[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.
Two very different books about death, by Kathryn Mannix and Caitlin Doughty, look at how we can face our final days with practicality, adventure and joy
[W]hen John Keats was dying of TB in Rome, just 25 and far from family and home, he wrote a series of beautifully judged, empathetic letters of farewell that deal lightly (yet never falsely) with his physical suffering and his emotional anguish. From the shrinking circle of his life, from his frail body drowning in itself, he reached outwards towards the friends he was leaving. In his final letter, he wrote of living a “posthumous existence”; his last phrase becomes his eloquent, courteous and self-effacing goodbye before he exits the stage on which he has had such a small parcel of time: “I always made an awkward bow.” Dying as a performance, dying as an art and a practice, dying as something solemnly profound and sorrowful and at the same time as normal, natural; dying as physical and as spiritual; dying as the end of a whole world because, as Oliver Sacks wrote, when dying himself: “There is no one like anyone else, ever.”
We live in our bodies and die in our bodies. In previous centuries, death was familiar and not hidden behind institutional walls: before the 20th century, there would have been scarcely an adult who had not seen their parents, some of their children, and their friends die. Moreover, there was faith that it was not the end. People witnessed death, dealt with it, prepared for it, even embraced it (John Donne used to sleep in his own coffin; Jeremy Taylor wrote his 17th-century manuals for the soul, Holy Living and Holy Dying, which became the preeminent works of the ars moriendi tradition; in The Tempest, Prospero consigns himself to an old age in which every third thought will be of death). Now, although we live with the sense of our own ending, we don’t really. We know we’re going to die, but we don’t know. Our body doesn’t know, except in dizzying moments of terror, until the sentence has been uttered and the gallows are being built under the window. Even then, death is often held at bay and life prolonged at all costs: the fragile and disintegrating body is plugged into machines, pumped full of oxygen and blood and drugs, its gallant heart restarted and kept going, no matter the pain, no matter the hopelessness of the endeavour, no matter that at a certain point this isn’t living, just a slowed-down, drawn-out, painful and undignified dying.
It has become easier to live longer, but harder to die well. Most people want to die at home; most die in hospital. Most want to be with family; often they are alone or with strangers. “Their death has been stolen from them,” writes Seamus O’Mahony in his bracing and unsentimental account of dying, The Way We Die Now, which charts how something that used to be public and acknowledged, with a common script, has become an aggressively medicalised and bureaucratic process placed in the hands of experts; sometimes banal, sometimes farcical, sometimes painful or undignified. Modern, sanitised death becomes a dirty little secret, almost embarrassing: our language circles round it, we don’t like to name it, cross the road to avoid those recently touched by it, and shy away from the physical, squeamish fact of it, so that the dead body is whisked away, frequently embalmed (for fear of its smell), cremated in “facilities” that are often in industrial zones.
Lady with the Lamp: Florence Nightingale tending the sick and dying.
Have we lost our way with dying and with death? In the last few years, there has been a crowd of books by doctors, scientists, writers and people who are scrutinising their own departure that have sought to show us different, kinder ways of ending: Atul Gawande, Oliver Sacks, Henry Marsh, Jenny Diski, Tom Lubbock, Marion Coutts, Paul Kalanithi, the luminous final poems of Helen Dunmore… the list is long. Behind them all stands the austere, magisterial work by Sherwin Nuland written in 1993, How We Die. Now Kathryn Mannix joins this distinguished group and her voice, though quiet and calm, is distinctive. A palliative doctor (or “deathwife”), she spends her days with the terminally ill and their families, witnessing and supporting them at times of intense suffering, terror and loss. About a quarter of deaths are sudden and unexpected, but she usually sees the ones that come slowly, over months or years, and while much of her work is diagnostic and medical, one of her crucial tasks is to help those who are dying and their families find ways of dealing with life’s final, great event.
With the End in Mind: Dying, Death and Wisdom in an Age of Denial is Mannix’s account of ways of dying, through a series of vivid stories, most of which disguise the protagonist, some of which are composite tales stitched together from several cases, and all of which are heart-wrenching testimonies to human courage and love. Her purpose is to describe many forms of death – the young man with testicular cancer treated in the room dubbed “the Lonely Ballroom”, the dying mother in the hospice who manages to walk her daughter up the aisle, the 22-year-old with cystic fibrosis, the teenager with leukaemia – and to show how in each case, while a death may be emotionally harrowing, it need not be intolerably painful; while it may be tragic, it need not be ghastly or full of the chaos that accompanies too many ends.
