My father’s death was something I’d worried about for decades — probably since I learned that smoking kills. But years of pre-emptive angst didn’t prepare me for the crushing heartache that landed like a rock on my chest when he finally died from lung cancer at 82 last year.
I couldn’t have known how the deliberate way he chose to die would become part of his legacy. Or that Mom’s reticence would prevent me from sharing with the world that he had medical assistance in dying. I had hoped to honour my father with an obituary that inspired readers to live harder and love bigger. And, I wanted to package his life with all its complexities and idiosyncrasies into an honest tribute that — if you read between 20 column inches — revealed his authentic nature.
For example, I wrote he regaled us with tales that we never tired of hearing, that he was never one for small talk and that he was his most relaxed self when he travelled. I’ll decipher: Dad always prefaced his (albeit entertaining) stories with, “Stop me if you’ve heard this,” and then launched right in with nary a nanosecond pause for interjections; he did not suffer fools and, without a margarita in hand on a tropical beach, he could be pretty set in his ways.
The one thing I didn’t want to couch was how he died.
I’m reticent to use a hackneyed term like transformational but it’s the only one I have to describe what we experienced. Medical assistance in dying spared Dad many indignities and, for the family he left behind, knowing in advance the exact day and time of his death provided us with a chance to say everything we needed to say and send him off steeped in the love he deserved.
As I watched Dad take his last peaceful breath (not a euphemism, it really was), I was flooded with gratitude for living in a country where my father had the option to forgo a long, slow death. I wanted to share it with the world.
The federal government wants another pause in allowing medical assistance in dying (MAID) requests from those suffering solely from mental illnesses. CBC’s Christine Birak breaks down the division among doctors and what it means for patients who have waited years for a decision.
So, I asked Mom.
“Can I write that Dad had MAID in the obituary?”
“I’d rather you didn’t.”
I’m not usually one to demur. But this was my mother — just a day after her husband of 60 years had died. Plus, obituaries cost a bundle, and she was paying.
“OK, no problem,” I said and went on the hunt for a breadcrumb to drop in the obit. Dad’s death was neither “sudden” nor “unexpected” or “tragic,” leaving me unsure of what coded language to use for assisted dying.
In the end, I settled for the truth: Dad died surrounded by his family as the sun set.
Korbin’s parents, David and Judi, were married for 60 years.
For the next year, I regretted what felt like a lie of omission. Then, on the first anniversary of his death, Mom said to me, “It’s taken me a while, but now I see that your dad traded a few months of his life to give us a beautiful death.
She was right.
Dad had always been generous with material things, but his deliberate death was perhaps his greatest gift. Watching him make his difficult decision with grace and equanimity was the bravest thing I’ve experienced. We have always been a close family, but I don’t think any of us, even Dad, could have predicted the way sharing this rite of passage would bring us closer. Even a year after our patriarch’s death, I can feel a deeper intimacy between those of us he left behind.
Beautiful indeed.
I took my mom’s opening to probe further.
“Why didn’t you want me to put MAID in the obituary? Were you worried about the stigma?”
“Me? Stigma? Not at all,” she said, “I just didn’t think it was relevant.”
And then she added, “But I do now. So you go and tell the world about your father’s big, beautiful, assisted death.”
End-of-life decisions are some of the most intricate and feared resolutions, by both patients and healthcare practitioners. Although multiple sources indicate that people would rather die at home, in developed countries they often end their lives at hospitals, and many times, in acute care settings. A variety of reasons have been suggested to account for this gap, among them the under-utilization of hospice facilities, partially due to delayed referrals. Healthcare professionals do not always initiate conversations about end-of-life, perhaps concerned about causing distress, intervening with patients’ autonomy, or lacking the education and skills of how to discuss these matters.
We associate multiple fears with dying. In my practice as a physician, working in palliative care for years, I have encountered three main fears: fear of pain, fear of separation and fear of the unknown. Yet, living wills, or advanced directives, which could be considered as taking control of the process to some extent, are generally uncommon or insufficiently detailed, leaving family members with an incredibly difficult choice.
