Once a month, in countries from Afghanistan to Zimbabwe, people are gathering to eat cake and talk about the typically taboo topic of death.
At Death Cafes, said Emma Freud in The Times, people with a range of interests in the subject come together to discuss “the end of life experience in any of its forms”, in what is widely viewed as part of the “death positive” movement.
The background
Death Cafes were founded by Jon Underwood and his mother, Sue Barsky Reid, a psychotherapist. They were inspired by the work of Swiss sociologist Bernard Crettaz, who had developed a project called Café Mortel, where people would gather to talk about death.
The first Death Cafe in the UK was held at Underwood’s home in Hackney, east London, in September 2011. It was a “wonderful occasion”, said the Death Cafe website, and more were then held in places including “funky cafes, people’s houses, cemeteries, a yurt and the Royal Festival Hall”.
The four rules are that Death Cafes are offered on a not-for-profit basis; in an accessible, respectful and confidential space; with no intention of leading people to any conclusion, product or course of action; and that cake is offered. The gatherings are a “discussion group rather than a grief support or counselling session”, said the website.
Death Cafes spread nationally and internationally, with the first overseas version held in Columbus, Ohio, in 2012. There have now been more than 18,000 groups worldwide, but “they seem to be most prevalent in countries where people are uptight about the subject” and “hence we have more than 3,400 in the UK”, said Freud.
Underwood died suddenly in June 2017, at the age of 44, and Death Cafe is now run by his mother and his sister, Jools Barsky.
The latest
Visiting a Death Cafe in London, Freud found “there were no formal objectives” or “grief counselling”, but there was “tea and, naturally, cake – that great lubricant of awkwardness”. The discussion was “riveting” and free of “small talk”. A woman with terminal cancer spoke and “because we were strangers, her words had no consequences she would need to deal with, and that seemed to set her free”.
After joining a Death Cafe in Willesden, northwest London, Gaby Wine wrote in The Jewish Chronicle that it was “heart-warming” that “while not everyone agrees with one another, everyone shows great respect”. Despite the subject matter, she had a “surprisingly jolly chat”.
Attendees will “seamlessly switch” between “sombrely discussing subjects like the difference between suicide and medical aid-in-dying” to “joking about the sayings they’d want written on their tombstones”, said The Huntington News.
The gatherings are seen as a sign of the rise of the “death positive” movement, which “seeks to normalize the recognition and embrace of the ultimate elephant in the room”, said Steffie Nelson on TruthDig. The term “death positive” originated with Los Angeles undertaker Caitlin Doughty, who in 2011 founded The Order of the Good Death, advocating for funeral industry reform and more openness around death and dying.
The reaction
A newcomer to her area, Freud “learnt more about the soul of my neighbourhood in those two hours than I had in the previous two months”. There was “joy” in the “deep connection with a hall full of strangers”, the “licence to show vulnerability without judgment” and “the privilege of being granted access to the most tender and unprotected place in the hearts of my neighbours”.
During the Victorian era people hired professional mourners to “weep” at burial sites and funerals and help attendees “feel safe enough to do the same”, said Anna Wolfe on Huck. And “in a way” Death Cafes provide “something similar”.
Meanwhile, if you want to find or even host one, check the organisation’s website. It’s easy to set one up, wrote Wolfe. “All you need is a set of Death Cafe guidelines, a venue and the ability to bake or buy a pack of Mr Kipling’s.”
Studies show that when cancer returns, patients are often quite willing to receive toxic treatments that offer minimal potential benefit.
By by Mikkael A. Sekeres, MD
My patient was in his early 30s and his leukemia had returned again following yet another round of treatment.
He was a poster child for the recently reported rise in cancer rates in the young, and had just asked me what chemotherapy cocktail I could devise for him next, to try to rid him of his cancer.
I hesitated before answering. Oncologists are notorious for always being willing to recommend to our patients one more course of treatment, even when the chances of success are negligible.
One grim joke even poses the question, “Why are coffins nailed shut?” The answer: “To keep oncologists from giving another round of chemotherapy.”
