The 11 qualities of a good death

Opening up about death can make it easier for ourselves and our loved ones.

By Jordan Rosenfeld

Nearly nine years ago, I received a call from my stepmother summoning me to my grandmother’s house. At 92 years old, my Oma had lost most of her sight and hearing, and with it the joy she took in reading and listening to music. She spent most of her time in a wheelchair because small strokes had left her prone to falling, and she was never comfortable in bed. Now she had told her caregiver that she was “ready to die,” and our family believed she meant it.

I made it to my grandmother in time to spend an entire day at her bedside, along with other members of our family. We told her she was free to go, and she quietly slipped away that night. It was, I thought, a good death. But beyond that experience, I haven’t had much insight into what it would look like to make peace with the end of one’s life.

A recent study published in the American Journal of Geriatric Psychiatry, which gathered data from terminal patients, family members and health care providers, aims to clarify what a good death looks like. The literature review identifies 11 core themes associated with dying well, culled from 36 studies:

  • Having control over the specific dying process
  • Pain-free status
  • Engagement with religion or spirituality
  • Experiencing emotional well-being
  • Having a sense of life completion or legacy
  • Having a choice in treatment preferences
  • Experiencing dignity in the dying process
  • Having family present and saying goodbye
  • Quality of life during the dying process
  • A good relationship with health care providers
  • A miscellaneous “other” category (cultural specifics, having pets nearby, health care costs, etc.)

In laying out the factors that tend to be associated with a peaceful dying process, this research has the potential to help us better prepare for the deaths of our loved ones—and for our own.

Choosing the way we die

Americans don’t like to talk about death. But having tough conversations about end-of-life care well in advance can help dying people cope later on, according to Emily Meier, lead author of the study and a psychologist who worked in palliative care at the University of California San Diego’s Morres Cancer Center. Her research suggests that people who put their wishes in writing and talk to their loved ones about how they want to die can retain some sense of agency in the face of the inevitable, and even find meaning in the dying process.

Natasha Billawala, a writer in Los Angeles, had many conversations with her mother before she passed away from complications of the neurodegenerative disease ALS (amytropic lateral sclerosis) in December 2015. Both of her parents had put their advanced directives into writing years before their deaths, noting procedures they did and didn’t want and what kinds of decisions their children could make on their behalf. “When the end came it was immensely helpful to know what she wanted,” Billawala says.

When asked if her mother had a “good death,” according to the UCSD study’s criteria, Billawalla says, “Yes and no. It’s complicated because she didn’t want to go. Because she lost the ability to swallow, the opportunity to make the last decision was taken from her.” Her mother might have been able to make more choices about how she died if her loss of functions had not hastened her demise. And yet Billawalla calls witnessing her mother’s death “a gift,” because “there was so much love and a focus on her that was beautiful, that I can carry with me forever.”

Pain-free status

Dying can take a long time—which sometimes means that patients opt for pain medication or removing life-support systems in order to ease suffering. Billawala’s mother spent her final days on morphine to keep her comfortable. My Oma, too, had opiate pain relief for chronic pain.

Her death wasn’t exactly easy. At the end of her life, her lungs were working hard, her limbs twitching, her eyes rolling behind lids like an active dreamer. But I do think it’s safe to say that she was as comfortable as she could possibly be—far more so than if she’d been rushed to the hospital and hooked up to machines. It’s no surprise that many people, at the end, eschew interventions and simply wish to go in peace.

Emotional well-being

Author and physician Atul Gwande summarizes well-being as “the reasons one wishes to be alive” in his recent book Being Mortal. This may involve simple pleasures like going to the symphony, taking vigorous hikes or reading books He adds: “Whenever serious sickness or injury strikes and your body or mind breaks down … What are the trade-offs you are willing to make and not willing to make?”

Kriss Kevorkian, an expert in grief, death and dying, encourages those she educates to write advance directives with the following question in mind: “What do you want your quality of life to be?”

The hospital setting alone can create anxiety or negative feelings in an ill or dying person, so Kevorkian suggests family members try to create a familiar ambience through music, favorite scents, or conversation, among other options, or consider whether it’s better to bring the dying person home instead. Billawalla says that the most important thing to her mother was to have her children with her at the end. For many dying people, having family around can provide a sense of peace.

Opening up about death and dying

People who openly talk about death when they are in good health have a greater chance of facing their own deaths with equanimity. To that end, Meier is a fan of death cafés, which have sprung up around the nation. These informal discussion groups aim to help people get more comfortable talking about dying, normalizing such discussions over tea or cake. It’s a platform where people can chat about everything from the afterlife (or lack thereof) to cremation to mourning rituals.

Doctors and nurses must also confront their own resistance to openly discussing death, according to Dilip Jeste, a coauthor of the study and geriatric psychiatrist with the University of California San Diego Stein Institute for Research on Aging. “As physicians we are taught to think about how to prolong life,” he says. That’s why death becomes [seen as] a failure on our part.” While doctors overwhelmingly believe in the importance of end-of-life conversations, a recent US poll found that nearly half (46%) of doctors and specialists feel unsure about how to broach the subject with their own patients. Perhaps, in coming to a better understanding of what a good death looks like, both doctors and laypeople will be better prepared to help people through this final, natural transition.

