She was presumed dead.

— Then she woke up in a body bag gasping for air.

This Iowa hospice care facility was fined $10,000 for mistakenly pronouncing a woman dead when she was still alive.

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As the nurse at the hospice care facility in Iowa checked on the 66-year-old woman, it was clear to the caregiver the patient was dead.

The nurse found no pulse, movement or signs of life in the woman, who had been admitted to Glen Oaks Alzheimer’s Special Care Center in Urbandale, Iowa, for early onset dementia in late December, and “felt the resident had passed away,” according to a report from the Iowa Department of Inspections and Appeals this week.

But after the patient was placed in a body bag and transferred to a funeral home, there was one problem: The woman woke up. And she was desperately trying to breathe. “Funeral home staff unzipped the bag and observed Resident #1’s chest was moving and she was gasping for air,” the report said of the woman, who was not identified by the agency. “The funeral home then called 911 and hospice.”

After EMS personnel recorded her pulse but no other movement or motor response, the patient was transferred to a hospital. Two days after returning to the hospice facility that had mistakenly presumed she was dead, the woman died with her family by her side on Jan. 5, according to the state report published Wednesday.

Now, the hospice facility has been fined $10,000, the maximum allowed under state law, for mistakenly pronouncing the woman dead. The state cited in its report the facility “failed to provide adequate direction to ensure appropriate cares and services were provided.” The agency added the hospice facility failed to ensure the patient received “dignified treatment and care at end of life.”

Lisa Eastman, executive director of Glen Oaks Alzheimer’s Special Care Center, did not immediately respond to a request for comment Friday. Eastman said in a statement to the local CBS station in Des Moines the hospice facility cooperated and completed the investigation from the Iowa Department of Inspections and Appeals. She noted the facility has also been in “close communication with the family of the resident.”

“We care deeply for our residents and remain fully committed to supporting their end-of-life care,” Eastman said. “All employees undergo regular training so they can best support end-of-life care and the death of our residents.”

While it is rare for people to be incorrectly declared dead, it has happened before. In 2018, a Spanish prisoner was certified dead by three doctors before waking up in a mortuary. Later that year, a car crash victim in South Africa was covered in a silver sheet and taken to a morgue when a forensic officer noticed the person was still breathing. In 2020, a Michigan woman was about to be embalmed after she was pronounced dead from a heart attack until employees at a funeral home saw her breathing.

Glen Oaks, a state-licensed residential care facility, is not a skilled nursing facility, meaning it is not subject to the same oversight and federal regulations as nursing homes, according to the Iowa Capital Dispatch. The facility was fined $500 last year for failing to perform required background checks on employees after five workers did not have the mandated training.

The outlet reported that while the Iowa Department of Inspections and Appeals believes people living in a state residential care facility are unable to properly care for themselves, those residents “do not require the services of a registered or licensed practical nurse except for emergencies.”

If Glen Oaks does not contest the citation and pays the $10,000 fine within 30 days, then it will be reduced by 35 percent, according to the state administrative code. The patient was admitted to the facility on Dec. 20, 2021, after she was diagnosed with early onset dementia, anxiety and depression, according to the state report. She was admitted to hospice care about a year later, on Dec. 28, 2022, because of “senile degeneration of the brain,” the report said.

It was 6 a.m. on Jan. 3 when a nurse found no signs of life while checking on the patient, who is referred to by the state agency as “Resident #1,” the report said. “Resident #1’s mouth was open, her eyes were fixed and there were no breath sounds,” the report said. “She was unable to locate Resident #1’s apical pulse using her stethoscope. She placed her hand on Resident #1’s abdomen and noted no movement.”

After a few minutes, the nurse “felt the resident had passed away” and presumed the patient was dead, according to the report. The nurse then notified a family member and the on-call hospice nurse. “Hospice agreed to call the funeral home and did so,” the report said.

At 7:38 a.m., a funeral director arrived to retrieve the patient’s body and place it “on the gurney inside a cloth bag and zipped it shut,” according to the state report. Almost an hour later, staff members at the funeral home realized the woman was still very much alive when they saw her chest moving.

She was transported to an emergency room where officials noted that her breathing was shallow, according to the report. The woman was released that same day and returned to the hospice facility “with continued hospice care around the clock,” the agency said in the report. Two days later, she died surrounded by loved ones. This time, it was real.

Complete Article HERE!

A Good Death

— Instruction manuals for living written by the dying

By Kristen Martin

Adina Talve-Goodman lived with an awareness of her own mortality that most of us will never approximate. Born with a single-ventricle heart and pulmonary atresia—a condition where the valve that controls blood flow from the heart to the lungs doesn’t form—she had two surgeries in her first week of life alone. By four, she had undergone two open-heart operations; by twelve, she was in heart failure. “I was a happy kid even though I did not know what wellness felt like,” Talve-Goodman explains. After spending nearly two years on the waiting list for a new heart—a process she describes as “an exercise in how close you can get to death”—she received a transplant in 2006, at the age of nineteen. With her new heart, she adjusted to blood that coursed quickly through her body, pinking her previously pallid cheeks, affording her energy and strength she had never before known.

