Giving the gift of a ‘good death’

By Megan Crotty

It was a normal workday at Patty Burgess’ cosmetic surgery consulting business, then the phone rang.

It was a call for her coworker, Rona, from her doctor that made her visibly upset. The doctor had test results for Rona but would not give them to her over the phone, so Burgess said, “We’re going,” and the two drove to the doctor’s office.

The tests revealed stage 4 lung cancer.

“It was shocking, and it just changed everything on a dime,” said Burgess, who became Rona’s caregiver at the end of her life. “She was a dear friend. She helped introduce me to hospice, and I learned what an unbelievable, valuable benefit it was. The next thing you know, my whole life had changed.”

Serving a need

After being a volunteer, trainer and community educator for hospice, Burgess saw the need for better training of hospice volunteers and caregivers. Fast-forward 20 years, and Burgess is a national trainer, speaker and educator in end-of-life matters, and she has trained more than 15,000 volunteers, staff, end-of-life doulas, caregivers and students thanks to her company, Teaching Transitions.

The course, “Certified End-of-Life Specialist and Hospice Volunteer Designation,” is being offered at North Carolina’s Randolph Community College starting next month.

Patty Burgess

“People plan more for buying a car or going on vacation than they do for their own death,” Burgess said. “One of the things that our course seeks to do is try to help transform the experience of dying, grief and loss from one of only fear or sadness or being overwhelmed into peace, connection, meaning and even a little bit of awe. That’s a good death.”

She continued: “Lots of times the patient is ready, but the family is not. Sometimes, getting the family to come to terms with, and to understand the sacred passage — and all the connection and time and all the beauty that can really be had — can make a huge difference in the death of their loved one.

“I’m not necessarily wrapping death up with a big red bow because sometimes it can be pretty messy, but it’s usually messier when people don’t know what to expect; they’re fearful, and they’re overwhelmed. But if they know what to expect and understand that this is a normal, natural part of life and if we’re seeking a good death, it’s much more likely when people know what’s coming.”

Course details

Burgess said the immersive, self-paced, online course teaches students to cultivate a high level of compassion and empathy, and to eliminate factors that may obstruct the delivery of high-quality care and companionship to whomever they serve.

The course features 10 modules:

  • Welcome, Overview and Purpose of the Course
  • Hospice 101: Introduction to Hospice Philosophy, Benefits, Eligibility, & Team Approach to Care
  • Personal Death Awareness, Exploring Beliefs and Fears, Advance Directives
  • End of Life Communication: Speaking and Listening Differently
  • Clinical Care at End of Life: Signs & Symptoms of Approaching Death, Universal Precautions, Pain & Symptom Management, Safety in the Home, Actions When Death Occurs in Various Settings
  • Spiritual and Cultural Diversity and Inclusion in the Dying and Death Experience
  • Loss, Grief and Bereavement: Understanding, Coping and Healing: Supporting Others through Grief
  • Self Care & Resilience: Managing Personal Stress and Avoiding Burnout
  • Legacy: Last Words, Eulogies and a “Dialogue with Death
  • Putting it All Together: Volunteer Roles, Visit Etiquette, Ethics and Needs of the Dying

The course also meets and exceeds the Medicare regulations for hospices, and the training recommendations by the National Hospice and Palliative Care Organization (NHPCO). It is appropriate for personal or professional caregivers or healthcare staff wishing to enhance skills and credentials.
It is also valuable for various roles and disciplines (as either entry-level training or continuing education), such as nurses, grief counselors and more clergy.

“There are lots of times when we have nurses in the program who have worked in oncology and spent their time trying to keep people alive,” Burgess said. “They never really dealt with death. Initially, this course was designed for hospice volunteers, but it’s for the layperson, students looking to enhance their professional credentials… We’re all going to become a caregiver to someone.”

Burgess was one of seven original founders of the National End-of-Life Doula Alliance (NEDA) in 2018. Today, NEDA has welcomed more than 1,300 members since its formation and continues to grow as this healthcare segment gains popularity and utilization.

Complete Article HERE!

How do you want to die?

— Society doesn’t often talk about dying, but an end-of-life doula in Durango says we should


Christine Pollock, an end-of-life doula, says the quality of one’s dying experience is largely dependent on his or her preparation going into it.

