families.
Martin, who lives in downtown Hamilton with her family, helps families with what she calls “home-based death-care.” She advises families who wish to have a home funeral about the practicalities of washing, dressing, and laying out the body of the person who has died.
Martin does not get paid for her work as a death-care educator, nor does she directly handle bodies (which would require her to have a funeral director’s license). Instead, she says she sees herself more as a “community renegade who whispers in peoples’ ears “you can do it.””
“I operate more like a lactation consultant — I can’t breastfeed your baby for you, but I can tell you how,” she said. “And I can really empower you to do it, because I think it’s so important.”
To earn an income, Martin, a registered nurse with a specialty in psychiatry and mental health, commutes to work at the Toronto General Hospital.
Her professional work as a nurse dovetails with her “renegade” work as a death educator. In fact, it was her experiences working in an emergency room supporting the families of people who have had sudden or tragic deaths that led her to begin her role in death education.
Martin noticed that family members have a natural disinclination to see their loved ones after they have died, especially if they have experienced trauma. But after a small amount of encouragement, however, most are able to have the closure of seeing their loved ones’ bodies.
“It was amazing and beautiful to watch. If they’re given even a tiny bit of encouragement or permission, people really know how to engage with death in a way that they initially thought they couldn’t or shouldn’t.”
There are those who think her work is strange, dangerous, unsafe, or possibly a health hazard — but she sees her work as an important tool to help our society become more comfortable with death. Unlike the traditional funeral industry, where our loved ones’ bodies are tended to behind closed doors (often at a cost of thousands of dollars), Martin says she acts as a gatekeeper who helps others deal with death in a practical, meaningful way.
“Any time anyone has the opportunity to engage with death like that, and finds out that it’s not scary, it’s not dangerous, it’s legal — every experience like that puts us further ahead.”
When the community becomes involved in a death, everyone benefits.
In October 2016, Monica Plant’s 91-year-old mother, Polly, suffered two strokes and fell twice in her home. By the end of that week, Polly, who still lived in her west-Hamilton home of 38 years, had been declared palliative.
Plant was relieved when her mother received permission to die at home, just as Polly had wanted. But for Plant, it created some logistical difficulties. The Community Care Access Centre provided her with three hours of care a day — which, as Plant says, “was something, but it left quite a few gaps.”
She had acted as her parents’ live-in caregiver for almost seven years and was deeply fatigued. She had already been through the emotional and daunting process of providing end-of-life care for her father, who had died at home the previous April.
Plant found herself at an emotional crossroads: she felt extremely grateful that her mother was allowed to live at home for the last few weeks of her life, but she was unsure about whether she could sustain the sort of round-the-clock care her mother needed.
What happened next is almost a textbook example of the kind of community involvement that Marshall says is so essential.
Plant reached out to her neighbours, her out-of-town siblings, and parishioners at Polly’s church. Plant’s neighbour went door-to-door along Undermount Avenue, asking residents if they would like to help ease Polly into her final weeks of life.
Within days, Plant’s support system grew to 25 households who would visit with Polly, do yardwork, bring meals, and providing Plant with some comfort and respite. Neighbours circulated emails containing meal plans and visiting schedules and swapped stories about how good it felt to come together as a community.
“(Polly) was somebody who liked things to happen organically, and that’s how it happened,” Plant said. She compares the effort to an urban-barn raising — a constructive, collective effort that allowed her mother to die in the comfort of her home.
The experiences enriched both Plant and her neighbours. As well as creating an interconnection between those who were involved in Polly’s care, it offered a glimpse of what we will all face at the end of our lives.
“What I think the byproduct of being able to die at home was that people on the street got to see what aging looks like. This is what happens at all the stages,” Plant said. “If you’re taken out when you’re retirement age and you go off to a retirement home, the neighbourhood doesn’t get a chance to see what happens when you age.”
Polly died at home on Nov. 30, 2016, in the arms of Plant and her twin brother — the way she had always wanted.
[A]s Canada’s largest generation ages, more and more of us are dying each year. Ever since 1992, when ALS sufferer Sue Rodriguez brought medically assisted dying to the Supreme Court, most of the conversation about how to have a good death has been about how to actually die.
Now, Medical Assistance In Dying (MAID) is legal and available. So, there’s a new surge of interest in making death not only less painful but good.
In this month’s Observer, I wrote about the recent death of Don Grayston (my former professor), who was an Anglican priest who prepared for his death for 40 years. He and others, including the Vancouver-based death planning agency Willow, have pushed the “good death” conversation way beyond MAID and into the realm of spirituality, relationships, values and ritual.
It’s needed. As a funeral director I spoke to last year said, “People don’t want anything to do with their dead anymore. They treat me like I’m the garbage man, just taking out the trash.”
No one wants that to be their final story.
So, here are five ways to die — with more than just dignity.
1. Die consciously, with care
Who does it? Death doulas, who are trained to advocate for the dying, increasing their physical comfort and helping them talk about death while acting as spiritual guides. Douglas College in British Columbia offers a straight-forward, college-certified death doula program, but others, such as the Conscious Dying Institute, are less constrained and more spiritually oriented.
Why? “I see the transition out of life as having the potential to be just as celebratory as the transition into this world,” Toronto death doula Susan Dawson told Global TV in June 2016.