Talve-Goodman dreamed of publishing a collection of essays exploring her experience of chronic illness and approaching the brink of death, informed by critical theories of embodied difference, suffering, and disability. Eleven years after her heart transplant, when she was drafting those essays in the University of Iowa’s nonfiction MFA program, she was diagnosed with a rare form of lymphoma caused by the immunosuppressants that kept her body from rejecting its new heart. She died six months later, in January 2018, at thirty-one. 

Now, Talve-Goodman’s collection is here, though it is not the book she hoped would be her debut. Your Hearts, Your Scars brings together seven essays, all but one unfinished at the time of her death. In the introduction, her sister Sarika describes the collaborative process behind the book, one that its author did not take part in. “When Adina’s cancer treatments were starting not to go well, she said to me with a sadness and softness that she hadn’t even gotten to publish a book,” Sarika writes. “Of course she would, I said . . . I wish I had responded differently in that moment of openness. Maybe we could have talked about what she had wanted and worked on it together.” Instead, after Talve-Goodman died, her sister read and organized everything she had ever written and compiled a manuscript. Together, Talve-Goodman’s parents, both rabbis; the editorial team she had worked with at One Story for six years (Hannah Tinti, Patrick Ryan, and Maribeth Batcha); and her best friend since childhood, the comedian Jo Firestone, edited her words into “a book made out of love and grief.”

Books like Talve-Goodman’s bring us visions of death, but they do not bring us any closer to understanding it.

The essays that make up Your Hearts, Your Scars come in at just over one hundred pages and are rooted more firmly in the personal than the critical: Talve-Goodman writes about attending a summer camp for teenage transplant recipients in San Diego, before she got her new heart, where she met kids who “carr[ied] the weight of dead donors”; about the Thanksgiving when she held her old heart in her hands, having requested to take it home from the hospital; about realizing that she “might never feel as if being healthy and having energy is normal.” The essays are suffused with compassion and hope, but given the circumstances of publication, the overall effect is achingly bittersweet.

In this juxtaposition of the author’s clear-eyed appreciation for life that comes with being close to death and the reader’s ever-present awareness that the author is now, in fact, dead, Your Hearts, Your Scars joins a lineage of instruction manuals for living written by the dying. The most recent spate of such books hit shelves in the years leading up to the pandemic, before death became all too present and we shunned confronting mortal reality in favor of smarmy calls for resilience. The neurosurgeon Paul Kalanithi’s 2016 memoir When Breath Becomes Air, written in the months leading up to his death of lung cancer at thirty-seven, kicked off a renewed interest in posthumously published meditations on death, hitting the top of the New York Times bestseller list and garnering critical acclaim. The next year brought Cory Taylor’s Dying, which Barack Obama named as one of his favorite books that year, and Nina Riggs’s The Bright Hour, which the Washington Post hailed as “this year’s When Breath Becomes Air.” In 2019, Julie Yip-Williams’s The Unwinding of the Miracle, adapted from a blog she kept called My Cancer Fighting Journey, joined the pantheon, a little less than a year following her death at forty-two. It, too, drew comparisons to When Breath Becomes Air (Kalanithi and Yip-Williams shared an editor at Random House).

What unites all these posthumous memoirs is the hunger we bring to them as readers. We expect koan-like wisdom on what matters in life, an enlightened perspective gained from being at or near the end of it. We expect to come away transformed, in possession of the same moral clarity that their authors have achieved by dying. Back cover blurbs demand that readers heed the authors’ lessons: Atul Gawande—the author of Being Mortal, a book about end-of-life medicine—claims that “Dr. Kalanithi’s memoir is proof that the dying are the ones who have the most to teach us about life.” Ann Hood says Cory Taylor’s Dying “should be required reading for all of us.”

The ultimate lesson we hope to learn from these books? How to live meaningfully while knowing that life must end, and when it does end, how to face death with equanimity. Put simply, we want to learn how to die.

I have lived most of my life preoccupied with mortality, wishing that I could understand what it is like to die, to be dead. When I was twelve, my mother died of lung cancer; my father died of prostate cancer two years later. In the decades since, I have stopped believing in an afterlife—my parents are nowhere but in memory. Instead, I have tried to understand their deaths in a way I couldn’t when they were dying, and tried to understand death more broadly, through reading literature published from beyond the grave. Books like Talve-Goodman’s bring us visions of death, but they do not bring us any closer to understanding it.


Instead of this year’s When Breath Becomes Air, perhaps a maudlin blurber might call Your Hearts, Your Scars this year’s The Opposite of Loneliness—so far, this century’s paradigmatic work by an author who died before fully developing her craft. The book’s very existence fetishizes the idea that those who die young are especially insightful and worthy, which is in turn part of an impulse to make trite meaning of a life cut short.

Like Talve-Goodman, Marina Keegan was not consciously composing a manuscript to be read posthumously. She died in a car accident days after her graduation from Yale. The 2014 book— put together by Keegan’s family, friends, and her mentor at Yale, Anne Fadiman—takes its title from a piece Keegan wrote for commencement, which developed a tragic weight after her death because its pep talk no longer applied to her: “What we have to remember is that we can still do anything. We can change our minds. We can start over . . . The notion that it’s too late to do anything is comical. It’s hilarious. We’re graduating college. We’re so young.” The Opposite of Loneliness, which hung around the New York Times bestseller list for weeks, drew praise for its “youthful optimism, energy, honesty, and beyond-her-years wisdom.”