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Years before she received any training to prepare for working with those nearing the end of life, Christine Pollock gathered a small community of supporters as a friend of hers prepared to die.

“As time progressed and she got closer and closer to death, she embodied more and more light,” Pollock said. “Even though she was in so much pain and suffering, she became like this beacon of light.”

It was July 2013. As Pollock’s friend took her final breath, a powerful breeze cut the still heat of the day and poured through the window.

“The veils are very thin between being on this side and being on that side,” Pollock said. “I think our hearts can hold a lot more than we allow them to, especially when it comes to compassion.”

Pollock is an end-of-life doula in Durango. She describes her work as that of a front-line caregiver who provides comfort care and views herself as a conduit – she helps facilitate the dying experience that those passing wish to have.

Just as doulas transition people into the world, end of life doulas transition people out of it.

The work of an end-of-life doula is not medical, at least in Pollock’s case. She does not administer medication or take the place of hospice or palliative care.

In his 1971 elegy for the aged, “Hello in There,” the legendary folk artist John Prine wrote of the solitary old folks to whom he delivered mail during his days as a letter carrier. It’s refrain concludes, “old people just grow lonesome, waiting for someone to say, ‘hello in there, hello.’”

It is this experience that end-of-life doulas hope to prevent.

“The whole thing is about changing a cultural paradigm around how we view death, taking it from a fear-based perspective, a scary experience, into a sacred and beautiful transition,” Pollock said.

As long as people have been living, they have been dying. The experience, in many cases, used to be as much an exercise in mourning as it was a celebration of life. As communities grew, it became easier for people to slip through the expanding gaps in the social web, Pollock says. And as the bonds of community have weakened, the fear of death has increased.

“Everybody rallied around a birth, everybody rallied around a death and honored their life, honored their gifts,” she said.

She views her work as that of a stopgap. It takes the place of a community – or facilitates the creation of one – to celebrate a life as it comes to an end. Doulas see death as a transition of a threshold; the quality of that transition, Pollock said, hinges on ones preparation.

She began this work in an official capacity after a six-month training at the Conscious Dying Institute in Boulder, which she attended in 2019. The extensive training asked participants to read in depth on the topic, come to terms with their own grief and practice creating plans for the final three months of someone’s life.

Pollock leads meditation and wellness retreats as a day job, as her practice as an end-of-life doula is not a full-time occupation. The line between client and companion appears blurred in the cases when she counsels those nearing death for no compensation.

In the last year, she said she had three paying clients, between eight and 10 whom she worked with free of charge, and an additional smattering of telephone consults.

The work of an end-of-life doula is different according to the needs of each client and the person doing the work. Pollock works from a toolbox filled with guided meditations, music, massage therapy, Reiki and an assortment of literature and mantras.

A lack of discussion around death as a society inhibits planning; Pollock’s primary mission is to encourage those approaching death to develop some sort of plan. She works with clients to create “vision maps” that could include anything from exercise in forgiveness to visiting the ocean.

“We fill the care gap,” she says.

The soft-spoken caregiver is mindful of individual religious or spiritual beliefs and seems adept at fitting her own work into the existing understanding of life and death that a client and family maintain. Whatever one’s conception of an afterlife may be, Pollock works to ease the transition into it.

Although working with an endless stream of dying clients could foist an undue weight on an end-of-life doula, she says the work enriches the meaning in her own life.

“It’s truly a calling,” she says. “It’s a life purpose and everything that I have done up until this point in my life has led me to this precipice of the final work that I will do with my life.”

Pollock hopes that eventually, her line of work will be rendered unnecessary by a change in the cultural conception of death.

“We’re headed back to honoring death as a vibrant part of life, to take the fear out of it,” she said.

Complete Article HERE!

Preparing for the natural end of our lives

— Most of us don’t want to talk about death. But we need to be prepared for the inevitable.

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Our culture soft-soaps the inevitability of death.

Yet, at some unknown time, we’ll all come to the natural end of our lives. This is certain. But our culture doesn’t help prepare us for this reality. In today’s world, adults can talk about almost any subject — other than death. It’s not a topic that comes up in day-to-day conversation, in coffee shops with friends, or at social gatherings. It’s a taboo subject.