This unflattering stereotype is unfortunately backed by data. In one analysis of patients with a cancer diagnosis treated at one of 280 cancer clinics in the United States between 2011 and 2020, 39 percent received cancer therapy within 30 days of death, and 17 percent within two weeks of dying, with no decrease in those rates from 2015 to 2019.
My patient had received his leukemia diagnosis five years earlier, and initially, following chemotherapy, his cancer had entered a remission. He and his parents were farmers from Latin America and relocated at the time to the United States to focus on his treatment. When the leukemia returned after a year, he underwent a bone-marrow transplant, and that seemed to do the trick, at least for a while.
But then it reared its ugly head a couple of years later, and we worked to slay it with yet more chemotherapy and another transplant.
That victory was short-lived, though, and multiple rounds of unsuccessful treatment later, here we were. The last course had decimated his blood counts, landing him in the hospital with an infection, a bad one that he had barely survived.
Does it help patients live longer or better?
Giving chemotherapy toward the end of life would be justifiable if we benefited our patients by enabling them to live longer, or live better. While that’s our hope, it often isn’t the case.
Recognizing this, the Centers for Medicare & Medicaid Services has identified giving chemotherapy within two weeks of death as a poor-quality indicator that may adversely affect payments to hospitals. As a consequence, cancer doctors are discouraged from offering treatment to patients at the end of life, and can get in trouble with hospital administrators for doing so.
Despite the CMS measure, though, over the past three years the percentage of patients treated at the end of life hasn’t changed much, with one recent study actually showing an increase in patients treated.
Why do we do it? Perhaps optimism is part of our nature, and what draws us to a career in oncology. I focus on the positive, and that may actually help my patients. Other studies have shown that optimism in people with cancer is associated with better quality of life, and even longer survival.
And perhaps the data on giving chemotherapy close to a person’s last days on Earth, and the CMS quality metric, are unfair, and insensitive to the realities of how doctors and patients make decisions.
I stared back into the eyes of my young patient and then into those of his father, who was about my age. He looked kindly, with a thick, bushy white mustache, a red tattersall shirt, and work jeans. This man adored his son, accompanying him to every appointment, and always warmly clasped my right hand with both of his in thanks for our medical care — a gesture I felt unworthy to receive, given my inability to eradicate his son’s leukemia.
If our roles were reversed, how would I react if my son’s cancer doctor told me that the option for more chemotherapy was off the table, as CMS recommends, given the less than 10 percent chance that it would work, and the much higher likelihood that it could harm?
Wouldn’t I demand that the doctor pursue any and all means necessary to save my son’s life? Patients often do, and studies have shown that patients with cancer that has returned are quite willing to receive toxic cancer treatments that promise minimal potential benefit.
We discussed giving another round of chemotherapy, though I told my patient and his family that I was reluctant to administer it given the vanishingly slim chance that it would help. We also talked about my patient enrolling in a clinical trial of an experimental drug. And finally, we talked about palliative care and hospice, my preferred path forward.
“You’ve given us a lot to think about,” my patient told me as he and his family got up to leave, even smiling a bit at the understatement. His father came over to me and clasped my hand warmly, as usual.
But a couple of days later, despite how well he looked in clinic, my patient developed an infection that landed him in the intensive care unit. If I had given him chemotherapy, we would have blamed the treatment for the hospitalization.
But the cause actually lay with his underlying cancer, which had compromised his immune system, making him more vulnerable to infections. This time, my patient became sick enough that he decided enough was enough, and he accepted palliative care.
For many of my patients at the end of life who doggedly pursue that “one more round” of chemotherapy, a hospitalization becomes the sentinel event convincing them that the side effects of treatment just aren’t worth it anymore. It’s then no wonder people die so soon after their final treatment and time in the hospital.
It isn’t justifiable to give people with cancer chemotherapy when it is futile, just to be able to say “we tried something.” That’s what the CMS quality metric is trying to prevent. But in doing so, it shouldn’t interfere with a patient’s opportunity to come to that decision themselves.
There is little about Alua Arthur that emanates the deathly or morbid. The 45-year-old Los Angeles resident has a radiant, gap-toothed smile, a propensity for citrus-colored nail polish and an inclination to laugh before she finishes a sentence.
