This algorithm can figure out when you will die

By Monica Torres

[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.”

Complete Article HERE!

Cannabis softens landing for ailing seniors

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.”

Complete Article HERE!

‘The Bright Hour,’ by Nina Riggs and ‘The Art of Death,’ by Edwidge Danticat

The Art of Death

By Gayle Brandeis

[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.”

Complete Article HERE!

In denial about death

Our aversion to the inevitable will only prolong our pain

by Emma Reilly

[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.

Complete Article HERE!

Understanding Grief

By

[A]lthough many of us are able to speak frankly about death, we still have a lot to learn about dealing wisely with its aftermath: grief, the natural reaction to loss of a loved one.

Relatively few of us know what to say or do that can be truly helpful to a relative, friend or acquaintance who is grieving. In fact, relatively few who have suffered a painful loss know how to be most helpful to themselves.

Two new books by psychotherapists who have worked extensively in the field of loss and grief are replete with stories and guidance that can help both those in mourning and the people they encounter avoid many of the common pitfalls and misunderstandings associated with grief. Both books attempt to correct false assumptions about how and how long grief might be experienced.

One book, “It’s OK That You’re Not OK,” by Megan Devine of Portland, Ore., has the telling subtitle “Meeting Grief and Loss in a Culture That Doesn’t Understand.” It grew out of the tragic loss of her beloved partner, who drowned at age 39 while the couple was on vacation. The other book, especially illuminating in its coverage of how people cope with different kinds of losses, is “Grief Works: Stories of Life, Death and Surviving,” by Julia Samuel, who works with bereaved families both in private practice and at England’s National Health Service, at St. Mary’s hospital, Paddington.

The books share a most telling message: As Ms. Samuel put it, “There is no right or wrong in grief; we need to accept whatever form it takes, both in ourselves and in others.” Recognizing loss as a universal experience, Ms. Devine hopes that “if we can start to understand the true nature of grief, we can have a more helpful, loving, supportive culture.”

Both authors emphasize that grief is not a problem to be solved or resolved. Rather, it’s a process to be tended and lived through in whatever form and however long it may take.

“The process cannot be hurried by friends and family,” however well meaning their desire to relieve the griever’s anguish, Ms. Samuel wrote. “Recovery and adjustment can take much longer than most people realize. We need to accept whatever form it takes, both in ourselves and in others.”

We can all benefit from learning how to respond to grief in ways that don’t prolong, intensify or dismiss the pain. Likewise, those trying to help need to know that grief cannot be fit into a preordained time frame or form of expression. Too often people who experience a loss are disparaged because their mourning persists longer than others think reasonable or because they remain self-contained and seem not to mourn at all.

I imagine, for example, that some adults thought my stoical response to my mother’s premature death when I was 16 was “unnatural.” In truth, after tending to her for a year as she suffered through an unstoppable cancer, her death was a relief. It took a year for me to shed my armor and openly mourn the incalculable loss. But 60 years later, I still treasure her most important legacy: To live each day as if it could be my last but with an eye on the future in case it’s not.

Likewise, I was relieved when my husband’s suffering ended six weeks after diagnosis of an incurable cancer. Though I missed him terribly, I seemed to go on with my life as if little had changed. Few outside of the immediate family knew that I was honoring his dying wish that I continue to live fully for my own sake and that of our children and grandchildren.

Just as we all love others in our own unique ways, so do we mourn their loss in ways that cannot be fit into a single mold or even a dozen different molds. Last month, James G. Robinson, director of global analytics for The New York Times, described a 37-day, 6,150-mile therapeutic road trip he took with his family following the death of his 5-year-old son, collecting commemorative objects along the way and giving each member of the family a chance to express anger and sadness about the untimely loss.

Ms. Devine maintains that most grief support offered by professionals and others takes the wrong approach by encouraging mourners to move through the pain. While family and friends naturally want you to feel better, “pain that is not allowed to be spoken or expressed turns in on itself, and creates more problems,” she wrote. “Unacknowledged and unheard pain doesn’t go away. The way to survive grief is by allowing pain to exist, not in trying to cover it up or rush through it.”

As a bereaved mother told Ms. Samuel, “You never ‘get over it,’ you ‘get on with it,’ and you never ‘move on,’ but you ‘move forward.’”

