Participants in the Stanford Letter Project working on letters to their family members.
By VJ PERIYAKOIL, M.D.
[O]ver the last 15 years, as a geriatrics and palliative care doctor, I have had candid conversations with countless patients near the end of their lives. The most common emotion they express is regret: regret that they never took the time to mend broken friendships and relationships; regret that they never told their friends and family how much they care; regret that they are going to be remembered by their children as hypercritical mothers or exacting, authoritarian fathers.
And that’s why I came up with a project to encourage people to write a last letter to their loved ones. It can be done when someone is ill, but it’s really worth doing when one is still healthy, before it’s too late.
It’s a lesson I learned years ago from a memorable dying patient. He was a Marine combat veteran who had lived on a staple diet of Semper Fi and studied silence all his life. A proud and stoic man, he was admitted to the hospital for intractable pain from widely spread cancer. Every day, his wife visited him and spent many hours at his bedside watching him watch television. She explained to me that he had never been much of a talker in their 50-plus years of marriage.
But he was far more forthcoming with me, especially when it became clear that his days were numbered. He spoke of his deep regret for not having spent enough time with his wife, whom he loved very much, and of his great pride in his son, who had joined the Marines in his father’s footsteps.
One afternoon, when I mentioned these comments to his wife and son, they looked incredulously at each other and then disbelievingly at me. They thanked me for being kind but stated that my patient was incapable of expressing such sentiments.
I wanted to prove my credibility and to make sure that his wife could actually hear her husband professing his love. I knew he was unlikely to speak to them directly. So I took my huge family camcorder with me the next morning on medical rounds and – with the patient’s consent — recorded an open letter from him to his family. When I gave them the taped letter as a keepsake, both his wife and son were moved to tears.
The experience inspired an idea that has grown into the Stanford Friends and Family Letter Project. With guidance from seriously ill patients and families from various racial and ethnic groups, we developed a free template for a letter that can help people complete seven life review tasks: acknowledging important people in our lives; remembering treasured moments; apologizing to those we may have hurt; forgiving those who have hurt us; and saying “thank you,” “I love you” and “goodbye.”
A letter by a project participant named Harvey Brown, written with the help of his wife, Wanda Brown.
While these may seem intuitive, many people don’t complete these steps before they die, leaving their family members with unanswered questions and regret.
(A video showing people participating in the project can be seen here.)
The letter template, which is available in eight languages, allows writers to express gratitude, forgiveness and regret. In one letter, a participant wrote to his wife, Lily, “I wish I had loved you more.”
Many writers use the templates to express pride in their children in ways they might not do in person. One wrote to a son, Michael: “You are so courageous to change your major and do what it takes to be successful to reach your dreams.” Another wrote, “Life for us was never easy but you overcame obstacles.”
And some apologize. A man named Tyrone Scott wrote to his daughter, “I’m sorry that I wasn’t there when you were growing up. If I could relive my past, I would not have let your mother take you away from me.”
The letters can be a chance to let go of grudges. Shirley Jones wrote, “To Harold: You have forgotten to repay some of the personal loans you obtained from us. We are wiping your account cleared.”
So we invite you to use the “Dear Friends and Family” template and write your letter now while you still can.
Those with chronic or serious illness may use the illness letter template; there is also a healthy letter template for those in good health. In working with people from diverse cultural backgrounds, I found that some were reluctant to complete the “goodbye” task for fear that it might become a become a self-fulfilling prophecy. I recommend that people write only the parts they feel comfortable with.
Once the letter is written, you can choose to share it with your loved ones right away. You can also store it in a safe place or with a trusted person to be given to your family in the future. Some people prefer to use the letter as a living legacy document and update it over time.
It may take tremendous courage to write a life review letter. For some people, it evokes deep and troubling emotions. Yet it may be the most important letter you will ever write.
[I]n the Halloween season, American culture briefly participates in an ancient tradition of making the world of the dead visible to the living: Children dress as skeletons, teens go to horror movies and adults play the part of ghosts in haunted houses.
But what if the dead played a more active, more participatory role in our daily lives?
It might appear to be a strange question, but as a scholar of late medieval literature and art, I have found compelling evidence from our past that shows how the dead were well-integrated into people’s sense of community.
Ancient practices
In the medieval period, the dead were considered simply another age group. The blessed dead who were consecrated as saints became part of daily ritual life and were expected to intervene to support the community.
A funeral mass, with mourners, from a Book of Hours.
Families offered commemorative prayers to their ancestors, whose names were written in “Books of Hours,” prayer books that guided daily devotion at home. These books included a prayer cycle known as the “Office of the Dead,” which family members could perform to limit the suffering of loved ones after death.
