‘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!

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!

How death got cool

The latest death trend is a cross between hygge and Marie Kondo: a sign that dying well has become a defining obsession of our time.

By

[L]ast spring, at Green-Wood cemetery in Brooklyn, where the artist Jean-Michel Basquiat is buried, another conceptual artist, Sophie Calle, launched an installation called Here Lie the Secrets of the Visitors of Green-Wood Cemetery. For the next 25 years, anyone passing by will be able to write down their most intimate secrets and bury them in a grave designed by the artist. The cemetery also hosts moonlit tours, cocktail parties, dance performances, and even yoga classes.

Death is hot right now, and upbeat gatherings in cemeteries are just a small part of the trend. One of the chief desires of our time is to turn everything we touch into a reflection of who we are, how we live and how we want others to view us – and death is no exception. Once merely the inevitable, death has become a new bourgeois rite of passage that, much like weddings or births, must now be minutely planned and personalised. Not since the Victorian era’s fetishisation of death, with its all-black attire, elaborate mourning jewellery and seances, has death been so appealingly packaged. Every death must be in some way special and on-trend. Finally, the hipster can die as he lived.

If you fancy an environmentally friendly burial, you can choose to be wrapped in a biodegradable artisanal shroud, decorated to your specifications by the bespoke company Vale for $545. (It’s just $68 for pets.) Or you can be buried, as the celebrated California chef Alice Waters says she wants to be, in a burial pyjama suit seeded with mushrooms that help your body decompose more quickly. A few years ago, artist Jae Rhim Lee delivered a Ted talk while wearing one such suit – a black hooded one-piece threaded with white veins infused with mushroom spores. On stage, Lee cheerfully explained that she is training mushrooms to eat her when she dies by feeding them her hair, nails and dead skin so they recognise her body.

Artist Jae Rhim Lee giving a Ted talk in a special burial suit seeded with pollution-gobbling mushrooms.

For people less concerned about the environment and more worried about the terrifying prospect of dying alone, there are now solutions (or at least partial ones). You can hire a death doula, a trained professional who will assist at the end of life in the same catch-all manner that birth doulas are there during labour. You can request a home funeral, in which your friends and family pay their respects to your corpse in the comfort of your living room, with every detail as carefully planned as a wedding. And before that day arrives, you can discuss the facts of death with like-minded souls at a Death Cafe, a meeting of the global movement started by Jon Underwood in 2011 (who died last summer of acute promyelocytic leukaemia) as a way for people to gather and reflect on mortality.

One of the people pioneering this new way of approaching death is Caitlin Doughty, a young, Los Angeles-based mortician who looks like a lost member of the Addams Family. She has written a bestselling memoir, hosts a YouTube series called Ask a Mortician and has founded a “death acceptance collective” called The Order of the Good Death, whose youthful members promote positive approaches to mortality.

“It’s OK to be openly interested in death practices,” Doughty told me while driving through LA one afternoon last autumn. “It makes you an engaged human who cares about all aspects of life. Ghettoising it as an interest particular to goths, weirdos or people obsessed with murder creates a dearth of honest conversation about death in the western world.”

This growing interest in alternative “death practices” began as a way to skirt the commercialism and uniformity of the funeral industry. And it appeals to a diverse set of people. “This desire for a pine box in the ground brings together hippies and libertarians, stay-off-my-land gun owners, certain religious people, Trump voters who don’t want big business ignoring what they want,” Doughty said. “They might not all have the same back-to-the-earth vision, but it’s the same fight for their fundamental rights. They don’t want a bland corporate infrastructure to dictate what happens to their mortal remains and what represents their life.”

Given that the idea of rethinking death connects with millions of people who are tired of the rampant commercialism and homogeneity of modern life, it was only a matter of time before commercial interests caught on. Just as the Danish concept of hygge was sold – in the form of scented candles and hand-knitted woollen socks – to consumers looking for comfort in troubled times, there is gold, too, in our obsession with a good death.

[P]ulishers, in particular, have latched on to the trend. Books about death are nothing new, of course, but the pace at which they’re arriving seems to have accelerated. Last year saw the arrival of a stack of literary memoirs about death by authors such as Edwidge Danticat and Robert McCrum. In his memoir, My Father’s Wake, the writer Kevin Toolis explains why the Irish get death right, while Caitlin Doughty’s new book, From Here to Eternity: Travelling the World to Find the Good Death, explores the way cultures across the world, from Indonesia to Bolivia to Japan, approach death.

But perhaps it is not the Irish or the Bolivians who have perfected the art of dying well, but the Swedish. In recent months, thanks to a publisher-led media campaign, you may have come across the concept of döstädning, the Swedish practice of “death cleaning”. Death cleaning applies a simple formula to the process of dealing with our possessions before we die. In Marie Kondo’s The Life-Changing Magic of Tidying, a bestselling guide to tidying up your home, and thus your life, the essential question is whether a given object “sparks joy”. In death cleaning, it is “Will anyone I know be happier if I save this?”