But not long ago, she was a Legal Aid worker struggling with depression, frequently taking breaks to travel around the world, attend music festivals, visit friends and enjoy short-lived romances with fellow searchers. While backpacking in Cuba, she boarded a bus and sat next to a woman around her age who revealed that she had been diagnosed with uterine cancer. What followed was an hours-long conversation that sent her world off its axis.
“It was strangely intimate and comfortable and hilarious,” Arthur said. “There was such an ease in our new friendship that allowed us to travel to the depths together, and discuss our fears and hopes.” Not long after she came home, her brother-in-law was dying of cancer, and she threw herself into caring for him, her sister and her then four-year-old niece.
Within a few months, she followed her gut and enrolled in a training program to become a death doula, an end-of-life care worker who helps people tie up their affairs and feel more at ease as they face the inevitable. The job can involve providing company, talking through clients’ feelings about estranged friends and family members, and helping them look back on their lives and identify the moments of which they are proud and also their regrets. It’s a calling that Arthur, who grew up in Colorado as the daughter of political refugees from Ghana, details in her rousing memoir, Briefly Perfectly Human.
A celebratory spirit pervades the book. The flip side of thinking about death all day, after all, is remembering how fleeting life is and relishing the mere act of living, as well as the people and natural beauty that surrounds us. Arthur, whose company, Going With Grace, has trained over 2,500 death professionals in 17 countries, spoke with the Guardian about her end-of-life work.
The death doula seems to be gaining popularity, on the heels of the birth doula. Do you sense that we will be hearing about death doulas more and more?
The death doula is very ancient, because as long as humans have been alive, they’ve been dying, and others have been supporting them into their dying. But the profession and the formality of it have been rising in the modern world. It’s similar to birth doulas in the concept and in the work that we do – we care for and celebrate one another. But there’s now a Fortune 500 company that has a death doula benefit as part of their benefits program, where employees get reimbursed to seek the services of a doula for somebody that they consider family. They can help be supportive for somebody’s dying and get reimbursed. Isn’t that pretty rad?
You talk a lot in your book about the difference between empathy and compassion. Can you walk me through that?
I’ve been really empathic all my life. I feel things very deeply. And I feel that I’m feeling things on behalf of other people, but also what I’m feeling for them are things that I’ve made up in my head about what the experience is like. And when I’m doing that when somebody is dying, it’s really dangerous because I don’t know what it’s like to be dying. I can imagine it all I want, but I don’t know what it’s like, and that can be really problematic. This may be a little rude, but I feel like empathic people, sometimes we’re pretty self-aggrandizing in some way. What we have to do when we’re working with people that are dying is practice lucid compassion, which says: I don’t know what it is that you’re experiencing, but I’m down. I’m here with you, and I’ll ride with you.
What does a typical week in your work life look like?
I’m not seeing clients currently – I’m way too busy. These days I’m focusing on spreading public awareness about how we die, hoping to help more people get support when they’re dying, and honestly help more death doulas get clients. But when I was seeing clients, I would have probably just one client whose death looks like it’s coming soon, and then multiple end-of-life-planning clients. And I’d also be doing death meditations, and hosting workshops and helping healthy people plan for the end of life, and helping somebody who has a serious illness.
So not all of your clients count as end-of-life patients?
Many clients are people that carry a lot of death anxiety. There was one client who I met with maybe for two years. His mom had died and his death anxiety was through the roof after she died. And so once a week for almost two years, he would sit and talk about where death anxiety popped up in his life that week, and we’d work through it. I’d offer tips and tricks and we’d do exercises. There was one young woman, she was 22 years old and her parents were in their 50s. But she just thought that it’d be wise to do end-of-life planning and I thought, oh, cool. Let’s do it.
There is a trend in our culture to fetishize the “birth story” but people back off from discussing death, let alone the “death story”.
We want to pretend that it’s not happening. And yet it’s happening every day, all around us. Not only in nature, but there’s probably somebody a few doors down from your home who knows somebody who’s in the process of dying. And we don’t have any skills to talk about our experience. We don’t make space for grief.