2. Die in charge
Who does it? Willow, through its workshop “Departure Directions.” Participants learn how their bodies can be cared for after death and receive help making a plan for rituals and practicalities. It helps to bring peace of mind to the dying, along with their friends and family, especially in the absence of a clear, religious tradition.
Why? “Maybe you’ve experienced the overwhelming frustration of arranging a good-bye ritual for someone who didn’t leave any directions. You’ve struggled with trying to honour what you think are their wishes and meet the needs of those left behind, including you.”
3. Die with fulfilled relationships
Who does it? In 2017, the 20th anniversary of the seminal book Dying Well: The Prospect for Growth at the end of Life was celebrated. Palliative care physician and author Ira Byock advised that the dying — and living — need to hear four things: “Thank you,” “I love you,” “I forgive you” and “Please forgive me.”
Why? “I was death-naive before I read Dr. Ira Byock’s book Dying Well when my father was in his early 80s and in his final, painful decline,” writes Katy Butler, the author of the 2018 book Knocking on Heaven’s Door and A Good End of Life. “It introduced me to the possibility that with appropriate support, dying did not have to be a chaotic, fear-ridden and painful experience. In fact, families could be well-supported and death could even be meaningful.”
4. Die broke
Who does it? Some philanthropists and foundations choose to give away their money while they’re still living so that they can celebrate it being used. Some individuals choose to give inheritances to their heirs while they’re still living so that they can offer guidance.
Why? “Benefactors who choose to ‘give while living’ discover that it gives them an opportunity to share their long-term vision with heirs and to witness how their heirs handle the assets,” the Royal Bank of Canada advises. “Beneficiaries, meanwhile, can learn to manage the wealth and become comfortable with an inheritance while consulting with their benefactors, putting everyone in a better position to preserve family wealth for the future.” There are also tax advantages to giving while living, the bank notes.
5. Start dying early
Who does it? Anglican priest Don Grayston started thinking about his own death back while in his 30s. That is, he learned about dying from his aging congregants, figured out that it was going to happen to him and started living in ways that would help him become the old, wise man he wanted to be: in community with friends. In a congregation, this is a no-brainer, as all generations from infants to the elderly sit together each week. But outside of church, tight, multigenerational communities are rare.
Why? Obviously, to prepare yourself for your inevitable death, as Willow’s guides might say. But also, The Guardian tells us that death is cool. Everyone is doing it. Even hipsters. So get with it.
The Buddha said the greatest of all teachings is impermanence. Its final expression is death. Buddhist teacher Judy Lief explains why our awareness of death is the secret of life. It’s the ultimate twist.
“Laughing in the Face of Stupidity,” painting by Tasha Mannox from the series “Laughing in the Face of Death: To live and die without regrets.”
[W]hether we fight it, deny it, or accept it, we all have a relationship with death. Some people have few encounters with death as they are growing up, and it becomes personal for them only as they age and funerals begin to outnumber weddings. Others grow up in violent surroundings where sudden death is common, or see a family member die of a fatal illness. Many of us have never seen a person die, while people who work in hospitals and hospices see the realities of death and dying every day. But whether death is something distant for us or we are in the thick of it, it haunts and challenges us.
Death is a strong message, a demanding teacher. In response to death’s message, we could shut down and become more hardened. Or we could open up, and become more free and loving. We could try to avoid its message altogether, but that would take a lot of effort, because death is a persistent teacher.
Teacher death met up with us the minute we were born, and is by our side every moment of our life. What death has to teach us is direct and to the point. It is profound but intimate. Death is a full stop. It interrupts the delusions and habits of thought that entrap us in small-mindedness. It is an affront to ego.
Death is a fact. Our challenge is to figure out how to deal with it, because it is never a good plan to struggle against or deny reality. The more we struggle against death, the more resentment we have and the more we suffer. We take a painful situation and through our struggles add a whole new layer of pain to it.
We cannot avoid death, but we can change how we relate to it. We can take death as a teacher and see what we can learn from it.
“Laughing in the Face of Pride,” painting by Tasha Mannox from the series “Laughing in the Face of Death: To live and die without regrets.”
Facts are facts: everyone is going to die sooner or later. No magic trick or spiritual gimmick will make it go away. Distancing ourselves from death or putting off thinking about it does not work.
I have noticed that the more distant we are from death, the more fear arises. Death becomes alien, other, scary, mysterious. People who work regularly with the dying, who are closer to death, seem to have less fear.
We each have our own unique relationship with death, our own particular history and circumstances, but one way or another we all relate to death. The question is: how do we relate with this reality and how does this color our lives? It is possible to come to terms with the fact of death in a way that enriches our lives, but to learn from death we must be willing to take a dispassionate look at our experiences and preconceptions.
Reflecting on our own mortality and the reality of death is practiced in many contemplative traditions. In the Buddhist tradition, the contemplation of death is said to be the “supreme contemplation.” It encompasses reflecting not only on physical mortality, but on impermanence in all its dimensions.
By means of meditation and by developing an ongoing awareness of death, we can change our relationship with death and thereby change our relationship with life. We can see that death is not just something that pops up at the end of life, but is inseparably linked with our life moment to moment, from the beginning to the end. We can see that death is not just a final teacher. It is available to teach us here and now.
When we contemplate in this way, our many schemes for getting around the reality of death, such as coming up with interpretations to make it more palatable, are exposed one by one and demolished. Death is the great interrupter, unreasonable and nonnegotiable. No amount of cleverness will make it otherwise.
