The Doctors Said No to a DNR

From Pro Publica:

Does preserving organs for transplant make doctors reluctant to permit a do not resuscitate order?

There can be few greater points of contention between physicians and families, few so infused with emotion and anguish on both sides, than whether to resuscitate someone on the verge of death. Hospitals have been sued and nursing homes fined for resuscitating patients who had a DNR order on file. Or families may urge a medical team to initiate resuscitation that a physician believes is futile, or even torture, for a patient with a terminal diagnosis. The decision is inherently subjective, and ultimately, doctors are supposed to respect the wishes of patients — or, if they can’t speak for themselves, their health care proxy.

My Beautiful Death; An Artist Discovers That Her Materials Have Poisoned Her

Toronto-based sculptor Gillian Gensler writes about discovering that the shells she uses in her work have been toxic, including the statue she calls Adam:

I completed Adam in 2015. If I had left him unfinished, this all would have been for nothing. I often think of Beethoven, who suffered from lead poisoning; he lost his hearing and producing his work became an angry struggle. In the end, he had to create his music from the memory of sound. I was creating my art from the memory of joy. When I look at Adam, I feel grief—both for myself and our planet. But I also feel satisfaction because he is magnificent. That’s how I find my hope. I call him my beautiful death.

My Beautiful Death

Colbert and Cooper on Grief

“You wrote me a letter after my mom died,” he reminded Colbert. “In it you said, ‘I hope you find peace in your grief.’ One of the things I’ve been thinking a lot about is how we don’t really talk about grief and loss. People are not comfortable talking about it. . . . And you’ve spoken very publicly about what you experienced as a kid — a lot of it I didn’t know. I think a lot of people don’t know. So if you don’t mind, I wanted to talk to you a little about it and sort of how it has shaped who you are now.


...

Colbert: You become a different person. . . . You kind of re-form yourself in this quiet, grieving world. . . . It became a very quiet house and very dark. And ordinary concerns of childhood suddenly kind of disappeared. . . . I had certainly a different point of view than the children around me.”

Stephen Colbert answering Anderson Cooper’s question about grief

End of Life University: Making Hard Times Less Hard for Others

Podcast: How to Make Difficult Times Better as a Death-Aware Person

5 tasks to make difficult times better:
Be willing to show up when things fall apart
Be a safe container
Be a deep listener
Be a truth-teller
Be a way-shower

What does it mean to create new life when one parent is dying?

Caitlin Gibson writes about the poignant choice to create new life when one parent has a terminal diagnosis:

Ben Boyer can still picture the expression on his wife’s face that night six years ago, as they talked over dinner at their favorite Italian restaurant in London. It had been four years since Xenia Trejo had been diagnosed, at the age of 33, with a malignant brain tumor that doctors said would eventually end her life. But as she sat across the table from Ben that evening, Xenia radiated joy. She felt strong, and after numerous rounds of treatment, her doctors had just told them that Xenia’s tumor was stable enough to do something she had long dreamed of: pursue a pregnancy. Now Xenia was asking Ben, What do you think? Should we try?

...

These are distinctly modern stories. For couples who confronted grim diagnoses before the turn of the millennium, the option to preserve their fertility was much harder to find and less likely to succeed. But the ability to freeze and test embryos improved dramatically in the early 2000s, bringing with it complex existential questions. What would it mean to have a baby in these circumstances for the parent who would die? For the parent who would live? For their child?

Dean -- A Movie with Demetri Martin and Kevin Kline About Loss

Washington Post: My terminally ill mother wanted to end her own life. What would it take to fulfill her last wish?

Tim Zimmermann writes about his mother's assisted death in Washington DC, the great difficulty they had in filling the prescription, and her determination to die on her own terms:

On a Sunday evening in July 2018, my 81-year-old mother raised a small red glass to her lips. In it was a mixture of water, grape juice and 10,000 milligrams of Seconal powder, a massively fatal dose of a barbiturate most commonly used for insomnia. She was sitting up in a hospital bed in her Washington, D.C., home, bathed in warm early evening light and wearing a thin white nightgown. She had spent the weekend calling close friends and loved ones to say goodbye, and chatting and passing time with me, my sister and all her grandchildren....According to the D.C. Department of Health, my mother was one of two D.C. residents to kill herself last year using the 2016 Death With Dignity Act. (A third, Mary Klein, the law’s most vocal citizen-advocate, also took her own life but for some reason does not show up in the department’s statistics.) The law, which allows terminally ill patients to end their lives with a fatal dose of drugs prescribed by a doctor, puts Washington at the leading edge of humane end-of-life options: Only nine states plus the District — and just a handful of countries — allow medical aid in dying.... As she approached her 80s she had already decided that, when the time came, whatever illness or decrepitude she might confront, she wanted to be master of her fate....There was no way she was going to let a disease dictate her fate, or try to hang on day after day while it slowly consumed her. “I want to be remembered as ‘Teeny full of life,’ not ‘Teeny the cancer patient,’ ” she told my sister Quinny.

We Don't Move On From Grief -- We Move Forward

From the author of No Happy Endings and host of the Terrible, Thanks for Asking podcast

The (Planned) Death of a Champion

The New York Times reports on the scheduled death of Marieke Vervoort, a para-athlete, eleven years after initially preparing the paperwork.

[A]fter more than a decade of uncertainty and pain and joy, of opening her private life to friends and strangers and reporters, of inspiring others, of vexing them, of wishing for the end of her life and at the same time fearing it, Vervoort had invited her loved ones to her home for the most heart-wrenching of reasons:

In three days, she had an appointment to die....

There was, also, a faint feeling of uncertainty in the air — an unspoken question of whether this really was the end, a nanoscopic hope that it might not be. Almost three years had passed since two journalists from The New York Times — the photographer Lynsey Addario and I — began spending time with Vervoort to chronicle the end of her life, to observe a top athlete taking control of her destiny in an extraordinary fashion. Being around her during that time sometimes felt like one extended, indefinite goodbye.

She had come close to scheduling her euthanasia on multiple occasions, but had always switched course, found a reason to put it off. Something would come up. Conflicts would emerge. There would be another date to look forward to, another reason to live....

“I’m looking forward to it,” she said of her death. “Looking forward finally to rest my mind, finally have no pain.” She paused. “Everything I hate will be over.”

Elizabeth is Missing: Trailer | BBC Trailers

Edna St. Vincent Millay on What She Misses About Her Mother

The courage that my mother had
by Edna St. Vincent Millay

The courage that my mother had
Went with her, and is with her still:
Rock from New England quarried;
Now granite in a granite hill.

The golden brooch my mother wore
She left behind for me to wear;
I have no thing I treasure more:
Yet, it is something I could spare.

Oh, if instead she'd left to me
The thing she took into the grave!-
That courage like a rock, which she
Has no more need of, and I have.

Doctors are torturing dementia patients at the end of their life. And it’s totally unnecessary.

From The Washington Post, a story by Geoffrey Hosta that is the opposite of the doctors' first imperative: first, do no harm.

I recently tortured an 88-year-old woman with advanced dementia. Her mind was gone. She didn’t know her own name. Like other advanced dementia patients, she suffered incontinence, aggression, immobility, unaddressed pain and more. Her quality of life was dismal.

Her family brought her to the hospital because she had a high fever and was more confused than usual. I knew that she was near her end.

I asked her daughter, son-in-law and grandson what I always ask families managing a relative’s final days: “Do you want us to do procedures that may well be painful and will not improve her quality of life? Or do you want us to let her go in peace?”

Dr, Hosta says most families choose the second option.

Torie Bosch: Grief Is Messy and Complicated

From Slate:

I didn’t blame those who were at a loss for what to say or do. It’s hard to know what’s appropriate if you aren’t particularly close to someone who loses a loved one (and even harder when the cause of death is something particularly fraught, like suicide). As a result, people often become paralyzed, and then consequently feel guilty. But that doesn’t need to be the case.

Bosch lists forms of support from best (gifts of service and time -- helping with children or pets, making meals, running errands, sitting with the grieving person), notes (handwritten letter, followed by card, email, even social madia).

People are often afraid to say the wrong thing, so they say nothing. Something is better than nothing. Just say, "I'm so sorry." Then let the grieving person talk or not talk.

Two Brothers Face Morality Together: StoryCorps

From StoryCorps: Two brothers who are best friends face mortality together. "I write down now, all the time, “If I was going to die tomorrow, what am I gonna do today?” And, um…I’d want to spend as much time with you as possible. So that’s the most important thing." They are "a package deal," even on Tinder dates. "We're in this together."