Talve-Goodman’s wisdom, on the other hand, comes from having experienced what it was like to die before she died, a fact that colored her image of the future. Though each essay has an undercurrent of brightness, Your Hearts, Your Scars is not a feel-good look at sickness and dying. (This jibes with the fact that the book is out from Bellevue Literary Press, an indie publisher with roots in the historic New York City public hospital that focuses on the intersection of the arts and sciences and exploring the human condition.) What Talve-Goodman’s loved ones have ultimately given readers in publishing her words is a perspective on chronic illness and survival that pushes back on the idea that people who suffer must inspire us or teach us gratitude.

When she died, Talve-Goodman was on the cusp of a literary career; she had only published one piece, an essay titled “I Must Have Been That Man,” which won the 2015 Bellevue Literary Prize in nonfiction. (Coincidentally, Fadiman was the contest’s judge.) That essay, which opens Your Hearts, Your Scars, recounts how Talve-Goodman traversed from illness to wellness forever marked by her near-death, a theme woven throughout the collection. As with many of the other pieces, “I Must Have Been That Man” is built around an incident that happened when Talve-Goodman was in college in St. Louis. She writes of being locked out of her apartment on a rainy day about a year after her heart transplant and coming across a man in the street who had fallen out of his electric wheelchair. It’s a story about the difference between compassion and pity, but the crux is in a reflective moment toward the beginning:

When I listed [for transplant], my parents, both rabbis, told me a story from the Talmud about a rabbi who goes to visit three sick men and each time the rabbi asks, “Is your suffering dear to you?” “That’s the whole story,” they’d explain, “and it’s the question that’s important.” I took it to mean this: When the time comes, will you be able to live without the heart defect that always made you special and strong? Will you be able to face wellness and normalcy?

Talve-Goodman realizes that her suffering is dear to her, at least, she writes, “a little bit.”

Reading the essays that follow, I thought about how the popularity of death memoirs speaks to how the suffering of others is dear to us. In “Your Hearts, Your Scars, Zombies,” a meditation on the cultural figure of the zombie that her sister notes is the closest to the melding of the personal and the critical that she aspired to publish, Talve-Goodman confronts the appetite well people have for stories about sickness: “What, then, for an illness narrative? Perhaps that I am what you make of me—I live this way, a different body, a body of hybridity, to mean something to you, to your experiences, to practice your empathy, to fetishize, even to ‘inspire.’” It’s a refreshing moment of reprimand against a tendency to read illness—or death—narratives with a posture of self-serving pity and a desire to extract encouragement. 

And still, reading Your Hearts, Your Scars, I found myself asking for more than its author wanted to—or could—give. I wished that Talve-Goodman had gone deeper on death—that she had taught me more about how to die. In the collection’s final piece, “Thank God for the Nights That Go Right,” Talve-Goodman lingers on what it felt like to almost die, as opposed to having made it out on the other side, feeling like what she at one point describes as “death in drag.” She writes of being tired, being desperate, being close to giving up the night before she learned that she would receive her transplant. “I always thought dying would feel worse,” Talve-Goodman writes. “I thought there would be more pain, I thought death would be clear.” What did dying feel like? I wrote in the margin, wanting to vicariously understand through reading something that literature cannot deliver.


After reading Your Hearts, Your Scars, I revisited Kalanithi’s When Breath Becomes Air to remind myself of why all these posthumous memoirs get stacked up against it, and why publishers have tried to recreate its success: it actually does meditate cogently and vigorously on what makes life meaningful, even and especially with the acute knowledge of imminent death.

But Kalanithi didn’t start that line of inquiry in his final months—it was a lifelong pursuit, one he began while studying literature and biology in college in an effort to understand both “the life of the mind” and “the rules of the brain.” He chose medicine because he felt it was where “biology, mortality, literature, and philosophy intersect[ed],” and because he believed it would allow him to directly “forge relationships with the suffering, and to keep following the question of what makes human life meaningful, even in the face of death and decay.” In performing neurosurgery, working on and in the organ that makes us individuals—the brain—Kalanithi further challenged himself to confront, along with his patients, “what makes life meaningful enough to go on living.” This was a man who dedicated his entire career to grappling with the fundamental questions of life.

There is value in reading death memoirs, if we can take them on their own terms.

Ironically, within When Breath Becomes Air, Kalanithi makes the argument that literature cannot teach us how to die—something I missed in my first reading, and that the market for books like Kalanithi’s has chosen to ignore. Early on, he writes, “I had spent so much time studying literature at Stanford and the history of medicine at Cambridge, in an attempt to better understand the particularities of death, only to come away feeling like they were still unknowable to me.” Later, after facing death through his patients—which taught him the limits of accessing someone else’s experience—and after receiving his own diagnosis of stage IV lung cancer, Kalanithi turns back to books, reading “anything by anyone who had ever written about mortality.” He tells his oncologist that he’s doing so, “trying to find the right perspective.” She replies, “I’m not sure that’s something you can find by reading about it.”  

What Kalanithi ultimately learns is that he must decide for himself what he values in life, what makes his own life worth living, where he finds meaning. We each have to do this hard work when the time comes. Even with all of the meditative homework Kalanithi completed ahead of time, it wasn’t until he was dying that he could truly answer these questions, and his answers shifted along with his prognosis, his symptoms, his energy.

