The Last Few Minutes of Life -- Comforting Visions, Final Surge

https://youtube.com/shorts/8p9ntin5s8Q?si=7IafGqkPaYhTwZtp

Visions or Delusions or the Brain Shutting Down: Deathbead Encounters

My great-grandmother-in-law's last words were, "Mama! Mama!" Did she see a vision of her mother, gone for more than sixty years, welcoming her to heaven? Or was she imagining herself a small child, calling out for her mother for comfort? The Washington Post has an article by Caitlin Gibson called The profound meaning and mystery of deathbed visions, about end-of-life dreams and visions, or ELDVs. William Kerr, the doctor studying this phenomena after years of medical professionals dismissing them as delusions, said they describe people and places they saw in dreams and visions, which might occur in different states of consciousness — wide awake, half awake or completely asleep — but conveyed the same striking intensity, an undeniable sense of realness. They were nothing like “normal” dreams, these patients insisted; their experiences felt wholly immersive, coherent and meaningful. Kerr noted that these descriptions stood in sharp contrast to the more discordant, often distressing experiences of delirium or medication-induced hallucinations, which also commonly occur in dying patients....The vast majority of ELDVs are comforting, but some can be unsettling or disturbing. Some patients find themselves revisiting pivotal episodes of their lives, while others experience more mundane, familiar moments. Travel is a frequently recurring theme: Many people describe packing suitcases, preparing for a trip or seeing loved ones in train or bus stations. ELDVs might occur very soon before a death — within hours or days — but can sometimes take place weeks or even a few months beforehand, often corresponding to a patient’s fluctuating health and typically increasing in frequency as death grows nearer.... [His] study, published in 2014 in the Journal of Palliative Medicine, found that end-of-life dreams and visions were strikingly common: 88 percent of patients reported experiencing at least one. And from the follow-up, with reader experiences:

I have worked as a hospice nurse for the last 20 years, and I’ve had lots of these kinds of experiences with people I was caring for as they were dying. I remember one lady who told me, when I went in to give her medication, “I know you’re going to think I’m crazy, because he died seven years ago, but my husband is standing over there in the corner by the door, and he’s wearing his favorite plaid sports jacket.” And she died the next day. There have been so many experiences like that.

Elizabeth Gilbert on the struggle of watching the person you love die T...

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

A Gentler Death -- Palliative Sedation

The Washington Post reports on the grey area of palliative sedation that can relieve suffering and hasten death.

Under palliative sedation, a doctor gives a terminally ill patient enough sedatives to induce unconsciousness. The goal is to reduce or eliminate suffering, but in many cases the patient dies without regaining consciousness....While aid-in-dying, or “death with dignity,” is legal in seven states and the District [of Columbia], medically assisted suicide retains tough opposition. Palliative sedation, though, has been administered since the hospice care movement began in the 1960s and is legal everywhere....

Because there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal, said Timothy Quill, who teaches psychiatry, bioethics and palliative-care medicine at the University of Rochester Medical Center in New York.

Some doctors are hesitant about using it “because it brings them right up to the edge of euthanasia,” Quill said.

But Quill believes that any doctor who treats terminally ill patients has an obligation to consider palliative sedation. “If you are going to practice palliative care, you have to practice some sedation because of the overwhelming physical suffering of some patients under your charge.”

91-year-old man knits hats for the homeless

When you reach the end of your life, what will go through your mind? Which areas of your life will you scrutinize and take inventory? Will you evaluate whether or not you were a good son, sibling, father and friend? Maybe you’ll think about the accomplishments you accumulated or, perhaps, some of the failures and shortcomings. Others may focus exclusively on the end, lean on their faith, and concentrate on what they believe is to come in the afterlife. Morrie Boogaart knows he’s nearing the end of his life. The 91-years old is currently a resident at Cambridge Manor assisted living facility in Grandville, Michigan. He’s barely mobile, spending every day bedridden. Family members visit him regularly, but when they leave, Morrie is left with his life-long memories to stimulate him. A well-worn bible sits innocently on his nightstand, and hanging on one of his walls is an 8x10 photo of his wife Donna Mae, who passed away 16 years ago. “I had a good life,” said Boogaart, while he slowly wraps yarn around his spindle. “I have always accepted what I had in life, and this is now what it is for me.” Right next to Morrie’s nightstand is a pile of brown boxes stacked on top of each other. None of the boxes can be closed because each one is overflowing with more yarn. “I just like to do it,” said Morrie, as he continued knitting. “My eyes aren’t as good as they used to be, but I can still do this.” Boogaart wakes up every morning and starts knitting. He doesn’t stop knitting until he falls asleep at night. This happens all day, every day. “This is my life,” said Morrie. “I have always liked to helped people, and I’m not going to stop now. “We all need a sense of purpose.” Morrie knits hats, and since he started doing it nearly 15 years ago, he claims to have knitted at least 8,000 of them.