‘Transhumanist’ eternal life? No thanks, I’d rather learn not to fear death.

Arthur C. Brooks writes in The Washington Post:

Herodotus, in the 5th century B.C., recorded an account of a race of people in northern Africa who, according to local lore, never seemed to age. Their secret, he wrote, was a fountain of youth in which they would bathe, emerging with “their flesh all glossy and sleek.” Legend has it that two millennia later, Spanish explorers searched for a similar restorative fountain off the coast of Florida.

We are still searching for the fountain of youth today. Instead of a fountain, however, it is a medical breakthrough, and instead of youth, we seek “transhumanism,” the secret to solving the problem of death by transcending ordinary physical and mental limitations. Many people believe this is possible. Observing a doubling of the average life span over the past century or so through science, people ask why another doubling is not possible. And if it is, whether there might be some “escape velocity” that could definitively end the aging of our cells while we also cure deadly diseases....

The promise to end old age is exciting and mind-boggling, of course. But it raises a question: Why would we want to defeat old age and its lethal result? After all, as writer Susan Ertz wryly observed in her 1943 novel “Anger in the Sky,” “Millions long for immortality who don’t know what to do with themselves on a rainy Sunday afternoon.”\

...

Perhaps while we wait for the promises of transhumanism, we should hedge our bets with a bit of transmortalism, which has the side benefit of costing us no money. Who knows? Maybe the solution to the problem of death comes not by pushing it further away but, ironically, by bringing it much closer.

At 94, she was ready to die by fasting. Her daughter filmed it.

After a spinal injury, 94-year-old Rosemary Bowen "announced to her family and friends that she had decided to terminate her life by fasting. After saying her goodbyes, she stopped eating, and in the early morning of the eighth day of her fast, she died in her sleep.

But first, Rosemary asked her daughter, Mary Beth Bowen, to film her fast. The final week of her life is now documented, day by day, in a 16-minute film, which was shown publicly for the first time Saturday at the End of Life Expo hosted by Iona Senior Services in Tenleytown."



"Rosemary had seen friends in their 90s who had slowly declined, and as far back as 1979 she wrote about her aversion to an old age with loved ones “shuffling in and out of rest homes visiting me.” When a friend ended her life by fasting, Rosemary decided someday she would do the same."


She asked her daughter to film her death by fasting.

The Failure of Long-Term Care: My family faces an impossible choice: caring for our mom, or building our future

Med student Kristina Brown writes in The Washington Post about the heart-breaking dilemma of long-term care:

Many people assume that having a disability guarantees access to a network of resources. Not so. Because my mother has an income of $36,000 from her divorce settlement, is younger than 65 and lacks a 10-year employment history, she is disqualified from receiving Medicaid (despite its expansion), Medicare and Social Security Disability Insurance. Her private insurance company, like many others, does not cover home care for daily needs. The median cost of this service, for help seven days a week, is more than $80,000 per year. Like many families, we could not afford full-time coverage. This posed a life-altering dilemma: One of us had to stay home to care for her.

With my sister away at college, I went first: At age 16, when our 43-year-old mother lost the ability to walk, my life shifted to sleepless nights and baby monitors. Her disease progressed swiftly; soon she could no longer stand, eat or bathe without assistance. For six years, I provided 10 hours of care every day....

We are starting to run out of options: We could sell our home to qualify for state assistance; I could leave medical school to become a full-time caregiver for my mother. But taking these extreme, temporizing measures would only drive us further into a vicious cycle of financial instability.

Modern Loss: Vilomah

October is National Pregnancy and Infant Loss Awareness Month, and today, the 15th, has been designated a day of remembrance for pregnancy loss and infant death which includes, but is not limited to, miscarriage, stillbirth, SIDS or the death of a newborn.

We asked the Modern Loss community what words and phrases they use to illustrate this experience. The responses included "shattered," "homesick," "heartbreaking," and "searching." By far, though, the word with the strongest resonance is "vilomah," Sanskrit for "against a natural order." And, of course, this is the perfect term to describe the shattered dream of an eternal bond.

On this day and all others, we are sending love to all the vilomahs in our lives (and chances are great that you know more of them than you think). In this space, you will always be seen, heard and validated, and your lost loves will be missed by us all.

From Modern Loss

Jack Hamilton Says The Righteous Gemstones is a Comedy About Grief

The most hilarious and unexpectedly moving death scene you will see on television this year opens the season finale of The Righteous Gemstones, which airs Sunday night on HBO. The episode begins with a flashback to the death of beloved wife and mother Aimee-Leigh Gemstone, an unbearably sad moment for those present (her husband and three adult children) that rapidly descends into destructive chaos. The best slapstick has always been rooted in pain and a sense of cosmic injustice, and the scene, in all its uproarious brutality, finds the show’s characters processing death in a way that will feel familiar to anyone who’s lost a loved one: by flipping out and breaking shit.

Underlying the satire of megachurch Christianity is a hilarious but poignant portrait of a family coping with loss.

A Short Autobiographical Film from Matt Zoller Seitz About Loss, Grief, and Bed

Matt writes about it here.

Linda Pasten on Grief

NOTE: Elizabeth Kubler-Ross said that there were five stages of dealing with your own death: denial, anger, bargaining, depression, acceptance. But they are most often used in discussions of mourning, grief, and loss of loved ones, as in this touching poem from Linda Pasten, called The Five Stages of Grief



The night I lost you
someone pointed me towards
the Five Stages of Grief
Go that way, they said,
it's easy, like learning to climb
stairs after the amputation.
And so I climbed.
Denial was first.
I sat down at breakfast
carefully setting the table
for two. I passed you the toast---
you sat there. I passed
you the paper---you hid
behind it.
Anger seemed so familiar.
I burned the toast, snatched
the paper and read the headlines myself.
But they mentioned your departure,
and so I moved on to
Bargaining. What could I exchange
for you? The silence
after storms? My typing fingers?
Before I could decide, Depression
came puffing up, a poor relation
its suitcase tied together
with string. In the suitcase
were bandages for the eyes
and bottles sleep. I slid
all the way down the stairs
feeling nothing.
And all the time Hope
flashed on and off
in detective neon.
Hope was a signpost pointing
straight in the air.
Hope was my uncle's middle name,
he died of it.
After a year I am still climbing, though my feet slip
on your stone face.
The treeline
has long since disappeared;
green is a color
I have forgotten.
But now I see what I am climbing
towards: Acceptance
written in capital letters,
a special headline:
Acceptance
its name is in lights.
I struggle on,
waving and shouting.
Below, my whole life spreads its surf,
all the landscapes I've ever known
or dreamed of. Below
a fish jumps: the pulse
in your neck.
Acceptance. I finally
reach it.
But something is wrong.
Grief is a circular staircse.
I have lost you.

D.C.’s assisted suicide law leaves much to the imagination

[T]he lack of transparency in this report of the first full year of the D.C. assisted suicide program, as well as the lack of participation, call into question both its efficacy and its necessity. Any such program is susceptible to exploitation of vulnerable individuals, erroneous estimates of the end of life and the potential for abuse by those who perceive that an early death is always cost-effective compared to the hefty price tag that often accompanies continuing care. For these reasons and others, the D.C. Council should reconsider its obligations and its assisted suicide program. Palliative care benefits all of those patients dying in the district, not just a paltry but privileged few.

DC's Assisted Death Law has inadequate documentation

Remembering a Mom of Ten Children -- from the StoryCorps Legacy Project

"I knew that one day she wouldn't be there to wave at me. So I took her picture."

The Restaurant of Mistaken Orders: A Tokyo Restaurant Where All the Servers Are People Living with Dementia

"All of our servers are people living with dementia. They may, or may not, get your order right."



The Restaurant of Mistaken Orders

The Evening Thread: A Woman at the End of Life

The Evening Thread - a stop-motion film from iris moore on Vimeo.

Living While Dying: Trailer

"Living While Dying" trailer from Emily von W. Gilbert on Vimeo.

The Unexpected Comfort of Livestreaming Funerals

There were friends who couldn’t travel and family members who lived too far away to make it in time for the service, which, by Jewish tradition, had to happen as soon as possible. But their chapel had a solution: It livestreamed the funeral, and uploaded a recording of the service to its website shortly after, with a hyperlink prominently displayed in the obituary...The videos are not solely for the benefit of remote viewers. Levy and her family found that it proved most useful to those that attended. “One of the things that we were told was: You're not going to remember anything,” she says. “[Everyone is] saying all these wonderful things, they're telling these stories and you can't process it,” the grief and shock is just too much.

