Coronavirus preys on what terrifies us: dying alone

by Daniel Burke

Steve Kaminski was whisked into an ambulance near his home on New York’s Upper East Side last week.

He never saw his family again.

Kaminski died days later of covid-19, the disease caused by the novel coronavirus. Because of fears of contagion, no visitors, including his family, were allowed to see him at Mt. Sinai Hospital before he died.

“It seemed so surreal,” said Diane Siegel, Kaminski’s daughter in law. “How could someone pass so quickly and with no family present?”

Mitzi Moulds, Kaminski’s companion of 30 years, was quarantined herself, having also contracted the coronavirus. She worried Kaminski would wake up and think she’d abandoned him.

 

“Truthfully, I think he died alone,” said Bert Kaminski’s, one of Steve’s sons. “Even if a doctor was there.”

As the coronavirus stalks victims around the world, one of its scariest aspects is how it seems to feed on our deepest fears and prey on our primal instincts, like the impulse to be close to people we love when they are suffering and near death.

In a painful irony, the very thing we need in moments of fear and anxiety could also kill us.

Many hospitals and nursing homes have closed their doors and placed covid-19 patients in isolation wards to prevent the disease from spreading. One doctor called it “the medical version of solitary confinement.”

Priests are administering last rites over the telephone while families sit helplessly at home.

The isolation extends beyond coronavirus patients. Amy Tucci, president of the Hospice Foundation of America, estimates that 40% of hospice patients are in hospitals or nursing homes, many of which have placed strict restrictions on visitors. Their families, too, are worried about loved ones dying without them.

“We crave closure,” said Maryland psychologist Dr. Kristin Bianchi, “so it’s only natural we would want to be there in our loved one’s final moments. We want to bear witness to that process and say our last goodbyes.”

‘Lonely deaths’ can haunt us

Something about dying alone seems to haunt us. To some it may suggest the deceased’s life lacked love and worth, and that in the end they were forgotten.

The Japanese have a word for this: “kodokushi,” meaning “lonely death.” In recent days, as funerals have been cancelled or postponed because of the virus, it can seem as if coronavirus victims simply vanished, like people in “The Leftovers.”

But some medical experts challenge the idea that scores of people are dying unaccompanied in hospitals right now. In many instances, they said, hospital staff are standing vigil by patients’ bedsides during their last moments.

It’s not ideal, they say, but they’re not quite the lonely deaths we may imagine.

As a lung specialist and member of the Optimum Care Committee at Massachusetts General Hospital, Dr. Emily Rubin is on the frontlines of the pandemic.

The hospital, where 41 employees recently tested positive for coronavirus, does not admit visitors except for limited circumstances, like births — and, in some cases, for patients near death.

But Rubin said the situation is evolving rapidly as the virus spreads. In some cases, the hospital may connect families and covid-19 victims electronically instead of in person. Other times, nurses and other hospital staff will step in to stand vigil.

“Even if the disease is too mighty, the ethic of not abandoning people is so strong,” Rubin said. “We feel like being present with people at the end of life is a huge part of what we do.

“People in a hospital are not dying alone.”

Still, shepherding patients through the last stages of life can take an emotional and physical toll on doctors, nurses and other hospital staff, Rubin acknowledged.

Dr. Daniela Lamas, a critical care doctor at Brigham and Women’s Hospital in Boston, wrote about that toll in a recent New York Times op-ed.

“The devastating image of the lonely deaths of coronavirus patients in Italy hangs over us all,” Lamas wrote. “Talking with one of the nurse practitioners in our hospital’s new Covid-19 I.C.U. one recent night, I asked what worried her most. ‘Patients dying alone,’ she replied quickly.”

But some hospice chaplains question notions of “lonely deaths,” saying that in their experience, some people want to approach the end by themselves.

“I don’t think dying alone has to always be a bad thing,” said the Rev. C. Brandon Brewer, a hospice chaplain in Maryland. “What we’ve done is make it into something that it doesn’t have to be.”

It takes away our end-of-life rituals

When we think about dying alone, we’re really talking about two separate things, psychologists say: The fear that people we love will die alone, and the fear that we ourselves will stare down death solo.

“It creates in almost everyone a sense of terror,” said Bianchi, of the Center for Anxiety & Behavioral Change in Rockville, Maryland. “We want to be be able to cushion the experience from what we believe will be a painful and difficult experience. We also want to be there because we imagine ourselves in that scenario.”

