End-Of-Life Care Is A New Beginning For Some Homeless Patients

by Mariana Dale

[I]nside a medical care facility in central Phoenix there’s a small chapel with frosted glass windows.

On the wall there’s more than a dozen framed photos of smiling faces. These are the people who have passed on here; many were in the final stages of their life.

James Martz was diagnosed with lung cancer in 2017 and hit rock bottom before getting help at Circle the City.

“They all brought their gifts to this world and they ended up in a place where they had no one,” said Lin Sue Cooney, Hospice of the Valley Community Engagement director. “It’s our collective responsibility as a community to make sure that they have dignity and comfort at the end of life.”

The medical care center Circle the City has 50 beds to care for the homeless, and several are reserved for hospice patients. Medicaid can pay for end-of life-care and even those who can’t pay anything are still treated.

The number of homeless older Americans is rising.

The state’s largest emergency shelter, Central Arizona Shelter Services, known as CASS, saw 423 clients over age 62 last year.

CEO Lisa Glow said the oldest, 89, came into the shelter pushing a walker. Her son was taking her pension and she was homeless.

“There’s vulnerability to fraud, vulnerability to disease, vulnerability to abuse and being taken advantage of,” Glow said. She said there aren’t enough resources at CASS or in the Valley to handle the predicted influx of older people who will end up on the streets and in poor health.

“Being an emergency shelter, people have to take care of their basic daily living needs,” Glow said.

Jesus Tovar, 67, was discharged from the hospital to Circle the City.

Me sufre mucho en la calle, mucho frío, llueve, a veces no tienes que comer.” Tovar said he suffered a lot in the streets; it was cold, it rained and sometimes he didn’t have anything to eat. Tovar is diabetic and has problems with his lungs and heart.

His voice became thick with emotion when he talked about life on the street.

Aquí tienes cama. Te dan tus medicinas.” Here there’s a bed, they give you your medicine. It’s like another family, Tovar said. “Aquí tiene como otro familia.

Tovar is also working toward connecting with his own family through a social worker at the center.

Jesus Tovar said he became disconnected with his family when he lived on the streets. He hopes to mend their relationship with the help of a social worker at Circle the City.

“With that aging comes an inherent need for better end of life care and we have to be able to rise to that challenge,” said Brandon Clark, Circle the City CEO.

“When people come here on hospice they frequently have no one,” Clark said. “It’s rare they have no one when they leave this world.”

‘Pride almost killed me’

Almost everything James Martz is wearing from his UnderArmor sweatshirt to his tennis shoes is new, at least to him.

A chunky silver ring on his right hand is one of the only material possessions Martz still has from his “old life.” It represented his time as a member of the North American Hunting Club.

“Pride almost killed me.” Martz said it’s what kept him from asking for help earlier.

Martz can list the events that lead to rock bottom — drug use, an eviction, a pneumonia diagnosis that revealed lung cancer, chemotherapy.

“It would make me throw up, the other thing,” Martz said grimacing. “You didn’t want to eat. You wanted to sleep all the time.”

In September, Martz said his oncologist gave him six to nine months to live. 

Around that time he was sleeping in his broken down 1993 Oldsmobile Cutlass in a strip mall parking lot in Mesa. Eventually police kicked him out after the center’s owner complained.

“I just grabbed my meds and anything essential and just walked off the property,” Martz said. He walked until the skin on his feet bubbled into blisters. A hospital covered the wounds with salve and discharged him.

“I got out of the hospital and I tried to get out of the wheelchair they wheeled me in and I couldn’t even stand up,” Martz said. Then he remembered he had a number for Hospice of the Valley. 

“He was very sick, sad, uncertain of the future, some anxiety and I think he just didn’t know what was going to happen,” said Kim Despres, a program director at Circle the City where Martz ended up.

RELATED: KJZZ’s Special Series, Homeless In Plain Sight

Homeless people can recover there when they’re not sick enough to stay in a hospital, but not well enough to be on the streets.

It’s also one of the only places that provides end-of-life care for people who have nowhere else to go. James Martz had decided he was done with chemotherapy and entered hospice there.

Hospice of the Valley took care of 18,500 patients and family members last year. It’s just one of dozens of hospice organizations in the Valley.