We don’t discuss death with our kids. We’re fearful they’ll be scared. Children are often excluded from funerals and memorial services. Indeed, we’ve transformed “funerals” into “celebrations of life.” I never understood that. To me, a celebration of life is a birthday, not the day life ends. Death is the enemy to be conquered or ignored, until we can’t.

Over my long career as a psychologist, I’ve had the privilege to work with many adults who were terminally ill, supporting them as they came to the end of their lives. They taught me a great deal about living and about dying. There’s a long line of adults who hope to die in their sleep. But that’s not always the case. None of us really know how we will experience our ending or what we feel or think, particularly if we have some time when we are actually dying.

Several years ago, my wife and I were flying back from Europe. Somewhere over the Atlantic Ocean, our jet lost altitude so quickly that all of the overhead cabins opened, and the flight attendants were knocked to the ground. Passengers started screaming. The plane shook violently, and it was several minutes before the pilot came on the loudspeaker. All of us thought this was the end. To my surprise, a great calm came over me. I reached over to hold my wife’s hand, thinking we should be connected if we were coming to the end of our lives. I hope that when my end does come, I will feel the same way.

So how can we be better prepared for the natural end of life?

Consider your beliefs about death. Many religious adults feel confident that death will precede an afterlife. None of us know for sure what will happen when we die. It’s helpful to reflect on your beliefs, fears and thoughts about death. It’s also helpful to consider how our thoughts about death impact our lives.

If you were to come to end of your life tomorrow, how would you feel about how you’re living your life today? Many of my patients, when diagnosed with a life-threatening disease, make radical changes in how they live. It’s not necessary to be diagnosed with a dread disease to consider how you’re living and whether it’s aligned with what’s important to you.

Reflect on how you cope with loss of control. Many of us older folks are more comfortable with the reality of death but dying is a different matter. There’s a loss of control, loss of agency, and loss of independence, and that can be very frightening for some adults, especially if loved ones came to end of their lives with a disease that is protracted — like cancer or heart disease.

For older adults, it’s important to designate a health care proxy to make health care decisions should you become incapacitated. It’s essential for elders to consider how they want to handle end-of-life decisions and to communicate those wishes to their families. Also, be sure to discuss this with your primary care provider at your annual comprehensive visit.

Complete Article HERE!

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!

Dealing with pet loss

— How to help a grieving pet parent

Pet parents often say that losing their animal companions is as hard as, if not harder than, losing a human family member, experts say

By Marlene Cimons

Since 2012, Dana Topousis has lost four dogs — all young Dobermans — to illness.

Galen died of heart disease; the others, Homer, Romeo and Ruthie, succumbed to different cancers. So, she knows grief, which she calls “a lonely thing.”

“I live by myself, and my animals are my family, so it takes me a long time to recover,” said Topousis, of Davis, Calif., head of marketing and communications for the University of California at Davis. “Also, because my dogs were young, there’s unexpressed love — you think about all the things you won’t get to do with your dog.”

Pet parents often say that losing their animal companions can sometimes be as hard as, if not harder than, losing a human family member, experts said.

“Your pets follow you into bathroom. They sleep with you. They are your shadow. Human family members don’t do that,” said Leigh Ann Gerk, a pet loss grief counselor in Loveland, Colo., and founder of Mourning to Light Pet Loss. “Humans don’t go crazy with joy when you come back inside after getting the mail. Human relationships, while important, can be difficult. Our relationship with our pets is simple. They love us just as we are.”

People want to help, but often don’t know how. Sometimes their comments can hurt.

“Greater society doesn’t recognize the intensity of this loss and the grieving that comes with it,” said Jessica Kwerel, a D.C. psychotherapist who specializes in pet loss.

How to support grieving pet parents

We spoke with pet loss grief experts about how people can support grieving pet parents. Here is their advice:

Avoid euphemisms and platitudes. Don’t say, “They are in a better place,” since “the only place you want your pet is in your home,” Gerk said. Other things not to say: “They’re running free,” “They’re not in pain anymore,” “They’re with your other dogs now,” “They’ve gained their wings” or “Everything happens for a reason.”

While some people might find these phrases healing, others may see them as dismissive, Kwerel said. “That’s trying to apply logic to an emotional experience,” she said.

Members of one social media dog rescue group told Topousis that one day she would see Romeo — who lost a leg to osteosarcoma — running again on all four legs. She cringed. “I know they meant to comfort me, but it was a painful thought,” she said.