Often, it’s the people left behind who suffer more than the deceased, said Kerry Egan, a former hospice chaplain who has turned to writing essays and books. We want to be there to comfort and help the dying, she said, as if we could somehow alleviate their suffering.

“People feel a sense of guilt. What could I have done better? How could I have stopped this?” she said. “Part of that is just part of the normal grief process.”

This relentless pandemic, which brings deaths shockingly quickly, heightens the anxiety. Many people can’t get to their loved one’s bedsides to whisper last goodbyes or reconcile old grudges.

Secular and religious end-of-life rituals, too, have been stripped away. Hospice care, for example.

“Hospice is all about being able to provide an environment where people can review their life and say their goodbyes and their sorries and hold hands and kiss one another and then — poof! — all of that is just gone overnight,” said Tucci, of the Hospice Foundation. “It’s a nightmare.”

At the same time, many funeral homes have cut way back on memorials, burials and other rituals used to commemorate departed friends and family.

“Even when there are people around to support us during times of mourning, it can be an extremely isolating experience,” said Bianchi. “Take that, and then put someone into forced isolation, like we are now, and it can be absolutely agonizing.”

Dying alone is different from dying lonely

It happens too often to be a coincidence, hospice chaplains say.

Family members will maintain a constant vigil, spending hours, even days, by their loved one’s deathbed. And then, when they leave for a few moments to make a sandwich or take a shower, their beloved dies.

“There’s no coincidence in my mind,” said Brewer, the hospice chaplain in Maryland. “This is an intentional process.”

Egan agreed. “Ask anyone who has worked in hospice and they will have dozens of stories like this. “I think a lot of people want to die alone.”

In other words, there’s a difference between dying alone and dying lonely.

“Dying alone is not necessarily dying without love. It is simply in some cases the absence of another person in the room,” said Brewer. “And if that’s what someone wants, that’s OK. It doesn’t mean they were forsaken.”

In a certain sense, Egan added, we all die alone, even if we are surrounded by people we love. Often, as we die, our bodies are breaking down and our minds are elsewhere. The conscious experience of death is, by nature, solitary.

And the movie image of someone imparting profound last words upon his deathbed, encircled by his faithful family? That’s a comforting fiction, hospice chaplains said.

“That is not how it happens,” Egan said. “Many people are not responsive at the end. Their bodies are busy doing something else.”

This family said their final goodbyes by phone

Before Steve Kaminski died, a nurse practioner at Mt. Sinai set up a group call so he could hear his family’s voices one last time.

His face brightened, the nurse told family members, as each offered their tearful goodbyes or said, hoping against hope, that they’d see him when he left the hospital.

On a ventilator, Kaminski himself could say nothing.

When he died days later, it was a sudden and stunning ending to 86 years of vibrant life, said Bert Kaminski, Steve’s son.

But Bert Kaminski said he took some solace from a dinner he shared recently with his father and his father’s longtime partner. They went to a Vietnamese restaurant, drained a bottle of Merlot and then feasted on ice cream. His father was his usual bon vivant self, Bert remembers.

“People shouldn’t take it for granted that there is time to connect with them later, particularly older family members,” Kaminski said.

“This thing can come very suddenly. No visitors. No final words.”

Complete Article HERE!

Anticipatory Grief Is Real,

And It’s Okay to Feel it During the Coronavirus Crisis

By

I keep having nightmares about going to Target. In these dreams, I walk through the aisles of one of my favorite places, enjoying a Saturday shop. Suddenly, as people brush by me or stand close in line, I realize my grave mistake: I’ve ventured out into a pandemic, and I’m surrounded by potentially infected people. Panic sets in. Anger at myself for somehow forgetting this new reality. Then I wake up feeling sad. I know I can’t go to Target, and I miss it. Once I can go back, will I be afraid, like in my dreams?

This is one of many minor things I mourn about our new way of life. As COVID-19 sickens thousands across the country and the world, the future we’ve all depended on is no longer a foregone conclusion, and it’s really, really sad.

Harvard Business Review named grief as the “discomfort” so many of us are experiencing, and that’s exactly true. I’ve cried for days on end, thinking about the things I thought I’d be doing. Worse, I cry when I imagine people in the near future I had neatly mapped out getting snatched away by an unrelenting illness. I grieve for those who are sick and dying, but I also grieve for my loss of autonomy, trips I’ve canceled, lost hours in the sun, and for the ideas I had about my future life that seem less tangible by the day.

I know I’m not alone. College and high school graduations won’t happen this year, leaving young people who are looking forward to a new chapter of their lives floundering. Many will miss out on prom, a pivotal coming-of-age moment for some. The going-away parties, weddings, birthdays — they’re all canceled.