Ms. Devine agrees that being “encouraged to ‘get over it’ is one of the biggest causes of suffering inside grief.” Rather than trying to “cure” pain, the goal should be to minimize suffering, which she said “comes when we feel dismissed or unsupported in our pain, with being told there is something wrong with what you feel.”

She explains that pain cannot be “fixed,” that companionship, not correction, is the best way to deal with grief. She encourages those who want to be helpful to “bear witness,” to offer friendship without probing questions or unsolicited advice, help if it is needed and wanted, and a listening ear no matter how often mourners wish to tell their story.

To those who grieve, she suggests finding a nondestructive way to express it. “If you can’t tell your story to another human, find another way: journal, paint, make your grief into a graphic novel with a very dark story line. Or go out to the woods and tell the trees. It is an immense relief to be able to tell your story without someone trying to fix it.”

She also suggests keeping a journal that records situations that either intensify or relieve suffering. “Are there times you feel more stable, more grounded, more able to breathe inside your loss? Does anything — a person, a place, an activity — add to your energy bank account? Conversely, are there activities or environments that absolutely make things worse?”

Whenever possible, to decrease suffering choose to engage in things that help and avoid those that don’t.

Complete Article HERE!

Five ways to die with more than just ‘dignity’

By Pieta Woolley

[A]s Canada’s largest generation ages, more and more of us are dying each year. Ever since 1992, when ALS sufferer Sue Rodriguez brought medically assisted dying to the Supreme Court, most of the conversation about how to have a good death has been about how to actually die.

Now, Medical Assistance In Dying (MAID) is legal and available. So, there’s a new surge of interest in making death not only less painful but good.

In this month’s Observer, I wrote about the recent death of Don Grayston (my former professor), who was an Anglican priest who prepared for his death for 40 years. He and others, including the Vancouver-based death planning agency Willow, have pushed the “good death” conversation way beyond MAID and into the realm of spirituality, relationships, values and ritual.

It’s needed. As a funeral director I spoke to last year said, “People don’t want anything to do with their dead anymore. They treat me like I’m the garbage man, just taking out the trash.”  

No one wants that to be their final story.

So, here are five ways to die — with more than just dignity.

1. Die consciously, with care

Who does it? Death doulas, who are trained to advocate for the dying, increasing their physical comfort and helping them talk about death while acting as spiritual guides. Douglas College in British Columbia offers a straight-forward, college-certified death doula program, but others, such as the Conscious Dying Institute, are less constrained and more spiritually oriented.

Why? “I see the transition out of life as having the potential to be just as celebratory as the transition into this world,” Toronto death doula Susan Dawson told Global TV in June 2016.

2. Die in charge

Who does it? Willow, through its workshop “Departure Directions.” Participants learn how their bodies can be cared for after death and receive help making a plan for rituals and practicalities. It helps to bring peace of mind to the dying, along with their friends and family, especially in the absence of a clear, religious tradition.

Why? “Maybe you’ve experienced the overwhelming frustration of arranging a good-bye ritual for someone who didn’t leave any directions. You’ve struggled with trying to honour what you think are their wishes and meet the needs of those left behind, including you.”

3. Die with fulfilled relationships

Who does it? In 2017, the 20th anniversary of the seminal book Dying Well: The Prospect for Growth at the end of Life was celebrated. Palliative care physician and author Ira Byock advised that the dying — and living — need to hear four things: “Thank you,” “I love you,” “I forgive you” and “Please forgive me.”

Why? “I was death-naive before I read Dr. Ira Byock’s book Dying Well when my father was in his early 80s and in his final, painful decline,” writes Katy Butler, the author of the 2018 book Knocking on Heaven’s Door and A Good End of Life. “It introduced me to the possibility that with appropriate support, dying did not have to be a chaotic, fear-ridden and painful experience. In fact, families could be well-supported and death could even be meaningful.”

4. Die broke

Who does it?
 Some philanthropists and foundations choose to give away their money while they’re still living so that they can celebrate it being used. Some individuals choose to give inheritances to their heirs while they’re still living so that they can offer guidance.

Why? “Benefactors who choose to ‘give while living’ discover that it gives them an opportunity to share their long-term vision with heirs and to witness how their heirs handle the assets,” the Royal Bank of Canada advises. “Beneficiaries, meanwhile, can learn to manage the wealth and become comfortable with an inheritance while consulting with their benefactors, putting everyone in a better position to preserve family wealth for the future.” There are also tax advantages to giving while living, the bank notes.