“That’s why most people call me the ‘Hat Man,’” he said."

91-year-old man knits hats for the homeless

"Compassionate Admission" Allows Wife of 73 Years to Share a Bed With Her Dying Husband

The Washington Post reports:

For 73 years — through wars in Europe and Asia and civil rights battles at home, through the assassination of a president and the rise of rock-and-roll — they shared a bed.

He’d be gone sometimes, flying missions during World War II and the Korean and Vietnam wars, but he always came back to her.

So now, as he lies in a hospital bed unable to say or do much, she lies beside him.

Like many hospitals, Fort Belvoir Community Hospital, where retired Army Col. George Morris, 94, is receiving end-of-life care, allows family members to sleep in a patient’s room on a foldout couch. But for George’s wife, Eloise, 91, a cancer survivor who has suffered two broken hips and a broken shoulder, that would be hard.

So the hospital made a special exception when they admitted him this month: They admitted her as a patient, too — a “compassionate admission,” their doctor calls it.

After a 73-year union, ailing couple finds two hospital beds pushed together offer the best comfort

What people talk about before they die - CNN.com

"I visit people who are dying -- in their homes, in hospitals, in nursing homes. And if you were to ask me the same question -- What do people who are sick and dying talk about with the chaplain? -- I, without hesitation or uncertainty, would give you the same answer. Mostly, they talk about their families: about their mothers and fathers, their sons and daughters. They talk about the love they felt, and the love they gave. Often they talk about love they did not receive, or the love they did not know how to offer, the love they withheld, or maybe never felt for the ones they should have loved unconditionally. They talk about how they learned what love is, and what it is not. And sometimes, when they are actively dying, fluid gurgling in their throats, they reach their hands out to things I cannot see and they call out to their parents: Mama, Daddy, Mother.

What I did not understand when I was a student then, and what I would explain to that professor now, is that people talk to the chaplain about their families because that is how we talk about God. That is how we talk about the meaning of our lives. That is how we talk about the big spiritual questions of human existence.

We don't live our lives in our heads, in theology and theories. We live our lives in our families: the families we are born into, the families we create, the families we make through the people we choose as friends.

This is where we create our lives, this is where we find meaning, this is where our purpose becomes clear.

Family is where we first experience love and where we first give it. It's probably the first place we've been hurt by someone we love, and hopefully the place we learn that love can overcome even the most painful rejection. This crucible of love is where we start to ask those big spiritual questions, and ultimately where they end."

What people talk about before they die - CNN.com

The Last Words of My English Grandmother

The Last Words of My English Grandmother
by William Carlos Williams

There were some dirty plates
and a glass of milk
beside her on a small table
near the rank, disheveled bed—

Wrinkled and nearly blind
she lay and snored
rousing with anger in her tones
to cry for food,

Gimme something to eat—
They’re starving me—
I’m all right I won’t go
to the hospital. No, no, no

Give me something to eat
Let me take you
to the hospital, I said
and after you are well

you can do as you please.
She smiled, Yes
you do what you please first
then I can do what I please—

Oh, oh, oh! she cried
as the ambulance men lifted
her to the stretcher—
Is this what you call

making me comfortable?
By now her mind was clear—
Oh you think you’re smart
you young people,

she said, but I’ll tell you
you don’t know anything.
Then we started.
On the way

we passed a long row
of elms. She looked at them
awhile out of
the ambulance window and said,

What are all those
fuzzy-looking things out there?
Trees? Well, I’m tired
of them and rolled her head away.

A touching story of an old father, son and a sparrow

Atul Gawande’s 5 Questions to Ask at Life’s End – Next Avenue

"We need to know:   1. What is your understanding of where you are and of your illness? 2. Your fears or worries for the future 3. Your goals and priorities 4. What outcomes are unacceptable to you? What are you willing to sacrifice and not? And later, 5. What would a good day look like?   Asking these allows everybody to understand what the goal really is — what are you really fighting for? It’s for a life that contains certain things."