Like those romantic portraits of Florence Nightingale holding her lamp aloft as she walked between beds of maimed and dying soldiers, Mannix’s aim is to shed a soft, clear light on a subject she feels is too often avoided. She wants us to think about what dying and death mean for others and for ourselves and take the fear and recoil out of the subject. Mild, tender and conciliatory, she is punctiliously even-handed. If one story shows how denial is toxic and the truth needs to be gradually and gently revealed, in another she demonstrates the usefulness of denial; if one describes how precious time can be won for a patient, another is an example of how prolonging life can be cruel and death a necessary kindness. One person’s good death is not another’s – we all need to find our own way to take our bow and leave the stage.
I agree with almost everything Mannix says; I would like her, or someone like her, to be my compassionate, wise doctor when I lie dying, easing me out when my time has come. Yet in her desire to show that death can be well managed, she leaves out the mess, fear, pain and unpredictability of so much dying – its scandal, its wildness and its impossibility. Not all passing can be gentle and not everyone can be brought to acceptance in the face of their own obliteration. However we dress it up and think about it, death remains blankly ungraspable and stark.
Enter Caitlin Doughty, American mortician, joyful member of the death-positive movement, who describes what happens to our mortal remains with boisterous relish – “ya tell it like it is”, she wrote in her first book, Smoke Gets in Your Eyes. Skin slip is skin slip; putrefaction stinks. The body fails and the body rots and death is a tragedy and a farce. Jaunty, boisterous and unsentimental, Doughty believes that we in the west have made death and its aftermath into a corporate, perfunctory affair, in which the meaning of an ending is denied. Her mission is to “reclaim public understanding of dying” and to bring individuality and joy back into our dealings with the dead – and so, in From Here to Eternity, she embarks on a journey of discovery: to the only open pyre in America; to a sky burial in Tibet, where the body breaker slices the corpse into parts, pounds the flesh with a mallet, mixes it with barley flour and yak butter or milk, and leaves it to the shrieking vultures to consume; to burial towers in India; to the people of Tana Toraja in Indonesia, where mummified bodies are cared for in their home (offered food, dressed, even given a bed with the living) over months or years until the family can sacrifice an animal and put the dead to their final rest; to Barcelona’s mass bone pits; Mexico’s Day of the Dead. Skulls used as flowerpots, bodies made into compost on a body farm, corpses covered with rose petals, funerals conducted by men with dreadlocks and purple frock coats – what Doughty relishes are those rituals that acknowledge death, its bodily fact and its emotional enormity.
And although the book is in love with extremes, it actually shares Mannix’s desire to be balanced: one culture’s practice is another culture’s taboo. We might not like the thought of ripping the rotting flesh from our loved one’s bones, but for some, burning a body is equally repugnant. What is important is “to hold the space” – to banish our fear and shame, and create a ring of safety around the grieving family and friends where they can mourn, each in their own way.
Animals perish; only humans die – because we are creatures who are aware of our own mortality. This awareness, which can feel vertiginous, unendurable, is also what gives us selfhood, and life shape and meaning. “Death destroys a man; the idea of death saves him,” wrote EM Forster. It is Henry James’s “distinguished thing”, Martin Amis’s backing to the mirror, Rochefoucauld’s sun that we must not stare at too long lest we go blind with seeing. It’s the great nothing; the everything, which makes us and unmakes us, and to which we all come in the end. Nothing is more certain; nothing more bewildering, strange, scandalous, downright impossible, forever true.
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.”
A tincture brought relief to 92-year-old Raymond Hayley, which also made things a little easier for his son and caretaker, William
Raymond Hayley enjoyed a day trip to Granville Island with his son, Will, in June 2017.
[B]efore passing away suddenly in September 2016, Doreen Hayley made her son swear not to put his father, Raymond, in a care home.
The “normal bachelor life” William Hayley had been living in Vancouver was about to come to a halt: with his mother gone and his 92-year-old father suffering from Parkinson’s disease, he was thrown into the position of caretaker without an instruction manual.
At the time, he had no idea how big a role cannabis would play in easing his father into the final stage of life.
Among Raymond’s favourite places to take in the sights and sounds of Vancouver were the docks of Granville Island. It was there on a summer day in late June that the Straight first met the Hayleys.