But I feel like it’s starting to shift. For example, this television series, Limitless, with Chris Hemsworth. In one of the episodes he explores the limits of his physical body. Even though the previous episodes were all about how he could live longer and better, a whole one is thinking about death.
Our world is lousy with biohackers trying to stave off death.
We can’t escape it. That’s kind of the point. People work so hard to create all these workarounds and try to deny it in some capacity. But by denying it, they’re making it more real. Like, why not just spend the time talking about your fears of death?
In your book you don’t hold back about your battle with depression. How does that inform your work?
Well, for starters, my life prior to death care was just kind of a hot mess. There was no direction, no purpose, but there was plenty of adventure. I was the lawyer working at Legal Aid and who was broke, saddled in debt. Prior to death care, I was always seeking something – you know, something that made me feel alive. I sought out big adventures, traveled to faraway places, ate different foods. I used to go to Burning Man but I haven’t been recently. I think that part of me has always been seeking peak experiences in life. That part of me lends itself really, really easily to death care because a big part of my relationship to death is grounding myself in this body of this life for now, and filling it up as much as I can.
What’s the number one question people ask you when they’re dying?
They always ask what the meaning of it all is. And I don’t know! I know that maybe the locs and the dark skin and the jewelry make people think that I’m talking to other beings all the time, that I’m mystical. But I don’t know anything.
Two of my friends recently lost their parents and I’ve been struggling with writing letters to them. Do you have any advice?
Sometimes the right thing to do is just to show up and say, like, “This is really, really hard but I don’t know what to say, but just know that I care about you. Just know that I know this happened. I don’t know what you’re experiencing. And this is uncomfortable, but I want you to know that I’m here and I care about you.” And then you’ll probably get a thank-you, and if they want to talk about the person they lost, they will, and if they want to talk about the Kardashians, they will.
How does your current work influence the way you live now?
I think I give myself a lot more grace for the mistakes I make and my sadness and my fear and my doubt, and the extra pounds that I’m carrying. I give myself a lot more freedom to enjoy food. Whereas before, I was so concerned with being skinny and exercising, and now I’m like, fuck it, like I’m so grateful for this body that carries me around Earth. Plus, I love chocolate cake.
As we age, health care and quality of life become more important. Making an advance care plan enables patients to consider their health care options, provides directions for caregivers and gives patients as much control as possible during end-of-life.
National Healthcare Decisions Day on April 16th, which seeks to inspire, educate and empower the public and providers on the importance of health planning, is a prime opportunity to consider enrolling in an advance care plan.
Identifying the right caregiving plans may seem daunting at first, but it’s important that patients solidify an advance care plan for the security and peace of mind of themselves and their loved ones.
Here are three ways why choosing an advance care plan through the VNA can empower patients to ensure the best care possible during their health care journey:
1. Build a system of support for all patient health needs.
Advance care planning is essential for anyone, but especially for those experiencing a difficult diagnosis and for those who find it difficult to talk about their end-of-life needs. However, advance care planning may often feel confusing to many people who are unsure where to start.
Luckily, the VNA provides the education and support needed to understand everything they need to know throughout the entire planning process. A nurse practitioner and licensed clinical social worker meet with patients at their homes to evaluate their health needs and assist in educating patients and loved ones on available services and options that may be available to them. Patients can rest assured that the VNA’s Advance Care Planning team provides a planning experience that is as seamless and easy to understand.
2. Maintain freedom when choosing a personalized advance care plan.
When it comes to planning for the final stages of life, it’s important that patients have control and feel confident their wishes will be honored. Advance care planning offers freedom of choice and active participation in optimizing a patient’s care routine. Health planning is also essential for any patient dealing with a disease or injury to understand the full scope of their healthcare goals and make proactive decisions ahead of hospice or end-of-life care. The VNA also offers an Individualized Advance Care Plan, which is free to download online and helps patients personalize their care plan or initiate conversations with physicians and family members.
3. Secure the future for patients and loved ones.
Advance care planning allows patients to plan proactively and feel more secure in their health care options. The Advance Care Planning team discusses care goals with patients and ensures that everyone understands every available option during end-of-life or hospice care. In addition to identifying their goals, the team helps plan advance directives for patients, which outline the type of care a patient expects to receive if they are unable to speak.