Atul Gawande’s 5 Questions to Ask at Life’s End – Next Avenue

Griefwalker: Touching Film about Stephen Jenkinson and EOL

Griefwalker by Tim Wilson, National Film Board of Canada

This documentary introduces us to Stephen Jenkinson, once the leader of a palliative care counseling team at Toronto's Mount Sinai Hospital. Through his daytime job, he has been at the deathbed of well over 1,000 people. What he sees over and over, he says, is "a wretched anxiety and an existential terror" even when there is no pain. Indicting the practice of palliative care itself, he has made it his life's mission to change the way we die - to turn the act of dying from denial and resistance into an essential part of life.

Diane Rehm’s next act: Using her famed voice to fight for the good death - The Washington Post

"Her new memoir, “On My Own,” recounts her husband’s decision to end his life in June 2014 after his physician was legally barred from helping. Diagnosed with Parkinson’s disease in 2005, and after two years in an assisted living facility, John Rehm refused food, liquids and medication.

It took 10 days to die, an eternity.

“I rage at a system that would not allow John to be helped toward his own death,” Rehm writes of watching her spouse of 54 years wither away.

[Review: In “On My Own,” Diane Rehm argues for the right to die.]

The experience sparked her advocacy in the right-to-die movement. “I feel the way that John had to die was just totally inexcusable,” she told The Washington Post last year. “It was not right.”

Her public stand, and a commitment to host three dinners for the organization Compassion & Choices, which advocates for legalizing physician-assisted suicide, resulted in an admonishment from a room full of station and NPR brass. Rehm is supposed to moderate news issues, not make them.

“I was annoyed,” Rehm recalls of the experience. “Political issue or not, it’s also an extraordinarily personal one to me because of John.”"



Diane Rehm’s next act: Using her famed voice to fight for the good death - The Washington Post:

I adopt 'hospice babies' no one else wants; here's why - TODAY.com

 "We invest deeply, and we ache terribly when these kids die, but our hearts are like stained-glass windows. Those windows are made of broken glass which has been forged back together, and those windows are even stronger and more beautiful for having been broken."

I adopt 'hospice babies' no one else wants; here's why - TODAY.com

Baby Boomer's Last Revolution: Changing the Way We Die

Baby boomers have spent more than half a century revolutionizing the way we live. Now it is time for us to revolutionize the way we die.

We came of age in the post-WWII era of complacency, consumerism, and conformity. We said the Pledge of Allegiance every morning in school (with "under God" added in 1954 to show the godless commies what was what) and we watched "Duck and Cover" films in school to show us how to respond to a nuclear attack. We were taught the story of unalloyed American exceptionalism in school. America beat the Nazis and polio. We believed in our heroes, from George Washington to Mickey Mantle. Our president was a war hero. Our corporations were benign, promising us better living through chemistry. We ate PB&J on Wonder Bread that was supposed to build strong bodies twelve ways and we had Twinkies for dessert.


Then we grew up seeing our leaders murdered: John Kennedy, Malcolm X, Medgar Evers, Martin Luther King Jr., Robert Kennedy. The U.S. sent troops to Vietnam and war turned out to be more complicated than we had been told. Politicians did not always tell the truth. Around the time we reached voting age, President Nixon was resigning in disgrace.

And so we became the generation that did not trust anyone over 30. We challenged everything the grown-ups gave us from the draft to healthcare to the toxic substances in air, water, and our homes and the products we produced and used. The "Our Bodies Ourselves" movement shifted the focus of medical treatment to give patients better information and wider choices. Was your father in the room when you were born? Did your mother get to decide how she wanted to manage medication for labor pains? You're welcome.

We saw injustice and so we protested and we challenged more. We changed the laws to protect the rights of women, minorities, the disabled, and the LGBT community. We made consumer goods safer, especially cars and toys. We created the modern environmental movement, stopped the damage to the ozone layer, took lead out of gas, and brought our lakes back from near-death.

We understand that there is much more to do, and we have seen some of our most important efforts rolled back or distorted beyond recognition. But we have never given up on our commitment to questioning what is and pushing for what is better.

We understand that some of you who came after us consider us spoiled and selfish. You're welcome for that, too. We did not invent the idea of complaining about the excesses and failures of the previous generation, but we pretty much perfected it.

Here's a secret -- we're delighted when you blame everything on us. First, it means you learned our most important lesson about your obligation to recognize and repair the failures of the past. And second, we know how cycles of history work, which means that your children will think we were just great, while they are carrying on our tradition of rebelling against you.
We can handle whatever you've got. We survived disco, yuppies, Iran-Contra, the Starr report, the dot.com bubble and the sub-prime meltdown. One word of advice, though: No complaining unless you have a constructive solution to propose along with it. Otherwise, it's just whining.