Complete Article HERE!

Americans are pack rats. Swedes have the solution: ‘Death cleaning.’

by Jura Koncius

[I]f your family doesn’t want your stuff when you’re alive, they sure won’t want it when you’re dead.

That’s the blunt assessment of yet another self-help author from abroad who is trying to get Americans, who have an addiction to collecting and storage units, to clean up their acts.

The latest volley in the decluttering business comes from Stockholm, where 80-ish artist Margareta Magnusson has just published a slim yet sage volume, “The Gentle Art of Swedish Death Cleaning.” The book will be published in the United States in January.

While Japanese item-control diva Marie Kondo gave us strict instructions to keep only things that spark joy, Magnusson’s book is straightforward and unsentimental (with a bit of humor). The main message from this mother of five is: Take responsibility for your items and don’t leave them as a burden for family and friends. It’s not fair. Magnusson says you can keep things that evoke good memories; there are no hard-and-fast rules such as folding your remaining T-shirts to stand upright in your drawers, as dictated by the KonMari method.

The concept of decluttering before you die, a process called “dostadning,” is part of Swedish culture. (It comes from the Swedish words for death and cleaning.) Karin Olofsdotter, 51, the Swedish ambassador to the United States, says her mother and father, who are in their 80s, are in the midst of it back home.

“My parents and their friends are death cleaning, and we all kind of joke about it,” Olofsdotter says. “It’s almost like a biological thing to do.” Olofsdotter says part of Swedish culture is living independently and never being a burden to anyone. How you keep your home is a statement of that.

Magnusson, who has moved 17 times, says women often end up doing the death cleaning. After her husband died, she had to declutter their house; it took her almost a year before she could downsize to a two-room apartment. She says that although it felt overwhelming, she is glad she did it herself, as her husband would have wanted to keep everything and her kids would have disagreed about what to keep and what to toss. This way, she made her own decisions. Now she continues to do it on a regular basis.

Magnusson suggests that age 65 is a good time to start death cleaning, but the process is freeing at any age.

A few of her tips: Don’t start with your photos, as you’ll get bogged down in your memories and never accomplish anything. Make sure you keep a book of passwords for your heirs. Give away nice things you don’t want as gifts, such as china or table linens or books, as opposed to buying new items. Keep a separate box of things that matter only to you, and label it to be tossed upon your death. It’s okay to keep a beloved stuffed animal or two.

Magnusson and one of her daughters filmed a video in which she talks about why she decluttered and how it’s not a sad process, but more of a relief. Her daughter asks whether her mom would help her begin death cleaning. They go to a storage locker overflowing with luggage and clothes and blankets topped by a garden gnome.

“Oh, my God. What are you going to do with all this crap?” her mother says in perfect English, taking a look around. They discuss how long it’s going to take.

“You are never ready with your death cleaning because you don’t know when you are going to die,” Magnusson says. “So it goes on and on.”

When you are dead, then it stops, they agree.

“Finally,” Magnusson says.

Complete Article HERE!

Better Angels

Death with dignity advocate Bruce Wilson, facing his end, wants you to know he’s grateful

Pulmonologist Glenn Ragalie (right) says goodbye to former colleague and cardiologist turned hospice physician Bruce Wilson (foreground) after visiting Tuesday, January 16, 2018 at Froedtert Hospital in Wauwatosa, Wis. Wilson has end stage pancreatic cancer.

By

[N]ot long after he wrote that, Bruce became a hospice care physician. He has dedicated himself to nudging, sometimes dragging, his medical colleagues in particular and the public in general to stop, take a deep breath and talk about how we would like to handle our inevitable demise.

Last February, Bruce was diagnosed with pancreatic cancer.

In the months that followed, the disease proved to be indifferent to chemotherapy and beyond surgical intervention.

Bruce, 66, is home with Barb, his wife of almost 34 years. If all goes as hoped, that is where he will die.

“People say to me, ‘This must be so surreal,’” he said during a recent week of in-patient treatment at Froedtert Hospital.