Contemplating death is not an easy practice. It is not merely conceptual. It stirs things up. It evokes emotions of love, sorrow, fear, and longing. It brings up anger, disappointment, regret, and groundlessness. How tender it is to reflect on the many losses we have experienced and will experience in the future. How poignant it is to reflect on life’s fleeting quality.
How we think about death matters. It affects how we live our life and how we relate to one another.
In this practice, we deliberately bring our attention back again and again to our relationship with death. We examine what we mean by death and what it brings up for us. We reflect on our experiences and reactions to it.
It is a bit like going for marriage counseling. “When did you two first meet? Tell me a little about your history. Do you spend much time together? What is it about him or her that has offended you? How do you see your relationship moving forward?” You could say that death is your most intimate partner. It is with you all the time, completely interwoven into your daily activities. Since that is the case, wouldn’t it be worthwhile to make a relationship with it?
But our relationship with death is not that simple. In order to understand it, we need to slow down and systematically examine our ideas about it, what it brings up for us, and what it means to us. Death stirs up all kinds of thoughts. And hidden within those clouds of thoughts is a small, unspoken, deep-rooted, yet persistent notion—that we will come through it intact, as though we could come to our own funeral.
The more closely you look into all these ideas, the more you see how inadequate the conceptual mind is in the face of death. Nonetheless, how we think about death matters. It affects how we live our life and how we relate to one another.
Contemplative practice challenges us to look deeply into our thoughts and beliefs, our fantasies and presumptions, and our hopes and fears. It challenges us to separate what we have been told from what we ourselves think and experience. We have all kinds of thoughts about what happens when we die and how we and others should relate with death, but through meditation we learn to recognize thoughts as thoughts. We learn not to mistake these thoughts and ideas about death for direct knowledge or experience. We learn not to believe everything we think or everything we have been told.
“Laughing in the Face of Attachment,” painting by Tasha Mannox from the series “Laughing in the Face of Death: To live and die without regrets.”
We are in a dance with death at all levels, and each level influences and is influenced by the others. We are influenced by what we have been told about death and dying, by our personal history, by our cultural biases, and by what we have observed. We are also influenced by inner habits of thought and conditioned responses. Our most subtle views and reactions to impermanence may be quite hidden, but they touch on our view of life altogether, and on our personal identity.
If we want to understand our relationship with death, we need to explore its broader as well as its more subtle dimensions. If we are willing to take an honest look at how we personally deal with this reality, we can develop a deeper understanding of impermanence and even befriend it.
One way to begin is by reflecting on your personal history with death. What have you been told about death? What are some of your earliest experiences of it?
In my case, when I was about five, I was told my babysitter had died, and that was it. For me, she just disappeared, and children did not go to funerals. A bit later, when my aunt died, I was told that she would go to heaven, a very beautiful place. But I didn’t think people really believed that, because all I saw were people upset and crying. When pets died, I was told they “went to sleep.” It didn’t look like sleep to me.
As a child, I observed that dead animals did not breathe or move about like live ones. I saw that they shriveled up and began to smell funny, or were squashed beyond recognition. I saw that dogs hit by cars screamed in pain and that animals looked sick before they died. I saw that people became old and frail. I saw that when you killed a bug, you could not make it come back to life, even if you felt sorry. My friends and I thought it was funny to sing ditties, like “The worms crawl in, the worms crawl out…” Death was not that real to us; we made it into a joke.
I observed many such things on an outer level, but on an inner level, I did not have a clue as to what death was about or what it all meant. I did not know how to make sense of it, or to link it to other experiences in my life.
Death is the texture out of which we grow our identity, the stage on which we enact our story.
In our encounter with mortality, it is this inner dimension, the relationship dimension, that we need to explore. It becomes obvious that to get to a more uncluttered relationship with death, we first need to plow through a surprising number of ideas, presumptions, and speculations, some of which are very deep-rooted. Through this process, we can become aware of the many concepts that are floating around in us, and try to figure out where they come from and what effect they have on us.
When we look into where all this comes from, we encounter a paradox. We usually consider death to be the end, but it begins to seem that death is in fact the beginning. It is the texture out of which we grow our identity, the stage on which we enact our story.
We can begin our exploration right where we are. We have already been born, we are alive, and we have not yet died. Now what? We might connect to our life in terms of a story or a history. For instance, we were born in such and such a time and place, we did this and that, and we have a particular label and identity. But that story is always changing and in process; it is not all that reliable. However, when our story is combined with a physical body, we seem to have something more solid, a complete package. We have something to hang onto and defend. We have something that can be taken away.
But what do we have to hang onto, really? Our story is not that solid. It is always being revised and rewritten. Likewise, our body is not one solid continuous thing. It too is always changing. If you look for the one body that is you, you cannot find it.
The closer you look, the less solid this whole thing seems. When we investigate our actual experience, here and now, moment by moment, we see how fleeting and dynamic it is. As soon as we notice a thought, feeling, or sensation, it has already happened. Poof! It is the same with the act of noticing. Poof! Gone! And the noticer, the one who is noticing, is nowhere to be found. Poof! When we contemplate in this way, we begin to suspect that this life is not all that solid—that we are not all that solid.