Additionally, the VNA’s Five Wishes® platform, a user-friendly legal document template written in everyday language, helps patients officially plan, document and communicate how they hope to be cared for in the event of serious or terminal illness. This critical step allows family and caregivers to understand exactly what the patient wants. It also helps patients feel secure in expressing their desires for medical and legal matters, along with personal and spiritual concerns. The platform also ensures patients meet legal requirements for an advance directive in 42 states.
Empowering patients should always be a priority during advance care planning. Understanding the process and how it can help patients and caregivers make the best decisions in the last stages of a patient’s life can help them transition with dignity in a comfortable and supportive environment that benefits everyone.
— Doctors including Zachary Tait and Rupal Shah, and recently bereaved readers Jo Fisher and Rebecca Howling, respond to Adrian Chiles’s column on how his father spent two of the last days of his life alone and distressed in A&E, for no good reason
‘As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors.’
My condolences to Adrian Chiles on the death of his father. His column describing the futility of his father’s last “precautionary” trip to A&E (3 April) highlights a rising challenge of the ageing population. As health and social care services collapse, the harms and indignities of hospital admission increase, especially for those least able to advocate for themselves. As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors, receiving substandard treatment that they didn’t want and were unlikely to benefit from. This is now the norm in every hospital I’ve been to.
A 2014 study showed that more than a quarter of hospital inpatients die within a year. The risk, perhaps unsurprisingly, increases with age. It is our responsibility as clinicians to have difficult and frank conversations with patients ahead of time; to be pragmatic, realistic and kind in our decision-making. Unfortunately, lots of this comes under “planning for the future”, which tends to slip down the to-do list during a crisis. It is the single most rewarding part of my work to have the time and opportunity to make care plans with patients, to know what matters most to them, and to stop the “shrugs” that Chiles faced at every turn. But medicine-by-protocol is quicker and cheaper than thought and pragmatism, so as resources are stretched ever further, it may continue to flourish. I am so sad for Peter Chiles’s distress, and so grateful that his son uses his voice to call attention to it. Zachary Tait Manchester
I have been a GP partner in Battersea, London, for 20 years. Unfortunately, Adrian Chiles’s opinion piece absolutely resonates. As clinicians, we are now taught to prioritise “safety” over all other considerations – despite the dangers inherent in doing so. Really, we are often protecting ourselves more than we are protecting our patients – an inadvertent side-effect of our unforgiving regulatory system.
We doctors are behaving as “artificial persons” who represent the healthcare system, and not as moral agents who have a duty to create meaning with our patients. We urgently need to move into a moral era of medicine – one that rejects both the protectionism of the past and the reductionism of the current context, which so often results in the cruelties and inefficiencies that Chiles describes. Rupal Shah Co-author, Fighting for the Soul of General Practice – The Algorithm Will See You Now
Adrian Chiles’s article stirred my thinking, as I have been on a similar journey. My husband died two weeks ago, having been advised that he had three months to live. This proved to be the case. With the Hospice at Home service, the NHS was truly wonderful. He died, however, with morphine slowly killing him. This could have been prevented if an assisted dying law was in place. One of the nurses said that what we were doing was cruel.