Apart from the considerable toll they face, research has demonstrated that next-of-kin or surrogate decision makers can be inaccurate in their prediction of the dying patient’s preferences, possibly as these decisions personally affect them and engage with their own belief systems, and their role as children or parents (the importance of the latter demonstrated in a study from Ann Arbor).
Can we possibly spare these decisions from family members or treating physicians by outsourcing them to computerized systems? And if we can, should we?
AI For End-Of-Life Decisions
Discussions about a “patient preference predictor” are not new, however, they have been recently gaining traction in the medical community (like these two excellent 2023 research papers from Switzerland and Germany), as rapidly evolving AI capabilities are shifting the debate from the hypothetical bioethical sphere into the concrete one. Nonetheless, this is still under development, and end-of-life AI algorithms have not been clinically adopted.
Last year, researchers from Munich and Cambridge published a proof-of-concept study showcasing a machine-learning model that advises on a range of medical moral dilemma: the Medical ETHics ADvisor, or METHAD. The authors stated that they chose a specific moral construct, or set of principles, on which they trained the algorithm. This is important to understand, and though admirable and necessary to have been clearly mentioned in their paper, it does not solve a basic problem with end-of-life “decision support systems”: which set of values should such algorithms be based on?
When training an algorithm, data scientists usually need a “ground truth” to base their algorithm on, often an objective unequivocal metric. Let us consider an algorithm that diagnoses skin cancer from an image of a lesion; the “correct” answer is either benign or malignant – in other words, defined variables we can train the algorithm on. However, with end-of-life decisions, such as do-not-attempt-resuscitation (as pointedly exemplified in the New England Journal of Medicine), what is the objective truth against which we train or measure the performance of the algorithm?
A possible answer to that would be to exclude moral judgement of any kind and simply attempt to predict the patient’s own wishes; a personalized algorithm. Easier said than done. Predictive algorithms need data to base their prediction on, and in medicine, AI models are often trained on a large comprehensive dataset with relevant fields of information. The problem is that we don’t know what is relevant. Presumably, apart from one’s medical record, paramedical data, such as demographics, socioeconomic status, religious affiliation or spiritual practice, could all be essential information to a patient’s end-of-life preferences. However, such detailed datasets are virtually non-existent. Nonetheless, recent developments of large language models (such as ChatGPT) are allowing us to examine data we were previously unable to process.
If using retrospective data is not good enough, could we train end-of-life algorithms hypothetically? Imagine we question thousands of people on imaginary scenarios. Could we trust that their answers represent their true wishes? It can be reasonably argued that none of us can predict how we might react in real-life situations, rendering this solution unreliable.
Other challenges exist as well. If we do decide to trust an end-of-life algorithm, what would be the minimal threshold of accuracy we would accept? Whichever the benchmark, we will have to openly present this to patients and physicians. It is difficult to imagine facing a family at such a trying moment and saying “your loved one is in critical condition, and a decision has to be made. An algorithm predicts that your mother/son/wife would have chosen to…, but bear in mind, the algorithm is only right in 87% of the time.” Does this really help, or does it create more difficulty, especially if the recommendation is against the family’s wishes, or is delivered to people who are not tech savvy and will struggle to grasp the concept of algorithm bias or inaccuracies.
This is even more pronounced when we consider the “black box” or non-explainable characteristic of many machine learning algorithms, leaving us unable to question the model and what it bases its recommendation on. Explainability, though discussed in the wider context of AI, is particularly relevant in ethical questions, where reasoning can help us become resigned.
Few of us are ever ready to make an end-of-life decision, though it is the only certain and predictable event at any given time. The more we own up to our decisions now, the less dependent we will be on AI to fill in the gap. Claiming our personal choice means we will never need a personalized algorithm.