Diagnosed with Parkinson’s disease in his 70s, Raymond had spent the better part of 20 years suffering from the degenerative disorder that caused uncontrollable shaking and rigidity. As it progressed, Parkinson’s came with its own brands of dementia and anxiety, and Raymond would experience a symptom called “sundowning” almost daily.
Each afternoon like clockwork, William said, his father’s agitation and confusion became otherworldly.
“He’d get into these states—the closest thing I could relate it to is a possession,” he said. “The look on his face would change, things didn’t make sense to him; he would moan, and sometimes he’d hit himself or a chair.”
With his father waking up hourly, sleep escaped William, too. Their health suffered, and William developed anemia as Raymond’s condition deteriorated.
At his wits’ end and with no option from doctors but powerful antipsychotics, William watched a Facebook video of a man with Parkinson’s disease whose tremors subsided after he took Phoenix Tears, a highly concentrated cannabis extract.
“I thought, ‘Rather than having him come to this terrible crashing end like a plane cartwheeling down a runway, what if we could soften the landing for him?’ ”
William consulted with his father’s physician before visiting local dispensary the Village Bloomery, where he opted for a four-to-one CBD-to-THC tincture, a ratio that would minimize psychoactivity while decreasing anxiety. He said the effects on his father were almost immediate.
“Within 30 minutes, he went from eating cookies to stacking them up and building with them. He was calm, he wasn’t moaning, and he wasn’t shaking,” William remembered.
He also said that when the tension in Raymond’s body stopped, it opened the doorway to sleep—something he hadn’t done for more than 40 minutes at a time in almost five years.
“All of a sudden, six hours became eight, and eight became 10,” William said. With his father able to sleep, William could do the same. Physically, Raymond had some control of his body back, and mentally, the symptoms of his dementia began to subside, according to William. He added that the sundowning stopped and there was light in his eyes again.
“I’ve got it down to a routine where I put it in his dentures,” William said as we circled Granville Island. “He likes it, he wants it, and he knows that it’s working.”
Raymond passed away peacefully in his son’s arms on August 21, 2017. Today, William says that not only did cannabis give him his father back; it gave his father the ability to grieve, something dementia had robbed him of.
“He was married for 69 years—some people don’t live that long,” William said in a follow-up interview. “When he became lucid enough to realize his situation, that his wife had passed away and everything was gone, he was actually able to grieve. At least with cannabis, I could talk to him about it.”
It’s the type of bittersweet story known well by Selena Wong, a Vernon-based cannabis consultant who specializes in end-of-life care.
Calling cannabis her “saving grace”, Wong said that when she realized that cannabis could have value for her grandparents, it was a game changer. But she noted that there are a few things to consider when administering cannabis to an elderly person.
“I’m really mindful that the people I work with have a positive experience with cannabis,” she said. “Seniors are people, and just like you and I want to know what we’re taking, so do they.”
Topical lotions or CBD products are good starting points, she said, because they won’t cause euphoria. A tincture is also a great option for seniors who might have trouble swallowing capsules.
“Because of the conditioning they’ve experienced, it helps them to reframe that relationship with the plant without having a negative experience.”
Looking back, William says that without cannabis, he’s not sure how well he would have coped with his father’s illness, but he’s happy to have kept his promise to his mother.
“A year is a long time to give up,” he says, “but I’d give $10 million just for another 10 minutes with him.”
[I]n her 1993 Nobel lecture, Toni Morrison said, “We die. That may be the meaning of life. But we do language. That may be the measure of our lives.” Nina Riggs and Edwidge Danticat both “do language” to explore mortality in their new books, charging each page with both measure and meaning.
Riggs’ deeply moving “The Bright Hour: A Memoir of Living and Dying” takes its title from a quote by Ralph Waldo Emerson — who, we learn, was Riggs’ great-great-great-grandfather. Riggs, a poet who clearly inherited her famous ancestor’s insight and wit, leads us through all four stages of her journey with metastatic breast cancer, which — cruelly, and at times, hilariously — intersects with her mother’s cancer journey; her mother goes into hospice and dies not long after Riggs’ mastectomy. Dark stuff, but “The Bright Hour” is indeed suffused with brightness — a series of luminous reminders that “the beautiful, vibrant, living world goes on” even in the midst of pain and loss. Riggs died in February, shortly after completing the book; her widower, John Duberstein, provides a touching afterword.