It is easy to see the appeal. Death cleaning addresses many of the aspects of contemporary life that make us most anxious. For those who feel that they have accumulated too much stuff and that all this stuff is getting in the way of their spiritual development, it offers a practical guide to de-cluttering. For those who worry about their privacy or the prospect of relatives discovering their secrets, it offers sensible precautions. For those who fear a long, bewildered, incapacitated old age, it is a way of coping through clear-eyed preparation and understanding.

While Silicon Valley billionaires search for cures for death, the rest of us are just seeking ways of accepting death, ordering a long and messy old age and making peace with our relatives, who are already horrified at the idea of looking after us in our incontinent, incoherent dotage. The fact of living longer doesn’t just give us time to think about death, but also plunges us into chaos, sickness and confusion, and death cleaning seems a valiant attempt to counter this.

Death cleaning is a concept that has had passing mentions in Sweden, but it is not a well-known part of the national culture. In truth, it seems to be more talked about by foreigners who like to imagine Scandinavia as a place where people have life sorted out than it is by Swedes themselves. But even if Swedes rarely talk about döstädning, there is something authentic about the underlying philosophy. The Swedish ambassador to the US, Karin Olofsdotter, recently told the Washington Post that death cleaning is “almost like a biological thing to do”, the natural product of a society that prizes living independently, responsibly and thoughtfully, and whose homes reflect that ideal.

A friend of mine who works as a radio producer in Stockholm said: “My mother is döstädning incarnated. She has been in the mode of frenetic cleaning for couple of years now – she is 65 – [and thinks] throwing stuff out will make it easier for us children when she is no longer with us. She doesn’t want us to be left with difficult decisions about what to do with it and she doesn’t want personal stuff to get in the wrong hands. And ever since I was a teen she has forced me to get rid of stuff – my earliest paintings, old clothes, books I read as a child, memorabilia. Keeps telling me that it’s the best for everyone. I don’t know if it’s typically Swedish, but it is very, very rational and unsentimental.”

The well-funded Swedish welfare state enables elderly Swedes to live independently. “Perhaps this also adds to the sense that they feel they must get their things in order before they die, so that no one else should be responsible for it,” says Michael Booth, author of The Almost Nearly Perfect People, a cultural tour of Scandinavian countries. “Swedes are deeply, deeply responsible people. It is very important for a Swede to do things properly, not to be a burden on others, to take responsibility in this way. Swedes are very ‘proper’.”

According to Booth, the decluttering element of death cleaning “chimes with the general parsimony and minimalism of Lutheranism, which you find traces of throughout many aspects of Scandinavian culture. In Sweden especially, they value the ‘modern’ and ‘new’, and so, if you visit a council dump or recycling centre, you see some fairly eye-popping items discarded – stuff Brits would never throw away.”

Others are more sceptical about the notion that death cleaning is the product of a distinctly Swedish sensibility. “It sounds like a mind-body-spirit thing that could have come from anywhere,” says Robert Ferguson, author of Scandinavians: In Search of the Soul of the North, another book that tries to figure out the roots of our fascination with Scandinavia. “Actually I’m still waiting for the world to discover the joys of kalsarikänni, a Finnish word that means ‘drinking beer on your own at home in your underpants with no intention of going out’.”

[T]he book responsible for spreading the death-cleaning gospel is by Margareta Magnusson, a Swedish artist who describes herself as between “80 and 100”. The Gentle Art of Swedish Death Cleaning: How to Free Yourself and Your Family from a Lifetime of Clutter came out in English a few months ago. It is part practical guide to getting your affairs in order, part discourse on accepting the reality of death. Over the course of 38 very short chapters with titles such as If It Was Your Secret, Then Keep It That Way (or How to Death Clean Hidden, Dangerous and Secret Things), Magnusson sets out her pragmatic and upbeat approach to mortality. “Life will become more pleasant and comfortable if we get rid of some of the abundance,” she writes.

“The message was: we just have to accept that one day we will die,” said her literary agent, Susanna Lea. “Either our loved ones will begrudge us, or they will hold on to this wonderful memory and love us for sorting everything out. Which one do you want?”

As soon as Lea sent the book proposal out, publishers eagerly snapped it up. A German editor made an offer after just four hours. A couple of days later, it was sold to a publisher in Sweden, and then Lea took it to the 2016 Frankfurt book fair, the marketplace for international sales, and sold it to the UK, US and Australia. It is now being translated into 23 languages.

“Interestingly enough, the eastern Europeans have been the slowest to buy it,” said Lea. “They said: ‘We just don’t talk about death.’ I thought the Latin countries might not talk about death, but they completely got it.”

Margareta Magnusson, the author of The Gentle Art of Swedish Death Cleaning.

The title has been a challenge. Some countries balk at having death in the title of a book that is slim and small, and packaged like a gift book sold at check-out counters. Others struggle with translating the phrase itself. The Swedish just call their edition Döstädning (the subtitle translates as “not a sad story”). However, nettoyage de la mort does not work in French – they are going to call it instead La Vie en Ordre. The Germans get around it by giving it a title that translates as “Frau Magnusson’s Art of Putting Her Life in Order”.