In the months since her mother’s January 7 funeral, Levy says she and other family members have watched and rewatched the recording online. “One of the only things that every day reminds you of how great she was in such an awful time is people's memories and you sharing those memories with each other.”

Now Even Funerals are Livestreamed -- and Families are Grateful

Alternate Endings: New HBO Documentary on EOL

Alternate Endings: Six New Ways to Die in America offers a fascinating look at the varied ways Americans are choosing to both find meaning and celebrate life as it comes to an end. With attitudes about death and end-of-life choices rapidly changing, 2018 saw the first time more Americans chose cremation over more expensive, traditional burials, disrupting the $16 billion a year funeral industry. As the baby boomer generation approaches death, more and more are rethinking the way end of life is recognized and are deciding to take control of what will happen when they die.

Trailer

Stories Help Us Make Peace with Our Lives -- And Deaths

How should you live when you know you’re going to die?

It is perhaps the ultimate, eternal question — one we all have to grapple with, but mercifully, don’t have to, until the end is crystallized by our own illness or that of a loved one. Humans may be the only animal capable of grasping mortality, but it’s usually not something on our minds — until it is....

I began to wonder whether the secret to a good death wasn’t looking forward, but peering backward — whether retrospective examination might be more therapeutic than prospective preparation. I thought of how often I’d focused solely on helping patients navigate the future: how many weeks or months of life they might expect, which procedures they should or shouldn’t consider. These discussions, while important, fail to address what research has revealed about the deeper wants and needs of seriously ill patients....

Patients were far more likely to express that it was important to feel that their life was complete, to be at peace with God and to help others in some way.

In other words, to feel that their lives mattered.

A growing body of work suggests that a powerful but underused method of creating this sense of mattering is storytelling — reflecting on the past and creating a narrative of one’s life, what it has meant, who you’ve become and why.

When the future is running out, narrating the past helps to prepare

Family Caregiving is a Political Issue

The women's movement had a slogan: The personal is political. That applies to family caregiving as well.

[T]he cost of hiring a home health aide to take care of a frail parent can add up to $50,000 or more a year. So tens of millions of individual women across the United States wind up providing the care themselves for free, and bearing its cost in the form of stress, lost wages, and lost opportunities to nourish their other needs, and their families’....One might expect that a problem that affects so many people so profoundly would become a major political issue. Recent years have seen other issues, including ones that disproportionately affect women in their personal lives, become highly politically salient—from sexual harassment and pay equity to the push for universal pre-K education and improved access to child care. Yet even though American women today are politically organized and running for office in record numbers, elder care remains widely viewed as a purely personal matter. Even a news junkie, following the 2020 race closely, could have heard nothing about it.

Why is that? And could long-term care go from being a sleeper issue to one that boosts a candidate out of the 2020 pack?

...

That’s not to say that providing universal long-term-care insurance wouldn’t cause sticker shock when it shows up in government budgets. But the fact is that, one way or another, society is already bearing these costs—mostly in the form of care provided by stressed-out, uncompensated women who have the misfortune of having a family member who needs care and can’t afford to pay for it. What we need is a way to distribute that burden more equitably.

“You can divide the world of politicians into two groups,” says Howard Gleckman, a senior fellow at the Tax Policy Center. “It’s not Democrats and Republicans, it’s people who have been caregivers and people who haven’t.”

The (Possibly) Forthcoming Elder-Care Revolution

Help with Designing Your End of Life: A Beginner's Guide to the End

A Beginner's Guide to the End is a new book about how planning the death you want helps you have the life you want for as long as you can.

“There is nothing wrong with you for dying,” palliative care doctor B.J. Miller and Shoshana Berger write in A Beginner’s Guide to the End. “Our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible until you do.”

Theirs is a clear-eyed and big-hearted action plan for approaching the end of life, written to help readers feel more in control of an experience that so often seems anything but controllable. Their book offers everything from step-by-step instructions for how to do your paperwork and navigate the healthcare system to answers to questions you might be afraid to ask your doctor, like whether or not sex is still okay when you’re sick. You’ll be walked through how to break the news to your employer, whether to share old secrets with your family, how to face friends who might not be as empathetic as you’d hoped, and to how to talk to your children about your will. (Don’t worry: if anyone gets snippy, it’ll likely be their spouses, not them.) There are also lessons for survivors, like how to shut down a loved one’s social media accounts, clean out the house, and write a great eulogy.

An honest, surprising, and detailed-oriented guide to the most universal of all experiences, A Beginner’s Guide to the End is the one book that everyone needs.

Playing Along With My Dad’s Alzheimer’s Confusion

It is so tempting to tell the truth to our loved ones who are struggling with memory loss, even if it seems cruel to tell them sad or scary news over and over. Increasingly, health professionals and family members are meeting dementia patients where they are.

Lisa Romeo writes in Playing Along With My Dad’s Alzheimer’s Confusion:

Deep down I suppose I sensed there was no value in explaining to him that this was not a hotel, especially because hotels, after all, were places that had always meant refuge and pleasure; places he’d felt comfortable. Hotels were where he’d always been fit enough to swim and smart enough to play baccarat. They were places of beauty, indulgence, and order. I knew in my heart that it was not my duty to make him understand — as if I could — that this was a hospital, that he was broken and sick, and that the only “activities” here were uncomfortable and undignified. What good would it do, I reasoned, to replace his imagined “lousy hotel” conversation with one that was more realistic?

...

Personally though, to have hope was about finding a moment — many moments as it turned out — when Dad and I could meet each other on mutually comforting, historically familiar ground. Every time he talked about hotels, I remembered all the lovely days we’d spent in suites and lobbies, at poolside or white-tablecloth restaurants, from Vienna to the Virgin Islands. When he talked of booking a flight or hiring a limo, it busted open the shared vault of family history we’d made together wandering the world. If that past world of ours could serve as a salve for him, in the midst of his psychic turmoil and physical pain, I was more than willing to follow.

Death Wellness -- Not an Oxymoron

Dying as one wishes has become a luxury. Even though 70% of people would prefer to die at home surrounded by loved ones, most forfeit their future to a windowless hospital room, attached to tubes and monitors. What was once a homebound stage of life has become a lonely, sterilized experience with a host of unfamiliar faces. America, a country founded on rugged individualism and freedom, can’t accommodate even the simplest of last choices.

“Too many people die clinical deaths,” says Beth McGroarty, vice president of research and forecasting for the Global Wellness Summit.

The Global Wellness Institute, a nonprofit organization dedicated to healthy living, identified an emerging trend gaining traction among multiple U.S. age groups. It’s death wellness, in which healthcare experts, academics, and spiritual leaders welcome us to confront anxiety about eternal rest, as well as learn how to support the individual and family throughout the dying process.

Also called the “death positive movement,” it encompasses events, workshops, and new modes of care. Death doulas (sometimes dubbed death midwives) coach those on their deathbed; death cafes gather the morbidly curious to discuss their fears; and legacy projects force the dying to communicate their will and essence. An entire cottage industry has stepped in to make people more prepared to accept their finality, establishing itself as an alternative to the medical establishment’s gaps in care. A good death, some will say, is now part of a good life.

“I refuse to have a terrible death”: the rise of the death wellness movement

Now My Mother's Voice Lives With Me

From Saad Jones in Gay Mag (the journal edited by Roxane Gay)

[S]everal years after we buried her, I heard my mother laugh. Not in a dream, in the middle of the day. That same richness, that same timbre. I snapped my neck around, looking. Only to realize as the last traces of the sound colored the air, that my mother’s laughter was coming from my own throat. The person who had made me laugh, a coworker, had already walked away, but I stood alone in the hallway for a moment, delighted and heartbroken at once. I felt silly holding my hand to my throat for a moment, but I didn’t know what else to do. I even tried to recreate the laugh, to no avail. I just stood there, humbled, realizing that the laughter is mine to receive but never to own.

How to be sick : a Buddhist-inspired guide for the chronically ill and their caregivers

Toni Bernhard writes about her chronic illness from the perspective of mindfulness. It does not guarantee peacefulness or happiness or even acceptance. But it does help provide perspective that can make it possible for us to be fully present for ourselves and those who love and need us. Boorstein's book book How to be Sick helps teach us how the metaphors of battle may not help us as much as we hope. With an introduction from therapist Sylvia Boorstein, who has inspired many people with her guidance on mindfulness and her imprecation about dealing with life's challenges: "Don't duck."