This may seem like bad news, but in fact this discovery is of supreme importance. As we begin to see through our mythical solidity, we also begin to notice all sorts of little gaps in our conceptual schemes. We notice little tastes of freedom and ease in which our struggle to be someone dissolves, and we just are. In such moments, at least briefly, we are not being propelled by either hope or fear. We see that continually holding onto life and warding off death as a future threat is not our only option. There is an alternative to our tight-jawed habit of holding on and defending.
After each little insight or pause, there is a regrouping, and we find ourselves reconstructing our world. Each time we put it back together, we are also putting together the threat that it cannot be maintained. We do this over and over again. We are repetitively and continuously fueling the pretense of solidity and the fear of death that comes with it.
To undo this harmful habit, we need to see it more clearly. We need to recognize that we ourselves are responsible for perpetuating it, and therefore we have the power to stop.
“Laughing in the Face of Jealousy,” painting by Tasha Mannox from the series “Laughing in the Face of Death: To live and die without regrets.”
In looking at the seeds of our relationship to life and death at a subtle inner level, we uncover how we set ourselves up for a struggle with death from the beginning—at the very personal level of identity and self-definition.
The more solidly we construct ourselves, and the more rigidly we identify with this construct, the more we have to defend and the more we have to fear. Looking at death in terms of such subtle underlying patterns may seem inconsequential, but it is not.
When we drop the battlefield approach—that life and death are enemies—we become open to an entirely new way of viewing things. Instead of this vs. that, us vs. them, something much more inspiring can take place. Experiences can arise freshly because they are immediately let go. Because they are dropped as soon as they arise, there is nothing to hold onto and nothing to lose. There is no battlefield, no winner and loser, no good guy and bad guy.
Simple formless meditation is a very powerful tool for relaxing this pattern of holding and defending. Working with death through our awareness of momentary arisings and dissolvings is a profound practice. It shows us that the life–death boundary is an ongoing and quite ordinary experience, and that this unsettling meeting point colors all that we do. If we can become more grounded at this level, we can become more open to what death has to teach us altogether.
Although death is an ongoing reality, there are times when it hits us particularly hard. It may be when we have a health scare or a near accident. At such times, we really wake up to the presence of death, and its teachings come through loud and clear. The heart pounds, the senses are heightened, and we feel extra alive. There is a stillness, as though time had stopped.
When we become complacent and take things for granted, death steps in.
Times like this are so simple and straightforward, so immediate. “This is it,” we think. “It’s actually happening.” In such moments, the heightening of our awareness of death simultaneously heightens our feeling of being alive.
In fact, in the face of death, we feel more fully alive than ever. We are shocked into thinking more seriously about what to do with the time that we have. Usually, though, we don’t maintain that awareness, and the feeling of heightened aliveness fades away. We revert to the default pattern of avoiding death, and, along with that, our dulled down approach to life.
Maintaining an awareness of death makes life more vivid. In the light of death, petty concerns fall away and our usual preoccupations become meaningless. It is as though clouds of dust that have covered over something shiny and vivid have been blown away, and we are left with something raw, immediate, and beautiful. We have insight into what matters and what does not.
Awareness of death—hearing its teaching—cuts through the subtle clinging at the core of our experience. It cuts through our self-clinging and our clinging to others. This may sound harsh, but all that clinging has not really helped us or anyone else. Our clinging to others may have the appearance of real caring, but it is based on fear and an attempt to freeze and control life. It is a way of tuning out death and pulling back from the intensity of life. But if we develop more ease with our own impermanence and struggles with death, we can be more understanding of others and their struggles. We can connect with one another with greater genuineness and warmth.
Death turns out to be the teacher who releases us from fear. It’s the teacher that opens our hearts to a more free-flowing love and appreciation for life and one another. When we get stuck in self-importance and earnestness, death steps in. When we get caught in self-pity, death steps in. When we become complacent and take things for granted, death steps in.
Death spurs us forward with a sense of urgency and puts our preoccupations in perspective. Death lightens our clinging and mocks our pretensions. Death wakes us up. It is our most reliable teacher and most constant companion.
[S]tay with me here: all hero stories should end with a coffin. It’s the only logical ending.
Every single super-hero put on their cape, cowl, or spandex because they were no longer able to accept their world for what it was. They couldn’t turn away from the malice, injustice, chaos, or whatever ominous synonym for “badness,” that seeped into the cracks of their society or personal life.
And tragically, they’ll never conquer that badness. The super-hero is never going to fully vanquish their arch-nemesis once and for all. The hero’s mission will never be finished because that which they chose to fight will always remain. Badness, sadly, is a facet of human nature. The only true ending to this futile struggle is a funeral.
Very doom and gloom, right? Not when you realize the beauty in that futility.
Wolverine has the most complete arc in all of superhero comics. Debuting in 1975, the man we eventually came to know as Logan was nothing more than a wandering savage looking for purpose and to atone for his sins. After a tussle with The Hulk, Professor X approached Wolverine to join the X-Men and Wolvie said, “Why not?”
From there, he found a home within the X-Mansion, dignity as an X-Man, love in the eyes of Jean Grey, and finally, atonement by founding his own school for wayward mutants to ensure that they would never suffer the same mistakes that he did. His story is a complete circle — a journey made whole, as the wandering savage found peace in helping others.
And at the end of that circle was death.