Before we turn it all over to you, though, we've got one last revolution: end of life care. We used to talk to our friends about caring for our children, about teething, homework, and college applications. Now we exchange stories about caring for our parents, about finding caregivers and assisted living facilities, about durable powers of attorney and navigating Medicare, about dementia and rehab after strokes. There is a growing body of literature by baby boomers writing about caring for their parents at the end of life including Roz Chast's brilliant Can't We Talk About Something More Pleasant?, George Hodgman's touching Bettyville, and Scott Simon's heartrending Unforgettable.

A director of an assisted living facility says that she began her career helping people in their 50s care for parents in their 70s, but now works with people in their 70s caring for parents in their 90s. The advances in treatment for heart disease and cancer have given us more time than any generation in history with our parents, for which we are grateful beyond words. But it has also given us unprecedented health care challenges with the number of people around the world living with dementia predicted to rise from 44 million today to 135 million by 2050. Our health care system is still too focused on treatment rather than prevention, which means that near-endless expensive treatments are covered, whether they will improve the quality of life or not. But until 2016, there was no coverage for conversations about whether a patient wants those treatments.

The numbers in the studies vary, but all of them conclude that a huge percentage of our health care costs are spent treating people in the last six months of life. Anyone who wants that six months should have it. But because doctors and families are skittish about asking patients what they want, too often the result is needless suffering. Over and over, my friends have told me, "I thought I was doing the right thing by seeking out the best treatment options for my parents and insisting on every possible procedure and medication. But now I realize that it was for me, not for them." Dr. Craig Bowron wrote in the Washington Post about the way that family members, particularly those who have not been caretakers, rush in to insist that "we do everything we can," meaning as many medical procedures and treatments as possible. They often use the vocabulary of battle. "This person may think she is being driven by compassion," he says, but it is more likely to be a reflection of "the guilt and regret of living far away and having not done any of the heavy lifting in caring for her parent." It can reflect the adult child's own fear of death, loss, and lack of control as well. Bowron writes:

When their loved one does die, family members can tell themselves, "We did everything we could for Mom." In my experience, this is a stronger inclination than the equally valid (and perhaps more honest) admission that "we sure put Dad through the wringer those last few months."

One friend said no four times when doctors suggested he put his 96-year-old father, who had severe dementia and intractable pain, into hospice because, "I promised my mother I would not let him die." He thought he was doing what his parents wanted. So he insisted on hospitalization and treatment for his father, who could not understand or cooperate. Not many of us would choose that for ourselves, and we need to let the people we love know while we can.
Each person should have the chance to decide when it is time to shift from health care toward a cure to health care for comfort and pain management. That means giving us and our families the information and support they need. Death is not quick and simple, like in the movies. Just as they have learned to do with childbirth, health professionals need to learn to talk to patients and their families about what to expect. That knowledge is more important than any advanced directive or pain relief.
Some initial efforts are confusing, even intimidating. A long check-list of choices about end of life asks us to project ourselves into choices no one can predict accurately. But important changes are happening now and other promising initiatives are on the horizon.

• The "slow medicine" movement pioneered by Dr. Michael Finkelstein encourages health care workers to talk to patients about their goals, to treat the person, not the disease. As Dr. Shoshana Ungerleider wrote in Vox:
  

  My patients have all taught me valuable lessons about what a "good death" might look like. Each one has reminded me that there is more to medicine than placing a line to monitor the heart, or performing an intubation. Just because more tests and procedures exist does not mean that we should perform them all each time. Sometimes the most powerful healing of all comes through the simple act of sitting and listening to our patients with compassion.
  We know that 75 percent of Americans would prefer to die at home. Only 20 percent actually do. We also know that 80 to 90 percent of physicians would not want CPR or mechanical ventilation at the end of life. Doctors actively choose to forgo the suffering that takes place in our ICUs, because we've seen it and we know better. My goal is to close this gap, to educate my patients about their options based on open, honest communication. I no longer see death as a failure but as a place we are all headed at some point -- and if I can help someone live the fullest to the very end, I have practiced the best medicine.

  
  

• A small town in Wisconsin is pioneering end of life conversations. Sarah Kliff writes in Vox that "La Crosse has, over the past three decades, done something remarkable: nearly all its residents have a plan for how they want to die." Even though consultations about end of life wishes are not paid for by insurance or (until 2016) Medicare, the health care practitioners of LaCrosse made it as regular a part of treatment as flu shots and questions about allergies to medication.
  