As the book proposal appeared in the year that hygge and the decluttering guru Marie Kondo conquered the world, it’s not surprising that a book that could be pitched as “Marie Kondo does hygge” was a big hit with publishers. But Jamie Byng, head of Magnusson’s UK publisher, Canongate, strenuously rejects the comparison. “We were not looking for another Marie Kondo, fuck no,” he told me. “I was taken by the idea that this elderly Swedish lady had written a book about leaving this world gracefully and with as little mess as possible. There’s something of Swedish zen about it.”

Magnusson lives in an apartment in a large development in the Södermalm neighbourhood of Stockholm, not far from the upmarket raincoat brand Stutterheim (whose motto is “Swedish melancholy at its driest”), and shops that sell elegant, spare Scandinavian furniture. She’s tall and slender, wearing a striped French sailor-style shirt, faded jeans and trainers, with a grey bob and a long, oval-shaped face. Her most striking feature is her large, round, wet blue eyes. She looks healthy and spry and fashionable without trying hard, which fits the image of her as a mellow, slightly kooky but wise Scandinavian grandma who writes things such as: “Maybe Grandfather had ladies’ underwear in his drawer and maybe Grandma had a dildo in hers. But what does that matter now? They are no longer among us; if we liked them it really should be nothing for us to worry about.”

The first thing to note about Magnusson’s home is that it is not in any way minimalist. In her living room there are shelves of hundreds of books, and gentle abstract paintings by Magnusson herself on the walls. There are a surprising number of stuffed toys and masks from Asia (her late husband was Swedish but born in Japan, and the family lived in Singapore and Hong Kong as he moved frequently for work), presumably all of which have passed the making-people-happy test. The flat is packed with objects of sentimental value that have accrued around an elderly person who once lived in a larger home. It’s all cheerful and very, very neat.

Magnusson noted that Sweden used to be a country of big, quality companies that made things you might want to pass on to your children, or at least that lasted a very long time. “Swedish safety matches and Volvo – the safest car. Now, Sweden is just H&M and Ikea, stuff that doesn’t last more than five years if you’re lucky. It must have changed the culture in the country in a way, I think.”

She has a large collage of family photos hanging in her bedroom: a sister and brother, who are both dead, and her husband, who died in his mid-70s. Her book suggests that sorting through photographs is not the place to begin your death-cleaning process – too many memories to get swept up in, and too much sentiment. Better to start with the kitchen. But when it’s time to declutter your photos, she advises, be ruthless. One of her points is that if you don’t know the names of the people in a photo, feed them to a shredder.

Magnusson has a way, when talking about her life, to assume the mode of a literary narrator. Everything she says sounds like a first line to a self-consciously ruminative memoir. “I grew up in Gothenburg on Sweden’s west coast, and was born on New Year’s Eve,” she told me. “I think I was born in a happy way. It was happy, I don’t know. It started happy.”

An ecological coffin under construction.

Her pragmatic nature is such that she seemed almost frustrated explaining simple ideas about death and decluttering to a non-Swede such as me. She plans to be cremated when she dies, which is common in Sweden, and for there to be a memorial plaque her family can visit. “I don’t believe in life after death. When I’m dead, I will be dead,” she said.

“To think that you cannot handle yourself, that you think you don’t know what’s going to happen – that must be terrible. I don’t have that fear. I almost died some years ago.” She had woken up in the middle of the night with some kind of heart trouble. “On the way to the hospital, I was just gone,” she said. “Then I really realised that I didn’t see any light in tunnels. I was so happy when I woke up, but I realised that nothing will happen.”

There’s a tipping point in your life, she said, when you start attending more funerals than weddings. “Maybe in the 50s or 60s it starts to happen: my parents, my mother-in-law, my husband and friends,” she said. By that point, Magnusson’s daughter Jane, who lives just across the road, had come over.

“We had a funeral on Friday. It was actually very pleasant,” said Jane.

“Yes, it was very nice. You meet a lot of friends that you had together,” said Magnusson.

“You get to have a good cry,” Jane said.

“Yeah, you have a good cry,” said Magnusson. “But you have also a good laugh.”

[S]wedish death cleaning has found a kind of American counterpart in the rise of a pair of young men from Ohio who call themselves the Minimalists. When one of the duo, Joshua Fields Millburn, lost his mother in 2009, he was left wondering what to do with everything she had amassed in her small apartment. In the end, he decided to donate it all to charity. It was something of an epiphany for Millburn, who began throwing out one thing he owned every day for a month. What would go on to become the foundational principle of his brand of minimalism dawned on him: “Our memories are not inside of things; they’re inside of us.” From that moment almost a decade ago, Millburn and his friend Ryan Nicodemus have built a Minimalist empire – books, podcasts, documentaries, speaking tours – based on the idea that accumulating stuff is simply what we do to distract ourselves from our real problems: lack of satisfaction with work, love, life and, ultimately a way to deny the inevitability of death.

Isn’t all decluttering about death? I asked Doughty, the mortician. “It is a little death to give away a keepsake or an item,” she agreed. “For most people to admit that they should be keeping track of stuff and getting rid of things is extremely threatening to their sense of self and idea as mortal.”