The New Hampshire legislature is considering a bill to join our Maine and Vermont neighbors to allow New Hampshire residents with a terminal illness, in consultation with two medical providers, the option of ending their suffering and having a peaceful death. As a Licensed Independent Clinical Social Worker who has spent over four decades working to prevent suicide at the local, state, national and international level, I think it is time to look closely at the differences between the two, and stop referring to medical aid in dying as suicide.
Legally, in the 10 states and Washington D.C. where medical aid in dying is allowed, the death is not counted as a suicide death. Medical Examiners and Coroners list the underlying terminal illness, which the person was diagnosed with, as the cause of death on the death certificate of patients who utilize medical aid in dying.
People who die by suicide, for whatever reason, no longer wish to live and feel that they have no other option than death. The person who chooses medical aid in dying wants to live yet has been diagnosed with a terminal illness that will end their life, and may cause intense suffering before they die. They are fully informed of other options including palliative care, hospice, and comfort measures. This is not a decision they are allowed to take lightly or at the spur of the moment. It requires thoughtful controls and two medical opinions in support of specific terminal illness.
A high correlation exists between suicide and mental illness. The person who dies by suicide may or may not be rational, or even competent in that moment. Research shows that many suicide deaths are impulsive. Although the person may have contemplated suicide for some time, it may only be a matter of minutes between making the decision to die and then taking their life. By contrast, in medical aid in dying, people go through a formal process with two medical professionals that includes: an assessment of their mental capability, a determination about their terminal illness, an informed consent process including a review of available options, and a mandatory waiting period
People who die by suicide die alone, and often die by violent means. In New Hampshire, over 75% of suicides involve firearms or hanging. Nationally, over 75% of suicide deaths occur in a home or primary residence. These violent deaths result in trauma for their loved ones who return home to find their loved one dead. The scene, shock, and aftermath are so distressing that many people are no longer able to continue to live in their homes. Suicide deaths can also be traumatizing and contribute to PTSD in first responders who are called to the scene.
Family, friends, and loved ones of a person who dies by suicide can experience intense emotions including shock, guilt, anger, shame, regret, and despair as they try to come to terms with the suddenness of the death, and make sense of the often-unanswerable question: “why?” People who are bereaved by suicide may experience suicidal thoughts and are statistically at higher risk themselves for suicide. Suicide deaths are often devasting and life altering for family and friends resulting in a long and complicated grief process that may last years. It is said the person who dies by suicide dies a single death, but their family/friends are left to die a thousand deaths.
By contrast, the person who goes through the medical aid in dying process, frequently includes loved ones in their decision. Most die in their home, surrounded by their family and friends. The death is planned, and peaceful. Family and friends are left at peace knowing that this was their choice and their suffering is over. To be clear, this does not stop those close people from grieving the death, but it eliminates the “whys” and “what ifs” as well as the trauma from a sudden suicide.
Despite our best efforts, there is still considerable shame and stigma associated with, and experienced by family and friends after a suicide. We should be careful not to contribute to that stigma by extending it to medical aid in dying. Whether you support or are opposed to medical aid in dying, we should acknowledge there are significant differences between the two, and we should stop labeling medical aid in dying as suicide.
– A palliative care specialist’s practical guide to life’s end
Even people who are comfortable discussing death – including the inevitable prospect of their own – might understand little about how it actually tends to unfold unless they’ve experienced it firsthand alongside a loved one. In this brief animation, author Kathryn Mannix, who worked as a palliative care physician for 20 years, offers viewers a sensitive, honest and practical guide to how death tends to progress under normal, or perhaps ideal, circumstances. Pairing her narration with gentle, flowing animations, the UK filmmaker Emily Downe’s short makes a powerful case that there’s deep value in discussing and understanding death well before it touches us.
Pain is a chief concern frequently voiced among patients nearing the end of life, according to a 2020 study published in BMC Palliative Care. Depending on a person’s health status, some people may be more susceptible to pain during the dying process than others. Such may be the case if a person is dying of a particular illness or disease, such as cancer. Research has shown that 64% of advanced-cancer patients report being affected by pain. Health issues related to cognition, however, such as dementia, have been linked with lower rates of reported physical pain.