Toni Bernhard got sick and, to her and her partner’s bewilderment, stayed that way. As they faced the confusion, frustration, and despair of a life with sudden limitations—a life that was vastly different from the one they’d thought they’d have together—Toni had to learn how to be sick. In spite of her many physical and energetic restrictions (and sometimes, because of them), Toni learned how to live a life of equanimity, compassion, and joy. This book reminds us that our own inner freedom is limitless, regardless of our external circumstances. Updated with new insights and practices hard-won from Toni’s own ongoing life experience, this is a must-read for anyone who is—or who might one day be—sick or in pain.

What is a good death? How my mother planned hers is a good road map for me.

The best part of this story, aside from the never-often-enough reminder to communicate our EOL wishes, is the sweet detail of the dementia patient who believed she was the caretaker of another patient.

Most of us avoid thinking about death, which makes a good one harder to come by. Two-thirds of citizens in the United States do not have a living will. Although most Americans say they want to die at home, few make plans to do so, and half will die in hospitals or nursing homes instead — a situation Katy Butler, author of “The Art of Dying Well,” attributes in part to our “culture-wide denial of death.”

Even healthy people need a living will, but many don’t want to think about it.

Specifying what a good death means is especially important for dementia patients, who will lose the ability to express their own wishes as the disease progresses. In the early stages, patients have time to reflect and clarify what they do and do not want to happen at the end of their lives. But these options dry up quickly in later stages.

This means that most families are left with a terrible series of guesses about both medical interventions and everyday care. Are patients still enjoying eating, or do they just open their mouths as a primitive reflex, as one expert put it, unconnected to the ability to know what to do with food? What kinds of extraordinary resuscitation measures would they want medical staff to undertake?

What is a good death? How my mother planned hers is a good road map for me.

Laughter Keeps Us Healthy

This article is a delight -- with some heartwarming ideas about why laughter can keep us healthy and vital.

Carl Reiner, 97, has been a comedic icon for more than 70 years, a perennial favorite of baby boomers who grew up with Sid Caesar and Dick Van Dyke. But even younger generations have come to appreciate his singular wit. He’s been an actor, screenwriter and director, as well as a legendary straight man for his old pal, Mel Brooks. He believes humor has enriched his life and boosted his longevity.

“There is no doubt about it,” he says. “Laughter is my first priority. I watch something every night that makes me laugh. I wake up and tickle myself while I’m still in bed. There is no greater pleasure than pointing at something, smiling and laughing about it. I don’t think there is anything more important than being able to laugh. When you can laugh, life is worth living. It keeps me going. It keeps me young.”

...

That old cliche about laughter being the best medicine, as with many cliches, is probably grounded in truth. The psychological effects of laughter are obvious, but it may bring physiological benefits as well. Moreover, it’s free and has no bad side effects.

Laughter stimulates the body’s organs by increasing oxygen intake to the heart, lungs and muscles, and stimulates the brain to release more endorphins, according to the Mayo Clinic. It also helps people handle stress by easing tension, relaxing the muscles and lowering blood pressure. It relieves pain, and improves mood. Laughter also strengthens the immune system.

It's no joke -- laughter really is the best medicine.

The Advanced Directive Was Of More Use as a Firestarter than An EOL Plan

After my husband was diagnosed with end-stage renal failure, we talked about how he didn’t want to be a burden to his family, how much he hated hospitals and getting poked and prodded by doctors. We talked about how his 81 years had been full of love and laughter, being a great dad and loving his work. He noted how even his much-beloved Cubbies had finally delivered him a World Series title, and he joked that he could “now die a happy man.”

Death, we agreed, was a natural consequence of life and not something to be feared. And so we prepared the legal documents that were intended to give him control over the end of his life.

A fat lot of good it did us. On Jan. 4, my husband died, and I threw his advance medical directive into the fireplace. It worked better as a fire starter than it did as it was originally intended.

...I am bereft. I am grieving. And I am working hard to understand why medical teams feel they must chase life so relentlessly.

Efforts To Prolong My Husband's Life Cost Him An Easy Death

The Long Goodbye-The Kara Tippetts Story Official Trailer (2019)

Bill Torpy on the Death of His Son

“There’s no satisfying end to this, for anyone,” he said, looking at me, in a sleep-deprived, drug-induced, brain-swollen daze. “There’s no good end.”He continued: “Thank you, you’re a good author and thanks for the experience. There were some good characters in this.”Then he added: “Give me a hug. You don’t deserve this.”

Bill Torpy writes about his 20-year-old son's death from cancer.

"Disenfranchised Grief" -- Losing a Friend Can Be as Devastating as Losing a Family Member

The so-called hierarchy of grief, a scale used to determine who is considered a more legitimate mourner than others, puts family members at the top. For this reason, the death of a close friend can feel shunted to the periphery and has been described as a disenfranchised grief...Friends are psychological kin, that is, you may even have a stronger bond with friends than people you are related to by birth or marriage. So when a friend dies, the psychological and emotional stress can be as bad as the death of kin.

The death of a friend can be as traumatic as losing a family member

"Pediatric Palliative Transport" Letting Dying Children Go Home

"[P]ediatric palliative transport” [is a] a rare but growing practice that aims to give families choice, control and comfort at the end of life.

Palliative transport lets families move critically ill children from the hospital intensive care unit to their home or hospice, with the expectation they will die within minutes to days after removing life support.


A collection of photos of Anthony Gabriel Brescia-Connell, who was 16 when he was transported from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals. (Photo by Kayana Szymczak for Kaiser Health News/Photo by Kayana Szymczak for Kaiser Health News)
It means “having parents go through the hardest thing they’ll ever know — in the way they want to do it,” Nelson said. Boston Children’s has sent 19 children to home or hospice through palliative transport since 2007, she said.

These final journeys — also offered by the Mayo Clinic, Children’s Hospital of Philadelphia and Kentucky Children’s Hospital — can involve elaborate planning, delicate transfers and even long helicopter rides. In some cases, families took a child far from home for a last-ditch effort to save their lives.

At the Mayo Clinic, palliative transport has helped culturally diverse families carry out end-of-life wishes for their dying children. In one case, a newborn girl rode 400 miles by ambulance to return to her Amish community, where she was extubated and died in her parents’ arms, in the company of her 11 siblings. In another, an 8-month-old Native American girl traveled 600 miles by air and ground ambulance to her rural tribal reservation, where she could participate in end-of-life rituals that could not be done in the hospital.

A final comfort for dying children: ‘Palliative transport’ to send them home

A Doctor's Story of MAiD at the End of Life

From Twitter:

I'd like to share some reflections on the death of a patient. I’ve thought about her a lot.

She gave me explicit consent to tweet the details of her case, about four hours before she died. Her hope was that someone might benefit from her experience.

/1

— David Juurlink (@DavidJuurlink) May 18, 2019

He went on:

She came to hospital as octogenarians often do: with generalized weakness, falls, poor oral intake, fever, hypotension.

Her WBC was 17,000. Blood cultures grew E. coli.

Sepsis. Fixable enough.

But she also complained of pain in her groin and thigh. It was new, progressive and debilitating.

Even moving around in her hospital bed was agonizing.

A month earlier, she’d been found to have a large pseudoaneurysm arising from her external iliac artery.

(And yes, that’s a screw from a previous hip replacement traversing it.)

She underwent stenting and returned home.

Because she was septic and in pain, we scanned her again. The new CT showed extensive gas within the pseudoaneurysm.

It was now infected, and that was a big problem.

We continued antibiotics. She improved. We got her pain under reasonable control with hydromorphone and various other meds.

But then came the big question: “Now what?”

She wanted no more surgery. Her mind was now sharp, and she was clear about that.

But antibiotics alone weren’t going to cure the infection; they would only suppress it.

The best option, we suggested, would be antibiotics for the rest of her life.

We discussed this option at length. She didn’t want it either. She explained why.

Pain was one reason. Meds helped a little, as long as she didn’t move around much. But our drug options were limited, and pain was going to be a persistent problem.

Her even greater concern, looking forward, was quality of life.

Over the preceding months, she’d lost her mobility and independence. She wasn’t going to get them back and she knew it.

She foresaw being confined to her apartment, in pain, struggling with her walker.

No more walks outside. No trips to the grocery store. No playing bridge with her friends, as she had done for years.

She wasn’t interested in living like that.

We discussed palliative care: stopping antibiotics, increasing her pain meds, and keeping her comfortable while the infection took its course. Her family would keep vigil at her bedside for as long as it took.

She wasn’t interested in dying like that.

She knew she was nearing the end of her life. What she wanted, she told us, was for it to end peacefully, with her mind still sharp, and her family and friends present. She wanted medical assistance in dying (MAiD).