Complete Article HERE!

More people are dying at home, but the quality of their deaths matters most

Did they receive care and compassion from loved ones or did they die alone, fearful of getting infected in hospital?

By and

From the start of the pandemic to 24 September 2021, deaths at home in England and Wales have been 37% higher than the 2015-2019 average, according to the Office for National Statistics.

For every three people who used to die at home, four now do. That’s more than 71,000 “excess” deaths, only 8,500 of which involved Covid. Even as mortality elsewhere fell back to past levels, dying in private homes has persistently remained above average. A natural question arises: are these “extra” deaths or a shift from other locations?

Fortunately, National Records of Scotland publishes excess death calculations by location and major causes of death. Its most recent data shows the leading causes of death were cancer, heart disease and stroke. In 2021, the combined total for these causes was only about 1% above the 2015-2019 average, with around 260 extra deaths. However, deaths from these causes at home were 36% higher than recent years, with a corresponding decrease in care homes and hospitals. These additional deaths at home were not “extra”, but resulted from a major, systematic change in where people were dying.

So what’s the reason for this change and, perhaps more importantly, what was the quality of these deaths? How many were free of pain and experienced intimate care and compassion from loved ones and how many have died at home alone, fearful of getting infected in hospital? Existing statistics struggle to answer these important questions.

NHS England has sought to “personalise” end-of-life care in its long-term plan. Reported statistics from surveys and patient records about where people wish to die can exclude “missing” responses, such as when no preference is forthcoming. It is unclear if the shift towards dying at home is, on balance, a positive or negative development.

Every family has to deal with a death and live with its aftermath. In the words of Sam Royston, director of policy and research at Marie Curie: “It is critical that we ensure that those who die at home have all of the support and assistance they need for the best possible death.”

Complete Article HERE!

She’s 51, a mother and a devout Catholic. She plans to die by euthanasia on Sunday.

Martha Sepúlveda is pictured with her son, Federico Redondo Sepúlveda. The mother, now 51, plans to end her life by euthanasia on Sunday.

By Samantha Schmidt and Diana Durán

It began with a strange feeling in her hand, a weakness in the thumb that made it difficult to hold a pen or grip a computer mouse.

In November 2018, a doctor gave Martha Sepúlveda her diagnosis: amyotrophic lateral sclerosis, the progressive neurological disease known in the United States as Lou Gehrig’s disease. In the months that followed, the Colombian woman lost control of the muscles in her legs — and she knew it would only get worse.

She would cry at night, overwhelmed by the thought. “What happens once I can no longer get into bed or use the bathroom without help?” she would ask her son. “How far am I going to go?”

Sepúlveda started reading about an option that could relieve her fear of what was to come: Euthanasia. Colombia, she learned, is the only country in Latin America — and one of only a few worldwide — that permits patients to end their lives.

Until this year, the option has been available legally only to those who are expected to live for six months or less. On Sunday, Sepúlveda, who considers herself a devout Catholic, plans to become the first person in Colombia without a terminal prognosis to die by legally authorized euthanasia.

Colombia’s constitutional court ruled in July that the right to euthanasia — recognized here in 1997 — applies not only to terminal patients, but also to those with “intense physical or mental suffering from bodily injury or serious and incurable disease.”

The ruling has divided the faithful in this majority-Catholic country. Church officials have described euthanasia as a “serious offense” to the dignity of human life; a member of the national bishops’ conference urged Sepúlveda to “calmly reflect” on her decision and invited all Catholics to pray that God will grant her mercy.

But Sepúlveda, 51, has been resolute in her response to those who question her plan — or her faith.

“I know that God is the owner of life,” she told Colombia’s Caracol News. “But God doesn’t want to see me suffer.”

This South American nation is an unlikely pioneer in euthanasia. An estimated 73 percent of the population is Catholic. Eleven Catholic feast days are national holidays. Access to abortion is sharply limited.

And yet Colombia was one of the first countries in the world to decriminalize euthanasia, and one of only a small number — alongside Belgium and the Netherlands — to extend the right to non-terminal patients. No U.S. state permits euthanasia; 10 states and the District of Columbia allow medically assisted suicide for terminally ill, mentally capable adults with a prognosis of six months or less to live.

Now, advocates here are hoping their movement will spread across Latin America, according to Camila Jaramillo, a lawyer representing Sepúlveda with the Laboratory of Economic, Social and Cultural Rights (DescLAB). Campaigns are underway in Uruguay and Chile. In Peru this year, Lima’s superior court ruled that a woman with polymyositis should be permitted to die by euthanasia when she decides she is ready.

How did a country of Catholics, often led by center-right politicians, become a leader in euthanasia rights?

Eduardo Díaz Amado, director of the Bioethics Institute at Pontifical Xavierian University in Bogotá, traces the development to the country’s long civil war and the violence wrought by drug lord Pablo Escobar. In 1991, in response to the country’s instability, Colombia rewrote its constitution. Unlike its “paternalistic” predecessor, Díaz said, the new constitution expanded individual rights, emphasized “the respect of human dignity” and underscored the separation of church and state.