Pain experienced specifically within the months prior to one’s passing has also been the subject of scientific research. Findings of the 2020 study found that fewer than 1 in 5 people in Canada experience severe pain during their last month of life. Conversely, an alternate 2010 study published in Annals of Internal Medicine found that 60% of patients with arthritis experienced pain within the month before their passing. These findings further demonstrate the influence of health conditions on pain toward the end of life.
Unlike a wound or a scar, pain isn’t something we can see with our own eyes. Therefore, we must rely on other indicators that can help us determine whether a dying person may be experiencing physical discomfort and how we may help ease that pain.
Pay attention to a dying person’s body language
In some cases, a dying person may be able to vocalize that they’re experiencing pain. If not, take note of their body language. If the person grimaces, moans, stiffens, tightens their fists, or clenches their teeth — particularly if this occurs while you’re attempting to shift or reposition them — then these are indications the person may be in pain, according to experts at the Hospice Foundation of America. Additional non-verbal signs may include frowning, fidgeting, deep breathing, crying, sighing, or a facial expression that communicates fear, per Hospice Red River Valley.
In addition to (or instead of) physical pain, a person may also be in mental or emotional pain towards the end of their life. Such pain may present in the form of nightmares, nervous laughter, irritability, crying episodes, anger, boredom, anxiety, or more. For verbal patients, these kinds of emotions may be indirectly expressed with statements like “nobody cares” or other sentiments of doubt, cynicism, apathy, or distrust, amongst other feelings.
Pain relief methods for people who are dying
When tending to a dying person’s physical pain, setting up a system of communication can help caregivers better understand what means of pain management or treatment the person may be in need of. The more specific the terms, the better. Pain descriptors such as sharp, dull, throbbing, burning, constant, or shooting are effective examples, states Hospice Red River Valley. Verbal patients may wish to use these words themselves, or caregivers may offer these words as prompts for patients who communicate non-verbally. Using terms such as these that provide insight into the duration or severity of the pain can also help caregivers track pain progression or improvement.
End-of-life pain treatment methods often involve medication. Depending on the cause and severity of pain, patients may be given over-the-counter (OTC) medications such as acetaminophen or NSAIDs, or may alternatively be given opioid analgesics under careful monitoring by a medical professional, according to 2023 research published in StatPearls. Mental health counseling, spiritual counseling, or acupuncture may also prove helpful. Caregivers can also help prevent the development of pain during the end of life by regularly repositioning individuals who are bed-bound as well as maintaining proper patient dental care.
An early and pivotal scene in Greta Gerwig’s “Barbie” finds a rager underway at the Dreamhouse. Dressed in sequins and spangles, Margot Robbie leads the Barbies in a choreographed routine to Dua Lipa’s “Dance the Night.” After they throw their synchronized hands in the air, certain that tomorrow will be “the best day ever,” Robbie pauses, an ecstatic perma-grin on her face, and blurts out, “Do you guys ever think about dying?” Screeeech. The dancing stops; Barbie’s grin falls away. “I don’t know why I just said that,” she stammers. “I’m just dying…to dance!” Everyone cheers, the music resumes and all is right once again in Barbieland.
Minus the disco dancing, the scene is a fairly accurate depiction of how conversations around death tend to go in our society. But there are signs that this may be changing, thanks to a growing “death positive” movement that seeks to normalize the recognition and embrace of the ultimate elephant in the room. The movement’s advance can be measured by the growing popularity of Death Cafes such as the one I joined on a recent Thursday afternoon in the L.A. neighborhood of Los Feliz.
Around 20 of us had gathered for the monthly meeting inside a sanctuary hung with silk Buddha tapestries on the second floor of the Philosophical Research Society. Ranging in age from mid-20s to mid-70s, we knew little about each other beyond our common interest in talking about death and dying. As per Death Café tradition, tea, coffee and cake were served. First-timers quickly learned that the meetups were not grief or bereavement groups by another name.