We were able to resist a possible hospital admission for chest pains by having what is called a ReSPECT document signed by our GP for “do not resuscitate”, and because we had an advance directive, dated 2022, that had been placed with the GP and was on his medical records. This made the whole process so much easier for us, but also for the various wonderful medics. Parliament needs to update our laws to align with so many in this country who wish for greater clarity and support Dignity in Dying. Jo Fisher Brampton, Cambridgeshire
In response to Adrian Chiles’s article, and having recently lost my own father, the best advice I can offer anyone is to make sure you have power of attorney in place for your parents. That is the way you can ensure that you have the power to override the decisions of medical staff who, while acting with the best intentions, will not know your parents as well as you do and may not make the decision that is best for them, or what they would have wanted. Having a power of attorney in place is more important than a will, in my view, because it enables you to help your living parent and ensure that their wishes are complied with. In my father’s final days, I was asked numerous times: “Do you have power of attorney?” I was very relieved to be able to answer: “Yes.” Rebecca Howling Toft, Cambridgeshire
As the daughter of an elderly parent, I very much understand the need for A&E avoidance, to cause least distress. No doubt waiting haplessly alone for many hours hastens demise. However, as a GP, I know that the huge increase in litigation over the last 20 years is a very real threat to doctors’ livelihoods. Even a simple complaint from a patient or their family can cause weeks, months, sometimes years, of stress to a health professional. Ruminating over every decision, every action or inaction, every justification, is enough to give us a heart attack – or worse, to make us follow in the footsteps of Paul Sinha and Adam Kay and quit the profession for a more peaceful existence. Name and address supplied
Dear Adrian, I am so sorry that this happened to your dad. Sadly, it is a story repeated again and again. I am what is termed a “late career” doctor (over 55), and I recently transitioned from working as an emergency consultant to become a GP working in aged care. Over my 30-year career, mainly in emergency and other hospital specialities, although including a significant period in palliative care, I slowly came to appreciate that the way we have set up our emergency system doesn’t serve older people at all, and the frailest elderly are generally so poorly served that transferring them almost inevitably makes things worse.
My residents (200 across five aged care facilities) all have discussion and documentation of whether they should go to hospital and under what circumstances. The staff know to call me if there is any uncertainty, day or night. I do lots of family meetings so relatives can feel confident that the right decisions will be made. I love looking after old people and ensuring they get the best care that is right for their individual circumstances.
I firmly believe that aged care in particular is a GP subspecialty of its own. Too often care is fitted into lunch breaks and “on the way home” visits, and devolved to phone services out of hours. This is no way to treat our oldest and frailest, who deserve so much better. Again, I am so sorry. Fiona Wallace Sheffield, Tasmania, Australia
I read Adrian Chiles’s article about his father’s experience with empathy. My own father led a district health authority, with many hospitals under his care. He was intensely proud of the NHS, but in his 90s he was very clear that he didn’t wish to die in hospital or even to be admitted again unless absolutely essential. If he had an infection, he would be treated at home. Should it worsen and Dad die, it would be in his own bed. As a family, we listened. I was caring for him and know it took a huge weight off Dad’s mind to know that he need not dread the ambulance or the bewilderment of a strange place. Too many elderly people die in the back of ambulances and in A&E. Let those who are able to do so make informed choices about their end of life. It is a great comfort to them. Dr Jane Lovell Ashford, Kent
Adrian Chiles is correct that decisions about sending frail and elderly patients to hospital can be due to doctors being risk-averse. Doctors face a double jeopardy from the General Medical Council, who can take their livelihood, and the legal system if things go wrong.
Not all families can accept when beloved elderly relatives have reached the end of their life. Some people have unrealistic expectations about what healthcare can achieve in frail patients, and push for investigations and treatments even when it seems unlikely to affect the final outcome. If these are not performed, doctors can be accused of negligence or ageism. Most doctors would like less invasive healthcare at the end of life for themselves and their own families than they routinely offer to patients.
I would encourage everyone to write an advance directive or “living will” outlining how they would like to be treated in the event of their health deteriorating. I would also suggest giving a trusted person power of attorney for healthcare. These can be very helpful in reducing incidents like the one described in the article. Dr Stephen Docherty Consultant radiologist, Dundee
I would like to express my condolences to Adrian Chiles on the death of his father. I can empathise with him on many levels. I too lost my father recently in not dissimilar circumstances. I am a practising GP, a former medical director of an out-of-hours GP service, and now spend most of time as a management consultant trying to influence change in the NHS to stop incidents like this happening.
When I talk to clinicians and managers, I am always humbled by their devotion despite the pressures they work under. In my current assignment, over 32% of clinicians feel they are burnt out, and many more express intense frustration with the low-value clinical work they undertake. There is a limit to how much the system and the individuals who prop it up can give. The demand for care is rising every year.