In the subtly titled mini-series “Death of Wolverine,” Logan meets his end after he loses his healing factor and ends up encased in a tomb of adamantium en route to finally finding the scientist who laced his bones with the mysterious alloy in the first place. The series felt mundane to me until the last four pages. This scientist, realizing he is about to be all sorts of stabbed, asks a murderous Wolverine — who has a coating of smoldering adamantium hardening on his person — what made him a hero? What had he ever accomplished?
Before Wolverine answers that question, the audience is gifted a stunning, heart-wrenching, two-page splash of Wolverine’s finest moments — right before Logan makes his final kill. Then he kneels down, accepting the adamantium grave, and gruffly answers that question by saying, “Enough.”
“Enough,” meaning that Wolverine finally realized all the pain he suffered, blood that he spilled, and death he brought was worth something.
“Enough,” meaning that the sum of deeds helped make the world around him better.
“Enough,” meaning he had lived his purpose and his journey was at its end.
And “Enough,” meaning that he finally atoned for the man he was and was at peace with the man he became.
It’s a perfect death. We were given the opportunity to go on one final adventure with a character we love. The character is given literal and existential threats along the way, suggesting that the audience ponder the meaning of his life. And ultimately, the character and the audience are meant to find closure and meaning from the character’s journey, just as the grim reaper comes for his due.
But Wolverine is a comic book character.
And just like every major comic book character since 1992 (thanks in some part to the wild critical and financial success of “The Death of Superman”), he died and is now being resurrected via plot-chicanery. And so this begets the age-old question: What is the point of death in super-hero comics?
That’s simple. Death in super-hero books is no longer an ending. It’s a plot device. It’s just another story.
A super-hero’s battle will never end. Batman will never rid Gotham of random violence and chaos. The Flash will never be fast enough to stop all the tragedies in Central City from happening. Daredevil will never bring justice to Hell’s Kitchen.
But they’re not meant to. Their battles and stories are meant to be anecdotes and parables that inspire us to make ourselves and our world better.
That message though invariably gets muddled amidst all the plot contrivances, retcons, and reboots of any given hero’s character history. We as an audience often spend more time trying to keep all the details in check. We care more about what the Speed Force can do or what color Kryptonite is getting tossed around. And we stop paying attention to what the super-hero’s story is trying to say.
This is why we need the reaper.
The reaper can tear away all the plot contrivances around a super-hero’s story to distill the very essence of that character’s message. When the Flash famously ran himself to death to stop the Anti-Monitor in Crisis on Infinite Earths, did you care about the specifics of how it happened? Were you concerned about every detail of Doomsday’s origin did as you watched Superman have his ill-fated boxing match with him to protect Metropolis? Did it bother you that Wolverine had bone claws under his adamantium skeleton as the cocoon was hardening around him?
No, you felt that Barry would knowingly die to help as many people as he could. You remembered that Clark is a farm-boy, who taught you to stand up to monsters. And that Logan was just a man who didn’t want people to suffer the way he did.
Super-hero deaths are often telegraphed and advertised to readers for the sake of marketing. No matter how final it appears or how long it takes, they will always be reversed. They may be clichéd, melodramatic, and whatever that guy from your comic-shop said — but: when they’re used effectively, they can definitively epitomize and enshrine a hero’s message.
There is no better way to celebrate the life of a super-hero, than by watching their death.
[L]ast spring, at Green-Wood cemetery in Brooklyn, where the artist Jean-Michel Basquiat is buried, another conceptual artist, Sophie Calle, launched an installation called Here Lie the Secrets of the Visitors of Green-Wood Cemetery. For the next 25 years, anyone passing by will be able to write down their most intimate secrets and bury them in a grave designed by the artist. The cemetery also hosts moonlit tours, cocktail parties, dance performances, and even yoga classes.
Death is hot right now, and upbeat gatherings in cemeteries are just a small part of the trend. One of the chief desires of our time is to turn everything we touch into a reflection of who we are, how we live and how we want others to view us – and death is no exception. Once merely the inevitable, death has become a new bourgeois rite of passage that, much like weddings or births, must now be minutely planned and personalised. Not since the Victorian era’s fetishisation of death, with its all-black attire, elaborate mourning jewellery and seances, has death been so appealingly packaged. Every death must be in some way special and on-trend. Finally, the hipster can die as he lived.
If you fancy an environmentally friendly burial, you can choose to be wrapped in a biodegradable artisanal shroud, decorated to your specifications by the bespoke company Vale for $545. (It’s just $68 for pets.) Or you can be buried, as the celebrated California chef Alice Waters says she wants to be, in a burial pyjama suit seeded with mushrooms that help your body decompose more quickly. A few years ago, artist Jae Rhim Lee delivered a Ted talk while wearing one such suit – a black hooded one-piece threaded with white veins infused with mushroom spores. On stage, Lee cheerfully explained that she is training mushrooms to eat her when she dies by feeding them her hair, nails and dead skin so they recognise her body.
Artist Jae Rhim Lee giving a Ted talk in a special burial suit seeded with pollution-gobbling mushrooms.
For people less concerned about the environment and more worried about the terrifying prospect of dying alone, there are now solutions (or at least partial ones). You can hire a death doula, a trained professional who will assist at the end of life in the same catch-all manner that birth doulas are there during labour. You can request a home funeral, in which your friends and family pay their respects to your corpse in the comfort of your living room, with every detail as carefully planned as a wedding. And before that day arrives, you can discuss the facts of death with like-minded souls at a Death Cafe, a meeting of the global movement started by Jon Underwood in 2011 (who died last summer of acute promyelocytic leukaemia) as a way for people to gather and reflect on mortality.