Medieval culture also had its ghosts, which were closely linked with the theological debate concerning purgatory, the space between heaven and hell, where the dead suffered but could be relieved by the prayers of the living. Folk traditions of the dead visiting the living as ghosts were thus explained as souls pleading for the prayerful devotion of the living.
When, how practices changed
The Reformation in Europe radically changed this cultural interface with the dead. In particular, the idea of a purgatory was rejected by Protestant theologians.
While ghosts persisted in folk stories and literature, the dead were pushed from the center of religious life. In England, these changes were intensified in the period after Henry VIII broke with the Catholic Church in the 1530s. Thereafter, the veneration of saints and commemorative prayers associated with purgatory were banned.
The dead were also removed from view in more literal ways: Reformation iconoclasts, who wished to purge churches of any association with Catholic practices, “whitewashed” hundreds of church interiors to cover the bold, colorful murals that decorated the medieval parish churches.
One of the more popular mural subjects that I have studied for many years was the Dance of Death: over 100 mural paintings of the theme, as well as dozens of manuscript illuminations, have been identified in England, Estonia, France, Germany, Italy, Spain and Switzerland.
Bernt Notke, Danse Macabre, Tallinn, Estonia (late 15th century).
A powerful metaphor
Dance of Death murals typically depicted decaying corpses dancing amid representative figures of late medieval society, ranked highest to lowest: a pope, an emperor, a bishop, a king, a cardinal, a knight and down to a beggar, all ambling diffidently toward their mortal end while the corpses frolic with lithe movements and gestures.
The visual alternation between dead and living created a rhythm of animation and stillness, of white and color, of life and death, evocative of fundamental human culture, founded on this interplay between the living and the dead.
When modern viewers see images like the Dance of Death, they might associate them with certain well-known but frequently misunderstood cataclysms of the European Middle Ages, like the terrible plague that swept through England and came to be known as Black Death.
My research on these images, however, reveals a more subtle and nuanced attitude toward death, beginning with the evident beauty of the murals themselves, which endow the theme with color and vitality.
The image of group dance powerfully evokes the grace and fluidity of a community’s cohesion, symbolized by the linking of hands and bodies in a chain that crosses the barrier between life and death. Dance was a powerful metaphor in medieval culture. The Dance of Death may be responding to medieval folk practices, when people came at night to dance in churchyards, and perhaps to the “dancing mania” recorded in the late 14th century, when people danced furiously until they fell to the ground. But images of dance also provoked a viewer to participate in a “virtual” experience of a community. It depicted a society collectively facing up to human mortality.
Mural of the Danse Macabre from the parish church of Kermaria-en-Isquit, France (late 15th century).
A healthy community
In analyzing the murals in their broader social context, I found that for medieval cultures, dying was a “transition,” not a rupture, that moved people from the community of the living to the dead in stages.
It was part of a larger spiritual drama that encompassed the family and the broader community. During the dying process, people gathered in groups to aid in a successful transition by offering supportive prayer.
Scenes of dying, a funeral mass, sewing the shroud, burial and comfort of the widow. In the lower margin, a group of nobles confronts a symbolic figure of death, riding a unicorn.
After death, groups prepared the corpse, sewed its shroud and transported the body to a church and then to a cemetery, where the broader community would participate in the rituals. These activities required a high degree of social cohesion to function properly. They were the metaphorical equivalent of dancing with the dead.
The Dance of Death murals thus depicted not a morbid or sick culture but a healthy community collectively facing their common destiny, even as they faced the challenge to renew by replacing the dead with the living.
Many of the murals are irretrievably lost. However, modern restoration work has managed to recover some of them. Perhaps this conservation work can serve as inspiration to recover an older model of death, dying and grief.
Acknowledging the work of the dead
Constable, bishop, squire and clerk from the Danse Macabre of the Abbey Church of La Chaise-Dieu, France.
In the modern era entire industries have emerged to whisk the dead from view and alter them to look more like the living. Once buried or cremated, the dead play a much smaller role in our social lives.
Could bringing the dead back into a central role in the community offer a healthier perspective on death for contemporary Western cultures?
That process might begin with acknowledging the dead as an ongoing part of our image of community, which is built on the work of the dead who have come before us.
[W]ith terminal illness comes newfound, and profound, wisdom, researchers report.
They uncovered this silver lining of terminal illness as people in their final months tried to strike a balance between accepting their fate and making the most of the time they had left.
“The end of life presents a unique perspective,” explained senior study author Dr. Dilip Jeste, senior associate dean at the University of California, San Diego’s Center of Healthy Aging.
“This is an extremely challenging time, a confluence of learning to accept what’s happening while still striving to grow and change and live one’s remaining life as best one can,” Jeste said in a university news release. “It’s this paradox that, if embraced, can lead to even greater wisdom while confronting one’s own mortality.”