Right now it seems trivial to mourn the absence of your college graduation ceremony or a school dance because of the coronavirus pandemic, particularly as dead bodies overwhelm hospital morgues. It is kind of trivial. And it’s true that it’s better to miss a milestone if it means saving lives.

But as our lives are torn apart, rendered unrecognizable by social isolation and coronavirus cancellations, it’s only human to mourn the life you thought you’d have.

“Anticipatory grief is that feeling we get about what the future holds when we’re uncertain. Usually it centers on death. We feel it when someone gets a dire diagnosis or when we have the normal thought that we’ll lose a parent someday,” David Kessler, grief expert and author, told Harvard Business Review. “Anticipatory grief is also more broadly imagined futures. With a virus, this kind of grief is so confusing for people. Our primitive mind knows something bad is happening, but you can’t see it. This breaks our sense of safety. We’re feeling that loss of safety. We are grieving on a micro and a macro level.”

It can also feel confusing because grieving a lost shopping trip, or even something bigger like a graduation, feels selfish. How can I feel bad for myself when I still have my life and, so far, my health? Ashley Ertel, LCSW, BCD with Talkspace, says ranking grief isn’t helpful.

“You may even be feeling guilty for being sad about missing out when other people are facing sickness and death,” she tells Teen Vogue. “I hope to encourage you by saying that grief comes in all shapes and sizes, and it is normal to feel all sorts of emotions when your reality does not match up with your expectations. Each of our emotional experiences is valid. We don’t compare our levels of joy, and we need to stay away from comparing our feelings of sadness. Sad is sad.”

Sad is, in fact, sad. Of course, no one would compare the grief of missing prom to that of losing a loved one, or even having and recovering from COVID-19. Everyone knows it’s not the same. Still, we feel sad, especially when the celebrations and rituals that “provide special meaning [in] our lives” are taken away, as Ertel puts it. Rather than push our feelings of grief and sadness away, Ertel recommends we allow ourselves to feel it. Acknowledge and honor your feelings, she says; then try to live in the current moment.

In this moment, I feel sad that I can’t go to my favorite restaurant on Fridays like I normally do. I feel sad that I might have to cancel my bachelorette party. I feel sad that this was supposed to be a happy, busy time in my life and it’s now marked by death and daily feelings of despair.

I also feel sad that people are sick. I worry about myself, my friends, and my family. I feel sad that people are dying, and I feel sad for their families. I feel sad that, when this is all over, we won’t know what’s normal and won’t feel familiar with the world around us. I feel sad that, more than ever, I don’t know what the future holds.

But I also feel excited for the dinner I’ll eat tonight. I feel thankful for my comfortable couch and my two adorable cats. I feel like I should brush my teeth. I feel grateful I have food in my fridge and a secure place to weather this storm. I also occasionally feel thankful for this big slowdown, for the canceled plans and postponed events. The mundane joys and discomforts of life are still here, amid all of this. Now, more than ever, I am reminded that there are things to be hopeful for, like the future trips to Target I know I’ll take. And I have hope that they will be happy, like they were before.

Until then, I think I’ll be sad — and that’s okay.

Complete Article HERE!

He Was Already Sick.

Was His Life Worth Less Than Yours?

With the coronavirus upon us, Americans now must confront death up close.

By

Before this novel coronavirus ever reached American shores, I heard dark tones of reassurance. Don’t worry, people said. It kills only the old and the sick. The thought, a temporary (and misleading) escape from rising panic, crossed my mind, and surfaced in conversation. When I spoke last week to Jessica Smietana, a 30-year-old doctoral student in French literature at New York University, she admitted the thought had occurred to her, too. “I remember saying, ‘Well, you know, when it’s reaching people that aren’t in vulnerable populations, that’s when I’ll worry about it.’”

And then, like many of our unsavory national tendencies, the sentiment took an exaggerated, grotesque form in the statements of President Trump. “We cannot let the cure be worse than the problem itself,” he tweeted in all-capital letters, signaling that he might urge states to lift protective restrictions on gatherings and businesses rather than continue to incur economic costs. In that calculus, the lives of the sick and dying became a mere data point in an actuarial account of the coronavirus pandemic’s economic impact. Mr. Trump has since changed his view, saying, “the economy is number two on my list. First, I want to save a lot of lives.”

Rightfully so. Such an easy dismissal of the sick and elderly is a ghastly indictment of one of our most cowardly cultural reflexes: an abandonment of the dying as a means of wishing away death.