5. Start dying early

Who does it? Anglican priest Don Grayston started thinking about his own death back while in his 30s. That is, he learned about dying from his aging congregants, figured out that it was going to happen to him and started living in ways that would help him become the old, wise man he wanted to be: in community with friends. In a congregation, this is a no-brainer, as all generations from infants to the elderly sit together each week. But outside of church, tight, multigenerational communities are rare.

Why? Obviously, to prepare yourself for your inevitable death, as Willow’s guides might say. But also, The Guardian tells us that death is cool. Everyone is doing it. Even hipsters. So get with it. 

Complete Article HERE!

Death: The Greatest Teacher

The Buddha said the greatest of all teachings is impermanence. Its final expression is death. Buddhist teacher Judy Lief explains why our awareness of death is the secret of life. It’s the ultimate twist.

“Laughing in the Face of Stupidity,” painting by Tasha Mannox from the series “Laughing in the Face of Death: To live and die without regrets.”

by

[W]hether we fight it, deny it, or accept it, we all have a relationship with death. Some people have few encounters with death as they are growing up, and it becomes personal for them only as they age and funerals begin to outnumber weddings. Others grow up in violent surroundings where sudden death is common, or see a family member die of a fatal illness. Many of us have never seen a person die, while people who work in hospitals and hospices see the realities of death and dying every day. But whether death is something distant for us or we are in the thick of it, it haunts and challenges us.

Death is a strong message, a demanding teacher. In response to death’s message, we could shut down and become more hardened. Or we could open up, and become more free and loving. We could try to avoid its message altogether, but that would take a lot of effort, because death is a persistent teacher.

Teacher death met up with us the minute we were born, and is by our side every moment of our life. What death has to teach us is direct and to the point. It is profound but intimate. Death is a full stop. It interrupts the delusions and habits of thought that entrap us in small-mindedness. It is an affront to ego.

Death is a fact. Our challenge is to figure out how to deal with it, because it is never a good plan to struggle against or deny reality. The more we struggle against death, the more resentment we have and the more we suffer. We take a painful situation and through our struggles add a whole new layer of pain to it.

We cannot avoid death, but we can change how we relate to it. We can take death as a teacher and see what we can learn from it.

“Laughing in the Face of Pride,” painting by Tasha Mannox from the series “Laughing in the Face of Death: To live and die without regrets.”

Facts are facts: everyone is going to die sooner or later. No magic trick or spiritual gimmick will make it go away. Distancing ourselves from death or putting off thinking about it does not work.

I have noticed that the more distant we are from death, the more fear arises. Death becomes alien, other, scary, mysterious. People who work regularly with the dying, who are closer to death, seem to have less fear.

We each have our own unique relationship with death, our own particular history and circumstances, but one way or another we all relate to death. The question is: how do we relate with this reality and how does this color our lives? It is possible to come to terms with the fact of death in a way that enriches our lives, but to learn from death we must be willing to take a dispassionate look at our experiences and preconceptions.

Reflecting on our own mortality and the reality of death is practiced in many contemplative traditions. In the Buddhist tradition, the contemplation of death is said to be the “supreme contemplation.” It encompasses reflecting not only on physical mortality, but on impermanence in all its dimensions.

By means of meditation and by developing an ongoing awareness of death, we can change our relationship with death and thereby change our relationship with life. We can see that death is not just something that pops up at the end of life, but is inseparably linked with our life moment to moment, from the beginning to the end.  We can see that death is not just a final teacher. It is available to teach us here and now.

When we contemplate in this way, our many schemes for getting around the reality of death, such as coming up with interpretations to make it more palatable, are exposed one by one and demolished. Death is the great interrupter, unreasonable and nonnegotiable. No amount of cleverness will make it otherwise.

Contemplating death is not an easy practice. It is not merely conceptual. It stirs things up. It evokes emotions of love, sorrow, fear, and longing. It brings up anger, disappointment, regret, and groundlessness. How tender it is to reflect on the many losses we have experienced and will experience in the future. How poignant it is to reflect on life’s fleeting quality.

How we think about death matters. It affects how we live our life and how we relate to one another.

 
In this practice, we deliberately bring our attention back again and again to our relationship with death. We examine what we mean by death and what it brings up for us. We reflect on our experiences and reactions to it.