(Bruce is not opposed to end-of-life medical intervention. Doctors, he says, have a very important part to play in improving the quality of their patients’ final days. What he is opposed to are ill-informed medical decisions based on fear and desperation that too often merely extend a dying person’s misery.)

“And you know, it is sort of odd. I’m sitting in the front row watching myself. It’s afforded me the opportunity to be right square in the middle of it and say, ‘OK. How am I going to react to this reality?’ ”

Bruce, in these final days, has plenty to say about death and dying, but here’s the main thing he wants people to know:

“I am so grateful.”

He’s grateful that he has had time to love, to admire, to grieve, to celebrate, to forgive and to be forgiven by the people he cares about most.

“You can’t have that when you have the symptoms of a very aggressive cancer, and you are being eaten alive from the inside and you’re in horrible pain all the time and you develop delirium.

“That opportunity is lost.”

To make the most of the opportunity you are given, Bruce said, you need to prepare.

An advance directive needs to be in place so that your doctors and family don’t have to guess at what you wish will happen as you die.

“So you can mourn together, share the loss together, but also be grateful together for your presence in each other’s life.”

Barb, who was sitting near Bruce’s hospital bed, said, “The thing you need to understand to really see what this gratitude thing does is — there is a kind of ripple effect.”

Sharing gratitude, Barb said, “is such a gift.”

“I don’t have to mourn that he was so miserable, he was so afraid, he didn’t get what he needed, he was so unhappy, he was suffering or in pain.”

It’s the difference between grief and regret.

But here is the hard part, Barb said. Here is what you must do before the time comes, as surely it will, that you can no longer deny that you will die.

You have to live.

“You die how you live,” Barb said.

“And if you have purpose and gratitude and all those things, then that is how you are going to die.”

Complete Article HERE!

With the End in Mind and From Here to Eternity review – how to banish fear and shame around dying

Two very different books about death, by Kathryn Mannix and Caitlin Doughty, look at how we can face our final days with practicality, adventure and joy

by

[W]hen John Keats was dying of TB in Rome, just 25 and far from family and home, he wrote a series of beautifully judged, empathetic letters of farewell that deal lightly (yet never falsely) with his physical suffering and his emotional anguish. From the shrinking circle of his life, from his frail body drowning in itself, he reached outwards towards the friends he was leaving. In his final letter, he wrote of living a “posthumous existence”; his last phrase becomes his eloquent, courteous and self-effacing goodbye before he exits the stage on which he has had such a small parcel of time: “I always made an awkward bow.” Dying as a performance, dying as an art and a practice, dying as something solemnly profound and sorrowful and at the same time as normal, natural; dying as physical and as spiritual; dying as the end of a whole world because, as Oliver Sacks wrote, when dying himself: “There is no one like anyone else, ever.”

We live in our bodies and die in our bodies. In previous centuries, death was familiar and not hidden behind institutional walls: before the 20th century, there would have been scarcely an adult who had not seen their parents, some of their children, and their friends die. Moreover, there was faith that it was not the end. People witnessed death, dealt with it, prepared for it, even embraced it (John Donne used to sleep in his own coffin; Jeremy Taylor wrote his 17th-century manuals for the soul, Holy Living and Holy Dying, which became the preeminent works of the ars moriendi tradition; in The Tempest, Prospero consigns himself to an old age in which every third thought will be of death). Now, although we live with the sense of our own ending, we don’t really. We know we’re going to die, but we don’t know. Our body doesn’t know, except in dizzying moments of terror, until the sentence has been uttered and the gallows are being built under the window. Even then, death is often held at bay and life prolonged at all costs: the fragile and disintegrating body is plugged into machines, pumped full of oxygen and blood and drugs, its gallant heart restarted and kept going, no matter the pain, no matter the hopelessness of the endeavour, no matter that at a certain point this isn’t living, just a slowed-down, drawn-out, painful and undignified dying.

It has become easier to live longer, but harder to die well. Most people want to die at home; most die in hospital. Most want to be with family; often they are alone or with strangers. “Their death has been stolen from them,” writes Seamus O’Mahony in his bracing and unsentimental account of dying, The Way We Die Now, which charts how something that used to be public and acknowledged, with a common script, has become an aggressively medicalised and bureaucratic process placed in the hands of experts; sometimes banal, sometimes farcical, sometimes painful or undignified. Modern, sanitised death becomes a dirty little secret, almost embarrassing: our language circles round it, we don’t like to name it, cross the road to avoid those recently touched by it, and shy away from the physical, squeamish fact of it, so that the dead body is whisked away, frequently embalmed (for fear of its smell), cremated in “facilities” that are often in industrial zones.