It’s a weakness only the lucky can long afford, and in the midst of this pandemic, their numbers are swiftly shrinking. As coronavirus cases in the United States multiplied, Ms. Smietana, like many of us, found reason to reconsider her initial response. Her 63-year-old father, Bruce Smietana, began chemotherapy treatment for early-stage pancreatic cancer last month. “I realized what a terrible attitude this is,” she told me. “We shouldn’t think of that as an acceptable outcome — ‘Well, all these people were going to die soon enough.’”

In America, Ann Neumann writes in “The Good Death,” “death has been put off and professionalized to the point where we no longer have to dirty our hands with it.” But with the coronavirus, death has drawn too near to ignore. And this is a good thing. The dying, their value and their particular wisdom should never have been banished from our common life in the first place.

The physicians who accompany people as they face death have a unique perspective on mortality, perhaps thanks to the example of their remarkable patients. I spoke to Christopher D. Landry, a postgraduate trainee in the Columbia University psychiatry department, last month, during his emergency medicine rotation. “A lot of young people feel that life in the shadow of death is no life at all,” Dr. Landry said. “But everybody approaches that shadow eventually. And then, even people who were previously young and healthy learn to appreciate the many good things in life that they’re still able to have.”

The prospect of death also prompts a philosophical evaluation of life. These reckonings can bring the blur of ordinary life into sharp and brilliant focus.

At 19, Ms. Smietana lost her mother, and later, her older sister. From that point on, her family consisted of herself and her father, a stoic and steadfast garbage man who worked for the city of Chicago for some 30 years. Ms. Smietana told me that she had always been close with her father, but that their relationship became even more vital after the loss of her sister and mother. “That’s made this whole situation a little more intense,” she said.

The threat of the coronavirus kept Ms. Smietana from being with her ailing father.

Her father’s battle with a miserable disease has led her to contemplate justice, or the lack of it. He had already lost so much. Because the chemotherapy weakened his immune system, she wasn’t permitted to visit him during his treatment. He would be alone. As we spoke, her voice thinned with tears. “It feels tremendously unjust,” she said.

What Ms. Smietana saw was that the presumption of fulfillment — that the elderly have lived life, and can ask little more from it — is mistaken. As much as any young person can hope to feel more love, happiness, curiosity, satisfaction in the balance of life, so can the aged and the ill. In fact, they may experience those good things in life even more acutely for recognizing their scarcity.

In that respect, the dying may be more alive than any of us — more awake to the truths that emerge at the end of all things, and more aware of the elements of life that lend existence its meaning.

When I spoke to Mr. Smietana on the telephone, he was recovering from chemotherapy in the midst of a pandemic. But he didn’t ruminate on pain; instead, he talked about gratitude. He told me about Jessica, how she would be the first doctor in the family. He looked forward to her graduation, and to all of the other things he had no doubt she would accomplish; “she’s an amazing daughter,” he said.

And then he drew a labored breath, still exhausted from his treatment. “I’ve had a relatively great life,” he reflected. “I lost my wife, and I lost one of my daughters. But besides that, I’ve been pretty damn lucky.”

Mr. Smietana died a week later, on a cold Sunday morning in Chicago. He awoke that day with breathing trouble, and passed shortly thereafter. When I spoke with Ms. Smietana, she was still thinking about justice, or the lack of it. “Coronavirus is the reason I didn’t get to see my dad during what turned out to be the last week of his life,” she said. “It was the right thing to do. But I will regret it forever.”

Complete Article HERE!

Grief in a Pandemic:

Holding a Dying Mother’s Hand With a Latex Glove

by Deborah Bloom and Nathan Layne

Doug Briggs put on a surgical gown, blue gloves and a powered respirator with a hood. He headed into the hospital room to see his mother – to tell her goodbye.

Briggs took his phone, sealed in a Ziplock bag, into the hospital room and cued up his mother’s favorite songs. He put it next to her ear and noticed her wiggle, ever so slightly, to the music.

“She knew I was there,” Briggs recalled, smiling.

Between songs by Barbara Streisand and the Beatles, Briggs conference-called his aunts to let them speak to their sister one last time. “I love you, and I’m sorry I’m not there with you. I hope the medicine they’re giving you is making you more comfortable,” said Meri Dreyfuss, one of her sisters.

Somewhere between “Stand by Me” and “Here, There, and Everywhere,” Barbara Dreyfuss passed away – her hand in her son’s, clad in latex. It would be two days before doctors confirmed that she had succumbed to COVID-19, the disease caused by the coronavirus.