For many of us, the main way we try to look at death is by not looking at it. My own parents constantly talk about how they want their dead bodies to be dealt with – my mother has gone from wanting her cremains to be flushed down the toilet to wanting her corpse fed to dogs – and yet the elaborate plans for death are a way around dealing with it. My father won’t even write a will, instead preferring to phone me at odd hours from California to get me to make solemn promises that, after he is gone, I will do or will not do certain things (such as keeping his house in the family, or making sure to invite specific people to his funeral).

This highly developed awareness of their own mortality and careful consideration of how to dispose of their remains, combined with a total lack of planning for what happens in the weeks, months and years after the funeral, sometimes feels like my parents’ way of ensuring that their large personalities will gently haunt me from the afterlife. Or, to put it more politely, it seems like a way to guarantee their presence in my life as long as possible.

Even surrounded by loved ones, you check out alone’ … mortician Caitlin Doughty.

But I also sympathise with them. Both of my parents are 66, and will hopefully be around for some time. Dealing with one’s own legacy is a stark business. It involves accepting that you are the one who cares most – or perhaps the only person who cares at all – about your own legacy. At the same time, it means confronting hard questions about the people you will leave behind. Will your last gift to your loved ones be to leave them a few valuable possessions, or a photo album full of memories, or simply the great favour of not burdening them with having to sort through all the stuff you accumulated over your lifetime?

Doughty says that any parent who is “unwilling to have a basic conversation about death with your desperate kids – that’s a profound unkindness”. At 33, she has a will and a plan for what will happen to her business and the small cabin she owns when she dies. That has brought her comfort, she says. At 40, I don’t have any plans in place for my own death, unless you count drunkenly asking various friends to promise they would take my dog in the event that she becomes an orphan. Perhaps I am more like my parents than I would like to think.

Planning for death is hard, because it means that one must accept that you are the one who cares most, or at all, about your own legacy. To plan for death is to accept both ideas simultaneously. “There might be no one at your bedside. You might not be found for two days and eaten by cats. That’s all in the realm of possibility,” Doughty said. “But even surrounded by loved ones, you check out alone. This is your personal journey to go on.”

The idea of death as a solo journey is redolent of the language of wellness: the way people talk about getting into their fitness or diet or mindfulness routines. This new view of death borrows heavily from another trendy concept: self-care, the idea that looking after oneself is a political act, shoring yourself up to be able to keep fighting and facing the world. Self-care, too, has been co-opted to be about treating yourself to bath products, massages, face masks and yoga retreats – granting yourself an excuse to make it OK to buy stuff. The commercialisation of death is the inevitable sequel to the monetisation of every other part of life.

Death cleaning is possibly more potent than other wellbeing trends in that it taps into deep emotions: fear, guilt, regret. The death industry exploits people’s fears of inadequacy. You can’t just die – at the very least, you’ll need to invest in a house-tidying consultant, a death doula, an environmentally sound bespoke shroud, and a home funeral, to prove just how well you lived.

Complete Article HERE!

How does assisting with suicide affect physicians?

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[W]hen my mother was in her final months, suffering from a heart failure and other problems, she called me to her bedside with a pained expression. She took my hand and asked plaintively, “How do I get out of this mess?”

As a physician, I dreaded the question that might follow: Would I help her end her life by prescribing a lethal drug?

Fortunately for me, my mother tolerated her final weeks at home, with the help of hospice nurses and occasional palliative medication. She never raised the thorny question of what is variously termed “medical aid in dying” or “physician-assisted suicide.”

As a son and family member who has witnessed the difficult final days of parents and loved ones, I can understand why support for MAID/PAS is growing among the general public. But as a physician and medical ethicist, I believe that MAID/PAS flies in the face of a 2,000-year imperative of Hippocratic medicine: “Do no harm to the patient.”

Studies point out that even many doctors who actually participate in MAID/PAS remain uneasy or “conflicted” about it. In this piece, I explore their ambivalence.

Assisted suicides

In discussing end-of-life issues, both the general public and physicians themselves need to distinguish three different approaches.

MAID/PAS involves a physician’s providing the patient with a prescription of a lethal drug that the patient could take anytime to end life. In contrast, active euthanasia or “mercy killing” involves causing the death of a person, typically through a lethal injection given by a physician. Finally, the term “passive euthanasia” refers to hastening the death of a terminally ill person by removing some vital form of support. An example would be disconnecting a respirator.

Increasing international acceptance

In the U.S. some form of legislatively approved MAID/PAS (but not active euthanasia) is legal in five states and the District of Columbia. In my home state – following a passionate debate – the Massachusetts Medical Society recently decided to rescind its long-held opposition to the practice. MMS has taken a position of “neutral engagement,” which it claims will allow it to “serve as a medical and scientific resource … that will support shared decision making between terminally ill patients and their trusted physicians.”

Physician-assisted suicide is finding more acceptance.

In a few countries, MAID/PAS has grown increasingly common. In Canada, for example, MAID/PAS was legalized in 2016. In Belgium and the Netherlands, both active euthanasia and physician-assisted suicide are permitted by law, even for patients whose illnesses may be treatable, as with major depression; and whose informed consent may be compromised, as in Alzheimer’s disease. In the Netherlands, a proposed “Completed Life Bill” would allow any persons age 75 or over who decide their life is “complete” to be euthanized – even if the person is otherwise healthy.