Never say an animal has been “put to sleep,” when explaining a pet’s death to a young child. They may fear going to sleep at night. “Instead, you can say: ‘We helped him along in his dying process,’” Kwerel said.

Be careful with Rainbow Bridge imagery. The Rainbow Bridge is a mythical overpass where grieving pet parents are said to reunite forever with their departed animals.

“That’s not a belief system for some people,” Gerk said. “I’ve had clients say they want to believe in the Rainbow Bridge, but they don’t know if they do. I remind them: if it brings them comfort to believe in it, then believe in it.”

Provide validation with facts, if possible. I lost one of my dogs, Raylan, recently to splenic hemangiosarcoma, an aggressive and fatal cancer. After surgery and chemotherapy, Raylan enjoyed five terrific months before the cancer returned.

A stranger wrote this to me via a Facebook dog rescue group: “I am a human pathologist. This kind of cancer is essentially incurable in both people and dogs. Five months of quality time after first diagnosis is fantastic. You did the right thing, no matter how hard. Don’t second guess yourself. Further efforts would have just prolonged suffering.”

Guilt often goes along with mourning, and his comments eased both for me.

Share your pet grief story. It can help the grieving pet parent to know you’ve been through it, too, but don’t make it about yourself.

“Don’t compare grief situations,” said Michele Pich, assistant director of the Shreiber Family Pet Therapy program at Rowan University. “That won’t help. You can say: ‘I understand how painful this can be,’ but keep the focus on this current experience.”

If you knew the pet, share your memories. It’s helpful for pet owners “to know their animal has made an impact on other people’s lives as well as their own,” Pich said. And use the pet’s name rather than saying, “your dog” or “your cat,” Gerk suggested.

Rituals are wonderful. Make a donation to a rescue group or plant a tree in that animal’s honor. Write a poem about the pet, or even an obituary. Topousis’s co-workers used photos of Romeo from her Facebook page to commission a painting of him that now hangs in her living room.

Complete Article HERE!

Dying Can Cost Loved Ones $20,000 Before Lost Wages And Worse Health, New Report Says

By Deb Gordon

If you think the cost of living in the United States healthcare system is high, wait till you see the cost of dying.

A new report details the direct financial impact of a loved one’s death, as well as the less tangible costs of loss.

The 2023 report on The Cost of Dying was released today from Empathy, a company that helps people manage the logistics and emotional burdens of death. The report includes results from a survey conducted with nearly 1,500 people who had lost an immediate family member in the prior five years.

Overall, the average direct costs related to the death of a loved one can reach $20,000. That’s before factoring lost income from taking time off or healthcare costs required to manage health and mental health symptoms.

On average, survey respondents reported that they paid $3,584 to the funeral home (lower than the 2021 national median cost of $7,848 reported by the National Funeral Directors Association). Burial plots cost respondents an average of $1,841. Smaller expenses, such as catering, officiants, flowers, music, and invitations can add more than $1,700 combined, making the funeral the single biggest expense associated with a loved one’s death.

But the costs don’t end with the funeral. Survey respondents reported paying an average of $4,384 to deal with financial matters, such as hiring accountants and paying bills.

Respondents spent nearly $5,000 on legal matters, including lawyer fees and costs associated with selling off assets. Disposing of real estate can add another $4,000.

Many respondents reported using their own financial resources to pay death-related bills; 42% used their own credit cards or checking accounts and 36% used their savings. Just 14% were able to tap into funds specifically designed for these purposes, such as life insurance or last arrangements insurance.

Rinal Patel, founder of Pennsylvania-based Suburbrealtor, experienced firsthand the costs associated with the death of a loved one.

In February 2022, her 35-year old brother died of a heart attack while he was in Dubai for work. Patel spent more than $4,000 to fly his body back from Dubai and footed the entire bill for his funeral, about $10,000.

“He was my only brother, and I couldn’t let him be buried in a foreign country,” she said.

In addition to direct costs, Patel’s brother’s death also cost her income. As a business owner, Patel missed out on deals while she was away mourning her brother.

“His death cost me a lot financially, emotionally, and psychologically,” Patel said.

Lost work

Death-related costs hit at a time when many people can least afford them.

Nearly all (92%) employed respondents reported taking time off or adjusting their work commitments to manage the experience. For many workers, that costs them money indirectly.