Dreyfuss, 75, was the eighth U.S. patient to die in a pandemic that has now killed more than 1,200 nationally and nearly 25,000 worldwide. She was among three dozen deaths linked to the Life Care nursing home in Kirkland, Washington, the site of one of the first and deadliest U.S. outbreaks. (For interactive graphics tracking coronavirus in the United States and worldwide, click https://tmsnrt.rs/2Uj9ry0 and https://tmsnrt.rs/3akNaFr )

Dreyfuss’s final hours illustrate the heartrending choices now facing families who are forced to strike a balance between staying safe and comforting their sick or dying loved ones. Some have been cut off from all contact with parents or spouses who die in isolation, while others have strained to provide comfort or to say their final goodbyes through windows or over the phone.

Just three days before his mother died, Briggs had been making weekend plans with her. Now, in his grief, he found himself glued to news reports and frustrated by the mixed messages and slow response from local, state and federal officials.

“You find out all these things, of what they knew when,” Briggs said.

Officials from Life Care Centers of America have said the facility responded the best it could to one of the worst crises ever to hit an eldercare facility, with many staffers stretched to the brink as others were sidelined with symptoms of the virus. As the first U.S. site hit with a major outbreak, the center had few protocols for a response and little help from the outside amid national shortages of test kits and other supplies.

‘NOT FEELING TOO GOOD’

A flower child of the 1960’s, Dreyfuss lived a life characterized by art and activism. After marrying her high school sweetheart and giving birth to their son, she pursued a degree in women’s studies at Cal State Long Beach, where she marched for women’s equality and abortion rights.

Furious over President Gerald Ford’s pardoning of former president Richard Nixon in 1974, Dreyfuss took to her typewriter and penned an angry letter to Ford. “Today is my son’s 9th birthday,” she wrote of a young Briggs. “I do not feel like celebrating.”

By the time she arrived at the Life Care Center in May 2019, years of health issues had dimmed some of that spark, her son said. Fibromyalgia and plantar fasciitis restricted her to a walker or a wheelchair, and chronic obstructive pulmonary disease required her to have a constant flow of oxygen.

When her son visited on Feb. 25, he brought a grocery bag of her favorites, including diet A&W root beer. She awoke from a nap and smiled at him, but hinted at her discomfort.

“Hi Doug,” she said. “I’m not feeling too good.”

Still, Dreyfuss talked about an upcoming visit with her sisters – the movies she wanted to see, the restaurants she wanted to try. The mother and son then had only a vague awareness of the deadly virus then ravaging China.

In hindsight, Briggs realized he had witnessed the first signs of her distress. His mother was using more oxygen than usual, her breathing was more strained.

At the time, staff at the nursing home believed they were handling a flu outbreak and were unaware the coronavirus had started to take hold, a spokesman has said.

‘A TINY FOOTNOTE’

Two days later, Briggs dropped by to see his mom. She felt congested, and staff were going to X-ray her lungs for fluid. Briggs, 54, still saw no red flags, and continued to discuss weekend plans with his mother.

“I hope we can finally watch that new Mr. Rogers movie,” she told him, referring to the film, A Beautiful Day in the Neighborhood.

Briggs hugged his mom before she was wheeled to the imaging room and drove for a quick meal. Soon after, he received a call from the nursing home. His mother was experiencing respiratory failure. She was on her way to the hospital. Doug rushed to nearby EvergreenHealth Medical Center. By then, she was unresponsive.

At the time, there were 59 U.S. cases of coronavirus, a number that has since soared to more than 85,000.

After hearing of her sister’s sudden hospitalization, Meri Dreyfuss remembered an earlier voicemail from Barbara: her distant voice, groaning for 30 seconds. When she had first heard it, she assumed Dreyfuss had called by accident, but now she realized her sister was in pain. “It haunts me that I didn’t pick up the phone,” she said.

Briggs spent close to 10 hours the next day in his mom’s hospital room. He wore a medical mask and anxiously watched her vital signs – especially the line tracking her oxygen saturation.

On his way out the door, a doctor took him aside to say they were testing her for the coronavirus. He remembered the difficulty reconciling the outbreak taking place on television – far away, in China – with what was happening in his mother’s hospital room.

In the Bay Area, Meri and Hillary Dreyfuss were packing their suitcases on Feb. 28 when Briggs telephoned. After the call, they decided that visiting their sister would pose too much danger of infection.

“I realized there was no way we were going to get on a plane at that point, because we couldn’t see her,” said the middle sister, Hillary. “And now, it seemed that we shouldn’t be seeing Doug, either.”