But still, there is value in reading death memoirs, if we can take them on their own terms. When Breath Becomes Air cannot prepare us to face our own mortality or bring us closer to comprehending the purpose of life or what it means to die. It can, though, allow us inside one man’s personal and philosophical end-of-life reckoning, which may in turn spur our own reflections. Similarly,Your Hearts, Your Scars cannot be an instruction manual for “living each day as a gift,” as the back cover claims that Talve-Goodman did. It can be a slim volume of words about coming-of-age that a young writer never got to polish to her satisfaction, shared as part of her legacy.

Complete Article HERE!

If you could, would you want to know when you will die?

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Would you want to know when you’re going to die? I’ve thought about this question quite a bit recently.

>Several months ago, I picked up a new novel titled “The Measure” by Nikki Erlick, which opens with quite the plot twist. One morning, everybody on the planet (ages 22 and up) wakes up to a surprise at their front door: a small wooden box, personally engraved, with the words: “The measure of your life lies within.” Each box contains a string whose length determines the length of the recipient’s life.

The characters now face a gut-wrenching decision. Do they open the box and find out how long they will live? If yes, what will they do with that knowledge? If not, which means they’re choosing not to know, will they live any differently?

The question is not entirely a hypothetical one. A few months ago, out of a morbid curiosity, I visited Death Clock, a website that labels itself the “Internet’s friendly reminder that life is slipping away … second by second.”

I entered the month, day and year of my birth, my gender, mood (from pessimistic to optimistic), whether I smoked tobacco, and my height and weight. I hit the submit button, and a second later came my answer: “Your personal day of death is Wednesday, April 23, 2031.”

If true, I had nine years to live; I’d be a few months short of my 74th birthday.

About the same time, my sister, who is 60 and being treated for advanced ovarian cancer, was told by her oncologist that time may be running short. Of course, it was only a doctor’s guess and her current chemo regimen has significantly improved her tumor markers. Regardless, she’d be considered a “short stringer,” one of those who will die before their time, in “The Measure.”

I’ve wanted to be a “long-stringer,” ever since I had cancer in my 20s, but thanks to Erlick’s book and now my sister’s illness, I’ve recognized that focusing on exactly when my time is up is unknowable and probably not particularly good psychically. So I’ve decided instead to focus on how I want to spend those years, not just the number of them.

In any case, longevity doesn’t come with a guarantee of good health, and those “bonus years” may hold less value if confined to home or suffering from debilitating conditions.

As the characters in “The Measure” discover, a long string (meaning many years of life) does not equal happiness. And while the characters who get short strings initially feel as though they’ve come up, well, short. gradually, they find greater meaning and richness in their comparatively fewer days. Their newfound knowledge alters their perspective on what matters.

One of the novel’s characters, Nina, who is married to one of the short stringers, says: “It’s easy to look at our time together and think that we were so unlucky. But isn’t it better to spend ten years really loving someone, rather than forty years growing bored or weary or bitter?”

After her partner, Maura, dies — indeed early — Nina explains that their relationship “felt deep, and it felt whole, despite its length. It was an entire, wonderful tale in and of itself.”

All this brings me back to my little sister, Julie, and the deep angst I feel at what may turn out to be a premature death. I want her to live forever. (Maybe not forever, but, please, longer than me!)

To help me with these stomach-wrenching feelings, I’ve turned to friends, my therapist, a higher-dose antidepressant, meditation, ketamine and Elisabeth Kübler-Ross’s work on the five stages of death and dying. All of which work — some.

Oddly enough, “The Measure” has provided me with a greater sense of peace and acceptance than I’ve found anywhere else. Don’t get me wrong, I still hate that Julie is likely to live fewer years than her older brother. But I’ve watched and learned as Julie has lived as big a life as anyone could imagine. This proved true before her diagnosis but even more so in recent years.

Soon after her diagnosis, Julie emailed me to say that she’d already had a full life, even if it’s cut short. Since then, she has focused on what matters to her — seeing her daughters graduate from college, celebrating 35 years with her wife, going away on trips with the whole family, visiting with close friends.

In other words, Julie has fine-tuned those relationships that mean the most to her and not dwelled on those that she may miss out on in the future.

I remember thinking at our recent Christmas dinner about a quote attributed to Ralph Waldo Emerson: “It is not the length of life, but the depth of life” that matters. And then I thought about what Nina, in the novel, tells us: “When we think about the greatest love stories ever written, we aren’t judging them by their length … . [A]nd even though I’ve been given more chapters than Maura, her pages were the ones you couldn’t put down. The ones that I’ll keep rereading, over and over, for the rest of my life. Our decade together, our story, was a gift.”

Amen.

It’s not about how many chapters we’ve lived but how rich and exciting those chapters are. Or, as the late poet Mary Oliver wrote, “Tell me, what is it you plan to do with your one wild and precious life?”

For starters, I’m not going to listen to the Death Clock. I don’t want to know when I’m going to die — but I do want to live each day as though it could be my last.

Complete Article HERE!

I Helped My Mother To Live and Later Die

— After begging her mother to live longer, this author later honors her mother’s wishes for how she wanted to be treated at the end of her life

Kathleen and her mother, less than two years before Mary Elizabeth’s death

By Kathleen M. Rehl

“Please don’t die now, Mom! I can’t handle two funerals back-to-back.”