The study, funded in part by the U.S. National Institutes of Health and the American Cancer Society, involved 21 men and women between the ages of 58 and 97 who were in the final six months of their lives and receiving hospice care. About half of the patients were dying of cancer.
The researchers asked these people opened-ended questions about wisdom, such as “How do you define wisdom?” and “What experiences have influenced your level of wisdom?” The patients were also asked if their illness had altered their understanding of wisdom. Each of the interviews was recorded, enabling the researchers to analyze and interpret the responses.
The participants ranked traits associated with wisdom. The most important quality listed was having prosocial behaviors, followed by demonstrating social decision-making, emotional regulation, openness to new experiences, awareness of uncertainty, spirituality and self-reflection, as well as having a sense of humor and being tolerant.
The patients admitted that facing their own mortality and imminent death dramatically changed how they viewed wisdom. “My perspective, my outlook on life, my outlook on everything has changed,” said one of the patients. “It’s grown tremendously.”
One common experience among the terminally ill was their desire to find peace or acceptance as their health declined and they lost their ability to function normally.
According to study first author Lori Montross-Thomas, “It wasn’t passive ‘giving up,’ but rather an active coping process. They emphasized how much they appreciated life, taking time to reflect. There was a keen sense of fully enjoying the time they had left and, in doing so, finding the beauty in everyday life.”
Montross-Thomas is assistant adjunct professor in UCSD’s department of family medicine and public health.
One study participant said: “For all my life, being a Southerner and having been in beauty contests, I got up in the morning, put my full makeup on and did my hair every day. A lady was never in her nightgown unless she was giving birth! Now all that is very, very difficult for me… I’ve accepted it, and I’ve realized that I have to let it go… I try to take all this with as much graciousness as possible and I’ve realized that my friends really don’t care that I don’t have makeup on or I’m in my nightgown. They are just happy to see me out of bed sitting on a chair.”
The patients also found that living with a fatal disease stimulated growth, leading to more determination, gratitude and optimism. The researchers noted this path to increased wisdom ebbed and flowed as the patients struggled to find balance, peace and happiness at the end of their lives.
Many patients focused on looking for the positive instead of the negative. “I want them to remember me with a smile, laughing and giggling and doing some of the silly things we do,” one person said. “Why do you want to leave on a sad note? I do not want to be remembered being sad.”
[R]esearchers at Stanford University are using A.I. technology to improve the quality of end-of-life care for patients who may have been diagnosed as terminally ill and have been given a prognosis of having only a certain period of time to live. Essentially, the research is using deep learning to more accurately predict when a person with a terminally ill disease is going to die. As the research states, physicians can over estimate the amount of time a patient may have, which can lead to issues with the end-of-life care and the wishes of the patient. More than just using deep learning technology the researchers are also gathering information from Electronic Health Record data to help narrow down a more precise time frame for death to give a better prognosis.
The reason for this research is tied to information showing that 80 percent of patients in the U.S. who have been given a prognosis of dying soon would want to spend the time they have left at home, which would require palliative care. The research study also points out that only around 20 percent of those who wish to receive palliative care actually get it, and that a big part of that can be due to physicians overlooking certain details that could lead to allowing such care within the home as opposed to the hospital.
The research was said to be conducted with the gathered data coming from two million patient records and that using that data has allowed the researchers to create a model that is about 90 percent accurate in predicting when a patient is going to die. Reaching a mortality prediction apparently starts by ignoring the disease type, the stage of the disease, and the severity of the admission, which the deep learning model then analyzes to ultimately come to the prediction. According to the researchers at Stanford who were part of this project, some pretty powerful computing hardware was needed as the model tests were run using a computer that was outfitted with an NVIDIA TitanX GPU along with 12GB of RAM and CUDA version 8.0. While there is still more work to be done in likely getting to the accuracy rate that the researchers are hoping to achieve, this seems to be a good start in perhaps making it possible for more end-of-life patients to receive palliative care.
It seems so obvious that no one should die alone that we never talk about it, but people do often die when they are alone. Sometimes they die in a way that suggests they prefer to be alone as they are coming to the end of their lives. So is it really such a bad thing to be alone when you die?
When a person is dying in a hospital or a care home it is common for the nurses caring for them to summon their family. Many people will have the experience of trying to keep vigil beside a family member. It is hard – as everyday life goes on regardless – and it can be emotionally exhausting. Sometimes, the relative will die when their family have gone to make a phone call or get a cup of tea, leaving the family feeling distressed and guilty for not being there when they died.
There is plenty of research literature, from many countries, devoted to trying to decide what makes a good death. There are differences to be found between countries, but similarities too. One similarity is a belief that no one should die alone.