I suspect that the GP who decided to send Adrian’s father to A&E without seeing him was under pressure to make a number of decisions that night. Given more choice, I’m sure they would have prioritised cases such as Adrian’s father over lower-priority, often unnecessary cases. What we do not discuss as a society with as much fervour as the system and those who provide care is how we consume care, so we can create time and space to support those who really need necessary attention. Dr Riaz Jetha London
– Buddhism teaches us to be mindful but not fearful of it
‘It doesn’t take a deep understanding of Buddhism to acknowledge that sickness, old age, and death are inevitable facts of life.’
The art of developing a healthy relationship with our own mortality lies in neither avoiding the reality of suffering nor obsessing over it
By Nadine Levy
Over the last year, I have spent a lot of time eating pre-packaged sandwiches in hospital cafeterias. I often joke that those of us who are lucky enough to hit 35 will have at least one, if not multiple, serious health scares every year. At some point, however, we will face much more than a simple scare – serious illness can impact anyone, any time, with little notice.
As well as being a source of stress, pain and discomfort, unwanted health diagnoses have the radical potential to upend our lives and ignite burning questions relating to impermanence and human suffering which we may not have considered in the past. We may come face-to-face with our shared vulnerability for the first time – which was present all along – as well as the indisputable fact that we are all but one breath away from a health crisis or poor prognosis.
Working with our mortality in a meaningful way can be challenging. For one, we live in a death-averse culture in which comforting and life-affirming ways of thinking and talking about illness and death are rare. Further, the unprecedented nature of Covid-19, as well as an increase in self-diagnosis via the internet (“cyberchondria”), has been associated with an overall rise in health anxiety.
In the founding story of Buddhism, the historical Buddha, a sheltered 29-year-old prince, ventures out of his palace and for the first time encounters sickness, ageing, and death on the streets of what is now Nepal. These sights impact him in such a visceral and immediate way that he is compelled to relinquish his wealth and material comforts to enter a life of asceticism, contemplation, and reflection.
It doesn’t take a deep understanding of Buddhism to acknowledge that sickness, old age, and death are inevitable facts of life. Many of us know this intimately. However, we may not realise that the more we deny this truth and cling to a fantasy of perpetual health and youthfulness, the more we suffer.
This is not to dismiss our attempts at living a healthy lifestyle that prevents ill health. Indeed, moderation and cultivating physical and mental wellbeing are at the heart of Buddhist practice. Still, we face the cruel irony that even our best efforts to address risk factors through diet, exercise, and supplementation, often fall short. Mark Twain once said, “I take my only exercise acting as a pallbearer at the funerals of my friends who exercise regularly.”
On my first overseas trip as a child, I witnessed individuals with debilitating and treatable illnesses in plain sight. One afternoon, I went to a cafe for lunch and couldn’t swallow my sandwich. As hard as I tried, I could not force the muscles in my throat to perform their job. There was a lump in my throat that persisted. The sharp edges of the human condition had suddenly shifted from theory to reality.
I encountered Buddhism a few years later and I was relieved to find an approach that did not look away from what was true: the body deteriorates, decays, and changes. It is made up of the elements and is of the nature to sicken, age, and die. While death is certain, the time of death is uncertain. Do not turn away from your mortality.
Later, I downloaded an app that reminded me daily I was going to die, though I’m not sure I needed the reminder.
Was this a type of exposure therapy that would liberate me from my worst fears, or was it simply making my anxiety worse?
Years later, I confided in a Buddhist teacher about my ongoing health anxiety, and he said something that changed the way I now view the Buddhist practice of death contemplation: the art is not to be anxiously fixated on death but simply mindful of it. The invitation was to extend a gentle and curious gaze to our fear of death itself. This seems a subtle point, but one that has enormous significance.
First, it invites us to bring awareness to how we relate to and perceive our impermanence. What is it that scares us exactly? The psychotherapist, Irvin Yalom talks about death and health anxiety being a placeholder for a range of natural existential concerns – from fear of pain, loss, and separation from loved ones to terror of our ultimate annihilation. At times, it correlates with deep disappointment that our life has lacked meaning or purpose.