In a panic, I squeezed my mother’s hand as I sat beside her bed. The hallway’s stark white light streamed through her doorway. Announcements crackled over an intercom as an equipment cart clattered past her room. Mom’s roommate moaned in her sleep before returning to rhythmic snoring.

Then, finally, a sweet-faced nurse’s aide said I could stay beyond regular visiting hours. Staring intently before she spoke, Mom said, “Your father came to me in a dream last night and told me it was time to let go and be with him again.”

Mom Loved Her New Life

Flashback to Dad’s death from colon cancer, a few days after his 80th birthday. After he passed, Mom moved over 1,000 miles from her house on a dusty, isolated road to live near me and my husband, Tom, in Florida.

She blossomed like the red roses she cared for near her apartment.

Leaving sadness and grief behind, she chose a sunny independent living apartment in a continuing care retirement community (CCRC). There she blossomed like the red roses she cared for near her apartment.

Mom made new friends fast, joined afternoon card games, shelved books at the community library, tended a meditation garden, participated in church activities, baked yummy chocolate chip cookies to share, traveled to visit a few relatives across the country, and enjoyed an occasional happy hour glass of sangria with girlfriends.

In addition, Tom and I included Mom in many local activities. “I love my new life here,” she often said. Mom’s newfound happiness lasted almost two years.

Life Changed

A serious fall interrupted Mom’s joyful journey. After spending Thanksgiving with Tom and me, my mother fell in her apartment, shattering her femur. Mom’s next-door neighbor’s frantic phone call brought the ambulance.

At the hospital, we authorized emergency orthopedic surgery. A few days later, she transferred to her CCRC’s skilled nursing care wing, with weeks of physical therapy scheduled. Her spirit was crushed.

I was devastated, of course, but the knockdown punch to the gut hit in early December. That’s when my husband visited his doctor, feeling unusually tired, with jaundiced skin and abdominal pain. He called me at work later, saying he’d been admitted to the hospital for specialized testing.

I bolted from my desk and didn’t return to it for many weeks. Meetings and phone calls with a medical staff filled our coming days. By week’s end, we knew his diagnosis was a callous killer — late-stage inoperable and untreatable liver cancer.

His prognosis was death within a few months. My 72-year-old husband chose home hospice care rather than a war he couldn’t win.

Mom Rallied

“All right! I won’t die now,” Mom said from her nursing home bed when she understood Tom’s death sentence. And that’s just what she did.

Mom mustered her petite body’s life force, willing her health to improve.

She completed prescribed physical therapy, navigated with her fractured leg plus a walker, and moved back into her apartment with daily assistance from an aide and friends.

I boomeranged between caring for my mother and my husband. Then, Tom’s progressive downward spiral gathered speed while Mom’s condition stabilized. He died in my arms on February 12, 2022 with my brother beside us both.

A packed church celebrated my husband’s life. Mom sat near me as I stood in the funeral’s receiving line, both brokenhearted.

Years Before, We Talked About Care Preferences

“I don’t want you kids to have to pull the plug on me someday,” Mom said over a decade before.

Several years before Dad’s death, our family discussed health care preferences if we experienced a severe illness. My mother had once carried the burden of being the one who authorized disconnecting her aunt and mother from life support after each suffered debilitating strokes.

“I didn’t know what they would have wanted because we never talked about topics like that back then.”

“I didn’t know what they would have wanted, because we never talked about topics like that back then,” she said. Mom felt she “killed Aunt Frances and your grandmother.”

Dad, Mom, Tom, and I completed the Five Wishes advance care planning document years before we updated our estate plans. It’s easy to understand, covering one’s personal, spiritual, medical, and legal wishes at the end of life.

In addition, it identifies the person designated to make care decisions when you can’t do it yourself. After my father passed, Mom revised her plans, naming me the primary health care agent.

The Beginning of Mom’s Ending

After my mother told me about her dream of Dad, she didn’t speak of that vision again until Tom died. Then her health plummeted within a month. Complications put her in the hospital again.

Two older adults getting off a bus. Next Avenue, caregiving for mom
Mom and Tom in St. Petersburg

That’s when she repeated that Dad was preparing to welcome her. She wanted to go. Tearfully hugging my mother, I told her it was OK. I understood. I wouldn’t hold her back.

They requested my mother’s advance health care documents when she was admitted to the hospital. I gave them a copy of her Five Wishes form, verifying she didn’t want life support treatment to keep her body alive when she was close to death.

Even though this paperwork was accepted and filed, Mom’s plans were almost upset when she went into immediate cardiac arrest in the middle of the night. Finally, exhausted, I left her hospital room to go home for a shower and a few hours of sleep. But a hospital nurse called after midnight, saying they were taking Mom to the intensive care unit (ICU) for life support.

“No! That’s not what she wants! Read her advance care directives!” I yelled over the phone. “I’ll be there as fast as I can. Please don’t move Mom!”

I pulled on my jeans and raced for the car, driving in the dark over the speed limit. I ran to her room with a copy of Mom’s Five Wishes form. Assistants started rolling her bed into the hall on the way to the elevator and the ICU.

Committed to Her Wishes

The nurse said she needed to get the doctor. He looked over the forms, stepped away for a few minutes, and returned to ask what I wanted. “Plain palliative care, please!” I answered.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care.