We held a family meeting. Relatives came from near and far.

They were unconditionally supportive. As it turned out, she’d discussed the prospect of MAiD, were it ever to become an option, several times in recent years.

So that became the plan.

I saw her every day after that. Managed her pain. Listened to her stories. Learned about family members who’d died, and whose deaths had influenced her decision now.

Never once did she reconsider. I grew very fond of her, especially her wit and clear-eyed stoicism.

After the requisite waiting period and medical assessments, the day had come.

I visited her at 7:30 that morning. She was alone but upbeat, eating Cheerios and toast from her tray.

(I still regret that this was her last meal. Wish I’d brought her a fresh bagel with lox.)

A few hours later, her room was packed with family and friends. It was literally a party.

There was talking and laughing and cognac in Dixie cups. The mood was anything but funereal.

They gathered around her bed. I took a group photo. Everyone was smiling.

I then watched as a colleague reviewed everything one last time, confirmed her wishes, explained what would happen, and answered everyone’s questions.

“Okay, I’m ready,” she said. Her composure was remarkable.

“Goodbye everyone. Thank you for everything. I love you all.”

She received midazolam and dozed off peacefully, her children holding her hands and stroking her head.

Next came propofol, an anaesthetic.
Then rocuronium, a muscle relaxant.
Finally, potassium chloride, to stop her heart.

Five minutes after saying goodbye, she was dead.

There were tears, of course. All around. But mostly the atmosphere in the room was one of serenity and gratitude, and a genuine sense of having done the right thing.

I’m no MAiD expert, and I get that some people are opposed to it for various reasons. But I’ve been a doctor for 25 years, and I’ve seen enough deaths to know a good one from a bad one.

This was, without exaggeration, the best death I have ever witnessed.


We all die eventually. This patient helped me realize that when my time comes, I'll be fortunate if MAiD is an option.

And I will always be thankful to her, her family, and a very skilled colleague for helping me appreciate just how good a “good death” can be.

Calling the Birds Home: Portraits of a Mother With Dementia

The New Yorker has an article about photographer Cheryle St. Onge, who has created a series of photographs of her mother as she struggles with dementia. They are heartbreaking but beautiful and in every way a true collaboration.

"We Stopped Seeing Her"

We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had.

We stopped seeing her, not intentionally perhaps, but we stopped.

This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”

I Know You Love Me -- Now Let Me Die

Death Wellness is Not an Oxymoron

"Too many people die clinical deaths,” says Beth McGroarty, vice president of research and forecasting for the Global Wellness Summit.

The Global Wellness Institute, a nonprofit organization dedicated to healthy living, identified an emerging trend gaining traction among multiple U.S. age groups. It’s death wellness, in which healthcare experts, academics, and spiritual leaders welcome us to confront anxiety about eternal rest, as well as learn how to support the individual and family throughout the dying process.

Also called the “death positive movement,” it encompasses events, workshops, and new modes of care. Death doulas (sometimes dubbed death midwives) coach those on their deathbed; death cafes gather the morbidly curious to discuss their fears; and legacy projects force the dying to communicate their will and essence. An entire cottage industry has stepped in to make people more prepared to accept their finality, establishing itself as an alternative to the medical establishment’s gaps in care. A good death, some will say, is now part of a good life.

“I refuse to have a terrible death:” the rise of the death wellness movement

How to Make Doctors Think About Death

Health care providers must learn that end of life care is still care.

Modern health care accomplishes great feats of healing every day. But life ends; there are patients for whom real healing has become impossible. Their bodies have simply taken too many hits. Aggressive care can push back their death for a few days, but it is unlikely to keep them from dying soon.

These situations tend to be obvious to clinical staff, and especially nurses. We administer the hands-on care. But for those around us — physicians, families and the hospital generally — they are not at all clear, and too easily clouded by emotion. That’s why we need end-of-life treatment guidelines.

How to Make Doctors Think About Death

Missing a Sister Who is Still Somehow Here on Social Media

After all, if I could still see her, hear her and text her, was she really gone? If Facebook reminded me annually of her birthday and calculated the passing years into her current age, then her death wasn’t a period or an end but more of an ellipsis, and I could still imagine the “…” of a chat bubble popping up at any moment.

When someone you love disappears, there’s no finality of an autopsy report or the closure of a funeral. All you have is a lack of presence. You can piece together the mystery like in the Nancy Drew books you used to devour, but there’s no memorial service to confirm the truth. And that’s the problem: The promise of possibility, however faint, is harsher than any certainty.

It has now been five years since her disappearance, and I still fantasize about an alternate outcome. That senseless hope is hard to smother, the off-chance that someday I may see her face in a crowd, as familiar as my own reflection. I’ll run toward her and save her this time.....Facebook cannot mimic my sister’s flowery handwriting, remind me how she smelled when wearing her favorite perfume or hug me the way she used to. But it can preserve the post she left on my wall six years ago that reads, “I love you.”

Sometimes, that’s enough.

Years Ago My Sister Vanished. I See Her Whenever I Want

A Place to Leave A Memory: David Best "Temple" at the Renwick Gallery

New on Netflix: Grief Comedy/Drama "Dead to Me"

Companions at the End of Life for Those Who Are Alone

He couldn't speak and didn't move. His body had entered the stage his nurses called "actively dying." They assumed he would die that afternoon.

That was why Jane had come.

"I just kind of watch them on their journey," she said gently.

Officially, she was an 11th Hour Companion, a volunteer sent by Phoenix's Hospice of the Valley to sit with patients who would otherwise be alone. But Jane's role was more complex than that. She was an advocate, a guardian, a chaperone into the next life. Another volunteer once described himself as "a patient's last new friend," and Jane nodded her agreement. She soothed family members' fears and stayed when they had to step away. Sometimes, she had to tell nurses that her patient had died.

Companionship and solace for those dying alone

Humans as Compost, Nourishing the Earth

From dust to dust...Washington passes bill to become first state to compost human bodies

It may soon be legal for the dead to push daisies, or any other flower, in backyard gardens across Washington state. The state legislature recently passed a bill that, if signed by the governor, allows human bodies to be composted — and used for mulch.

As the nation ages, U.S. funeral practices are changing. Rates of cremation surpassed 50 percent in 2016, overtaking burials as the most popular choice. The Census Bureau, in a 2017 report, predicted a death boom: 1 million more Americans are projected to die in 2037 than they did in 2015. Human composting, its supporters say, is an eco-friendly option that can meet this growing demand. A Seattle-based company called Recompose plans to offer a service called “natural organic reduction” (it has two patents pending) that uses microbes to transform the departed — skin, bones and all.

“We have this one universal human experience, of death, and technology has not changed what we do in any meaningful way,” said state Sen. Jamie Pedersen (D), who introduced the bill, which passed with bipartisan support on April 19. “There are significant environmental problems” with burying and burning bodies, he said.

Joshua Trey Barnett, an expert on ecological communication at the University of Minnesota at Duluth, listed the flaws in conventional burials: “We embalm bodies with toxic solutions, bury them in expensive caskets made of precious woods and metals and then indefinitely commit them to a plot of land.” Though incineration has a smaller ecological footprint, estimates suggest the average cremated body emits roughly 40 pounds of carbon and requires nearly 30 gallons of fuel to burn.

Living in the Love of the Ones We Lose

“I have learned not to live without her but to live in the love she left behind.” - Anonymous

Podcast on Grief and Loss: Terrible, Thanks for Asking

Welcome to “Terrible, Thanks for Asking,” the podcast about “the complicated nature of difficult experiences,” as McInerny says.

Each week, the podcast digs deep. It allows listeners to think about the pain we live through, how we face it, tackle it, collapse under its weight. It gives permission to grieve, to go on living, to be happy and sad simultaneously. It’s about everything that life can throw at us and the myriad ways in which we must reimagine our lives. As McInerny writes in her newest book, “No Happy Endings: A Memoir,” “death is not the only time we start over.”

And McInerny is an expert in the subject.

“Terrible, Thanks for Asking” and all that has come after was born out of McInerny’s own grief. She launched it in 2016, as a 33-year-old single mom, just two years after losing her first husband, Aaron Purmort, to brain cancer. Weeks before Aaron died, she also suffered a miscarriage and watched her father die.

Aaron’s obituary, which they wrote together, went viral, and people began contacting McInerny. “So many people . . . were reaching out to me, a complete stranger, in the middle of the night to talk about the worst thing that ever happened to them, and it wasn’t because they were all friendless or familyless,” she remembers. “It was just because the people around them were afraid to talk to them or didn’t want to remind them of their tragedy.”