U.S. physician response

Among U.S. physicians, MAID/PAS remains controversial, but national data point to its increasing acceptance. A report published in December 2016 found 57 percent of doctors agreed that physician-assisted death should be available to the terminally ill – up from 54 percent in 2014 and 46 percent in 2010.

Perhaps this trend is not surprising. After all, what sort of physician would want to deny dying patients the option of ending their suffering and avoiding an agonizing, painful death?

But this question is misleading. Most persons requesting PAS are not actively experiencing extreme suffering or inadequate pain control. Data from the Washington and Oregon PAS programs show that most patients choose PAS because they fear loss of dignity and control over their own lives.

Some physicians feel conflicted

Physicians who carry out assisted suicide have a wide variety of emotional and psychological responses. In a structured, in-depth telephone interview survey of 38 U.S. oncologists who reported participating in euthanasia or PAS, more than half of the physicians received “comfort” from having carried out euthanasia or PAS.

“Comfort” was not explicitly defined, but, for example, these physicians felt that they had helped patients end their lives in the way the patients wished. However, nearly a quarter of the physicians regretted their actions. Another 16 percent reported that the emotional burden of performing euthanasia or PAS adversely affected their medical practice.

For example, one physician felt so “burned out” that he moved from the city in which he was practicing to a small town.

Other data support the observation that MAID/PAS can be emotionally disturbing to the physician.

Kenneth R. Stevens Jr., an emeritus professor at Oregon Health and Science University, reported that for some physicians in Oregon, participation in PAS was very stressful. For example, in 1998, the first year of Oregon’s “Death with Dignity Act,” 14 physicians wrote prescriptions for lethal medications for the 15 patients who died from physician-assisted suicide.

The state’s annual 1998 report observed that:

“For some of these physicians, the process of participating in physician-assisted suicide exacted a large emotional toll, as reflected by such comments as, ‘It was an excruciating thing to do … it made me rethink life’s priorities,’ ‘This was really hard on me, especially being there when he took the pills,’ and ‘This had a tremendous emotional impact.’”

Similarly, reactions among European doctors suggest that PAS and euthanasia often provoke strong negative feelings.

Why the discomfort?

Feeling conflicted.

As a physician and medical ethicist, I am opposed to any form of physician assistance with a patient’s suicide. Furthermore, I believe that the term “medical aid in dying” allows physicians to avoid the harsh truth that they are helping patients kill themselves. This is also the view of the very influential American College of Physicians.

I believe that the ambivalence and discomfort experienced by a substantial percentage of PAS-participating physicians is directly connected to the Hippocratic Oath – arguably, the most important foundational document in medical ethics. The Oath clearly states:

“I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect.”

In 5th century BC Greece, Hippocrates was something of a revolutionary in this respect. As the classicist and medical historian, Ludwig Edelstein has pointed out some non-Hippocratic physicians probably did provide poisons to their dying patients, in order to spare them protracted suffering. Hippocrates opposed this practice, though he did not believe that terminally ill patients should be exposed to unnecessary and futile medical treatment.

Palliative care specialist Ira Byock has observed that:

“From its very inception, the profession of medicine has formally prohibited its members from using their special knowledge to cause death or harm to others. This was – and is – a necessary protection so that the power of medicine is not used against vulnerable people.”

Indeed, when patients nearing the end of life express fears of losing control, or being deprived of dignity, compassionate and supportive counseling is called for – not assistance in committing suicide.

To be sure, comprehensive palliative care, including home hospice nursing, should be provided to the subset of terminally ill patients who require pain relief. But as physician and ethicist Leon Kass has put it:

“We must care for the dying, not make them dead.”

Complete Article HERE!

Assisted dying in religious facilities means tough choices for families

Barry Hyman always swore he’d die peacefully on his own terms. But living in a faith-based nursing home put his family in a difficult position to help him

Lola Hyman and her son Jackson look over photographs of Lola’s father Barry Hyman at their home in Vancouver.

By

[O]n the night that 83-year-old Barry Hyman was to receive a doctor-assisted death, his daughters were on edge, petrified that at any moment someone would burst through the door and stop them from granting their father his final wish.

Enfeebled by a stroke and diagnosed with lung cancer, Mr. Hyman had asked to die at home.

But his home at the time was a publicly funded Jewish nursing home in Vancouver whose board forbade assisted deaths on site, saying the newly legal practice violated the values and traditions of the Jewish faith.

That left Lola Hyman, the younger of Mr. Hyman’s two daughters and his main caregiver, with a choice.

She could transfer her father to an unfamiliar clinic to die, or she could sneak Ellen Wiebe, one of the country’s leading doctor-advocates of assisted dying, into her father’s room to help him die in his own bed.

Lola and the rest of her immediate family settled on the latter. They would deal with the fallout later.

Their first priority was making sure that Mr. Hyman died peacefully on his own terms, as he’d always sworn he would.