Danticat’s “The Art of Death: Writing the Final Story,” is part of Graywolf Press’ “The Art of” series in which authors explore specific craft elements of creative writing. The book offers a critical examination of how and why writers — a broad, at times dizzying, array, including Zora Neale Hurston, Joan Didion, Gabriel Garcia Márquez and Danticat herself — address death in their work.
“We write about the dead to make sense of our losses,” she writes, “to become less haunted, to turn ghosts into words, to transform an absence into language. Death is an unparalleled experience, so we look to death narratives, and to the people in our lives who are dying, for some previously unknowable insights, which we hope they will pass on to us in some way.”
These books are somewhat the inverse of one another: Riggs weaves literary criticism into her memoir, while Danticat weaves memoir — focused largely, wrenchingly, on her own mother’s death from cancer — into her literary criticism. Both writers quote Michel de Montaigne, who wrote extensively about mortality in the 16th century — Riggs, in fact, prefers his crankiness over her great-great-great-grandfather’s rhapsodies. He even becomes a muse of sorts to Riggs; she writes, “I can hear Montaigne hollering: break it open, look inside, feel it, write it down.”
“The Art of Death” helps explain why “The Bright Hour” is so affecting. “The more specifically a death and its aftermath are described,” writes Danticat, “the more moving they are to me. The more I get to know the dying person on the page, the more likely I am to grieve for that person.” Riggs writes about her own dying — and living — with stunning, tender, specificity. Take, for example, her obsessive quest for the perfect couch. After musing over how she can figure out how to let go of everything in her life but mothering her two young sons, she writes, “So maybe I don’t try to figure it out. Maybe I just aim to get the couch right: strong bones, high quality leather, something earthy and animal and real. A surface that knows something of what it was to be alive, that warms to our touch and cools in our absence.”
Danticat allows us to mourn her mother through closely observed detail as well, showing us the purses her mother left behind, filled with hard caramel candy, letting us hear her mother’s charming turns of phrase such as this one, translated from her mother’s Haitian Creole: “Most of us enter this world headfirst, then we leave it feetfirst.”
Danticat notes that humor can help keep death narratives from becoming “overindulgent, self-righteous, self-piteous, melodramatic, sentimental, or a combination of some of the above.” Riggs peppers her writing with a great deal of humor, as in this passage after she starts using a cane: “I’m pretending that I’m starting a hip new craze that people don’t even know about yet — like vaping or lumberjack beards or bone broth. Canes: the new frontier in walking. Like walking only better. Extra virgin, cold-pressed walking.” She clearly came by her sense of humor from her mother, who, while in hospice, delighted in responding to funny texts with “the Bitmoji with a hand coming out of a grave that says ‘Literally dying!’”
Both books serve as wake-up calls, bracing reminders to live while we are alive, to appreciate this gorgeous, absurd world of ours — and the people we love within it — while we can. As Riggs quotes from Montaigne’s final essay: “Let us make good use of our time. We still have so much of it that remains idle and ill-used.”
[D]eath lurks in the corners of our lives, threatening to emerge from the shadows at any moment.
Our society’s aversion to death and dying isn’t just unrealistic — it’s unhealthy. How can we begin to accept death as part of our lives?
When it bursts into our day-to-day existence — sometimes unexpectedly, occasionally anticipated — it is almost always unwelcome.
In Canada and the western world, we have reached a point where we will do almost anything to convince ourselves that death doesn’t exist.
“Death is the last great taboo,” writes Julia Samuel, a grief psychotherapist and founder patron of Child Bereavement UK, in her bestselling book “Grief Works.”
“We seem happy to talk about sex or failure, or to expose our deepest vulnerabilities, but on death we are silent,” she writes. “It is so frightening, even alien, for many of us that we cannot find the words to voice it.”
But experts who work in the field of death and dying say our increasing tendency to ignore death, no matter the cost, is hurting us.
Our death illiteracy means we are woefully unprepared to handle the growing number of aging people in our society, says Denise Marshall, associate professor of palliative care at McMaster University and the Medical Director of the Niagara West Palliative Care Team and McNally House Hospice.
According to Marshall, unless we begin to talk about death — to “befriend it,” as Samuel says — we will see suffering on a massive scale.
“This is like the perfect storm in North America,” said Marshall. “There will be too many people with too many needs, and not enough of us able to support them. We won’t know what to do with all of these dying people in frailty.”
Where did we go wrong?
When it comes to death and dying, where did we, as a society, start to go wrong?
