My husband wanted assisted dying, but was denied.

— It’s only right people should have the option

Paul and Alain on their wedding day.

By Patrick Kelleher

In September 2019, Alain du Chemin was diagnosed with a brain tumour.

At the time, he was living with his partner of eight years, Paul Gazzard. The pair had met on Grindr in 2011 – Paul was such a novice to the app that he couldn’t get his profile picture the right way up, and Alain sent him a cheeky message saying he had neck ache from trying to look at his upside-down face.

“For some bizarre reason I thought it was hilarious, and we just got chatting, met up, and then the rest is history. Very quickly I moved in with him,” Paul recalls.

Their life together was a happy one, but after months of suffering with headaches and disorientation, Alain was told he had a tumour, and that it was terminal.

Paul (L) and Alain (R). They are sitting outdoors on a bench and both men are laughing.
Paul (L) and Alain (R).

He was a pragmatic person, Paul says, and immediately started researching his options.

“As he was reading more and more about what the end game might be, he discovered a lot of things – that people with brain tumours, towards the end, may not have all their faculties, can’t speak properly, can’t do a lot for themselves, become really confused, and so on. And he decided at that point that wasn’t really something he wanted to go through.

“That’s when he started looking into the whole assisted dying process and what it entails.”

Assisted dying describes the act of a terminally ill person being prescribed drugs, at their request, that end their life. A UK parliamentary briefing uses the term to cover instances where the patient self-administers the drugs, and where healthcare professionals administer them on request.

By that time, Alain was living back in Jersey, where he was from originally. The problem was that assisted dying was illegal there, as is the case in most European countries.

One of the few places where assisted dying is possible is Switzerland. Many people from across the world flock to the country so they can die on their own terms.

Paul and Alain on a plane on their wedding day. Both men are wearing tuxedos and the plane has been decorated.
Paul and Alain on a plane on their wedding day.

It took a while for Paul to realise just how serious Alain was about dying in Switzerland.

“He started saying, ‘I want it to be a celebration, I’d like to have certain close friends go with me, we’ll have a great party before I go off’. It was quite a lot to take in.

“Previously I had no view on assisted dying at all. I mean, thinking about it, why would you unless you or someone you loved were in that situation?

“You could tell he was absolutely adamant this was what he wanted to do… I think what I struggled most with was timing, really. When do you know now is the right time to go?”

‘Laws must change to a more humane model’

In order to undergo assisted dying, you must be considered competent to make that decision at the time of death. That presents specific challenges for people with terminal illnesses like brain tumours – for Alain, it meant he would have to die when he was still relatively healthy.

“He was fully supported by me, close friends, his family – we knew the sort of person he was and if he had something in his head, it was going to happen.”

While Alain explored his options, he and Paul worked on making the most of their time together. On Valentine’s Day 2021, they got married with around 20 guests in attendance.

Paul and Alain on their wedding day. they are pictured signing the marriage register in a registry office.
Paul and Alain on their wedding day.

Shortly afterwards, Alain’s condition started to deteriorate rapidly.

“At that time, I think he was feeling things were changing quite a bit, and the planning really had to be kicked up a bit,” says Paul.

“We have a friend who’s a pilot and he was able to get a private plane to take us to Switzerland, which was pretty much one of the only ways during that time [at the height of the COVID-19 pandemic] that we were going to be able to get there.”

The cost of hiring a private plane was going to be tens of thousands of pounds – and it caused “an enormous amount of stress”.

In the face of all those pressures, they ran out of time. Alain reached the point where he would no longer be considered competent enough to choose to undergo assisted dying.

On 1 May, 2021, Alain passed away in a hospice after a period of rapid deterioration.

Alain never had the chance to go through assisted dying – but Paul says he might have if the law was more humane.

Paul and Alain on their wedding day. They are both wearing suits and are standing on a red carpet outside a private jet.
Paul and Alain on their wedding day.

That’s why Paul is now a campaigner for better assisted dying laws. He’s working with Dignity in Dying, a campaign group that believes everybody should have the right to a good death.

YouGov polling shows there’s broad support in the UK for a change in the law. Three out of four people believe terminally ill adults should be allowed to choose when their lives draw to a close.

“It’s about choice,” Paul says.

“I think it’s only right people should have the option available to them.”

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.

By

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.

By

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!

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!

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!

Are Wearables Helpful for Dying Patients?