Episodes include guests such as a young man with cerebral palsy; a woman who almost died in a fire that killed her boyfriend; an emergency-room doctor who watched her husband die in the hospital where she works.

Each story is filled with almost-unspeakable pain. And yet, the podcast has been listened to more than 14 million times.

"Families want to put the 'fun' in funerals" -- Washington Post

Death is a given, but not the time-honored rituals. An increasingly secular, nomadic and casual America is shredding the rules about how to commemorate death, and it’s not just among the wealthy and famous. Somber, embalmed-body funerals, with their $9,000 industry average price tag, are, for many families, a relic. Instead, end-of-life ceremonies are being personalized: golf-course cocktail send-offs, backyard potluck memorials, more Sinatra and Clapton, less “Ave Maria,” more Hawaiian shirts, fewer dark suits. Families want to put the “fun” in funerals.

The movement will only accelerate as the nation approaches a historic spike in deaths. Baby boomers, despite strenuous efforts to stall the aging process, are not getting any younger. In 2030, people over 65 will outnumber children, and by 2037, 3.6 million people are projected to die in the United States, according to the Census Bureau, 1 million more than in 2015, which is projected to outpace the growth of the overall population.

Just as nuptials have been transformed — who held destination weddings in the ’90s? — and gender-reveal celebrations have become theatrical productions, the death industry has experienced seismic changes over the past couple of decades. Practices began to shift during the AIDS epidemic of the 1980s, when many funeral homes were unable to meet the needs of so many young men dying, and friends often hosted events that resembled parties.

Now, many families are replacing funerals (where the body is present) with memorial services (where the body is not). Religious burial requirements are less a consideration in a country where only 36 percent of Americans say they regularly attend religious services, nearly a third never or rarely attend, and almost a quarter identify as agnostic or atheist, according to the Pew Research Center.

The funeral as we know it is becoming a relic

Having an Advanced Directive Does Not Guarantee a Peaceful Death

For the past seven months, I’ve carried around my husband’s advance medical directive in my purse. During this time, I’ve shown this lawyer-prepared and notarized document to dozens of doctors, nurses, ambulance crews, surgeons, dialysis center teams, hospital emergency room workers and administrators, intake staff, nurse practitioners, nursing home staff, medical transportation drivers, and others. I’m an expert in summarizing its contents, and my 11-second elevator pitch goes like this: Do not resuscitate. No heroic measures. A gentle and peaceful death, pain-free and with dignity. Please....

Death, we agreed, was a natural consequence of life and not something to be feared. And so we prepared the legal documents that were intended to give him control over the end of his life.

A fat lot of good it did us. On Jan. 4, my husband died, and I threw his advance medical directive into the fireplace. It worked better as a fire starter than it did as it was originally intended.

We simply had no clue that dying and medicine, as it is commonly practiced, exist at cross purposes. And in my husband’s case, the engine of life-prolonging medicine decisively won....Medical good intentions notwithstanding, prolonging death is not the same as extending life. Death isn’t the boogeyman; turning the dying process into a torturous experience is. And yet the medical establishment just can’t seem to help itself when it comes to dying.

Efforts To Prolong My Husband's Life Cost Him An Easy Death

New Jersey Proposal on Assisted Death

New Jersey is poised to allow terminally ill patients to end their lives.

On Monday, in a 21-16 vote, the New Jersey Senate approved the “Medical Aid in Dying of the Terminally Ill Act,” which New Jersey Gov. Phil Murphy had promised to sign into law.

“Allowing terminally ill and dying residents the dignity to make end-of-life decisions according to their own consciences is the right thing to do,” Murphy said.


The bill would require:

A second opinion on the diagnosis to attest that the patient has less than six months to live.
An approval from a psychologist or psychiatrist that the patient has the mental capacity to make the decision.
Qualified terminally ill patients would be required to obtain medication that can be self-administered.
What are people saying?
The legislation was sponsored by Democratic state Sens. Nicholas Scutari, Richard Codey, and Steve Sweeney.
"This is a humane and dignified process that respects the free will of terminally ill patients," Scutari said. "We should permit qualified patients to make the decision to end their own lives in a dignified manner. There is no good reason for them to be forced to prolong their pain and suffering or to prolong the grief of their loved ones if they make that choice."
But Stephen Goldfine, chief medical officer at Samaritan Healthcare and Hospice, believes lawmakers should hone in on providing better palliative care in the Garden State, instead of clearing the path for medically-assisted suicide.
“If we provide really high-level palliative care, which includes good symptom management, good social support, both from a physical perspective and emotional counseling, I do think that we can provide that level of comfort for all patients,” Goldfine said. “For a very high majority of patients, they don’t need to be asking to do medical-assisted aid in dying.”

New Jersey proposal on assisted death

Tahitian Mourner's Attire

From the British Museum, worn by the chief mourner at ceremonies honoring Tahitians who were especially important in the community.

Grief is a Ball in a Box

Lauren Herschel describes grief:

So grief is like this:

There’s a box with a ball in it. And a pain button.
In the beginning, the ball is huge. You can’t move the box without the ball hitting the pain button. It rattles around on its own in there and hits the button over and over. You can’t control it - it just keeps hurting. Sometimes it seems unrelenting.

Over time, the ball gets smaller. It hits the button less and less but when it does, it hurts just as much. It’s better because you can function day to day more easily. But the downside is that the ball randomly hits that button when you least expect it.

For most people, the ball never really goes away. It might hit less and less and you have more time to recover between hits, unlike when the ball was still giant

The Art of Dying Well

The Art of Dying Well by Katy Butler is about making honest choices that provide the kind of support for each person and each situation. It is about

living as well as possible for as long as possible and adapting successfully to change. Packed with extraordinarily helpful insights and inspiring true stories, award-winning journalist and prominent end-of-life speaker Katy Butler shows how to thrive in later life (even when coping with a chronic medical condition), how to get the best from our health system, and how to make your own “good death” more likely. This handbook of step by step preparations—practical, communal, physical, and sometimes spiritual—will help you make the most of your remaining time, be it decades, years, or months.

Butler explains how to successfully age in place, why to pick a younger doctor and how to have an honest conversation with her, when not to call 911, and how to make your death a sacred rite of passage rather than a medical event.

Michael Dirda writes in the Washington Post:

this “practical guide to a good end of life” delivers on its subtitle, offering detailed advice on dealing with — in poet Philip Larkin’s phrase — “age, and then the only end of age.” Butler’s factual, no-
nonsense tone is surprisingly comforting, as are her stories of how ordinary folks confronted difficult medical decisions. In short, if you’re coming up on three score and 10 or have already passed that biblical term limit for earthly existence, you will want to read “The Art of Dying Well” and keep it handy, if only for its lists of what to do as one’s physical condition changes.

Overall, Butler’s advice can be summed up in the Boy Scouts’ motto: Be prepared. If you’re merely approaching the end zone, do all you can to preserve your well-being. Exercise. Keep your weight down. Eat lots of vegetables. Control your blood pressure, cholesterol and sugar, ideally without medications or with the smallest dosages possible. Stay mobile, but watch out for falls. Be sure, too, that your financial and medical records are organized, comprehensible and digitally accessible to the appropriate people in case you are incapacitated....Throughout “The Art of Dying Well,” Butler stresses the vital importance of having what she calls a “tribe.” A tribe can be one’s extended family but might also include the neighbors you socialize with, or your bridge club and fishing buddies, or members of your church — in short, the people you care about and who care about you. What matters is that a tribe’s members are mutually sustaining: They help each other out. Loners don’t do well in old age.