“The room was very quiet. We just held his hand and stared at him,” Lola said. “My sister was sobbing, just sobbing. I was a stone. A complete stone. My heart was racing that someone would open the door.”

nstead of focusing on their goodbyes, the Hyman family spent the last moments of Barry’s life worrying that they would be discovered and prevented from completing a legal medical procedure inside a publicly funded care facility.

Their story is an extreme example of the choices that grievously ill Canadians still face – 18 months after Ottawa’s assisted-dying law took effect – if they wind up near the end of their lives in a hospital or nursing home that refuses to allow assisted dying, either for religious reasons, or because the facility has simply decided to say no.

It is not clear if these institutions enjoy the same Charter-protected religious freedoms as individuals when it comes to refusing assisted deaths because the issue has not yet been tested in court.

In the vast majority of cases, such patients are transferred to another facility to die. But it isn’t always easy to find a place to send them.

Sometimes overcrowded secular hospitals say no. Sometimes the only hospital or nursing home in town is faith-based.

Other times, an unconventional location has to suffice: In Vancouver, Dr. Wiebe has opened her women’s health clinic after-hours for 34 assisted deaths, which means that in some cases, Catholic health-care facilities have transferred patients to an abortion clinic to die.

Canada’s religious health-care organizations, which have been tending to the sick in this country since long before Medicare, say they are doing their best to support terminally ill patients without betraying their own faith, offering options like palliative sedation to make patients’ natural deaths as painless as possible.

Some have softened their objections to the early parts of the medical-aid-in-dying process, allowing outside doctors to come in and conduct eligibility assessments on patients who are too fragile to be transferred for an appointment.

But when it comes to actual physician-assisted deaths, religious facilities – be they Jewish, Baptist, Catholic or otherwise – are refusing to allow the practice on their grounds.

“The core issue … is that Catholic and faith-based organizations are committed to the inherent dignity of every human life and would never intentionally hasten the end of a life,” said Christopher De Bono, vice-president of mission, ethics, spirituality and indigenous wellness at Providence Health Care, a Catholic health-care network that includes St. Paul’s Hospital in downtown Vancouver.

Nobody on either side of Canada’s assisted-dying divide is arguing that individual doctors or nurses should have to participate in assisted dying if they object to it, said Shanaaz Gokool, the chief executive officer of the advocacy group Dying with Dignity Canada.

But she is incensed that every province with faith-based health-care organizations except Quebec has allowed taxpayer-funded hospitals and nursing homes to refuse requests for a procedure the Supreme Court of Canada has declared a Charter-protected right. (And even Quebec allows some hospices to opt out.)

“Why are we making this so hard for people when it’s the one medical treatment that you have a legal right to in this country?” she said.

Throughout Barry Hyman’s long and colourful life – through founding a small publishing company, raising two daughters, divorcing twice, studying history and English literature at Simon Fraser University as a senior citizen and logging countless hours at casino poker tables – he told anyone who would listen that he had no desire to linger if his health failed.

“Ever since I can remember, and I mean over 50 years, my father has always told me that if he ever got to the point that he no longer had the ability to comprehend, the ability to socialize, the ability to do the things that he wanted to do … he was done,” said Leah Hyman, 54, Mr. Hyman’s eldest daughter.

Mr. Hyman, a Winnipeg-born businessman, dreaded one day losing the vitality that infused his life, first as a young waiter on the railroad, then as the founder of an Edmonton printing company that churned out small Jewish newspapers and government directories.

He also owned pool halls, nightclubs and a roller rink. He was still on J-date, the online Jewish matchmaking service, in his 80s.

“He just rolled up his sleeves and dove into everything,” Lola said – including introducing his only grandson, Jackson Doyle-Hyman, now 19, to the worlds of business and (responsible) gambling.

Mr. Hyman once took a kindergarten-aged Jackson to the track and showed him how to bet $10 at a time on the top horses.

Lola, now 51, later found cash spilling out of the pockets of Jackson’s little navy polo jacket.

As he grew older, Jackson often tagged along to business meetings where ad space was traded for car parts or hotel stays, a practice called “contra.”

Barry Hyman holds his grandson, Jackson, in 1998.

“We always joked that he could have built a Ferrari with all the car parts he got contra for,” Jackson said.

Mr. Hyman was already a diabetic with congestive heart failure when he was diagnosed with lung cancer early in 2016.

But his health didn’t really begin to deteriorate until an ill-fated trip to a tanning salon to treat his psoriasis.

The tanning bed left Mr. Hyman with a burn on his left foot no bigger than a quarter. The wound festered for nearly a year, despite every effort to heal it.

By October of 2016, doctors were talking about amputating his leg. Mr. Hyman instead chose to undergo a procedure in which surgeons bypassed a clogged leg artery that was keeping his foot from healing.

Ten days later he had a stroke, a known risk of the operation.

His mind was still sharp, but the stroke impaired his speech – a devastating blow for a man who adored the English language and insisted upon its correct use.

“This was a guy who read two papers a day and did the New York Times crossword,” Lola said, “And he no longer could do any of that.”

It was clear to Lola that her father could not keep living in his own apartment, as he had before the stroke.