— In 2009, health tech wearables hit the ground running and never looked back. Today, they’re still at the forefront of healthcare technology and expanding wildly like the old American west. Researchers and healthcare systems are excited about the promising ability of smart devices to monitor wellness and fitness, detect health problems early, and offer individualized advice like a personal coach.

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  • Health tech wearables are devices like smartwatches, smart rings, smart clothing, smart patches, and implantables to monitor and support health and wellness.
  • Wearable health devices do offer benefits to terminally ill patients but can also present some risks.
  • Wearable devices may be more helpful for palliative care patients who still have years to live than hospice patients with less than six months.
  • Smart devices could support the health of caregivers who have little time for their own wellness.
  • Patients with a terminal illness must consider not only the benefits but also the risks before using a health wearable.

These devices are designed to support healthy living. However, how effective are they for dying patients? Can smart wearables help them, too?

What are “wearables?”

Two MIT professors created the first wearable technology in 1960. Their small computer fit into a shoe to improve their gambling outcomes at the roulette table. It took decades for technology to catch up with them.

In 2009, Fitbit hit the market as the first fitness tracking device, logging steps, distance, estimated calories burned, and sleep. Today, with 30% of Americans wearing health devices, people can buy smartwatches, smart rings, smart clothing, and even smart patches to monitor and support their health and fitness goals.

Healthcare wearable technology also includes devices implanted under the skin in various parts of the body. In the coming years, we may even wear electronic skin. Thin and stretchy like a temporary tattoo, “E-skin” is a clear, electronic adhesive placed on the skin to monitor your health.

Giving you minute-by-minute details about your wellbeing, wearable smart devices measure your health to monitor conditions and improve wellness. Some devices offer the ability to send this data to your doctor remotely.

Are wearables good for EOL patients?

End-of-life (EOL) is a term used for terminally ill patients who have six months or less to live. However, depending on where they are in their incurable health journey, patients with a terminal diagnosis can live for many years.

Palliative care is a specialty designed to care for seriously ill patients. It’s proven to help them live better and longer. Hospice is a type of palliative care for patients during their last six months.

Researchers are beginning to study smart devices for palliative care patients. Yet many palliative specialists are skeptical of using wearables for patients whose goal isn’t health progress but the quality of life in their remaining days.

In the end, as with any new technology, wearables offer both benefits and risks for EOL patients.

Benefits for hospice patients

When seriously ill patients enter their last six months of life — becoming “hospice eligible” — they no longer focus on treatment and recovery.

Most hospice workers stop checking vital signs, blood work, and other precise details of disease progression. They also remove as many medical devices as possible to “de-medicalize” the dying process. Instead of curing the disease with treatment and procedures, they help the patient live the best they can for their final months. They focus on symptom management, spiritual care, mental health counseling, end-of-life wishes, and companionship.

“Devices are a part of the medicalization of death. Unfortunately, in some cases, like advanced cancer, smart devices could cause over-treatment. When a cure is no longer possible, over-treatment increases patient suffering.”
Rebecca Gagne-Henderson, PhD, ACHPN

For smart devices to support the de-medicalization of end-of-life care, they would need to focus on the quality of life and comfort rather than improvement.

In 2021, Frontiers in Digital Health published a proof-of-concept article on a smart patch that would monitor dyspnea — shortness of breath — one of the most common symptoms of dying patients. Placed on the patient’s chest, the patch senses distressed breathing.

Though it’s a worthy concept, few healthcare teams need a monitor to assess dyspnea in an EOL patient. To a nurse or a certified nursing assistant, labored breathing is easy to identify and treat.

Veteran caregivers know there’s a risk of monitoring a device instead of the patient. While monitors are helpful and even vital in some circumstances, they can distract caregivers from carefully assessing the patient with their unique symptoms and needs.

Then again, the smart patch may support medically untrained caregivers at home by helping them identify breathing difficulties in their dying, unresponsive loved one. It’s possible a smart device could help teach them when to give comfort medications or reposition the patient.

However, monitors can also distress family members and patients with obsessive monitoring rather than peaceful, simplified care focused on the patient’s comfort.

Other useful wearables for end-of-life patients are devices that predict depression and anxiety. Mental wellness is a main concern for EOL patients. Some have difficulty expressing sadness and worries, and many healthcare workers are too busy or afraid to talk about it with their patients.

Furthermore, a smart device could help monitor a patient’s mental health symptoms — whether in a hospital or at home — and notify their loved ones or care providers.

Ideally, someone in their final months always has loved ones close by to assess their wellness. This relationship, as opposed to wearable technology, is the best treatment for the anguish of dying.