Once we become familiar with what “health” or “death” represent in our unique psyche, we can bring attention to when and how these fears present themselves. Do particular sensations, memories, or emotions trigger these fears? Are they felt predominantly in the body or in a mind that races and tries to fix and control? Do you find yourself reaching for your phone? Instead, can you remain in the here and now, with a racing heart, lump in your throat, images of a poor prognosis, or your final breath? Can you stay put and allow the fears to arise, change, and dissipate? The practice is to avoid the extremes of obsessing about the finitude of our life on the one hand and avoiding our mortality on the other. Acceptance and wisdom lie in the place in between.
You and I will die. Can we stay steady in our seat knowing this with certainty, while remaining open to a broader indescribable mystery which may well outperform our wildest expectations?
— Toronto ‘death cafés’ offers a new way to get comfortable with that fact
Death-care practices vary according to culture and religion and many death doulas argue that in western cultures there’s still a lingering taboo around frank talk about death, something that makes it harder for many to deal with death, dying and grieving.
“We’ve heard the saying that it takes a village to raise a child. That village is equally important at the end of our life as it is in the beginning.”
After more than a decade living side by side on a quiet street in Toronto’s east end, Fiona* and her partner Lorraine* had become close friends with their neighbour Tony.
“Lorraine and Tony talked all the time,” said Fiona. “When he started getting older and lived on his own, she helped him with errands and grocery runs. I mowed his lawn.”
When Tony was diagnosed with inoperable cancer in 2018, Fiona started cooking for him and filling in when support workers and nurses weren’t on duty.
When it came to preparing to die, though, the couple decided Tony needed more help than they could offer.
They enlisted the help of a death doula: someone who is trained to help with emotional and physical support as well as education about the end-of-life process.
In the last couple of days of Tony’s life, Fiona slept on the couch next to his bed. The doula and Lorraine sat with him until he died.
What struck Fiona as most remarkable, she said, was the “ceremony of it all.” Lorraine and the doula washed Tony’s body and sat with him for hours after he passed.
“I think, in a lot of western cultures, people don’t want to hang out with a person’s body after they’ve gone,” she said. “This felt like helping him to move on and there was a level of comfort in it that helped all of us.”
Death-care practices vary according to culture and religion, and many doulas argue that in western cultures there’s a lingering taboo around frank talk about death, something that makes it harder for many to deal with death, dying and grieving.
That started to change 20 years ago with the first “death café,” an initiative launched by a recently widowed Swiss sociologist named Bernard Crettaz. The concept — usually a scheduled group discussion about death among people from all walks of life (not to be mistaken for grief counselling) — has since spread and evolved.
“Now there are ‘death salons,’ ‘death dialogues’ and ‘death book clubs,’” said Kayla Moryoussef, who works with Toronto’s Home Hospice Association and has her own practice, the Good Death Doula. “There’s even a ‘death over drafts’ thing where people meet in bars to drink and talk about dying and death.”
Probably the biggest change to the death café model in Toronto has been that, pre-pandemic, the Home Hospice Association’s death cafés were held in bricks and mortar spaces. When the pandemic forced the cafés online and they no longer had to worry about venues and attendance, it allowed the association to offer more niche programming, such as cafés for parents, pet lovers caregivers and “spoonies” (people experiencing chronic pain).
“I came up with the idea for a spoonies death café because, as a person with chronic illness and disability, I know my relationship with dying and death is fundamentally different than my peers, — especially peers my age,” said Moryoussef, who is now in her late 30s.
The mission at the Home Hospice Association is to offer distinct programming for different communities in the name of accessibility and equitability.
“The reason we even got into this death doula training, development and mobilization was because we could see that our health-care system was not going to be able to keep up,” said Tracey Robertson, a doula and co-founder of Toronto’s Home Hospice Association.
Even if our health-care system could bounce back from its current state, most medical training is about finding cures, and many doctors receive little or no training when it comes to talking about death.
“We’ve all heard the saying that it takes a village to raise a child — we always say that village is equally important at the end of our life as it is in the beginning — some may even say more important,” said Robertson.
Death cafés are part of the foundation for that vision, she explained, because you can only build that village after death is normalized and communities are more comfortable talking about it.
“All it requires is for all of us to just get a little bit more comfortable with the fact that we all are going to be there one day,” said Robertson. “How can we help our neighbour who is faced with the reality of sitting in a doctor’s office and hearing words none of us ever want to hear?”