It was during the pandemic that Lui began to explore how Western culture related — and failed to relate — to death.
“It is really just giving people the opportunity to talk about death from whatever perspective they feel is important to them at the moment,” said the event’s founder and facilitator, a 72-year-old artist, transformational psychologist and scholar of comparative religions named Elizabeth Gill Lui.
It was during the pandemic that Lui began to explore how Western culture related — and failed to relate — to death. “You’d think we would find common ground,” she recalled. “Instead, it’s politicized. Because I’m closer to my own death, I felt that I should have been more informed about the issues surrounding death and dying.” Lui took a course on Zoom to become certified as a death doula, or an end-of-life caretaker who provides non-medical assistance and guidance to the dying and those close to them. In September of 2022, she organized her first Death Café at the Philosophical Research Society, a spiritual and cultural center she considers her “intellectual home.” It has met on the third Thursday of the month ever since.
The first-ever Death Café was hosted by Jon Underwood in his London basement in 2011. According to his original guidelines, the meetings must always be not-for-profit and remain fundamentally unstructured. Inviting a guest speaker, selecting a book to discuss, choosing a theme — any such activity disqualifies the event from using the Death Cafe name. The host is obliged only to serve tea, coffee and cake, and open up a conversation.
Because death is not an easy subject to broach, the freeform meetings are designed to help participants find their own way. “If you get people talking about it, they start to find the language,” said Lui. “Everyone has something they can think about and share that needs to be heard.” In this moment in history, when overdoses, suicides, school shootings, climate crises and war are part of the daily discourse, a death discussion might also address societal and environmental devastation.
Caitlin Doughty founded The Order of the Good Death in 2011.
Every meeting brings together newbies and regulars, many of whom are relieved to discover a meaningful social outing devoid of small talk. “From the moment we start talking, it’s authentic,” said Lui. “It gives people the opportunity to touch something that’s at the core of who they are. It’s not about the weather or traffic, or ‘What did you do today?’ I think people are hungry for that.”
On the afternoon I attended, Lui opened the conversation by asking what brought us here. The responses varied from the loss and illness of friends or family members, to the dawning awareness of death by people in their 70s, some of whom were beginning to educate themselves about the right-to-die movement and eco-friendly burial alternatives. Several were end-of-life or grief counselors. A few people admitted they were simply afraid of dying. Whatever our motivations, Lui encouraged us to “befriend death.” When a companion is as constant as death, it is preferable that it be a friend rather than an enemy.
When my turn came, I explained that the death of my beloved dog earlier that year had been part of a personal reckoning around mortality — my own and that of everyone I loved. I admitted that I found the subject difficult to discuss even with close friends. And yet here I was, opening up with a group of strangers. Over the course of two hours, the conversation touched upon the effects of the hallucinogen DMT, Anderson Cooper’s grief podcast, an episode of “Black Mirror” that explored the digital afterlife, and a Getty Villa exhibition about the “Egyptian Book of the Dead.”
Lui’s is just one of a number of Death Cafés that meet in and around Los Angeles. Through the organization’s website you can find information for similar gatherings in San Diego, Santa Barbara and Palm Springs. To date, Death Cafes have been held in 87 countries, from Afghanistan to Zimbabwe, but Lui’s is the only one where you might be served her legendary carrot cake.
Death Cafes are part of what has come to be known as the “death positive” movement. The term can be traced to the work of an L.A. mortician named Caitlin Doughty, who in 2011 founded The Order of the Good Death, an organization that advocates for funeral industry reform and a more openness around death and dying. The pandemic acted as an accelerant for “death positivity,” as millions of people found themselves forced to confront illness and mortality in previously unimaginable ways. Since 2019, membership in the U.S.’s National End of Life Doula Alliance has more than quadrupled, with new training programs being offered across the country to meet demand.