Fast forward. That’s precisely what happened, with my mother moved into a private hospice care room. My brother and I were allowed to camp with her in that room for the remaining three days of her life.

We facilitated a few short phone calls with her family, sang to her, read her favorite scriptures, and monitored her morphine. Then, before slipping into her final slumber, she told us of a clear new vision, where she saw relatives waving from across a bridge and preparing for a party.

“They have to wait for me to cross over that bridge before starting the festivities,” she said. Tom and my Dad were in that welcoming crowd, along with her mother and aunt. She finally said, “Awesome!” as she crossed her bright bridge.

Most Don’t Have End-of-Life Conversations

In June 2020, the National Poll on Healthy Aging was conducted for the University of Michigan’s Institute for Healthcare Policy and Innovation. A sample of U.S. adults aged 50–80 was asked about their advanced care planning.

Nearly two in five adults aged 50–80 had not discussed their health care preferences if they experienced a severe illness. More than two in three hadn’t completed an advance directive and durable power of attorney documents.

More than half of the folks who had not talked about their care preferences with others or completed related legal documents said it was because they needed to take the time to do this.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care. I hope my story encourages conversations with you and your loved ones. It’s a precious gift you can give them.

Complete Article HERE!

Dignity in death

— What is voluntary assisted dying

Voluntary assisted dying is a way to take control over death.

By Elissa Napier

Despite the taboo around VAD, the procedure has become legal in the majority of Australian states, allowing those who are suffering to breathe a sigh of relief as they seek to gain some control back in their life, and put dignity back into death.

Whether or not a person decides to access this service, Hall and Wiley said just knowing it’s available has helped to ease the mind of so many Australians.

What is voluntary assisted dying?

Voluntary assisted dying is a medical service offered to those who are eligible, to successfully end the suffering of someone in the late stages of a terminal illness by taking a prescribed substance to end their life on their terms, and as Wiley said, it’s all about choice.

Eligible people can choose if they want to administer the fatal substance themselves, or have a practitioner do it for them; they can choose when and where they’d like the event to take place, ensuring providing comfort and dignity in death.

VAD was kickstarted in Australia by broadcaster Andrew Denton, who watched his father suffer a “drawn out, desperate death”. Denton’s charity, Go Gentle, has played a major role in getting VAD laws passed in all Australian states.

So, what are the eligibility requirements?

A person must be:

  • diagnosed with an advanced disease or medical condition that will cause death within the next 12 months;
  • is suffering from intolerable levels of pain and discomfort;
  • is of sound mind to make the decision;
  • is acting voluntarily and without coercion;
  • is at least 18 years old;
  • an Australian citizen or permanent resident.

The process

Given the gravity of making the decision to undergo voluntary assisted dying, it’s not as simple as just asking for medication.

A person must make three request’s to a medical practitioner within the designated 9-day period. However, once a request is made, and right up until the administration of the fatal substance, there is no obligation for the person to follow through with VAD.

Once the first request has been made, a person will need to undergo a consulting assessment to ensure eligibility, and once the final request has been made, they will then need one final review before the official administration decision is made.

The assessments must be completed by two separate doctors who have received mandatory VAD training.

Source: Queensland Government

Whilst practitioners can refuse to participate based on conscientious objection, the doctor must still inform the patient of the process and provide other practitioners names who can assist; the same goes for religious facilities, they cannot stop or inhibit a practitioner from fulfilling their job at the request of a patient.

Once the process is completed, a touching detail to ensure dignity is maintained even after death, VAD will not be written as cause of death on a person’s death certificate; it will simply state the illness or medical condition the person was suffering from.

By allowing a dying person to take control of their death, dignity can be restored to its fullest.

Complete Article HERE!

Death with dignity is not euthanasia

By Kristen Fuller, MD

We are dedicated to helping our patients, but there are limits to what we can do to help.

A clinic patient of mine was dying of pancreatic cancer. He was as orange as a pumpkin and had an implantable morphine pump for pain. He was in palliative care and hospice, and regardless of medications to help alleviate his symptoms, he was miserable.

His suffering was unbearable. He wanted nothing more than to pass away sooner, in peace, and no longer be in pain.

“‘This is not living,’ he told me. ‘I am just waiting to die.’”
— Kristen Fuller, MD

He voluntarily stopped eating and drinking, refused a feeding tube, and eventually developed severe psychosis. I consulted with his medical team members about offering him “death with dignity,” but they were uncomfortable with this.

He passed away on day 12 by starving himself. His loved ones were beyond scarred by this experience.

The COVID-19 pandemic has exposed the profound tragedy of people dying alone in hospitals, suffering and scared, without the comfort of their loved ones. The pandemic demonstrated modern medicine’s limits in relieving suffering and granting someone peace.

How can we best serve our patients in such situations?

Ways to help patients at the end

Medical aid in dying—also known as death with dignity—is the voluntary act (for both physician and patient) to help end the suffering of a mentally competent adult patient who is terminally ill with less than a 6-month life expectancy (hospice-eligible). The patient has the right to ask for a prescription medication they can self-ingest to die peacefully.

Individuals who want this end-of-life care option tend to be offended when it’s called “assisted suicide,” because they desperately want to live, but are going to die whether or not they utilize this avenue.