First, Marshall says, it’s important to understand that our aversion to death is a uniquely postmodern, western phenomenon. While risks like communicable diseases or complications from childbirth used to bring death into our homes, in our modern society, death is something that happens far beyond the reality of our day-to-day life: in an impoverished or war-torn country, perhaps, or behind the closed doors of a hospital.
“At this very moment in other parts of the world, there is a huge death literacy — for often tragic reasons,” she said. “People are dying in famine, in war, in all kinds of things. The idea that death is a part of life, and it’s always there, has not been removed from the whole world.”
The tendency to eradicate death from our everyday lives is also a relatively new historical development, Marshall added. Just picture any death scene in a historical movie or novel; the dying person is likely to be at home, encircled by friends and family, rather than in a hospital surrounded by doctors. It has only been in the past hundred years or so that death became so highly medicalized.
Marshall dates the removal of family members from their loved ones’ deathbeds to the 1920s — the same time doctors started to better understand the infectious nature of tuberculosis.
“It’s the first time in the Western World that health care said, “You, the community, must stay out,”” said Marshall. “And so began the beginning of institutionalized death. It’s not that long of a history.”
Clare Freeman, the executive director of the Bob Kemp Hospice, sees families coping with death and dying every day. Residents only spend an average of 15 days at the hospice before they die, but Freeman says that some families are so wary of acknowledging death that they will avoid discussing it at all costs.
“Sometimes, residents will tell our staff things they feel afraid to tell their loved ones — such as, “I know I’m dying. They don’t think I am.””
“They don’t want to make their family sad,” added Trudy Cowan, the manager of events and community engagement at the Bob Kemp Hospice. “It becomes this elephant in the room.”
Freeman questions whether the declining role of religion in our lives may also be another factor in our denial of death. Most religions include rituals that mark the various stages of life, including birth, our entrance into adulthood, marriage, and death. Without these rituals, we may lose the touchstones in our lives that allow us to acknowledge these times of transition.
“The disconnection to faith in peoples’ lives has made us think, “Oh, we’ve escaped death,” Freeman said. “We’ve done a lot of things in society to remove ritual — to make it about individuality and choice — and that process of losing ritual is actually impeding our literacy about death and dying.”
Freeman argues that there is a cost to our death avoidance. She suggests that our society tends to put a timeline on grief, expecting family members to bounce back as quickly as possible after the death of a loved one. This turns a natural process — grieving — into a medical disorder.
“We somehow think that we’ve cured death. Then, since we’ve cured death, we’ve also cured mourning. So, if you’re sad or mourn beyond three days, we’re going to send you to a therapist. It becomes a clinical thing, whereas mourning and grief is a natural process,” Freeman said.
End-of-life care
For concrete strategies to help combat our society’s death-avoidance, Marshall points to the work of her mentor, Dr. Allan Kellehear.
Kellehear, a medical and public health sociologist, was the first to suggest that end-of-life care should be the responsibility of the entire community — not just medical professionals.
His groundbreaking 2005 book, “Compassionate Cities,” argues that workplaces, charitable organizations, clubs, churches, and community members should work alongside doctors and palliative care clinicians to care for the dying and bereaved.
The most effective way to foster this, says Marshall, is by “adopting a good old-fashioned public health approach.” Jurisdictions across Canada should invest in advertising, workshops, and awareness campaigns encouraging more conversation about death.
“We need for end-of-life care in Canada what we have done with smoking cessation. It’s a good analogy,” she said. “It takes time — this is a psychic shift.”
Many European countries are already using this approach.
In Ireland, coasters reading “Dying for a beer?” that described 10 ways to support a bereaved friend were distributed in pubs across the country as part of a public health campaign. In the United Kingdom, death education is part of the kindergarten curriculum.
Systemic changes like these are essential in order to handle the growing number of Canadians approaching the end of their lives, said Marshall. Currently, 70 per cent of deaths occur in hospital — and there’s simply not enough space in palliative care units, hospitals, and hospices to handle a major influx of the sick or dying.
In Canada, death rates continue to climb each year. Statistics Canada reports that the number of deaths across the country climbed from 654,240 between 2000 and 2002, to 722,835 between 2010 and 2012.
Unless our society learns to help care for the dying, Marshall says we will reach a crisis point where people will be abandoned at the end of their lives, left alone without medical or community support.
“Why is it a crisis? Because I don’t think we’ve fully grasped the fact that this isn’t going away. This is not a blip in society,” Marshall said. “We are living longer, with more complexities. One-hundred per cent of us, though, are going to be at end of life.”