The family’s first choice was the Louis Brier Home and Hospital, Vancouver’s only Jewish nursing home. But it was full.

Mr. Hyman during a portaging trip through the Northwest Territories in 1985.

Reluctantly, Mr. Hyman accepted a spot at St. Vincent’s: Brock Fahrni, a Catholic home where he shared a room with three other men.

Mr. Hyman and his family made a preliminary inquiry about assisted death with a doctor there, but it went nowhere.

When, in April of 2017, a bed in a private room became available at the Louis Brier Home, Lola leaped at the chance.

She knew that, like the Catholic home her father would be leaving, the Louis Brier did not permit assisted deaths on site.

She hoped that moving her father to a nicer place where he could live among his Jewish peers and Jewish culture would persuade him to abandon his talk of assisted death.

But Mr. Hyman wouldn’t let go of the idea. Although Lola didn’t want to lose her father, she was willing to help him fulfill his final wish.

On April 26, a week after moving to the Louis Brier, Mr. Hyman and Lola met Dr. Wiebe at her office.

A few hours later, Dr. Wiebe e-mailed Lola to say her father’s constellation of health problems made him eligible for an assisted death.

Dr. Ellen Wiebe sits in the room where she helps those wanting medically assisted deaths at the Willow Women’s Clinic in Vancouver.

When the Supreme Court of Canada struck down the Criminal Code prohibition on physician-assisted dying in February of 2015, the judgment made it clear that invalidating the law would not compel doctors to help their patients die.

The court was silent, however, on whether entire health-care organizations could bow out of medical aid in dying.

Parliament passed a law that was silent on the question, too, even though a special joint committee of the House and Senate had recommended that Ottawa work with the provinces to ensure all publicly funded health-care facilities provide medical assistance in dying.

Jay Aubrey, a lawyer with the British Columbia Civil Liberties Association, the group that helped topple the ban on assisted dying, predicted that a legal challenge against an objecting religious health-care facility such as the Louis Brier Home would be straightforward.

The home is 67-per-cent publicly funded and is therefore “acting in the shoes of government,” she said. “That’s why they’re bound by the Constitution.”

Ms. Aubrey sent a letter to the Louis Brier Home last May making that case on Mr. Hyman’s behalf.

But Richard Moon, a University of Windsor law professor and an expert in religious-freedom cases, said past precedents suggest public funding alone is not enough to saddle a third-party like a nursing-home operator with the constitutional duties of a government.

On the contrary, he said, religious health-care organizations could try – and might succeed, under the right circumstances – to claim they are entitled to the same Charter-protected religious freedoms as individuals, allowing them to rebuff government orders that breach their beliefs.

Prof. Moon said there could be a simple way around that: Provincial governments could withhold funding from health-care organizations that do not allow assisted dying, so long as they applied the rule without discrimination.

“It’s a matter of nerve here, isn’t it?” he said. “Is the government really willing to withdraw funding from these organizations? Are these organizations really willing to risk the loss of funding?”

So far, everywhere outside Quebec, the answer is no.

Grievously ill patients are instead being transferred out of non-participating institutions in numbers that are difficult to determine at a national level.

British Columbia’s five regional health authorities together logged a total of 61 transfers as of the beginning of December. Alberta has recorded 42; Saskatchewan is aware of at least 11; Manitoba has recorded eight.

The Maritime provinces say they are either not aware of any such transfers or are not tracking them.

The outlier is Ontario. Not only has Kathleen Wynne’s government declined to track transfers, it passed a law exempting hospitals, nursing homes and hospices from freedom-of-information requests about medical aid in dying, a move the province’s privacy commissioner denounced.

The blackout, which a spokesman for Ontario’s Ministry of Health and Long-Term Care said was enacted to protect health-care workers and institutions that provide assisted dying, makes it impossible to say how many hospitals in Canada’s most populous province are refusing to allow the practice.

But ministry officials have hazarded a guess: As many as 27 publicly funded Ontario hospitals – one out of every five in the province – would “potentially object to [medical aid in dying] based on their stated religious/ideological values,” according to an internal briefing note that Dying with Dignity obtained through a freedom-of-information request.

“There are 7 cities/towns in Ontario with potentially objecting hospitals that have no alternative hospitals within 100 km. Moreover, there are 4 other cities/towns with only one neutral hospital for the whole region.”

In Vancouver, when patients are looking for an alternative location to receive an assisted death, one option is Dr. Wiebe’s Willow Women’s Clinic on the 10th floor of a downtown high-rise.

The space has much to recommend it, according to Dr. Wiebe: wheelchair access, a separate waiting room for family and, in the larger of the two rooms she reconfigures for assisted deaths, a spectacular view of the mountains.

Still, there’s a makeshift feel to the arrangement. Patients take their last breaths on a bedsheet-draped patio recliner, the same piece of furniture on which the clinic’s regular clients recover after having an intrauterine device inserted.

In one “dreadful” case, a man who wanted to die without his family present was transferred from a Catholic facility and mistakenly left outside by a medical transportation service, next to the pounding of jackhammers, Dr. Wiebe said.