Lady with the Lamp: Florence Nightingale tending the sick and dying.

Have we lost our way with dying and with death? In the last few years, there has been a crowd of books by doctors, scientists, writers and people who are scrutinising their own departure that have sought to show us different, kinder ways of ending: Atul Gawande, Oliver Sacks, Henry Marsh, Jenny Diski, Tom Lubbock, Marion Coutts, Paul Kalanithi, the luminous final poems of Helen Dunmore… the list is long. Behind them all stands the austere, magisterial work by Sherwin Nuland written in 1993, How We Die. Now Kathryn Mannix joins this distinguished group and her voice, though quiet and calm, is distinctive. A palliative doctor (or “deathwife”), she spends her days with the terminally ill and their families, witnessing and supporting them at times of intense suffering, terror and loss. About a quarter of deaths are sudden and unexpected, but she usually sees the ones that come slowly, over months or years, and while much of her work is diagnostic and medical, one of her crucial tasks is to help those who are dying and their families find ways of dealing with life’s final, great event.

With the End in Mind: Dying, Death and Wisdom in an Age of Denial is Mannix’s account of ways of dying, through a series of vivid stories, most of which disguise the protagonist, some of which are composite tales stitched together from several cases, and all of which are heart-wrenching testimonies to human courage and love. Her purpose is to describe many forms of death – the young man with testicular cancer treated in the room dubbed “the Lonely Ballroom”, the dying mother in the hospice who manages to walk her daughter up the aisle, the 22-year-old with cystic fibrosis, the teenager with leukaemia – and to show how in each case, while a death may be emotionally harrowing, it need not be intolerably painful; while it may be tragic, it need not be ghastly or full of the chaos that accompanies too many ends.

Like those romantic portraits of Florence Nightingale holding her lamp aloft as she walked between beds of maimed and dying soldiers, Mannix’s aim is to shed a soft, clear light on a subject she feels is too often avoided. She wants us to think about what dying and death mean for others and for ourselves and take the fear and recoil out of the subject. Mild, tender and conciliatory, she is punctiliously even-handed. If one story shows how denial is toxic and the truth needs to be gradually and gently revealed, in another she demonstrates the usefulness of denial; if one describes how precious time can be won for a patient, another is an example of how prolonging life can be cruel and death a necessary kindness. One person’s good death is not another’s – we all need to find our own way to take our bow and leave the stage.

I agree with almost everything Mannix says; I would like her, or someone like her, to be my compassionate, wise doctor when I lie dying, easing me out when my time has come. Yet in her desire to show that death can be well managed, she leaves out the mess, fear, pain and unpredictability of so much dying – its scandal, its wildness and its impossibility. Not all passing can be gentle and not everyone can be brought to acceptance in the face of their own obliteration. However we dress it up and think about it, death remains blankly ungraspable and stark.

Enter Caitlin Doughty, American mortician, joyful member of the death-positive movement, who describes what happens to our mortal remains with boisterous relish – “ya tell it like it is”, she wrote in her first book, Smoke Gets in Your Eyes. Skin slip is skin slip; putrefaction stinks. The body fails and the body rots and death is a tragedy and a farce. Jaunty, boisterous and unsentimental, Doughty believes that we in the west have made death and its aftermath into a corporate, perfunctory affair, in which the meaning of an ending is denied. Her mission is to “reclaim public understanding of dying” and to bring individuality and joy back into our dealings with the dead – and so, in From Here to Eternity, she embarks on a journey of discovery: to the only open pyre in America; to a sky burial in Tibet, where the body breaker slices the corpse into parts, pounds the flesh with a mallet, mixes it with barley flour and yak butter or milk, and leaves it to the shrieking vultures to consume; to burial towers in India; to the people of Tana Toraja in Indonesia, where mummified bodies are cared for in their home (offered food, dressed, even given a bed with the living) over months or years until the family can sacrifice an animal and put the dead to their final rest; to Barcelona’s mass bone pits; Mexico’s Day of the Dead. Skulls used as flowerpots, bodies made into compost on a body farm, corpses covered with rose petals, funerals conducted by men with dreadlocks and purple frock coats – what Doughty relishes are those rituals that acknowledge death, its bodily fact and its emotional enormity.