One of the people pioneering this new way of approaching death is Caitlin Doughty, a young, Los Angeles-based mortician who looks like a lost member of the Addams Family. She has written a bestselling memoir, hosts a YouTube series called Ask a Mortician and has founded a “death acceptance collective” called The Order of the Good Death, whose youthful members promote positive approaches to mortality.
“It’s OK to be openly interested in death practices,” Doughty told me while driving through LA one afternoon last autumn. “It makes you an engaged human who cares about all aspects of life. Ghettoising it as an interest particular to goths, weirdos or people obsessed with murder creates a dearth of honest conversation about death in the western world.”
This growing interest in alternative “death practices” began as a way to skirt the commercialism and uniformity of the funeral industry. And it appeals to a diverse set of people. “This desire for a pine box in the ground brings together hippies and libertarians, stay-off-my-land gun owners, certain religious people, Trump voters who don’t want big business ignoring what they want,” Doughty said. “They might not all have the same back-to-the-earth vision, but it’s the same fight for their fundamental rights. They don’t want a bland corporate infrastructure to dictate what happens to their mortal remains and what represents their life.”
Given that the idea of rethinking death connects with millions of people who are tired of the rampant commercialism and homogeneity of modern life, it was only a matter of time before commercial interests caught on. Just as the Danish concept of hygge was sold – in the form of scented candles and hand-knitted woollen socks – to consumers looking for comfort in troubled times, there is gold, too, in our obsession with a good death.
[P]ulishers, in particular, have latched on to the trend. Books about death are nothing new, of course, but the pace at which they’re arriving seems to have accelerated. Last year saw the arrival of a stack of literary memoirs about death by authors such as Edwidge Danticat and Robert McCrum. In his memoir, My Father’s Wake, the writer Kevin Toolis explains why the Irish get death right, while Caitlin Doughty’s new book, From Here to Eternity: Travelling the World to Find the Good Death, explores the way cultures across the world, from Indonesia to Bolivia to Japan, approach death.
But perhaps it is not the Irish or the Bolivians who have perfected the art of dying well, but the Swedish. In recent months, thanks to a publisher-led media campaign, you may have come across the concept of döstädning, the Swedish practice of “death cleaning”. Death cleaning applies a simple formula to the process of dealing with our possessions before we die. In Marie Kondo’s The Life-Changing Magic of Tidying, a bestselling guide to tidying up your home, and thus your life, the essential question is whether a given object “sparks joy”. In death cleaning, it is “Will anyone I know be happier if I save this?”
It is easy to see the appeal. Death cleaning addresses many of the aspects of contemporary life that make us most anxious. For those who feel that they have accumulated too much stuff and that all this stuff is getting in the way of their spiritual development, it offers a practical guide to de-cluttering. For those who worry about their privacy or the prospect of relatives discovering their secrets, it offers sensible precautions. For those who fear a long, bewildered, incapacitated old age, it is a way of coping through clear-eyed preparation and understanding.
While Silicon Valley billionaires search for cures for death, the rest of us are just seeking ways of accepting death, ordering a long and messy old age and making peace with our relatives, who are already horrified at the idea of looking after us in our incontinent, incoherent dotage. The fact of living longer doesn’t just give us time to think about death, but also plunges us into chaos, sickness and confusion, and death cleaning seems a valiant attempt to counter this.
Death cleaning is a concept that has had passing mentions in Sweden, but it is not a well-known part of the national culture. In truth, it seems to be more talked about by foreigners who like to imagine Scandinavia as a place where people have life sorted out than it is by Swedes themselves. But even if Swedes rarely talk about döstädning, there is something authentic about the underlying philosophy. The Swedish ambassador to the US, Karin Olofsdotter, recently told the Washington Post that death cleaning is “almost like a biological thing to do”, the natural product of a society that prizes living independently, responsibly and thoughtfully, and whose homes reflect that ideal.
A friend of mine who works as a radio producer in Stockholm said: “My mother is döstädning incarnated. She has been in the mode of frenetic cleaning for couple of years now – she is 65 – [and thinks] throwing stuff out will make it easier for us children when she is no longer with us. She doesn’t want us to be left with difficult decisions about what to do with it and she doesn’t want personal stuff to get in the wrong hands. And ever since I was a teen she has forced me to get rid of stuff – my earliest paintings, old clothes, books I read as a child, memorabilia. Keeps telling me that it’s the best for everyone. I don’t know if it’s typically Swedish, but it is very, very rational and unsentimental.”
The well-funded Swedish welfare state enables elderly Swedes to live independently. “Perhaps this also adds to the sense that they feel they must get their things in order before they die, so that no one else should be responsible for it,” says Michael Booth, author of The Almost Nearly Perfect People, a cultural tour of Scandinavian countries. “Swedes are deeply, deeply responsible people. It is very important for a Swede to do things properly, not to be a burden on others, to take responsibility in this way. Swedes are very ‘proper’.”