The Journal of Palliative Medicine published peer-reviewed clinical criteria for “physician aid in dying”—not assisted suicide.[1] The term “physician-assisted suicide” is archaic and stigmatizing to physicians and patients who have experienced death with dignity.[2]

In the US, death with dignity or medical aid in dying are explicitly distinguished from euthanasia.

Euthanasia, also called mercy killing, is administering a lethal medication by another human being to an incurably suffering patient.[3]

It may be voluntary (requested by the patient) or involuntary. Euthanasia is illegal in the US, but voluntary euthanasia is legal in Colombia, Belgium, Canada, and Luxembourg, and is decriminalized in the Netherlands.

History and guidelines

Medical aid in dying was first passed as legislation in Washington state in 2008, and has since become available for patients in Washington, DC, California, Colorado, Hawaii, Maine, Montana, New Jersey, Oregon, Vermont, and Washington.

Multiple safeguards are in place to prevent cases of abuse or coercion.

The patient must be deemed competent, two physicians must authorize the medication, and there’s also usually a 15-day waiting period between the first and second doctor’s approval before a medication is authorized.

Suppose the patient chooses to take the medication after authorization. They can ingest the pills at their chosen time, choosing the manner and location of their death—one last act of control in the face of a debilitating illness.

What does the AMA say?

The AMA adopted a neutral position on death with dignity in 2019, affirming for the first time that “physicians can provide medical aid in dying according to the dictates of their conscience without violating their professional obligations.”[4]

The Association stipulated that physicians who participate in medical aid in dying adhere to professional and ethical obligations, as do physicians who decline to participate.

Other well-known national medical associations that have taken a neutral stance on death with dignity by withdrawing their opposition to the practice include the American Academy of Family Physicians, the American Academy of Hospice and Palliative Medicine, and the American Academy of Neurology.

Empowering patients

According to the Oregon Health Authority, approximately one-third of patients who receive prescription medication to pursue death with dignity in Oregon do not take the medication.[5]

However, they are said to be relieved that they are in control at the end of their life, which helps alleviate some anxiety about potential suffering in their last days. Each patient should be empowered to make end-of-life care decisions based on their unique culture, beliefs, and spiritual values.

“The power should be in the patient’s hands.”
— Kristen Fuller, MD

Hopefully, we can be conduits to give our patients respect, autonomy, and privacy during their last days.

Complete Article HERE!

What an End-of-Life Doula Can Do for You

— Sometimes, you need help navigating your grief and the dying process

Death and dying aren’t always easy subjects. Conversations about your end-of-life desires and the legacy you want to leave behind can be particularly difficult for some individuals, as well as their family and friends.

If you’re diagnosed with a terminal illness, understanding how much time you have left and deciding how you’ll spend it can be difficult to navigate. For friends and family members — especially for young ones who’ve never experienced a death in their family — understanding what happens when someone dies can be confusing and challenging.

When we broach the topic of death, we’re forced to confront our own mortality and come to terms with what will happen to our bodies when we die. But when we face the death of a loved one, we’re confronted with a different set of challenges. Sometimes, we’re dealing with an impending death long before it happens. Other times, death happens swiftly and suddenly in the most unexpected ways.

No matter how someone dies, we each find different ways to grieve the loss of a loved one. Sometimes, we have to handle all the logistics around someone’s funerary services. And then, there are all the things left unfinished in the wake of that person’s death — their hobbies, their dreams, their bills and their responsibilities.

While dying can sometimes be a complicated experience, having help along the way to process your grief and understand what’s happening can make the act of dying more manageable. That’s where having an end-of-life doula can help.

Palliative medicine physician David Harris, MD, and end-of-life doula and social worker Anne O’Neill, LSW, CDP, explain how end-of-life doulas work together with palliative care and hospice teams, and exactly what you can expect when hiring an end-of-life doula.

What is a death doula?

Birth doulas and death doulas function like two sides of the same coin. A birth doula is a trained professional that assists someone before, during and after childbirth. They work alongside your healthcare team to provide emotional and physical support, education and guidance to make sure you have a positive birthing experience.

Similarly, a death doula — also known as an end-of-life doula, end-of-life coach, death midwife or death coach — assists a dying person and their loved ones before, during and after death. An end-of-life doula provides emotional and physical support, education about the dying process, preparation for what’s to come and guidance while you’re grieving.

“A doula wants to do as much as they possibly can to help facilitate what the person and their family need,” says O’Neill. “Doulas make sure the threads are connected between the dying person and the important people in their lives, including their hospice team.”

End-of-life doulas aren’t licensed to provide any medical assistance, but they may advocate for the dying person’s wishes and needs while working together with healthcare providers.

“There is value in having an interdisciplinary team, with the idea that different fields have different things they bring to the table,” notes Dr. Harris. “The best way to give great care to someone is to involve different viewpoints, different levels of expertise and different types of expertise. End-of-life doulas and religious leaders both fall into that framework.”

In recent years, as a result of the COVID-19 pandemic and the surge of related deaths worldwide, there’s been an increased interest in hiring end-of-life doulas to help those who were dying and those who were grieving. There’s also been an increased interest in people wanting to become licensed as end-of-life doulas.

“For many people who are approaching the end of life, being prepared and having everything in place for when they do die is a very important thing. They don’t want their families to be scrambling, and they have certain ideas about what they want their funeral to look like,” explains Dr. Harris.