Nearly one-quarter (23%) of respondents reported taking unpaid time off, while about half (51%) took paid time off. Women were more likely to take unpaid time off than men, and half as likely as men (9% vs. 19%) to report feeling satisfied with their employer’s bereavement leave policy.

Empathy’s report says that most U.S. companies offer one to five days of bereavement leave. But most people need more time than that to manage logistics of death, let alone to properly grief.

Jasmine Cobb, a licensed grief and trauma therapist from Texas, was lucky that she could use accrued paid time off when her mother died in 2020 from complications with metastatic breast cancer.

Though her employer at the time was supportive, Cobb noted the mismatch between most employer bereavement policies and employee needs.

“Generous bereavement is an oxymoron and is generally non-existent,” she said. “The most I’ve heard of companies extending is about two to three days max, which tends to be incongruent when experiencing a profound and significant loss.”

The health costs of death

In addition to significant financial impact, 93% of survey respondents reported having experienced at least one health symptom as a consequence of their loss. A majority of respondents experienced at least two symptoms and 34% had four or more symptoms for more than a few months.

Persistent symptoms included anxiety, reported by nearly half (46%) of respondents. Other symptoms included disrupted sleep (38%), weight loss or gain (33%), irritability or anger (30%), and memory impairment (30%).

Women were more likely than men to experience symptoms for a year or longer. For example, 23% of women and just 12% of men reported experiencing anxiety for more than a year. Women were twice as likely as men to experience prolonged sleep disruptions (16% compared to 8%) and weight gain or loss (14% vs. 7%). One in ten (11%) women reported persistent panic attacks compared with 6% of men.

Tennessee-based Brittany Nicole Mendez, 27, a marketing officer at FloridaPanhandle.com, still experiences symptoms associated with loss, seven years after the death of her brother.

Mendez, then 20, was visiting her family in San Francisco for Christmas when she learned her 22-year old brother had been hit by a car while walking on a pedestrian crosswalk. He died the next day.

Though the direct financial burden fell to her parents, who started a GoFundMe to help with the unexpected funeral costs, Mendez didn’t get paid for the extra weeks she spent in California with her family.

The real cost to Mendez has come in the form of lasting mental health challenges.

“I never experienced true anxiety, panic attacks, or depression until after he passed away,” she said.

After her brother’s death, Mendez had difficulty eating and sleeping. She still suffers from extreme panic attacks caused by the fear that she or a loved one will lose their life unexpectedly.

Danielle Jones, 38, of Tampa, Florida, also experiences lingering health impacts of her mother’s death from heart failure in 2021. Jones’ mother died on her 57th birthday.

Jones paid for everything out of pocket, including travel and the process to clear out her mother’s house. She minimized expenses by replacing a funeral with visitation with specific friends and family. Her cousin, who worked for a funeral home, helped out by paying for her mother to be cremated.

But the nonmonetary costs have taken a toll on Jones.

“Her death rocked my world,” she said. “It was hard to go back to work. I cried between work calls.”

Jones started seeing a therapist, but the therapist was disorganized because she herself had just had a death in her own family.

“I quit seeing her,” Jones said. “I couldn’t handle the missed appointments.”

Jones said there were many nights when she could not sleep through the night. She said she only ate if someone reminded her to. Cooking, grocery shopping, and taking walks all reminded Jones of her mother. They would speak daily during these routine activities.

“I couldn’t walk int my kitchen because it made me think of her,” she said. “It was hard to get back to my life as I once knew it.”

Though Jones is a certified nutritionist and wellness strategist who writes about her experience with grief, she said she’s gained 20 pounds since her mother’s death. She blames the emotional stress of her grief.

It may be no wonder that the effects of death can last so long. The process of managing a death can take a lot longer than expected. Resolving all the financial matters associated with a loved one’s death took respondents about a year on average. They spent an average of 20 hours per week dealing with these issues. More than half (62%) said that these issues took longer to complete than they had expected.

Planning can offset the direct and indirect costs of death. Not only does it relieve financial burdens if some expenses have been prepaid, but people whose loved ones pre-planned their funerals reported missing less work and experiencing less anxiety, sleep disruption, and memory impairment. Pre-planning also reduced the likelihood that people would have trouble enjoying everyday activities after they lost their loved one.

Complete Article HERE!