According to Booth, the decluttering element of death cleaning “chimes with the general parsimony and minimalism of Lutheranism, which you find traces of throughout many aspects of Scandinavian culture. In Sweden especially, they value the ‘modern’ and ‘new’, and so, if you visit a council dump or recycling centre, you see some fairly eye-popping items discarded – stuff Brits would never throw away.”
Others are more sceptical about the notion that death cleaning is the product of a distinctly Swedish sensibility. “It sounds like a mind-body-spirit thing that could have come from anywhere,” says Robert Ferguson, author of Scandinavians: In Search of the Soul of the North, another book that tries to figure out the roots of our fascination with Scandinavia. “Actually I’m still waiting for the world to discover the joys of kalsarikänni, a Finnish word that means ‘drinking beer on your own at home in your underpants with no intention of going out’.”
[T]he book responsible for spreading the death-cleaning gospel is by Margareta Magnusson, a Swedish artist who describes herself as between “80 and 100”. The Gentle Art of Swedish Death Cleaning: How to Free Yourself and Your Family from a Lifetime of Clutter came out in English a few months ago. It is part practical guide to getting your affairs in order, part discourse on accepting the reality of death. Over the course of 38 very short chapters with titles such as If It Was Your Secret, Then Keep It That Way (or How to Death Clean Hidden, Dangerous and Secret Things), Magnusson sets out her pragmatic and upbeat approach to mortality. “Life will become more pleasant and comfortable if we get rid of some of the abundance,” she writes.
“The message was: we just have to accept that one day we will die,” said her literary agent, Susanna Lea. “Either our loved ones will begrudge us, or they will hold on to this wonderful memory and love us for sorting everything out. Which one do you want?”
As soon as Lea sent the book proposal out, publishers eagerly snapped it up. A German editor made an offer after just four hours. A couple of days later, it was sold to a publisher in Sweden, and then Lea took it to the 2016 Frankfurt book fair, the marketplace for international sales, and sold it to the UK, US and Australia. It is now being translated into 23 languages.
“Interestingly enough, the eastern Europeans have been the slowest to buy it,” said Lea. “They said: ‘We just don’t talk about death.’ I thought the Latin countries might not talk about death, but they completely got it.”
Margareta Magnusson, the author of The Gentle Art of Swedish Death Cleaning.
The title has been a challenge. Some countries balk at having death in the title of a book that is slim and small, and packaged like a gift book sold at check-out counters. Others struggle with translating the phrase itself. The Swedish just call their edition Döstädning (the subtitle translates as “not a sad story”). However, nettoyage de la mort does not work in French – they are going to call it instead La Vie en Ordre. The Germans get around it by giving it a title that translates as “Frau Magnusson’s Art of Putting Her Life in Order”.
As the book proposal appeared in the year that hygge and the decluttering guru Marie Kondo conquered the world, it’s not surprising that a book that could be pitched as “Marie Kondo does hygge” was a big hit with publishers. But Jamie Byng, head of Magnusson’s UK publisher, Canongate, strenuously rejects the comparison. “We were not looking for another Marie Kondo, fuck no,” he told me. “I was taken by the idea that this elderly Swedish lady had written a book about leaving this world gracefully and with as little mess as possible. There’s something of Swedish zen about it.”
Magnusson lives in an apartment in a large development in the Södermalm neighbourhood of Stockholm, not far from the upmarket raincoat brand Stutterheim (whose motto is “Swedish melancholy at its driest”), and shops that sell elegant, spare Scandinavian furniture. She’s tall and slender, wearing a striped French sailor-style shirt, faded jeans and trainers, with a grey bob and a long, oval-shaped face. Her most striking feature is her large, round, wet blue eyes. She looks healthy and spry and fashionable without trying hard, which fits the image of her as a mellow, slightly kooky but wise Scandinavian grandma who writes things such as: “Maybe Grandfather had ladies’ underwear in his drawer and maybe Grandma had a dildo in hers. But what does that matter now? They are no longer among us; if we liked them it really should be nothing for us to worry about.”
The first thing to note about Magnusson’s home is that it is not in any way minimalist. In her living room there are shelves of hundreds of books, and gentle abstract paintings by Magnusson herself on the walls. There are a surprising number of stuffed toys and masks from Asia (her late husband was Swedish but born in Japan, and the family lived in Singapore and Hong Kong as he moved frequently for work), presumably all of which have passed the making-people-happy test. The flat is packed with objects of sentimental value that have accrued around an elderly person who once lived in a larger home. It’s all cheerful and very, very neat.
Magnusson noted that Sweden used to be a country of big, quality companies that made things you might want to pass on to your children, or at least that lasted a very long time. “Swedish safety matches and Volvo – the safest car. Now, Sweden is just H&M and Ikea, stuff that doesn’t last more than five years if you’re lucky. It must have changed the culture in the country in a way, I think.”
She has a large collage of family photos hanging in her bedroom: a sister and brother, who are both dead, and her husband, who died in his mid-70s. Her book suggests that sorting through photographs is not the place to begin your death-cleaning process – too many memories to get swept up in, and too much sentiment. Better to start with the kitchen. But when it’s time to declutter your photos, she advises, be ruthless. One of her points is that if you don’t know the names of the people in a photo, feed them to a shredder.
Magnusson has a way, when talking about her life, to assume the mode of a literary narrator. Everything she says sounds like a first line to a self-consciously ruminative memoir. “I grew up in Gothenburg on Sweden’s west coast, and was born on New Year’s Eve,” she told me. “I think I was born in a happy way. It was happy, I don’t know. It started happy.”