They canceled their flights. On Saturday, Feb. 29, Briggs learned his mother’s condition was deteriorating. Tough decisions loomed. Briggs and his aunts decided to prioritize making her comfortable over keeping her alive. Doctors gave her morphine to relax the heaviness in her lungs.

She died the next day.

Having emerged from a two-week quarantine, Briggs will soon retrieve his mother’s cremated remains. The family has been struggling with how to memorialize her life in such chaotic times.

“All the things that one would want to happen in the normal mourning process have been subsumed by this larger crisis,” said Hillary Dreyfuss. “It’s almost as though her death has become a tiny footnote in what’s going on.”

Complete Article HERE!

It’s Time to Talk About Death

The coronavirus pandemic highlights how much we need to have conversations about end-of-life care.

By Sunita Puri, M.D.

Joseph, a man in his 70s, has been on a ventilator for two weeks. His heart, lungs and kidneys are failing. Though I know these facts about his physiology, I will never see him up close. I can only glance at him through clear glass doors, the ventilator and dialysis machine obscuring his face. The coronavirus has limited the number of physicians who can enter his room.

I cannot sit with Joseph’s wife and children to ask what sort of medical care he would want. I cannot read their body language, lean in toward them or offer a tissue as they cry. Now, because of the coronavirus, most hospitals don’t allow families to visit.

Instead, I met Joseph’s wife and children on a Zoom conference call.

“I want to apologize to you for being a face on a screen,” I began. “I wish we could talk about this in person.”

They nodded together, their eyebrows furrowed.

“I wish that I had better news to share,” I said. “Unfortunately, despite our very best efforts to support Joseph’s heart, lungs and kidneys, his body is showing us that he is getting sicker.” I watched, disembodied from a distance, as they hugged each other and cried.

His wife told me that Joseph had never talked with her about what he would want in this sort of situation. “I don’t know what he would say,” she said. “We didn’t think this would ever happen.”

Americans are not good at talking about death. But we need to be prepared for when, not if, illness will strike. The coronavirus is accelerating this need.

In Italy, doctors have had to make excruciating decisions about which patients receive ventilators, which are in short supply. In the United States, we are already facing shortages of life-sustaining therapies; doctors will need to make these same difficult decisions.

Our collective silence about death, suffering and mortality places a tremendous burden on the people we love, and on the doctors and nurses navigating these conversations. We should not be discussing our loved one’s wishes for the first time when they are in an I.C.U. bed, voiceless and pinned in place by machines and tubes.

Talking about death is ultimately talking about life — about who and what matters to us, and how we can live well even when we are dying. Rather than being motivated by fear and anxiety, we can open these discussions from a place of care and concern.

Here’s how I opened a conversation about death with my own parents earlier this month: “Mama, Daddy, seeing a lot of people getting really sick with the coronavirus made me think of both of you. None of us knows what’s around the corner, and I want to be sure I know what you would want for yourselves when you get really sick,” I told them. “I want to be your voice so that I can make decisions for you, not for myself.”

“If I needed a ventilator for a short time, or dialysis, that would be OK, but I would only want treatments that would help me stay independent,” my mother replied.

My father nodded in agreement. “My main hope is to be with all of you. If I will lose my ability to be myself, if my mind will never be clear, please just let God take me,” my father told me, stirring his tea.

Though it is a daunting task, talking about death offers opportunities for grace and connection with our loved ones. Last summer, I watched as a patient’s brother told her for the first time how much he loved her, just before she told him she was choosing hospice instead of a clinical trial. In the fall, I walked the wife of a patient into her husband’s hospital room, where they renewed their wedding vows amid cake, balloons and glittery confetti.

“This was what she always wanted,” he told me when we discussed what was most important to him. “I put it off for so long, but I have to do it before I die.”

Working in the hospital with patients suffering from the coronavirus made me ask myself the questions I hope you will ask yourselves and the people you love:

  • What is most important to me in my life? (My family and pets, and the ability to write and doctor).
  • What makes my life meaningful? (My work; dancing; being outdoors; being with my loved ones).
  • What sort of quality of life would be unacceptable to me? (Being permanently bed-bound or neurologically devastated; indignity and suffering; depending on others for personal care).
  • Who is best positioned to speak on my behalf? (My brother).
  • Who would I not want involved in decision making? (Family living abroad).
  • Would I want to undergo C.P.R. should my heart stop? (Only if the issue leading to the cardiac arrest is reversible. If my heart stopped even when I was being sustained on life support machines or dying from an incurable disease, then I’d prefer to die peacefully rather than with C.P.R.).
  • What would bring me comfort if I were hospitalized? (Pictures of my family; music I love playing in my room; prayer).