It is a bit like going for marriage counseling. “When did you two first meet? Tell me a little about your history. Do you spend much time together? What is it about him or her that has offended you? How do you see your relationship moving forward?” You could say that death is your most intimate partner. It is with you all the time, completely interwoven into your daily activities. Since that is the case, wouldn’t it be worthwhile to make a relationship with it?

But our relationship with death is not that simple. In order to understand it, we need to slow down and systematically examine our ideas about it, what it brings up for us, and what it means to us. Death stirs up all kinds of thoughts. And hidden within those clouds of thoughts is a small, unspoken, deep-rooted, yet persistent notion—that we will come through it intact, as though we could come to our own funeral.

The more closely you look into all these ideas, the more you see how inadequate the conceptual mind is in the face of death. Nonetheless, how we think about death matters. It affects how we live our life and how we relate to one another.

Contemplative practice challenges us to look deeply into our thoughts and beliefs, our fantasies and presumptions, and our hopes and fears. It challenges us to separate what we have been told from what we ourselves think and experience. We have all kinds of thoughts about what happens when we die and how we and others should relate with death, but through meditation we learn to recognize thoughts as thoughts. We learn not to mistake these thoughts and ideas about death for direct knowledge or experience. We learn not to believe everything we think or everything we have been told.

“Laughing in the Face of Attachment,” painting by Tasha Mannox from the series “Laughing in the Face of Death: To live and die without regrets.”

We are in a dance with death at all levels, and each level influences and is influenced by the others. We are influenced by what we have been told about death and dying, by our personal history, by our cultural biases, and by what we have observed. We are also influenced by inner habits of thought and conditioned responses. Our most subtle views and reactions to impermanence may be quite hidden, but they touch on our view of life altogether, and on our personal identity.

If we want to understand our relationship with death, we need to explore its broader as well as its more subtle dimensions. If we are willing to take an honest look at how we personally deal with this reality, we can develop a deeper understanding of impermanence and even befriend it.

One way to begin is by reflecting on your personal history with death. What have you been told about death? What are some of your earliest experiences of it?

In my case, when I was about five, I was told my babysitter had died, and that was it. For me, she just disappeared, and children did not go to funerals. A bit later, when my aunt died, I was told that she would go to heaven, a very beautiful place. But I didn’t think people really believed that, because all I saw were people upset and crying. When pets died, I was told they “went to sleep.” It didn’t look like sleep to me.

As a child, I observed that dead animals did not breathe or move about like live ones. I saw that they shriveled up and began to smell funny, or were squashed beyond recognition. I saw that dogs hit by cars screamed in pain and that animals looked sick before they died. I saw that people became old and frail. I saw that when you killed a bug, you could not make it come back to life, even if you felt sorry. My friends and I thought it was funny to sing ditties, like “The worms crawl in, the worms crawl out…”  Death was not that real to us; we made it into a joke.

I observed many such things on an outer level, but on an inner level, I did not have a clue as to what death was about or what it all meant. I did not know how to make sense of it, or to link it to other experiences in my life.

Death is the texture out of which we grow our identity, the stage on which we enact our story.

 
In our encounter with mortality, it is this inner dimension, the relationship dimension, that we need to explore. It becomes obvious that to get to a more uncluttered relationship with death, we first need to plow through a surprising number of ideas, presumptions, and speculations, some of which are very deep-rooted. Through this process, we can become aware of the many concepts that are floating around in us, and try to figure out where they come from and what effect they have on us.

When we look into where all this comes from, we encounter a paradox. We usually consider death to be the end, but it begins to seem that death is in fact the beginning. It is the texture out of which we grow our identity, the stage on which we enact our story.

We can begin our exploration right where we are. We have already been born, we are alive, and we have not yet died. Now what? We might connect to our life in terms of a story or a history. For instance, we were born in such and such a time and place, we did this and that, and we have a particular label and identity. But that story is always changing and in process; it is not all that reliable. However, when our story is combined with a physical body, we seem to have something more solid, a complete package. We have something to hang onto and defend. We have something that can be taken away.

But what do we have to hang onto, really? Our story is not that solid. It is always being revised and rewritten. Likewise, our body is not one solid continuous thing. It too is always changing. If you look for the one body that is you, you cannot find it.