The growing field of end-of-life care is increasingly reflected in popular culture. The title character of Mikki Brammer’s 2023 novel, “The Collected Regrets of Clover,” for example, is a death doula in New York City who attends Death Cafes at the public library and drinks cocktails on the Lower East Side. “The secret to a beautiful death is to live a beautiful life,” Clover’s 87-year-old neighbor Leo tells her as he breathes his last, and more and more resources are consciously intertwining the two. The Brooklyn-based Morbid Anatomy has grown from a blog into an online platform, library and brick-and-mortar space where one can take classes, participate in a “Death Meditation,” and pick up objects like Victorian memento mori and Dia de Los Muertos-related folk art. There’s even a #DeathTok hashtag on TikTok featuring posts with billions of views.
This November, dozens of speakers on subjects such as psychedelic therapy and assisted suicide addressed 600 attendees from the death-and-dying field at the the sixth End Well Symposium in Los Angeles. Professional hospice care has been available for over 50 years — Elizabeth Kübler-Ross’s 1969 book “On Death and Dying,” which introduced the idea of the five stages of death, is a venerated classic — but with the death-positive movement, death is being embraced as a vital part of life, not just the end of it.
The site is a wealth of practical resources and information on death preparedness, end-of-life care, funerals and grief.
Things were different as recently as 2018, when Departing Dearly founder Wendy Mullin found herself researching end-of-life services for her mother. “I realized during the process that there were a lot of things that didn’t make sense,” recalled Mullin, a designer of clothing and interiors. “Why are we putting these lacquered boxes in the ground and embalming people?” she wondered. For the creator of the fashion brand Built by Wendy, known for its rock ‘n’ roll tailoring and coveted guitar straps, the presentation of information was its own form of stylistic hell. “Everything was either religious or ugly. I felt like I was looking at the Zales Jewelers of death information.”
Finding no website that spoke to her aesthetically, Mullin began thinking about the need for something new. “Goop — but for death. Instead of lifestyle, what about deathstyle?” she said with a chuckle. In 2019, Mullin started developing a deck and talking to people about the project. When COVID hit, the idea of monetizing a site lost its appeal, and she turned down a couple of potential investors before deciding to build the site as a public offering in her own “punk rock” style.
The main image on the Departing Dearly homepage is a person stage diving into a crowd. It’s an analogy for “the process of dying,” said Mullin. “It’s like jumping into the unknown. You’re hoping someone is gonna catch you. You’re trusting other people to help you.”
The site is a wealth of practical resources and information on death preparedness, end-of-life care, funerals and grief. It also explores how death shows up in art and pop culture, from a classic film like 1965’s “The Loved One” to a virtual reality near-death experience called Virtual Awakening. Recent posts on the Departing Dearly Instagram account feature the show “Succession,” the climate activist group Extinction Rebellion, and the 97-year-old artist Betye Saar, whose large-scale commissioned work “Drifting Toward Twilight” recently opened at The Huntington in Pasadena.
Like Lui, Mullin became certified as a death doula during the pandemic as a way to deepen her relationship with death and dying. The training helped her initiate meaningful conversations with older relatives and allowed her to get more comfortable with her own mortality. Fundamental to her understanding was Ernest Becker’s 1973 book, “Denial of Death,” which posits that our society’s competitive drives toward status and success are elaborate distractions, as Mullin described it, “so we don’t have to stop and look at the fact that we’re gonna die.” (She also links our phone addictions to “death anxiety.”)
“I think it’s literally being ‘woke,’” she said of the decision to face death. “We’re waking up to our own lives.”
Last month, I found myself at the Philosophical Research Society again, this time for a Living Funeral Ceremony. Essentially a guided mortality meditation, this ritual was created and led by Emily Cross, a musician and death doula who runs the Steady Waves Center for Contemplation, an end-of-life space in Dorset, England. Cross had traveled to the U.S. to host several ceremonies on the West Coast; this one was organized with the group Floating, which facilitates events related to music and healing.Although ceremonies at Cross’s center can involve lying in a woven willow coffin, for this one we sat and lay on yoga mats.