Unfortunately, however, many people still die alone — most without hospice care. Perhaps wearables could help palliative care teams remotely monitor patients dying without loved ones and trigger home visits when they need them.

Benefits for terminally ill patients

Patients can live with incurable diseases for years after their initial diagnosis. Wearables for this population are more promising than for hospice patients with less than six months to live.

Chronically ill patients dread another hospital admission. A 2019 study found that health tech wearables may improve the outpatient monitoring of cancer patients. The device could detect a decline in a patient’s condition and send the data to a doctor, catching the issue much earlier than the typical trip to the emergency department.

This early catch supports patient comfort and reduces costly readmissions for the patient and the health system. Data collection could also improve telehealth visits by recording vital signs and other assessment data before or during appointments.

Wearables may also improve care for patients with severe cardiovascular diseases and reduce their healthcare costs.

In 2021, a team of researchers assessed the relevance of medical wearables for the healthcare industry. When healthcare teams paired smart devices with relational coaching and support, 71% of patients achieved their blood pressure goal compared to only 30% who reached it without wearables and coaching.

Scientists say wearable health devices that gather cardiac data like heart rate, blood pressure, and electrical activity can help monitor the condition of severe cardiac patients. Implanted devices may eventually monitor heart failure patients, predicting negative trends and reducing hospitalizations.

Smart wearables also improve the early detection of infections like Covid-19. A study of the Oura wearable ring found that it detected a Covid-19 infection 2.75 days earlier than when most people seek testing.

Risks of wearables for EOL patients

Palliative care and hospice patients are uniquely different from healthy people and those with curable illnesses. As a result, we need more research on wearables in the end-of-life setting.

Palliative experts say constant monitoring may create problems for EOL patients, like causing false hopes, obsessions with health monitoring, or depression over lack of improvement.

Wearables could also distract from essential end-of-life goals such as enjoying time with loved ones or pursuing lifetime dreams during their final days or years.

Furthermore, smart devices are still developing. Their relevance and accuracy are improving, but many challenges still exist for using them in healthcare, like paying for the devices and integrating the data into the healthcare system.

The most concerning problem with digital health technologies, in general, may be the lack of research about security issues, data rights, and ethics of their use, as a 2021 review reported. It’s still a wild frontier tempting developers with power and dollar signs.

Nevertheless, smart wearable devices will likely become the norm in most patient situations. Studies show wearables are most effective in a close relationship with the patient’s healthcare team. This is especially true of people with terminal illnesses as they face unique symptoms and emotional suffering along their disease journey.

Caregivers can benefit from wearables

Caring for terminally ill patients is stressful, putting caregivers at risk of ignoring their own health to focus on their sick loved ones. Caring for caregivers is a major factor in patient care.

Wearables excel at health monitoring and motivational cues. Smart devices for caregivers could be the most effective use of wearables as they care for end-of-life patients.

Things to consider for EOL patients

If you or a loved one is facing a terminal illness and considering a wearable device, keep these thoughts in mind.

First, the device should help you become more in tune with your body — not less — to the point where you start to sense issues without the device.

Second, before buying a wearable health device, check with your physician about the type of monitoring most helpful in your unique situation.

Third, check your emotional response to the data, alerts, and motivational cues the device gives you. If it increases your stress levels, consider changing your use of the device or stopping altogether.

Most importantly, be sure it supports your quality-of-life goals as your disease progresses. As with all technology, it should improve your life rather than worsen it.

Most people are aware of wearable devices for monitoring health and fitness goals and workouts. However, with today’s technology, wearable medical devices can be used for patients nearing the end of life to help monitor vital signs and alert caregivers to a problem. These kinds of devices are meant to complement medical attention. They should not be a substitute for the personal, caring medical support that people with terminal illnesses need most.

Complete Article HERE!

Pressure Mounts for Hospice Reform

— As part of a growing national dialogue around hospice abuse, trade groups and government watchdog agencies are pushing regulators to make changes.

By Ava Kofman

Last week, the four largest hospice trade associations jointly sent a detailed memo of policy proposals to the Centers for Medicare and Medicaid Services, which regulates the end-of-life care benefit. Their 34 recommendations, which span eight pages, directly address the alarming business practices outlined by a recent ProPublica-New Yorker investigation.

“The New Yorker-ProPublica investigation shook the industry to its foundation,” said Dr. Diane Meier, a geriatrician at New York’s Mount Sinai hospital and a leading authority on palliative care. “You have four major industry groups coming together, as they don’t always do, on a series of significant policy and regulatory changes for hospice. This suggests — contrary to public messages about this being just a few bad actors — that it’s not just a few bad actors. There are systemic problems with the lack of oversight and the profit motive.”