“Usually, in palliative care or hospice, we give them the space and a listening person to help them plan out what they really want. For many, it’s not as much about finding a funeral home or finding resources as it is just a hard thing to talk about.”

And in many ways, the core function of an end-of-life doula is to be present and listen to the needs of the person who’s dying and the needs of those around them who are grieving.

“We don’t die twice. We only get one chance to do this,” says O’Neill. “When you’re bringing in a doula, you’re bringing in a wide range of experience and a real desire to want to be there with that person and to make it as good of an experience as it can be.”

What exactly does an end-of-life doula do?

Each dying person’s needs are unique to their specific situation, but the services offered by an end-of-life doula could include a mix of the following:

  • Providing the opportunity to talk openly and honestly about the dying process.
  • Alleviating the anxiety, guilt and shame often associated with death and dying.
  • Developing a plan for how the person’s environment looks, feels, sounds and smells.
  • Coordinating with family and friends to evaluate visitation.
  • Overseeing 24/7 care alongside healthcare providers like hospice and palliative care.
  • Providing education and guidance related to other medical services like do-not-resuscitate orders and healthcare power of attorneys.
  • Creating guided meditations and rituals specific to a person’s religious faith or spirituality.
  • Sitting vigil with a person as they near their final moments.
  • Assisting with obituaries and planning funeral services.
  • Providing supplemental grief counseling and companionship after someone has died.
  • Finding creative ways to honor the person after they’ve died, which can include the person who’s dying as a part of that process and exploring that person’s life and legacy.

“Our goal is to provide the kind of support people need so that families aren’t exhausted. We want families to have a chance to rest and we want to ensure that people who are dying are not unsafe at home,” O’Neill adds.

Part of that process is making sure the person who’s dying is aware of what’s happening and, if they’re able or they desire it, to give them the space to confront their own grief and be an active participant in their dying process.

“A dying person is grieving their losses, too. They’ll never see their partners again. They’ll never do the things they love again. So, the doula allows a dying person to express their losses,” says O’Neill.

Along the way, an end-of-life doula may help with what’s referred to as “legacy work,” a process O’Neill says is about exploring the most meaningful moments of someone’s life and finding ways to pass on their legacy. Sometimes, this looks like putting together a scrapbook of memories. Other times, it’s about making those phone calls and writing those letters to long-lost friends or siblings and finding closure in other ways.

“Doulas can help facilitate those conversations to make sure they tie up those loose ends and they’re able to say what they want to say before it’s too late,” she explains. “I had one gentleman who always wore flannel shirts his whole life. He and I cut the buttons off of his flannel shirts and made bracelets for his granddaughters so that they would have those to remember him after he died.”

And end-of-life doulas can extend their services to those loved ones who are grieving by providing education and resources along the way. Sometimes, that means a doula may have to call the funeral home to announce the death of the person who died and make an appointment for the funeral. Other times, a doula may just be on standby should the family need their support during the final hours of a person’s life and in the weeks or months after they’ve died.

“Our hearts have to fill back up again after such a loss,” notes O’Neill. “As doulas, we’ve come to know these families, so we are able to give them what support they need afterward. We don’t just close the book and say, ‘On to the next one.’”

What’s the difference between a death doula and hospice?

End-of-life doulas are similar to hospice care in that both offer counseling, spiritual support and other nonmedical services to help a dying person and their loved ones during their final days. The medical piece is what sets hospice care and end-of-life doulas apart because doulas are typically not licensed to provide any hands-on medical assistance. That said, doulas are fast becoming an integrated part of hospice care teams. If your hospice care team doesn’t have an in-house doula, if you decide to hire one, the hospice care team should work with them throughout the dying process.

“An end-of-life doula’s approach to care is very consistent with hospice care and they’re very synergistic,” says Dr. Harris. “Where end-of-life doulas excel seems to be advocating for people who are dying, planning and having some of those crucial conversations.

“The medical piece is just a small part of somebody’s end-of-life experience and we have to acknowledge, as healthcare providers, that sometimes the medical pieces aren’t the most important pieces. Sometimes, it’s connecting, from one human to another.”

What type of training or certification does a death doula have?

There are a variety of accreditations available to those interested in becoming an end-of-life doula. Although there aren’t universally recognized requirements for becoming an end-of-life doula yet, organizations like the International End-Of-Life Doula Association and the National End-Of-Life Doula Alliance offer training and certification requirements that include:

  • Reading required materials.
  • Completing a work-study or class.
  • Participating in a multiday training program or workshop.
  • Obtaining recommendations from healthcare providers and people they’ve assisted.
  • Following a strict code of ethics.

“Individuals and their families are very vulnerable when they’re at the end of their lives, so that ethical piece really needs to be there and needs to be pronounced,” stresses O’Neill.

Should you hire a death doula?

The decision to hire an end-of-life doula is a very personal decision, one that should be discussed with you and your family in the same manner of understanding and respect that any other end-of-life decisions should be discussed.

“It’s not easy being cared for. When you see your doctors, you’re expected to sort of be able to clarify and explain exactly what’s going on physically, emotionally, spiritually. At the same time, you’re not feeling well. So, that’s a really hard thing to do,” states Dr. Harris.

“Having somebody like a death doula who has experience taking care of people at the end of their lives and who has the time to sit and be with that person and help them figure out what’s going on can be really valuable.”

Complete Article HERE!