I found unexpected solace in the idea that my spirit could exist as a ray of light or the sound of a bell, struck just once but reverberating through eternity.
Cross created the Living Funeral Ceremony after hearing about the South Korean tradition of mock funerals, which were developed to curb the country’s high suicide rates. “The purpose of this ceremony,” she said, while moving softly through the room as we contemplated our own image, “is to enrich your life by bringing death into immediate and clear view.” There were some tears shed as we were guided to say goodbye to everything we knew and loved. Before each mat was placed a clipboard with a single sheet of paper, on which we were to write our last words. Then, Cross began a deep, guided visualization of letting go of our physical bodies as we covered ourselves with a funereal shroud. After some time inhabiting this fugue-like state, we were guided back by her voice.
I will admit that my own “final” words included regrets and unresolved emotions. I am not one of those people who could die happily tomorrow, satisfied that my purpose has been fulfilled. Yet I was surprised to discover that, when contemplating what I might “leave behind” after death, the idea of worldly accomplishments barely registered. My mind wasn’t trained on legacy or immortality, but on love and energy. I found unexpected solace in the idea that my spirit could exist as a ray of light or the sound of a bell, struck just once but reverberating through eternity.
After we came back to “life” and shared our experiences, I felt grateful and glad to get to live another day — and to have time to work on those regrets. When the time does arrive, I hope to have cultivated Lui’s fearlessness. “I want to experience death,” she told us with a smile. “I’m convinced it’s going to be interesting.”
– Meet The Death Positive (Or Accepting) Practitioners
Have we lost the ability to die ‘well’?
By Tessa Dunthorne
Dead Uncertain: Why We’re Disconnected From Death
‘I was lucky, in a way,’ considers Dr Emma Clare. ‘I was brought up by my grandparents, so I always had that awareness that they were closer to the end of life than most people’s parental figures. We were also very immersed in nature, my grandad always outdoors in the Peak District, and bringing home dead wildlife to look at and appreciate. We especially liked birdwatching, and sometimes he’d find [dead] birds, like hawks, that you don’t often get to see up close – he’d call me outside, we’d have a look, and we’d be like, “wow, isn’t life amazing”.’
Emma is an end of life doula and has a PhD in death competency from the University of Derby. Not dissimilar to the doulas who stand alongside midwives for new mothers, she is one of the palliative and post-life care workers who step up in difficult times to hear the wishes of the dying, facilitate conversations for newly bereaved families, and provide a strand of support that the medical system cannot give. In short, she – and her peers – are the people who make death a bit more human – because, essentially, we’ve lost the ability to die well. And it’s come in no small part from our increasing disconnection from nature.
In a recent episode of environmental journalist Rachel Donald’s podcast Planet: Critical, agroecologist Nikki Yoxall bemoans how we’ve begun to think of death in nature as a waste – as something we should try to fix. She argues that we’re increasingly ‘cleansed from decay’, a cycle within which all living things exist; that the invention of plastic itself can be credited with this alienation, as a material that defies that natural cycle with its foreverness.
We’re experiencing a nature deficit, and this is impacting our ability to connect with natural cycles
We’re also experiencing a wholesale nature deficit. Rewilding Britain suggests that 90 percent of our time is now spent indoors; we’re less food and nature literate, too The biggest indicator of this is how we’re living beyond the limits of nature, having transgressed six of the nine planetary boundaries set out by climate scientists. But it’s also cropped up in an unexpected way: how we interact with and experience the inevitability of death.
Like plastic, we’re now approaching a technological crux in history where we can (to an extent) deny the natural cycle of life and death (just look at the tech bros in Silicon Valley dropping millions in the search for everlasting life). Human beings have also, of course, made strides in medicine that have almost doubled our lifespans. But by doing so, argues Emma, we have also medicalised our experience of death.