Industry leaders are not the only bloc pressuring CMS for greater hospice oversight. Senators and government watchdog agencies are also pushing the agency for concrete changes. Last week, the Government Accountability Office released a report asking that hospices be required to report observations of abuse and neglect, regardless of whether the alleged perpetrator works at the hospice. MedPAC, the congressional advisory panel on Medicare spending, has again endorsed modifying the hospice payment structure to reduce part of the financial incentive for enrolling ineligible patients. And in late December, the inspector general’s office at the Department of Health and Human Services announced that curbing the abuse of hospice patients was among its top unimplemented recommendations.

Drawing on state licensing records and federal data, our story highlighted how networks of entrepreneurs are propping up an alarming number of for-profit hospices in Nevada, Texas, Arizona and California. As part of their recommendations, the trade groups flag several specific ways that CMS could use its power to curb the “inappropriate” proliferation of hospice licenses, such as increasing the number of inspections for new providers, limiting Medicare hospice certifications in high-growth areas and cutting off funding to high-risk operators. ProPublica found that some of these new hospices improbably share staff, owners and addresses. These suspicious business practices, the trade organizations note, could be treated as red flags that would trigger prepayment scrutiny or billing audits.

“Providers don’t like surveys” — inspections — “and are usually not the ones to ask for more of them,” said Dr. Joan Teno, an expert on the industry and adjunct professor at the Brown University School of Public Health. “You’ll hear various entities paying lip service to reform, but what they’re saying here is that they want to fix the problem and offering specific recommendations for how to do so. It’s unusual and impressive.”

Among its proposals, the memo discusses the need to rein in predatory marketing schemes. ProPublica’s reporting found that profit-seeking providers can take advantage of the fact that many people don’t know what hospice is to recruit new patients who are not dying. Some hospice marketers — known in the industry as “community liaisons” or “community educators” — aggressively solicit new patients with promises of free housekeeping and trips to the beach and casino. Others treat physicians to cash bounties and bottle service at Las Vegas nightclubs to gin up referrals. The groups ask that CMS update its regulations to require hospices to develop policies on “ethical marketing practices.” (Such policies, they note, must prohibit kickbacks, disclose bonuses to marketers and mandate that hospices clearly explain the benefit to patients.)

ProPublica’s investigation pointed out that practically anyone can open a hospice. I came across hospices owned by vacation-rental superhosts, a man convicted of drug distribution and a criminal-defense attorney (who once represented a hospice employee convicted of fraud and was later investigated for hospice fraud himself). The trade associations have asked CMS to prohibit individuals with convictions for certain crimes from operating hospices and to require training and background checks for hospice administrators, noting that “unqualified or risky hospice leadership” could lead to fraud or poor quality of care.

It’s hard to require that hospice owners have appropriate qualifications, however, if the identity of those owners remains unknown. As private equity firms acquire an ever-greater share of the hospice market, many families have no way of untangling who actually operates their provider. This lack of transparency, the trade groups write, “makes accountability for poor performance difficult and makes it harder for patients and families to choose quality providers.” At the moment, it’s easier to research a hotel for your honeymoon than it is to research the hospice that will care for your loved one. But it doesn’t have to be this way: CMS could make hospices disclose their owners and major investors, the groups say. It could also revamp its Care Compare website — a sort of TripAdvisor for end-of-life care consumers — to prioritize quality metrics and make its data more accessible. In response to questions from a groundswell of readers in the wake of its reporting, ProPublica published a guide to help families research their provider and spot common signs of fraud. The trade groups propose that similar information be incorporated into the official Medicare handbook for hospice consumers.

Throughout the memo, the trade groups emphasize that CMS already has the authority to implement many of their suggested reforms. The next step, they say, is making sure the agency has the funding to actually carry out its essential oversight role. “Part of our plan is to offer support in advocating for the agency to have the resources it needs, and that’s part of our goal in sharing this with Congress,” said Mollie Gurian, a vice president at LeadingAge, an association of nonprofit eldercare providers, which co-authored the memo. Gurian and her peers in the field are in the process of scheduling a meeting with CMS, which did not respond to ProPublica’s request for comment. “We didn’t all come into these discussions with the same list, but we are all committed for hospice to be the special benefit that it is and we all agree that it is under threat,” Gurian said.

Complete Article HERE!