“We need to get to [the government] and say, ‘This is completely unreasonable – you can change it with the stroke of a pen,'” Dr. Wiebe said of the B.C. NDP’s decision to continue allowing publicly funded faith-based institutions to opt out of assisted dying.

B.C. Health Minister Adrian Dix declined an interview request for this story.

A spokeswoman for the Ministry of Health emphasized that all of the regional health authorities in B.C. have care co-ordination services that help smooth the transition for patients who have to move from one place to another for an assisted death.

She said the provincial government has “no plans to terminate” a long-standing agreement that allows members of a group called the Denominational Health Association (DHA) to refuse to provide services that are inconsistent with their religious values.

The DHA represents 44 health-care facilities in B.C., including the Louis Brier Home, where Barry Hyman wanted to die.


The entrance to the Jewish faith-based Louis Brier Home and Hospital in Vancouver.

A few weeks after meeting Dr. Wiebe, Lola Hyman e-mailed David Keselman, the chief executive officer of the Louis Brier Home, to formally ask that her father be allowed to die on site, despite the home’s policy.

Mr. Keselman sent his formal reply to Lola on May 25. “Quite some time ago,” he wrote, “the governing board, along with the leadership of Louis Brier, decided that Louis Brier will provide care and services to the residents according to the Orthodox Jewish stream.”

The home was willing to allow eligibility assessments, he continued, but not assisted death itself.

“Lola I realize that this may not be what you would have liked or have wanted to hear,” Mr. Keselman wrote. “If so I regret this.”

For weeks afterward, Lola weighed her options. She didn’t like the idea of sending her father to die at Dr. Wiebe’s office or an unfamiliar seniors’ home suggested by the care co-ordination service at Vancouver Coastal Health.

“The thought of doing my father’s provision in a clinical setting [with a bed] that looked like a dentist’s chair was so unsettling for me,” she said. “I didn’t share it with my father. I did not burden him with any of the logistics. I just said, ‘When you want it to happen, Dad, it will happen.'”

Mr. Hyman ultimately decided to die on June 29.

Leah and her wife, Tori, drove up from their home in Oregon that day to be with Lola and Jackson in Mr. Hyman’s room.

Early in the evening, Lola went to the front door of the nursing home to welcome Dr. Wiebe and a nurse as though they were old friends paying a visit.

They hid their medical equipment and lethal drugs in oversized bags.

Dr. Wiebe, her nurse and Lola went in to Mr. Hyman’s room and shut the door. Leah, Tori and Jackson stood guard outside.

When a nurse from the home came by to try to give Mr. Hyman his regular medications, Leah offered to deliver the pills, shooing the nurse away with a forced joke or two as though she were not minutes away from watching her father die.

“It was rough,” she recalled, crying. “I was not the best daughter. We just didn’t communicate well. We loved each other and we knew each other and we were there for each other. But this was the one thing I was going to make sure that we did, that we followed through on. He was going to go the way that he wanted to go.”

When Dr. Wiebe was ready to begin injecting the medications, Leah, Tori and Jackson came in and joined Lola at Mr. Hyman’s bedside.

He died peacefully in about 10 minutes that felt much longer to his family. “I’ll never forget looking at the door all the time,” Leah said, “terrified that someone was going to come in.”

In the end, nobody interrupted Mr. Hyman’s death. Dr. Wiebe filled out the death certificate, gave it to Lola, and left.

About 20 minutes later, Lola approached the home’s nursing station and did something she instantly regretted: She told them her father had died, but didn’t say how.

“I was frozen,” she said. “If I could go back, I would have walked up to that nursing station and said, ‘Dad passed of [medical aid in dying],’ but I can’t imagine what I would have been bombarded with as Dr. Wiebe was getting into her car.”

The next morning, after Dr. Wiebe reported the details of the case to Vancouver Coastal Health, Lola sent the Louis Brier Home a copy of Mr. Hyman’s death certificate.

The aftermath of Mr. Hyman’s death was hard on the home’s staff, especially the front-line workers who were initially puzzled by his unexpected death, Mr. Keselman said.

“We had no opportunity to communicate with the staff, to prepare them, to explain anything,” he said. “It was very traumatic.”

Mark Rozenberg, the chair of the ethics committee of Louis Brier’s board, emphasized that the home makes no secret of its opposition to assisted dying.

“Anyone who comes here knows what our policy is,” he said. “And if they don’t like the policy, they should go somewhere else.”

The home has since filed a formal complaint against Dr. Wiebe with the College of Physicians and Surgeons of British Columbia, the regulator for doctors in the province.

The complaint does not faze Dr. Wiebe; she is confident the college will see she was fulfilling her patient’s wish to die at home. (A college spokeswoman declined to comment.)

But Lola is heartsick at the thought of Dr. Wiebe in trouble, just as she is heartsick about having upset the front-line staff at Louis Brier.

None of this – including the stress her family experienced on the evening of Mr. Hyman’s death – would have happened if the government compelled all publicly funded health-care facilities to allow assisted dying, Lola said.

“Everyone is entitled to their religious beliefs and traditions and customs,” she said. “But when it comes to somebody who is very sick and dying, we need to have a different approach.”

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