‘Medical advancement is obviously a good thing,’ says Emma, ‘but it makes us feel like we’re aside from nature – that we can conquer death. And we think we know how to avoid it, when actually we don’t – we only know how to prolong the dying process.’
Dr Kathryn Mannix, the palliative care doctor behind With The End In Mind (William Collins, £9.99), argues that medicalisation has radically altered our experience of death. Or, rather, ended our experience of death. ‘Instead of dying in a dear and familiar room with people we love around us,’ she states, ‘we now die in ambulances and emergency rooms and intensive care units, our loved ones separated from us by the machinery of life preservation.’
Emma agrees. ‘One of the reasons that this discomfort starts in society is that a lot of our deaths are now behind closed doors, whereas even a hundred years ago, most people died at home with kids around.’
University of Exeter’s Dr Laura Sangha, a specialist in early modern death cultures, points out that frequent observance of dying in the past didn’t affect the gravitas of loss. ‘Seeing death more, particularly among young children, didn’t mean you grieved less,’ she says, ‘evidence points to parents and children having strong bonds, and parents experiencing heartbreaking suffering when they lost their offspring. But the fact that it was more likely to happen would have meant that you developed strategies to emotionally prepare.’
Other cultures still retain this emotional preparedness, suggests mortician-cum-YouTuber Caitlin Doughty in her book From Here To Eternity (Orion, £8.99). It sees her go around the world following different practises of mourning and burial. She found that Westernised society has shed holding space for the bereaved to grieve openly and without judgement.
In contrast, she found that the Toraja people, from South Sulawesi, Indonesia, embalm the bodies of loved ones and maintain them for years after a person dies, until their burial (after which they are often exhumed on special occasions). In Belize, families bring bodies home from the hospital for a full-day wake and pre-burial preparation, rubbing loved ones in rum to help release rigour mortis-seized limbs more quickly. Closer to home, in Ireland, wakes are held to display the body and queues of people come to pay their respects. In these examples, seeing is believing or at minimum the rituals enhance our understand of our place in the cycle; and it encourages a sense of purpose to help us grieve in meaningful ways.
‘Doulas want to bring death back into the community,’ says Emma, ‘we want to get to a point where people have basic knowledge around death.’
Community seems ultimately the key to unlocking our peace with the end. There is a hunger for open spaces for process and grief – you need only to look at the success of Death Café, which, since starting in an East London basement in 2011, has seen 10,000 events take place in 85 countries.
‘My late son, John, had the idea of Death Café because of his spiritual beliefs,’ says Susan Barsky Reid, his mother and co-founder. ‘He was a devout Buddhist, and so examined death and dying daily. I think he thought it would be helpful for people because there is so much death denial around.’
Indeed, From Here To Eternity concludes that the key to a calmer approach to the end comes as a collective. ‘Death avoidance,’ Caitlin explains, ‘is not an individual failing, but rather a cultural one. Facing death is not for the faint-hearted; it is far too challenging to expect that each citizen will do so on his or her own.’ And Susan points to joy in this shared challenge. ‘My first experience of a death café was life affirming; people laughed a lot and it was very fun. There was such a feeling of intimacy that one got from being with a group of strangers for an hour and a half.’
And then there’s that final link: nature. ‘One of the reasons I’ve been set up to be comfortable with death is because of nature,’ says Emma, ‘because all of nature is constant life and death, and in fact the things we think are most beautiful in nature ultimately tend to be death – like the autumn leaves falling from trees. All of the things we appreciate in nature are only possible because of that cycle from life to death, and I think the more time you spend being really present in nature, the more you feel like part of it, and that normalises being part of the cycle.’
What To Do Next
Read… Dr Kathryn Mannix’s palliative care memoir, With the End In Mind.
Attend… A local death café – they take place all over the country (deathcafe.com).
Consider… How you might like to be buried – and talk about it with loved ones – even if you think it’s a while off!