Rod Taylor was said to have had a good death.
This idea sits well with the view of dying that can be found in many different places. When interviewed as research participants, health professionals – and nurses in particular – commonly say that no one should die alone. There are also many cultural references that suggest that to die alone is a bad thing. Consider, for example, the death of Ebenezer Scrooge in Dickens’s A Christmas Carol, or the death of Nemo, the law writer in Bleak House. These are both sad, dark, lonely deaths of a kind to be avoided.
Celebrity deaths, such as those of comedian and actress Victoria Wood or David Bowie, are described in the news as peaceful or good when they are surrounded by family. Ordinary people who die alone make the news when the person’s body is undiscovered for a long time. When this happens the death is likely to be described in negative terms, such as shocking, lonely, tragic or as a sad indictment of society.
Some people prefer to be alone
Of course, it may be the case that many people would prefer to have their family around them when they are dying. But there is evidence that suggests that some people would prefer to be alone as they are coming to the end of their lives.
My own research found that while hospice-at-home nurses believe that no one should die alone, they had seen cases where a person died after their family members had left the bedside. The nurses believed that some people just want to be on their own when they are dying. They also thought that people may have a measure of control over when they die, and choose to do so when their family are not around.
In the same study, I also talked to older people who were living alone to find out their views about dying alone. I was intrigued to learn that dying alone was not seen as something that is automatically bad, and for some of the older people it was to be preferred. For some people in this group, dying was not the worst thing that could happen – being trapped in a care home was considered to be far worse than dying alone.
Cultural representations of dying suggest that being alone while dying is a dreadful thing. This view is supported by healthcare policy and the practices of health professionals, such as nurses. But we all know people who prefer to be left alone when they are ill. Is it so surprising then that some might wish to be alone when they are dying?
It is time we began to talk about this and to accept that we want different things in our dying as we do in our living. Openness created through discussion might also help to remove some of the guilt that family members feel when they miss the moment of their relative’s death.
[C]an you teach an algorithm to know when you are most likely to die? One Stanford University research team is answering yes, reporting in a new paper that they have taught an algorithm to predict patient mortality with startlingly high accuracy.
Having an algorithm know your expiration date can sound like a dystopian concept, but the Stanford researchers said that they created the algorithm to benefit patients and doctors by improving the end-of-life care for ill patients. The researchers cited past studies that found the overwhelming majority of Americans would prefer to spend their last days at home if possible, but only 20% get that wish realized. Instead of getting to spend their final days at home, up to 60% of patients spend their last days in the hospital receiving aggressive medical treatments.
By creating a deep learning algorithm to predict patient mortality, doctors can better inform patients about their end-of-life options before it is too late, allowing more patients to get their spiritual and cultural final wishes met, the paper argues.
Research: There’s an algorithm that can predict patient mortality for critically ill patients
To train itself and make its predictions, the algorithm was given the electronic health records of about 2 million patients from two hospitals between 1995 and 2014. From there, the researchers identified around 200,000 patients suitable to be studied, and selected a smaller group of 40,000 patient case studies to be analyzed. The algorithm was then given the following marching order: “Given a patient and a date, predict the mortality of that patient within 12 months from that date.”
The results were highly accurate. Nine out of 10 patients died within the 3-12 month window the algorithm predicted they would die in.
Relax, doctors won’t be losing their jobs to machines
But the algorithm is not going to be replacing doctors anytime soon. The algorithm could only predict when selected patients were going to die, but not why or how. “The scale of data available allowed us to build an all-cause mortality prediction model, instead of being disease or demographic specific,” Anand Avati, a PhD candidate at Stanford’s AI Lab and one of the author’s of the paper, said.
For palliative care physicians, the algorithm’s focus on the timeline is still useful since their work focuses beyond the initial patient diagnosis and why someone is sick. If patients are told about their mortality after the three-month window, it’s too late to start proper end-of-life care, while being told more than a year out is too early to prepare for palliative care.
But more and more professionals need to learn to work with AI
The researchers said that doctors are still needed to fairly interpret the algorithm’s probability scores for both ethical and medical reasons. “We think that keeping a doctor in the loop and thinking of this as ‘machine learning plus the doctor’ is the way to go as opposed to blindly doing medical interventions based on algorithms,” Kenneth Jung, one of the author’s of the paper, said.
Commenting on the AI-based system’s power, physician Siddhartha Mukherjee said, “Like a child who learns to ride a bicycle by trial and error and, asked to articulate the rules that enable bicycle riding, simply shrugs her shoulders and sails away, the algorithm looks vacantly at us when we ask, ‘Why?’ It is, like death, another black box.”
[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.
