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?

By

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!

Choosing to halt nourishment: an end-of-life decision

— A palliative-care specialist discusses his role with terminally ill patients who want to hasten death by not eating or drinking.

A hospice nurse provides palliative care to a man with Parkinson’s disease and cancer.

by Brian Donohue

It’s not only patient cases that inform clinicians’ expertise. Geriatrician David Gruenewald took a lesson from his mom, Mary, who at the time was a resolute, capable woman in her late 80’s. As Alzheimer’s encroached conspicuously into her life, she considered hastening her death so as not to burden her children.

“She saw this as a way of maintaining control over the end of her life,” Gruenewald recalled. “We had talked about that for decades, so it was no great surprise that she started talking about possibly ending her life.” The plan his mom considered was to stop eating and drinking.

Gruenewald, a UW Medicine specialist for older adult patients, is medical director of the Palliative Care and Hospice Service at VA Puget Sound Health Care System. Keenly aware of the growing tidal wave of people age 60 and over, he recently delivered a training presentation to dozens of clinicians. Its focus: how to talk with patients who are contemplating voluntarystopping of eating and drinking, “VSED” for short.

picture of David Gruenewald with his mother, Mary
Dr. David Gruenewald with his mom, Mary Matsuda Gruenewald, in 2017. She died in 2021.

As an option for people with decision-making capacity who want to manage their death, VSED has not drawn the same public scrutiny and controversy as medical aid in dying, in which a clinician provides drugs that a patient takes — a practice that’s legal in only 11 U.S. states.

“Workers in palliative care haven’t been much aware of VSED, even though very likely it has been going on for millennia,” said Gruenewald. He added that VSED is an important option for patients expressly because it does not require a doctor’s presence or participation.

“It represents personal autonomy and choice, and healthcare organizations like the American Nurses Association are publicly declaring that VSED is an acceptable, valid approach when palliative care fails to relieve end-of-life suffering,” he said.

When a patient is nearing the end of life or has a terminal condition, and expresses an interest in hastening death, palliative-care providers work to establish that the person has full decision-making capacity that’s not clouded by conditions such as depression or advanced dementia, and has suffering that cannot be adequately relieved by other interventions.

“The first thing is I want to understand is why you are asking for us to help you die. I want to fully understand that before we start talking about nuts and bolts of VSED. In my mother’s case, the reasons for her suffering were key to every part of the conversation that happened after that,” Gruenewald said.

In his presentation, Gruenewald reflected on the experience of a male patient, 67, who had advanced cancer and could not tolerate more chemotherapy. The patient had been admitted to the hospital with pneumonia and voiced a wish to go home and die by self-inflicted gunshot.

“He did not see value in continuing to live and being unable to do the things that formerly gave his life meaning. In talking with him, it was very important that I understood his suffering — the physical, the emotional, interpersonal and spiritual reasons,” Gruenewald said. “And then to see if he was open to considering a less violent path, which turned out to be VSED.

picture of David Gruenewald
“The first thing is I want to understand is why you are asking for us to help you die. I want to fully understand that before we start talking about nuts and bolts of VSED,” said palliative care specialist Dr. David Gruenewald.

“We were able to establish trust, and then to talk through that option and create a plan with supports. It wasn’t quite what he had envisioned, but it was acceptable to him.”

Research indicates that patients who pursue VSED are typically over age 80 and significantly burdened by disease, dependent on others for care, and face a short life expectancy.

Although VSED is not very painful, Gruenewald said he would not recommend it to relieve suffering from severe physical symptoms in the final days of life. The VSED process usually lasts one to two weeks and requires resolve to carry out. Pangs of hunger and thirst typically diminish within a couple of days; dry mouth can be managed with ice chips and over-the-counter products. But the patient will grow progressively weaker, and dehydration may bring agitation and delirium. Physical and emotional support from family members and friends can help get through this phase.

“The way you die has an effect on the people that you leave behind,” Gruenewald said. “And there is evidence that, for many people, VSED can be more peaceful than dying by medical-assisted dying.”

VSED’s lack of immediacy gives the patient time to reminisce over stories and to say goodbye to friends and family. This opens the process and can make it more harmonious for all, Gruenewald said. Another advantage: It gives the patient time to reconsider.

Mary Gruenewald lived another seven years after she initially broached VSED.