Dear Prudence: When Mom Won't Admit Dad is Dying

Dear Prudence,
My dad is very sick with lung cancer, has a compromised immune system because of chemo, and has terrible gout in his hand. He was recently diagnosed with chronic obstructive pulmonary disease and is often exhausted. My mom has her own medical issues and, by awful coincidence, is having a terrible episode of knee pain that has reduced her mobility. My main worry is that my mom often says things like “Dad will be all right; he’s going to get through this.” My dad has occasionally talked about death and has started preparing me to take over his personal business (paying the bills, taking care of their estate and property, helping my mom out, etc.) if things take a turn. He also will comment to our mom a bit about death, to which my mom has replied, “I don’t want to hear that,” or “He’s going to be fine. I don’t want to hear him talk like that.” Both my dad and I are worried about what seems obvious: He’s very sick with cancer, may die from it, and is preparing himself mentally and emotionally for that possibility. Is it wrong of me to gently encourage my mom to develop a different coping mechanism to help my dad talk or think it through? Should I simply respect that she will have her own process, which may include a long period of denial (maybe never accepting death until it actually happens)?
—Mom in Denial

There’s a limit to how much you can force this conversation on your mother, which I think you realize. She’s dealing with chronic pain and immobility and a very ill partner, so she may feel like she doesn’t have the resources to think about your father’s death right now. It’s good that you and your father are setting aside the time to prepare for the worst, and to whatever extent you’re able to facilitate a smooth transfer of financial and logistical responsibilities without involving your mother directly, you should continue to act on her behalf. It might help, if she seems deeply distressed, to ask if there’s anything else she needs right now to help her manage her pain or get help taking care of the house. It may also help to offer her the chance to be part of this conversation without trying to force her into anything; say, if you and your dad set aside an afternoon to meet with a lawyer and estate planner to go over his will and end-of-life wishes, you can tell your mother about it in advance, ask her to join you if she’s able, but ultimately leave it up to her. You can stress that you’re not giving up: “We all hope that Dad is able to recover, but we want to be prepared for everything, including the worst.” But if she can’t or won’t participate, you shouldn’t push her.

Dear Prudence


An update from the letter writer:

Re: Mom in denial: Thank you so much for sharing this information. The rest of my family were all in the camp that it was ESSENTIAL to be absolutely positive and upbeat about my dad’s possibility of recovery. The doctors and I seemed to be the only ones who understood that Dad’s situation might worsen. He actually did pass on March 5, and I have spent some time worrying that I was unable to provide enough positivity and/or assistance to help him get well (because of my sisters’ inability to accept the possibility of death/wanting second opinions/wanting to change his care drastically, and all that comes when someone is in denial, in my opinion).

I appreciate the comment so much from this health care professional, as it tells me that I understood things and am not a terrible person for it. My mom actually did change and accepted my dad’s condition better after a heart-to-heart with a palliative care doctor in his final days. You do make a big difference, thank you. I miss him terribly but at least I can be assured that it was his time to go.

Three Magic Phrases to Say to a Dying Person

I fought back tears. Delivering this message was the hardest thing I’ve ever had to do. But I had to stay calm and say more. I had to find impossible words — words that would bridge the gap between life and death and make his predicament palatable. 3 Magic Phrases To Say To A Dying Person spilled out. It has became a mantra. Here is what I said to my distressed and dying child, as lovingly and reassuringly, as possible:

“You will not be alone. You will not feel pain. We will be okay.”

What Jenny Harrington said to her dying child

Francis Weller on Grief

In his book [Francis] Weller invites us to view grief as a visitor to be welcomed, not shunned. He reminds us that, in addition to feeling pain over the loss of loved ones, we harbor sorrows stemming from the state of the world, the cultural maladies we inherit, and the misunderstood parts of ourselves. He says grief comes in many forms, and when it is not expressed, it tends to harden the once-vibrant parts of us.

He explains more in an interview:

Expressing grief has always been a challenge. The main difference between our society and societies in the past is how private we are with it today. Through most of human history grief has been communal. The Pueblo people of the Southwest, for example, have “crying songs” to help move grief along. The Mohawk traditions have the “condolence ritual,” where they tend to the bereaved with an elegant series of gestures, such as wiping tears from the eyes with the soft skin of a fawn. The healers in those traditions know it is not good to carry grief in the body for a long time.

But now we’re asked — and sometimes forced — to carry grief as a solitary burden. And the psyche knows we are not capable of handling grief in isolation. So it holds back from going into that territory until the conditions are right — which they rarely are. The message is “Get over it. Get back to work.” Again and again in my practice clients come to me with a depression that is more of an oppression: a result of so many years of sorrow that have not been touched with kindness or compassion or community. You’re left with an untenable situation: to try to walk alone with this sack of grief on your back without knowing where to take it.

In traditional cultures people were often given at least a year to digest a major loss. In ancient Scandinavia it was common to spend a prolonged period “living in the ashes.” Not much was expected of you while you did the essential work of transforming sorrow into something of value to the community. The Jewish tradition observes a year of mourning filled with observances and rituals to help the grieving stay connected to their sorrow and not let it drift away. Most people today might get a week of bereavement leave, at best, and then everything should be fine.

In this culture we display a compulsive avoidance of difficult matters and an obsession with distraction. Because we cannot acknowledge our grief, we’re forced to stay on the surface of life. Poet Kahlil Gibran said, “The deeper that sorrow carves into your being, the more joy you can contain.” We experience little genuine joy in part because we avoid the depths. We are an ascension culture. We love rising, and we fear going down. Consequently we find ways to deny the reality of this rich but difficult territory, and we are thinned psychically. We live in what I call a “flat-line culture,” where the band is narrow in terms of what we let ourselves fully feel. We may cry at a wedding or when we watch a movie, but the full-throated expression of emotion is off-limits.

The Wild Edge of Sorrow

Death of a Father, a Doctor

This beautiful essay by James Marcus in the New Yorker tells the story of his father's last days.

Everything I have described so far seems to have happened to somebody else—to somebody else’s father. But the death of a parent happens to you, and, once it starts, it never stops. It dislodges everything. “Is he sick?” my friend Peter asked me a few days after my father drank from the invisible cup. “Or is he dying?” At that moment, it occurred to me with absolute certainty that he was dying, and I said so. I felt the truth of it, and also a terrible sense of disloyalty, as if I were abandoning my father.

I hurried to the hospital the next morning with my mother. My father was in a peculiar state: completely articulate and completely delusional. The blood in his brain was displacing gray matter, and this small compression of physical stuff—a few ounces of wrinkled tissue, hardly more substantial than cotton wadding—had spirited him away to a parallel universe.

An Artist's Exit Interview

An artist agrees to an "exit interview" to discuss her upcoming death from cancer as an artist and an activist.

When I became aware that I really was dying, and it was going to be soon. How could I die in a way that would alleviate pain and allow me to say goodbye to people that I want to, and make sure all my artifacts are in order? With the assistance of a physician, I could be able to take the pills that will put me out of my suffering and pain. People do their best, they are working with me in palliative care, but it can take thirty minutes to an hour to get the interventions that alleviate the suffering. And the suffering is pretty awful. I can’t say I’m not yelling, wanting to jump out the window sometimes. In New York State, it is illegal for somebody to assist me in dying.

The Debate Over Medically-Assisted Suicide In Maryland

The Maryland General Assembly is considering an End-of-Life Option Act for the fourth time in as many years. If passed, the legislation would allow terminally ill individuals, who have been given six months or less to live, the option to legally end their lives with a lethal dose of prescribed medicine.

Supporters of the bill say that individuals should have the right to end their lives with dignity and exercise control over the final stage of their life. A 2015 poll showed that 60 percent of Marylanders support a “death with dignity” option for terminally ill patients.

Opponents of the measure have argued that in addition to the moral and ethical considerations, public safety could be put at risk if the legislation passes. Concerns have been raised that the new law could be used to target people with disabilities, or that a patient could be deemed mentally fit, but actually be unable to make a sound decision on this issue.

Death With Dignity?

Make a Plan for a Good Death

The peculiar problems of modern death — often overly medicalized and unnecessarily prolonged — are no longer abstractions to me. Even though I swim daily and take no medications, somewhere beyond the horizon, my death has saddled his horse and is heading my way. I want a better death than many of those I’ve recently seen.

In this I’m not alone. According to a 2017 Kaiser Foundation study, 7 in 10 Americans hope to die at home. But half die in nursing homes and hospitals, and more than a tenth are cruelly shuttled from one to the other in their final three days. Pain is a major barrier to a peaceful death, and nearly half of dying Americans suffer from uncontrolled pain. Nobody I know hopes to die in the soulless confines of an Intensive Care Unit. But more than a quarter of Medicare members cycle through one in their final month, and a fifth of Americans die in an ICU.

This state of affairs has many causes, among them fear, a culture-wide denial of death, ignorance of medicine’s limits, and a language barrier between medical staff and ordinary people. “They often feel abandoned at their greatest hour of need,” an HMO nurse told me about her many terminally ill patients. “But the oncologists tell us that their patients fire them if they are truthful.”

I don’t want this to be my story.

She tells us to have a vision, understand our health, and make sure we have a tribe and caregivers. Well worth reading and saving.

How to Prepare Yourself for a Good End of Life by Katy Butler

No, We Don't Get Over It and That's The Way it Should Be

Love is forever, which means loss is forever, which means grief is forever. It hurts, but it keeps us close.