The closer you look, the less solid this whole thing seems. When we investigate our actual experience, here and now, moment by moment, we see how fleeting and dynamic it is. As soon as we notice a thought, feeling, or sensation, it has already happened. Poof! It is the same with the act of noticing. Poof! Gone! And the noticer, the one who is noticing, is nowhere to be found. Poof! When we contemplate in this way, we begin to suspect that this life is not all that solid—that we are not all that solid.

This may seem like bad news, but in fact this discovery is of supreme importance. As we begin to see through our mythical solidity, we also begin to notice all sorts of little gaps in our conceptual schemes. We notice little tastes of freedom and ease in which our struggle to be someone dissolves, and we just are. In such moments, at least briefly, we are not being propelled by either hope or fear. We see that continually holding onto life and warding off death as a future threat is not our only option. There is an alternative to our tight-jawed habit of holding on and defending.

After each little insight or pause, there is a regrouping, and we find ourselves reconstructing our world. Each time we put it back together, we are also putting together the threat that it cannot be maintained. We do this over and over again. We are repetitively and continuously fueling the pretense of solidity and the fear of death that comes with it.

To undo this harmful habit, we need to see it more clearly. We need to recognize that we ourselves are responsible for perpetuating it, and therefore we have the power to stop.

“Laughing in the Face of Jealousy,” painting by Tasha Mannox from the series “Laughing in the Face of Death: To live and die without regrets.”

In looking at the seeds of our relationship to life  and death at a subtle inner level, we uncover how we set  ourselves up for a struggle with death from the beginning—at the very personal level of identity and self-definition.

The more solidly we construct ourselves, and the more rigidly we identify with this construct, the more we have to defend and the more we have to fear. Looking at death in terms of such subtle underlying patterns may seem inconsequential, but it is not.

When we drop the battlefield approach—that life and death are enemies—we become open to an entirely new way of viewing things. Instead of this vs. that, us vs. them, something much more inspiring can take place. Experiences can arise freshly because they are immediately let go. Because they are dropped as soon as they arise, there is nothing to hold onto and nothing to lose.  There is no battlefield, no winner and loser, no good guy and bad guy.

Simple formless meditation is a very powerful tool for relaxing this pattern of holding and defending. Working with death through our awareness of momentary arisings and dissolvings is a profound practice. It shows us that the life–death boundary is an ongoing and quite ordinary experience, and that this unsettling meeting point colors all that we do. If we can become more grounded at this level, we can become more open to what death has to teach us altogether.

Although death is an ongoing reality, there are times when it hits us particularly hard. It may be when we have a health scare or a near accident. At such times, we really wake up to the presence of death, and its teachings come through loud and clear. The heart pounds, the senses are heightened, and we feel extra alive. There is a stillness, as though time had stopped.

When we become complacent and take things for granted, death steps in.

 
Times like this are so simple and straightforward, so immediate. “This is it,” we think. “It’s actually happening.” In such moments, the heightening of our awareness of death simultaneously heightens our feeling of being alive.

In fact, in the face of death, we feel more fully alive than ever. We are shocked into thinking more seriously about what to do with the time that we have. Usually, though, we don’t maintain that awareness, and the feeling of heightened aliveness fades away. We revert to the default pattern of avoiding death, and, along with that, our dulled down approach to life.

Maintaining an awareness of death makes life more vivid. In the light of death, petty concerns fall away and our usual preoccupations become meaningless. It is as though clouds of dust that have covered over something shiny and vivid have been blown away, and we are left with something raw, immediate, and beautiful. We have insight into what matters and what does not.

Awareness of death—hearing its teaching—cuts through the subtle clinging at the core of our experience. It cuts through our self-clinging and our clinging to others. This may sound harsh, but all that clinging has not really helped us or anyone else. Our clinging to others may have the appearance of real caring, but it is based on fear and an attempt to freeze and control life. It is a way of tuning out death and pulling back from the intensity of life. But if we develop more ease with our own impermanence and struggles with death, we can be more understanding of others and their struggles. We can connect with one another with greater genuineness and warmth.

Death turns out to be the teacher who releases us from fear. It’s the teacher that opens our hearts to a more free-flowing love and appreciation for life and one another. When we get stuck in self-importance and earnestness, death steps in. When we get caught in self-pity, death steps in. When we become complacent and take things for granted, death steps in.

Death spurs us forward with a sense of urgency and puts our preoccupations in perspective. Death lightens our clinging and mocks our pretensions. Death wakes us up. It is our most reliable teacher and most constant companion.

Complete Article HERE!