Marshall points to China as an example of a jurisdiction facing a disproportionate number of dying people that completely outstrips the younger age group’s ability to care for them.
“That will eventually be us. It will be every country,” Marshall said. “What we’ll risk seeing is huge amounts of suffering in ways we haven’t seen before. True abandonment.”
Death education
In Hamilton, there are those who are already engaged in the type of grassroots advocacy that Marshall espouses.
Rochelle Martin is a community death-care educator. Her passion lies in supporting the dying and their families.
Martin, who lives in downtown Hamilton with her family, helps families with what she calls “home-based death-care.” She advises families who wish to have a home funeral about the practicalities of washing, dressing, and laying out the body of the person who has died.
Martin does not get paid for her work as a death-care educator, nor does she directly handle bodies (which would require her to have a funeral director’s license). Instead, she says she sees herself more as a “community renegade who whispers in peoples’ ears “you can do it.””
“I operate more like a lactation consultant — I can’t breastfeed your baby for you, but I can tell you how,” she said. “And I can really empower you to do it, because I think it’s so important.”
To earn an income, Martin, a registered nurse with a specialty in psychiatry and mental health, commutes to work at the Toronto General Hospital.
Her professional work as a nurse dovetails with her “renegade” work as a death educator. In fact, it was her experiences working in an emergency room supporting the families of people who have had sudden or tragic deaths that led her to begin her role in death education.
Martin noticed that family members have a natural disinclination to see their loved ones after they have died, especially if they have experienced trauma. But after a small amount of encouragement, however, most are able to have the closure of seeing their loved ones’ bodies.
“It was amazing and beautiful to watch. If they’re given even a tiny bit of encouragement or permission, people really know how to engage with death in a way that they initially thought they couldn’t or shouldn’t.”
There are those who think her work is strange, dangerous, unsafe, or possibly a health hazard — but she sees her work as an important tool to help our society become more comfortable with death. Unlike the traditional funeral industry, where our loved ones’ bodies are tended to behind closed doors (often at a cost of thousands of dollars), Martin says she acts as a gatekeeper who helps others deal with death in a practical, meaningful way.
“Any time anyone has the opportunity to engage with death like that, and finds out that it’s not scary, it’s not dangerous, it’s legal — every experience like that puts us further ahead.”
When the community becomes involved in a death, everyone benefits.
In October 2016, Monica Plant’s 91-year-old mother, Polly, suffered two strokes and fell twice in her home. By the end of that week, Polly, who still lived in her west-Hamilton home of 38 years, had been declared palliative.
Plant was relieved when her mother received permission to die at home, just as Polly had wanted. But for Plant, it created some logistical difficulties. The Community Care Access Centre provided her with three hours of care a day — which, as Plant says, “was something, but it left quite a few gaps.”
She had acted as her parents’ live-in caregiver for almost seven years and was deeply fatigued. She had already been through the emotional and daunting process of providing end-of-life care for her father, who had died at home the previous April.
Plant found herself at an emotional crossroads: she felt extremely grateful that her mother was allowed to live at home for the last few weeks of her life, but she was unsure about whether she could sustain the sort of round-the-clock care her mother needed.
What happened next is almost a textbook example of the kind of community involvement that Marshall says is so essential.
Plant reached out to her neighbours, her out-of-town siblings, and parishioners at Polly’s church. Plant’s neighbour went door-to-door along Undermount Avenue, asking residents if they would like to help ease Polly into her final weeks of life.
Within days, Plant’s support system grew to 25 households who would visit with Polly, do yardwork, bring meals, and providing Plant with some comfort and respite. Neighbours circulated emails containing meal plans and visiting schedules and swapped stories about how good it felt to come together as a community.
“(Polly) was somebody who liked things to happen organically, and that’s how it happened,” Plant said. She compares the effort to an urban-barn raising — a constructive, collective effort that allowed her mother to die in the comfort of her home.
The experiences enriched both Plant and her neighbours. As well as creating an interconnection between those who were involved in Polly’s care, it offered a glimpse of what we will all face at the end of our lives.
“What I think the byproduct of being able to die at home was that people on the street got to see what aging looks like. This is what happens at all the stages,” Plant said. “If you’re taken out when you’re retirement age and you go off to a retirement home, the neighbourhood doesn’t get a chance to see what happens when you age.”
Polly died at home on Nov. 30, 2016, in the arms of Plant and her twin brother — the way she had always wanted.