An ecological coffin under construction.
Her pragmatic nature is such that she seemed almost frustrated explaining simple ideas about death and decluttering to a non-Swede such as me. She plans to be cremated when she dies, which is common in Sweden, and for there to be a memorial plaque her family can visit. “I don’t believe in life after death. When I’m dead, I will be dead,” she said.
“To think that you cannot handle yourself, that you think you don’t know what’s going to happen – that must be terrible. I don’t have that fear. I almost died some years ago.” She had woken up in the middle of the night with some kind of heart trouble. “On the way to the hospital, I was just gone,” she said. “Then I really realised that I didn’t see any light in tunnels. I was so happy when I woke up, but I realised that nothing will happen.”
There’s a tipping point in your life, she said, when you start attending more funerals than weddings. “Maybe in the 50s or 60s it starts to happen: my parents, my mother-in-law, my husband and friends,” she said. By that point, Magnusson’s daughter Jane, who lives just across the road, had come over.
“We had a funeral on Friday. It was actually very pleasant,” said Jane.
“Yes, it was very nice. You meet a lot of friends that you had together,” said Magnusson.
“You get to have a good cry,” Jane said.
“Yeah, you have a good cry,” said Magnusson. “But you have also a good laugh.”
[S]wedish death cleaning has found a kind of American counterpart in the rise of a pair of young men from Ohio who call themselves the Minimalists. When one of the duo, Joshua Fields Millburn, lost his mother in 2009, he was left wondering what to do with everything she had amassed in her small apartment. In the end, he decided to donate it all to charity. It was something of an epiphany for Millburn, who began throwing out one thing he owned every day for a month. What would go on to become the foundational principle of his brand of minimalism dawned on him: “Our memories are not inside of things; they’re inside of us.” From that moment almost a decade ago, Millburn and his friend Ryan Nicodemus have built a Minimalist empire – books, podcasts, documentaries, speaking tours – based on the idea that accumulating stuff is simply what we do to distract ourselves from our real problems: lack of satisfaction with work, love, life and, ultimately a way to deny the inevitability of death.
Isn’t all decluttering about death? I asked Doughty, the mortician. “It is a little death to give away a keepsake or an item,” she agreed. “For most people to admit that they should be keeping track of stuff and getting rid of things is extremely threatening to their sense of self and idea as mortal.”
For many of us, the main way we try to look at death is by not looking at it. My own parents constantly talk about how they want their dead bodies to be dealt with – my mother has gone from wanting her cremains to be flushed down the toilet to wanting her corpse fed to dogs – and yet the elaborate plans for death are a way around dealing with it. My father won’t even write a will, instead preferring to phone me at odd hours from California to get me to make solemn promises that, after he is gone, I will do or will not do certain things (such as keeping his house in the family, or making sure to invite specific people to his funeral).
This highly developed awareness of their own mortality and careful consideration of how to dispose of their remains, combined with a total lack of planning for what happens in the weeks, months and years after the funeral, sometimes feels like my parents’ way of ensuring that their large personalities will gently haunt me from the afterlife. Or, to put it more politely, it seems like a way to guarantee their presence in my life as long as possible.
Even surrounded by loved ones, you check out alone’ … mortician Caitlin Doughty.
But I also sympathise with them. Both of my parents are 66, and will hopefully be around for some time. Dealing with one’s own legacy is a stark business. It involves accepting that you are the one who cares most – or perhaps the only person who cares at all – about your own legacy. At the same time, it means confronting hard questions about the people you will leave behind. Will your last gift to your loved ones be to leave them a few valuable possessions, or a photo album full of memories, or simply the great favour of not burdening them with having to sort through all the stuff you accumulated over your lifetime?
Doughty says that any parent who is “unwilling to have a basic conversation about death with your desperate kids – that’s a profound unkindness”. At 33, she has a will and a plan for what will happen to her business and the small cabin she owns when she dies. That has brought her comfort, she says. At 40, I don’t have any plans in place for my own death, unless you count drunkenly asking various friends to promise they would take my dog in the event that she becomes an orphan. Perhaps I am more like my parents than I would like to think.
Planning for death is hard, because it means that one must accept that you are the one who cares most, or at all, about your own legacy. To plan for death is to accept both ideas simultaneously. “There might be no one at your bedside. You might not be found for two days and eaten by cats. That’s all in the realm of possibility,” Doughty said. “But even surrounded by loved ones, you check out alone. This is your personal journey to go on.”
The idea of death as a solo journey is redolent of the language of wellness: the way people talk about getting into their fitness or diet or mindfulness routines. This new view of death borrows heavily from another trendy concept: self-care, the idea that looking after oneself is a political act, shoring yourself up to be able to keep fighting and facing the world. Self-care, too, has been co-opted to be about treating yourself to bath products, massages, face masks and yoga retreats – granting yourself an excuse to make it OK to buy stuff. The commercialisation of death is the inevitable sequel to the monetisation of every other part of life.
Death cleaning is possibly more potent than other wellbeing trends in that it taps into deep emotions: fear, guilt, regret. The death industry exploits people’s fears of inadequacy. You can’t just die – at the very least, you’ll need to invest in a house-tidying consultant, a death doula, an environmentally sound bespoke shroud, and a home funeral, to prove just how well you lived.