  When patient preferences are known -- as they almost universally are in La Crosse -- people tend to select less aggressive courses of treatment. And this is what has earned the La Crosse model so much praise: it's shown a meaningful reduction in health spending as a side effect of respecting patient wishes.

  
  

• California has followed Oregon, Washington, and Vermont in adopting "right to die" legislation. Patients who have been certified by two doctors as being within six months of death (at least one of those consultations in private to prevent coercion) and meet other criteria for autonomy and capacity will be able to choose to end their lives as they wish. As the Washington Post noted:
  

  [Oregon] collects data on each case, and there have been no reports of coerced or wrongly qualified assisted deaths. The typical patient is about 71, suffering from terminal cancer, well-educated, with health insurance and enrolled in hospice. About one-third of prescriptions were never used, suggesting some terminally ill people are comforted by knowing they have an alternative to extensive suffering should they need it.

  
  

• As of January 1, 2016, Medicare now covers consultations with physicians about end of life wishes. Contrary to Sarah Palin, these are not "death panels." The choices are all with the patient, not the government. Possibly even more significant, Massachusetts Blue Cross has now extended coverage for these discussions as well and other insurance companies are expected to do so as well. These are opportunities for patients to hear what the options are, decide for themselves what they want, and give their directions to the doctors who will be treating them. Unsurprisingly, these consultations themselves are a key factor in increasing the comfort level of people at the end of life because gives them a sense of control and closure. It is similar to the transformation of childbirth in the 1960's and 70's, giving women and their partners better information and more opportunities to create the experience they wanted for themselves and their babies. I like Katy Butler's suggestion of a "Medicare Part Q." It would "make the transition smoothly from useful curative approaches to those focused on sustaining my quality of daily life, to 'comfort care only' and, I hope, a gentle death at home."

• Hospice and palliative care specialties are becoming more widely available and better resources for people approaching the end of life and their families. The arbitrary "within six months of expected death" standard is increasingly being replaced, allowing a patient to decide when to shift from medical treatment for cure to medical treatment for comfort and pain management. The UK is setting the standard for the rest of the world with about 30 percent of dying people receiving hospice services, many of them dying at home, as they wished.

• The eco-burial movement provides alternatives to the toxic materials that have traditionally been used in embalming and caskets.

• There is a new specialty called "death doulas," people specially trained to help those at the end of life and their families. Like their counterparts, the birth doulas, "they understand how to provide support, counseling, and treatment. And friends and family members can serve as "death walkers" for those they love. This description of a granddaughter's last hours with her grandmother is beautiful:
  

  My sister and I sat on the bed with her for many hours the last week of her life. I would rub her hands, wash her face with a warm cloth, sing to her, tell her some of my favorite memories and sometimes simply hold the quiet space as she slept.

  
  

• Former columnist Ellen Goodman has developed The Conversation Project to help families discuss end of life issues. She writes:
  

  The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death. I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it. And so I never want to leave the people I love that uneasy and bewildered about my own wishes. It's time for us to talk.

  Other resources include "Let's Have Dinner and Talk About Death," and even an app called Cake, which helps people consider the options for funeral preferences and financial planning, bucket list items like places people want to see before dying, and strengthening their connections.

Talking about the end of life is scary. Not talking about it is worse. We need changes and the baby boomers are our best shot for making them. I am trying to have that conversation with my parents and am determined to have it with my children. As Atul Gawande says, "the ultimate goal is not a good death but a good life - all the way to the very end."

Prepare for Death and Dying Wisely | It's OK to Die™

"Like it or not, we all die. But those who have made their peace with life and who have made clear plans in advance for death, find that the end of life may be transformed into a powerful time unlike any other. Preparation prevents suffering, but also creates opportunities for peace, closure and even healing. Here at OKtoDie.com, our goal is to educate and empower you with tools, checklists and resources. We want to hear your end-of-life stories and discuss your ideas or concerns. Whether you are visiting this site for yourself or another, we can prepare you. It can be OK to die."



Death preparation checklists



Prepare for Death and Dying Wisely | It's OK to Die™:

Catch and Release - Finding Life in Death: Michael Fratkin at TEDxEureka

Five Wishes: how does an advance directive help my family?

Jerry Brown’s amazingly humble, humane right-to-die decision.

The Governor of California explains why he signed the right-to-die legislation: "I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to consider the options afforded by this bill. And I wouldn’t deny that right to others."



Jerry Brown’s amazingly humble, humane right-to-die decision

To Live Until You Die - Dr Elisabeth Kubler-Ross