And although the book is in love with extremes, it actually shares Mannix’s desire to be balanced: one culture’s practice is another culture’s taboo. We might not like the thought of ripping the rotting flesh from our loved one’s bones, but for some, burning a body is equally repugnant. What is important is “to hold the space” – to banish our fear and shame, and create a ring of safety around the grieving family and friends where they can mourn, each in their own way.

Animals perish; only humans die – because we are creatures who are aware of our own mortality. This awareness, which can feel vertiginous, unendurable, is also what gives us selfhood, and life shape and meaning. “Death destroys a man; the idea of death saves him,” wrote EM Forster. It is Henry James’s “distinguished thing”, Martin Amis’s backing to the mirror, Rochefoucauld’s sun that we must not stare at too long lest we go blind with seeing. It’s the great nothing; the everything, which makes us and unmakes us, and to which we all come in the end. Nothing is more certain; nothing more bewildering, strange, scandalous, downright impossible, forever true.

Complete Article HERE!

For some people dying alone is not such a bad thing – here’s why

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It seems so obvious that no one should die alone that we never talk about it, but people do often die when they are alone. Sometimes they die in a way that suggests they prefer to be alone as they are coming to the end of their lives. So is it really such a bad thing to be alone when you die?

When a person is dying in a hospital or a care home it is common for the nurses caring for them to summon their family. Many people will have the experience of trying to keep vigil beside a family member. It is hard – as everyday life goes on regardless – and it can be emotionally exhausting. Sometimes, the relative will die when their family have gone to make a phone call or get a cup of tea, leaving the family feeling distressed and guilty for not being there when they died.

There is plenty of research literature, from many countries, devoted to trying to decide what makes a good death. There are differences to be found between countries, but similarities too. One similarity is a belief that no one should die alone.

Rod Taylor was said to have had a good death.

This idea sits well with the view of dying that can be found in many different places. When interviewed as research participants, health professionals – and nurses in particular – commonly say that no one should die alone. There are also many cultural references that suggest that to die alone is a bad thing. Consider, for example, the death of Ebenezer Scrooge in Dickens’s A Christmas Carol, or the death of Nemo, the law writer in Bleak House. These are both sad, dark, lonely deaths of a kind to be avoided.

Celebrity deaths, such as those of comedian and actress Victoria Wood or David Bowie, are described in the news as peaceful or good when they are surrounded by family. Ordinary people who die alone make the news when the person’s body is undiscovered for a long time. When this happens the death is likely to be described in negative terms, such as shocking, lonely, tragic or as a sad indictment of society.

Some people prefer to be alone

Of course, it may be the case that many people would prefer to have their family around them when they are dying. But there is evidence that suggests that some people would prefer to be alone as they are coming to the end of their lives.

My own research found that while hospice-at-home nurses believe that no one should die alone, they had seen cases where a person died after their family members had left the bedside. The nurses believed that some people just want to be on their own when they are dying. They also thought that people may have a measure of control over when they die, and choose to do so when their family are not around.

In the same study, I also talked to older people who were living alone to find out their views about dying alone. I was intrigued to learn that dying alone was not seen as something that is automatically bad, and for some of the older people it was to be preferred. For some people in this group, dying was not the worst thing that could happen – being trapped in a care home was considered to be far worse than dying alone.

Cultural representations of dying suggest that being alone while dying is a dreadful thing. This view is supported by healthcare policy and the practices of health professionals, such as nurses. But we all know people who prefer to be left alone when they are ill. Is it so surprising then that some might wish to be alone when they are dying?

It is time we began to talk about this and to accept that we want different things in our dying as we do in our living. Openness created through discussion might also help to remove some of the guilt that family members feel when they miss the moment of their relative’s death.

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!

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.

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