“She was in assisted living by then,” her son recalled. “For most of that time, it was at least acceptable, if not high, quality of life. And she was continuing to contribute meaningfully to friends and family in a way that other people really cherished. Those would have been years of life that she would have forgone.”

Complete Article HERE!

Notes From a Caregiver

— A husband tries to strike a balance between living in the present and contemplating the future as his wife’s Alzheimer’s disease progresses

David and Cheryl McNally

“I hate it! I hate it! I hate it!” The tears that flow down her cheeks I am powerless to stop. I hold her hand and respond in the way she has requested, not with words of encouragement but with the truth of her reality.

By David McNally

“Yes, darling, it’s bloody awful,” I say. What must it be like to be losing your mind, to be in a mental fog, desperately seeking to find your way through, only to discover the fog thickens?

My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating.

I keep this at the forefront of my own mind as my wife’s Alzheimer’s progresses, and I am pulled every which way with caregiving duties. Despite needing personal support, the one person who previously was my source of comfort is incapable of giving it to me. And I accept this reality. Her emotional pain is as much as she can handle. My resilience to stay the course must come from other sources.

Caregiving for a spouse with Alzheimer’s is the experience of watching the person you love gradually disappear. My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating. Not without a fight, mind you. It’s her inability to track a conversation, however, that is becoming too difficult. Her withdrawal is slow but evident.

Our journey is unique in that my wife is choosing to die on her own terms. We are now at the stage where she has put down a marker as to when this will happen — within the next year. Cheryl, my wife, will VSED (Voluntary Stop Eating and Drinking). There will be no memory care unit, no unnecessary suffering for her or her loved ones. When life holds no more joy, and nothing matters anymore, she will begin the process.

Suspension of ‘Normal’ Life

In so many ways, therefore, “normal” life is suspended for me. But then, what is normal at the age of 76? My role as a caregiver is not an aberration; there are millions meeting the needs of loved ones with debilitating, terminal illnesses. What racks one’s own emotions is witnessing the incremental progress of this disease, and the waiting. One is caught in the conundrum of not wanting your wife to suffer but not being ready to let her go.

There is also the guilt associated with looking to the future, a future beyond and without Cheryl. How can I think of such things! Yet wisdom tells me my thoughts are understandable. It is nature’s instinct for survival. Almost twenty years ago, my first wife died of ovarian cancer. I was 56 with potentially many years ahead of me. Now at 76, there are obviously fewer years, but what if there are ten or more? Giving up on life is anathema to me.

This attitude sustains me until it doesn’t. The confidence that I will be okay can be severed unexpectedly. Recently, while cleaning the kitchen, I asked “Alexa” to play Andrea Bocelli. As if to ensure I was fully aware of the grief to come, Bocelli began with, “Time to say goodbye.” I sobbed, as the enormous void soon to be in my life washed over me.

“Then again,” says my incredibly active mind, “who is to say you won’t go first. There is no evidence of illness, and you have a high sense of well-being, but don’t get ahead of yourself. Remember your own debilitating cancer treatment ten years ago. Yes, you were cured but another unpleasant surprise could be on its way.”

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Trying to Make Sense of Caregiving Experience

This is also not Pollyannish or being in denial, but an understanding of how joy and grief can co-exist. Ironically, Cheryl and I laugh a lot. I have the heritage of a British wit and she has a wonderful sense of humor. I don’t believe I have seen anything more beautiful than when her face lights up with a spontaneous smile. She is a magnificent audience of one. That is more than enough applause for me.

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Life is a mystery. That is my current conclusion from my time on this planet. How does one reconcile two wives with terminal illnesses? Railing at God serves no useful purpose. Well-meaning people utter a popular admonition: “God doesn’t give you anything you can’t handle.” My theology is God does not designate illness to one person and not another. That being said, I do believe that within each of us is a spirit that enables the transcendence of enormous difficulties.

Being a reflective person, I endeavor to make sense of this caregiving experience. Several years ago, I wrote a book called “Even Eagles Need a Push.“To quote from my own writing, I stated: “I have been down many paths looking for happiness. But nothing has made more sense and resulted in more contentment and fulfillment than this understanding — the purpose of life is to be a growing, contributing human being.”

There are certainly growth opportunities as a caregiver: patience, surrender, compassion in action, letting go, and acceptance, to name a few. Moreover, contributing to the safety and security of another is as purposeful as it gets. I have no answer to why life has led me to this place and no idea of what the future holds. I am willing, however, each day to step into that mystery.

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!