This is by no means an exhaustive list of questions. The Conversation Project offers many more, as well as guidance on how and when to begin these conversations. The Serious Illness Conversation Guide gives health care providers a road map of when and how to start asking patients about dying. Both resources offer the compassionate, incisive — and often unfamiliar — language required for us to ask the right questions and empower our loved ones to share specific, honest answers.

Confronting our fears about death — having a conversation about it in frank terms — can be alternately terrifying and tender. Yet knowing how to honor our loved ones’ wishes when they can’t speak for themselves is one of the bravest and most loving things we can do.

Complete Article HERE!

Death of the funeral

Trends in commemorating those who die are shifting away from tradition. And, as the population ages and times change, the City of Kamloops is looking at how to manage the dead


A statue of Jesus stands among the remains of loved ones in a mausoleum at the city’s Hillside Cemetery. Funerals with large gatherings are on hold amid the COVID-19 pandemic.

By Jessica Wallace

Dead are the days of traditional casket burials for all.

These days, a dying man’s wish may be to grow into a tree, while another may choose to be buried in a certified eco-friendly cemetery.

Last spring, Washington became the first state in the U.S. to legalize human composting.

Funerals — once a place for obligatory tears and dark clothing — are today often substituted with a “celebration of life,” complete with funny stories and laughter.

Trends in dying are shifting away from tradition. And, as the population ages and times are changing, the City of Kamloops is looking at how to manage the dead, with an update to its Cemetery Master Plan.

The plan focuses on the city’s primary cemetery, Hillside Cemetery on Notre Dame Drive.

City civic operations director Jen Fretz said the plan will address current trends as traditional casket burial declines in popularity.

More common these days is cremation, Fretz said, noting the plan will look at demand for increased mausoleum space at Hillside Cemetery. The current mausoleums, she said, are “fully subscribed.”

Schoening Funeral Service manager Sara Lawson lauded the city’s planning, telling KTW the industry is rapidly changing.

She said some people may be surprised to know that in British Columbia, 85 per cent of people are cremated after death, with 15 per cent buried in a casket.

In Kamloops, that number is slightly lower, at 80 per cent and 20 per cent, respectively.

The overall trend, however, is a rise in cremation. Lawson believes that is happening for multiple reasons, primarily a new generation and loss of tradition.

“Newer generations aren’t attending church as much as grandma and grandpa,” Lawson said. “Back in the day, that’s what you did. You had a casket burial. You had service at the church.”

Another reason cremation is increasingly popular is due to urgency for gathering that comes with casket burial and desire for options. For example, if a family cannot unite in one place for some time until after a loved one’s death, cremation might make more sense. Perhaps everyone wants to meet in a place that was meaningful to the deceased.

“It happens more and more where there is a bit of a delay for the service,” Lawson said.

In addition to mausoleum space, the city will explore trends in green burials.

The Green Burial Council describes a green burial as a way of caring for the dead with “minimal environmental impact that aids in conservation of natural resources, reduction of carbon emissions, protection of worker health and restoration and/or preservation of habitat.”

Green burial requires non-toxic and biodegradable materials.

Lawson said only one cemetery in B.C. is certified to meet green burial standards — Royal Oak Burial Park in Victoria, which opened in 2008.

According to its website, Royal Oak is the first urban green burial site in the country, where it “returns human remains to the earth in a simple state permitting decomposition to occur naturally and so contribute to new life in a forest setting.”

Green burial prepares the body without embalming.

The body is buried in a biodegradable shroud, simple container or casket made from natural fibre, wicker or sustainably harvested wood.

Lawson said the difference between regular cemeteries, such as Hillside, and a green cemetery is the grave liner. While most cemeteries have grave liners made of concrete, wood or fibreglass, green cemeteries use dirt as a way to return remains to the elements as quickly as possible.

Schoening does offer green options, but there is no green burial site in the B.C. Interior. Green burials are not yet a common request, Lawson said, but she expects it will become more in demand in the next five to 10 years.

The city will also explore the potential for a scattering garden, which is a place to scatter ashes. Lawson said scattering gardens may look like flower gardens, wherein ashes can be scattered for a fee.

Compared to scattering someone’s ashes in a backyard or elsewhere in nature, cemeteries are permanent — meaning loved ones won’t return to that special location one day to find a development in its place, a rose garden dead or a tree chopped down.