We will grieve forever because we love forever. There is no end to our love for our child, therefore there is no end to our grief– not in our lifetime, anyway. We will grieve forever. We will never get over it.

The presumption is that since our child’s death happened years ago– a presumably finite event– how are we not over it by now? As if child loss is something you can get over– likening it to something far less horrific that can be conquered if you only try hard enough, think positively, or pull yourself up by the bootstraps. As if it’s a hurdle you can easily jump over, or a roadblock you can simply go around and then move on. As if sunshine, rainbows and unicorns will magically greet you once enough time has passed and you cross into “I’m-over-it” land. This may work for other things, but not child loss.

It’s time to bust a long-standing myth about child loss and grief. There is no getting over it. Child loss is not something you get over. Ever. You don’t get over watching the living, breathing piece of your heart and soul, your flesh and blood, your child– die. It’s simply not. possible. to get over the death of your child. You will grieve the death of your child until your last breath.

Why We Will Never Get Over It

When Grief Feels Like Anger

“I’m just so angry all the time, and I don’t like it. I hate how angry I am.”

I looked into her eyes and replied, “I’m not sure you’re angry. Have you ever considered that you might be grieving, that you may be in mourning right now?”

“Wow,” she said. “I never thought about it that way. That’s exactly what it feels like.”

Almost immediately she could name everything she was lamenting the loss of.

Grief looks a lot like anger on the outside.

You’re Not Angry Right Now, You’re Grieving

Poem: House Grief

I must've ordered the house grief.
That full-bodied red.
Tastes like rust, is cheap and everywhere.

Ann Alder Walsh

A Poem of Farewell

God saw you were getting weaker, calmer,
so He did what he thought best.
He came and stood beside you
and He whispered "Come to rest."
We could not understand it,
no matter how we tried.
If love alone could have saved you
you never would have died.

When the Soul Leaves the House

Doesn't it seem that the home knows when the person who lived there has died?

Brian Dillon writes about "The Empty Space."

A house changes after somebody has died: There is suddenly too much space. We all know the symptoms of that change. We set an extra place at the table. We leave empty for months, even years, a chair in which the de­ceased used to sit. We imagine that at any moment the lost loved one will appear in the room (the air, the light, the whole room would subtly alter). These phenomena are familiar to the point of cliché. So well-known, in fact, that, even in the shock of our bereavement, we are sur­prised (in my case, embarrassed; shame seems to have covered for every other emotion) to find ourselves suc­cumbing to them, as if we feel our grief must, surely, be more original than that. When nothing is said of the ab­sence at the heart of the house, these lapses multiply; if only we could name the emptiness—we do know, after all, its name, her name—we would surely be better able to navigate around it, to keep moving. But time and again we find ourselves stranded in these ludicrous poses, like a photograph from which one figure has been erased: four dummies with nothing to say to one another.

A Man Cares for his Wife with Dementia -- With the Help of His Girlfriend

Design/cooking/lifetyle expert B. Smith has dementia. The woman once called "the black Martha Stewart" once presided over an empire that included restaurants and magazines, but now she has dementia. Her husband still cares for her lovingly and keeps her fans up to date through social media. But some of them are upset because he has a girlfriend, who helps him in caring for her.

“We were friends,” Alex said. “I didn’t want to go out with a married man.” Plus, she’d socialized with B. at charity events. But when Dan invited her to breakfast at a popular hotel with B., she accepted.

Finally, she saw. “This is not a man cheating on his wife,” she told herself. In the middle of breakfast, Alex helped B. to the bathroom.

Alex had a nurturing spirit. And she saw the same in him. “What I admire about him,” she said, “is that he takes care of her.” ....Despite the online response, those who know Dan and B. defend the relationship. “Anybody that would judge Dan knows nothing about the disease and the toll it takes” on a marriage, Schnayerson said. “If you can find a companion who can help you get through that, all power to you.”

Dana also pointed out that her father has not abandoned B. by any measure. “She’s in this house. She’s here every day,” she said.

And, on many days, so is Alex. “If I can be compassionate to her,” Alex said, her voice breaking, “if I can do anything for her, it makes me feel good. If it is giving her something to drink, or making her something to eat — she loves to eat — I feel good.”

Lifestyle guru B. Smith has Alzheimer’s. Her husband has a girlfriend. Her fans aren’t having it.

Susan MacLeod on What She Learned from Visiting Her Mother in a Nursing Home

This beautiful essay by Susan MacLeod about the way her visits to her mother in a nursing home transformed their relationship is illuminating and deeply moving.

Repelling what we don’t want is misguided. This is one of the first things I learned on my Buddhist path. The starting point of the path is suffering, and sickness, old age, and death require peaceful abiding, rather than hope, fear, or especially ignorance.

Unconsciously, my meditation practice began to express itself in everyday life and became present in this situation as well. Albeit reluctantly, I made my way to see Mom regularly. Like meditation, it took discipline. I was always uneasy, not knowing what to expect, how to act, what to do, what to say. I also carried an underlying anger that I was the sibling stuck doing it.

Despite all this, I knew it was important to remain open for Mom’s sake, as at some level I loved her deeply, beyond the itch of aggravation. So I began to slow down to see what was really going on....When I slowed down to be fully with Mom, I also saw more depth in the nursing home experience than I had expected. People who live in nursing homes are full of life. Beneath the restrictions of their diminishing physicality and cognition, their spirit is often strong; I know my mother’s was. And the more I visited her, the stronger and more loving she became. She would break out in a joyful grin whenever she saw me walk down the corridor, a far cry from the critical look up and down or remark about my unruly hair that I was used to from her.

Her fellow residents began to show me who they were too. Rather than rush by them, speeding to get to my mother’s room and its relative safety, I started to actually see them. I began to greet each one. I learned their names and something about them so we could converse regularly. We made jokes with each other. I would often find myself with a smile on my face looking across the dining room as I helped Mom eat, the complete opposite of the look of horror I first wore when sitting in that room....I have read this quote in my Buddhist studies: “Fear is the natural reaction to nearing the truth. It may all come down to fear of death. Or fear of tenderness. Smile at fear, make friends with it. When we look at fear with gentleness, it’s not solid.”

Call for Papers: Conference on Death and Dying

The 14th annual conference on the Social Context of Death, Dying, and Disposal, held on behalf of the Association for the Study of Death and Society (ASDS), in the UNESCO World Heritage city of Bath, will showcase academic and professional research and creative work related to death, dying, disposal and bereavement.

The conference is taking place at a time when both academia and front-line practitioners are under increasing pressure to show real world relevance and contribution. The theme of the conference is Engagement and Education.

The Call for Papers is now open - see below for details.

It is a multi-disciplinary conference open to all, including, but not limited to:

anthropologists
archaeologists
art and architectural historians
artists
bereavement counsellors
cultural theorists
critical race theorists
queer theorists
independent scholars
cultural geographers
death work practitioners
historians
literary theorists
medical and health practitioners
end-of-life and palliative care workers
philosophers
psychologists
students of religion
social policy analysts
social workers
sociologists
computer scientists
those in the legal professions

The Four Ways People Die

Mark Starmach writes on Medium about the four ways people die and how to do it well. Dr. Yvonne McMaster, a retired palliative care physician, explains that basically, there is sudden death (rare) and the others are variations on how even and long the decline is, from slow, gentle slope to periods of being better and worse to slow followed by fast.

[P]alliative care is somewhere in the background. It’s supportive medicine and therapy in the form of symptom-controlling medication, rehabilitation, and counsel, which doesn’t necessarily cure illness, but does make it easier to cope or recover. Curative and palliative efforts complement each other. Curative care makes you get better, but palliative care makes you feel better, kind of like how a sore throat lozenge soothes your throat even if it doesn’t “cure” the cause of the soreness.

As we get older, however, many of us develop conditions that are life-limiting, chronic, or terminal. (Life itself is a terminal condition, as Yvonne likes to remind me.) And this is when palliative care comes more into the foreground, focusing on a patient’s quality of life, symptoms, and emotional wellbeing, as well as the welfare of their loved ones. It doesn’t focus on curing but it isn’t “giving up,” and it doesn’t necessarily mean that death is imminent; many people receive palliative care for years.

It also isn’t the same as euthanasia.

Dr. McMaster talks about "a good death."

A good death is one as painless as possible.

A good death is one with friends and loved ones by your side and medical assistance within arm’s reach.

A good death is one where you are looked after in accordance to your values and wishes, seamlessly, as you’re moved from institution to institution.

But there’s another element to a good death, which I see as a common theme across all of Yvonne’s stories: a sense of closure.