“Cemeteries stay the same,” Lawson said. “The record must remain forever.”

Updates to the Cemetery Master Plan are expected by the fall.

With need for expansion of the cemetery, rates may also be on the rise.

The city said its fees are between 20 to 25 per cent lower than similar-sized communities and the goal is to recover operating costs with revenue collected.

MODIFYING THE MEMORIAL

While funeral servcies undergo a transition, a Kamloops pastor has noticed memorials are also changing.

Rev. Steve Filyk, a minister at St. Andrew’s Presbyterian Church, said newspaper obituaries increasingly state “no funeral by request.”

He suspects it is due to the taboo nature of death. As a culture, he said, people don’t want to acknowledge death, as it is finite.

“Perpetual youth is sort of what the focus of our culture is, right? In that way, I don’t know how well prepared we are to face it — to face the loss of loved ones or face our own death,” he said.

Filyk said he worries about the psychological impact of not marking someone’s death.

“I think to set apart and designate a time, not just for yourself but for everyone, where the world will stop for a few moments. It’s about that,” Filyk said.

“A moment of silence at Remembrance Day, where the world just stops to acknowledge that this person was special. They had warts and foibles, but they were special to a bunch of people and had an impact and that their loss is felt. I think it’s important to acknowledge that.”

Of memorials that do occur, Filyk said they rarely involve a casket and often involve photo slideshows in an increasingly media-driven, photo-centric society.

In addition, Filyk said he has noticed memorials are getting longer and are often called celebrations of life.

Regardless of whether people follow a faith tradition, Filyk said it is important to acknowledge wisdom from centuries past.

Memorials can be secular or religious, he said, noting there are unique ways to honour someone. with the better memorials providing opportunities to share stories.

“Any story often reveals something interesting about who they were and I think there’s something about telling those stories that somehow helps us heal,” Filyk said.

“Maybe because we’re all together having that similar focus.”

Complete Article HERE!

Physician Aid in Dying Used Mostly by White Patients

By Roxanne Nelson, RN, BSN

In the United States, medical aid in dying (MAID) is used mostly by white patients, even after states with more racially and ethnically diverse populations legalized the practice.

Pondering why this is the case were speakers here at the National Clinicians Conference on Medical Aid in Dying (NCCMAID) 2020 during a session on ethnic and cultural considerations in aid in dying.

Factors such as culture and religious beliefs may play a role in preventing some individuals from considering this option, but a 2019 survey from the California Health Care Foundation found that there was support for MAID among African Americans.

“When asked if race and ethnicity prevented you from getting the services and healthcare you needed, 43% of black respondents said yes, that it has happened to them,” said Thalia DeWolf, RN, CHPN, clinical coordinator, Bay Area End of Life Options, Berkeley, California.

“But when asked if they would support the right to die when terminally ill, 70% of blacks and 82% of whites said yes,” said DeWolf.

“This is surprising, since it is almost at the level of the general population, and given the unequal access to medical care and unequal outcomes, they still believe that medical aid in dying should be legal,” she continued.

“We don’t bring this up to suggest complacency, but it brings up some interesting conversation to be had,” she added.

A recent study found that in Oregon and Washington, the two states where the practice has been legal for the longest period, most patients were non-Hispanic white individuals with some level of college education (JAMA Netw Open. 2019;2:e198648.)

In 2016, MAID became legal in California, a state with a much larger and far more diverse population compared to Oregon and Washington. Even so, about 88% of people who use California’s physician-assisted death law are white, according to 2018 data from the California Department of Public Health.

Speaking to Patients

There is an overall lack of participation by black patients in all programs related to end-of-life care, noted Tracey Bush, MSW, LCSW, regional practice leader, End of Life Option Act Program, Kaiser Permanente, Southern California.

“This includes aid in dying, and we consider this lack to be a healthcare disparity,” she said.

“We would be remiss to look at the disparities and participation in these programs without thinking about the disparities in the rest of our healthcare system,” she explained. “We need to think about where the line can be drawn between education, empowerment, and recruitment,” she explained.

From a programmatic perspective, she pointed out, information, pamphlets, and staffing are designed in a way that couches the MAID decision as individualistic, but not all patients have this point of view.

“My argument is that this population doesn’t really view medical decision making in that manner,” she said. “So are we designing our materials and having conversations in a way that really speaks to these patients?”

She also emphasized the need for a diverse care team across the board with regard to ideas, perspectives, cultural beliefs, gender, and ethnicity.

Complete Article HERE!