The document also established a constitutional court to help define these newly recognized rights. Within six years, the new court, now with several progressive judges, took up a case from a plaintiff who argued that “mercy killings” should carry the same penalty as any other homicide.

The court disagreed. Instead of increasing the penalty, it moved to decriminalize euthanasia — becoming the only country to do so on the basis of constitutional arguments, Díaz said.

But it took more than 15 years for authorities to apply the ruling. As political leaders sought to avoid the subject, doctors such as Gustavo Quintana met growing demand for the practice. Known as the “doctor of death,” Quintana is said to have provided euthanasia to close to 400 patients before his recent death.

In 2014, the court ordered the government to issue guidelines so that hospitals, insurers and health professionals would know how to proceed with euthanasia requests.

The movement for euthanasia rights has drawn unexpected allies: Catholic priests. Alberto Múnera, a theology professor and Jesuit priest at the Pontifical Xavierian University in Bogotá, lectures his students on the “exceptions” to the “absolute value of human life” in church teaching. When Catholics follow their own consciences, even when that means choosing to end their own lives, he argues, they will “behave well” in the eyes of God.

Since the government began regulating the practice in 2015, 157 people have died by euthanasia in Colombia, according to official data. One hundred and forty-one had some type of cancer. But many others, including Sepúlveda initially, were denied requests because their illnesses were not deemed terminal in the short term. Last year, a team of lawyers filed a lawsuit asking the constitutional court to extend the right to patients with non-terminal diagnoses.

The court went further, recognizing a right to euthanasia for those with “intense physical and mental suffering.” That was a surprise even for the lawyers, who did not mention mental illness in their complaint. And it drew immediate rebuke from church leaders and conservative politicians.

“It opens up the possibility for people who are depressed or simply don’t want to live anymore,” said Sen. María del Rosario Guerra, a member of the Democratic Center party of President Iván Duque. “We are promoting a culture of death

Bishop Francisco Ceballos, a leader within the national bishops’ conference, has criticized news outlets here for depicting Sepúlveda “heading toward death with so much joy.” He has emphasized the church’s support for palliative care as an alternative to euthanasia. “We believe that death cannot be the solution to suffering and pain,” he said.

The court’s ruling in July came less than a month after the death of Yolanda Chaparro, a 71-year-old Colombian woman with ALS who had requested euthanasia a year earlier but was rejected because her prognosis was not deemed terminal. She continued to deteriorate until she could no longer breathe without oxygen, struggled to move on her own, and lived with a fear that she could drown in her own saliva, according to her daughter. She was granted her wish to end her life in June.

Shortly before her death, Chaparro sat down with her relatives to explain her decision. “For me, to live is to fly,” she said, in an interview recorded by relatives. “To live is to walk, to create. To live is to commit to dreams you’ve formed your whole life. So seeing that each day everything is more difficult … all of that is over.”

When Federico Redondo Sepúlveda learned of the court ruling, he broke down in tears. The 22-year-old law student, Martha’s only child, had spent months helping his mother file a request for euthanasia.

“I didn’t think it would happen so soon,” he said. He had tried to find the strength to support his mother in what for him has been an excruciating choice.

“She kept saying the same thing, that if I loved her then I would support her,” he said.

They have spent his mother’s final days mostly watching Netflix — a joy she discovered during the coronavirus pandemic. They’ve watched and re-watched “The Pianist,” “Forrest Gump,” and “The Shawshank Redemption,” movies that remind them of years past.

The family doesn’t have special plans for his mother’s final night Saturday. She hopes to spend it as she always does, by going to bed early. She plans to end her life at 7 a.m. on Sunday, when she would normally be heading to church. Her son will be the only person in the room with her, he said.

Her body is to be cremated immediately. Federico plans to spread her ashes in the Caribbean Sea, off Colombia’s northern coast. But first, he will join with their family, her remains beside him, and take the Eucharist

Complete Article HERE!

Death and psychedelics

— How science is reviving this ancient connection

By

In November 1963, the writer and psychedelic explorer Aldous Huxley laid in bed, unable to speak. He was dying of cancer. One of his final acts was to pass a handwritten note to his wife Laura. 

His famous last words: “LSD, 100 µg, intramuscular.”

It was Huxley’s dying wish: a large dose of acid, please. Laura Huxley fulfilled the request twice during her husband’s final hours.

First synthesized 25 years before Huxley’s death, LSD was still legal in 1963. Scientists were studying it as a potential treatment for alcoholism and other ailments, as well as investigating its similarity to other psychedelics. It wasn’t until 1968 that the federal government outlawed these drugs due to their association with the cultural turbulence of the 1960s.

Today, several decades later, terminal cancer patients are once again taking psychedelics. This time around the drugs are being administered by doctors and scientists in controlled settings—and they are not microdoses. The results of this research have been nothing short of remarkable.

Laura Archera Huxley, 40-year-old musician and filmmaker, and husband Aldous Huxley, 61-year-old British novelist, pictured at their Hollywood home in Hollywood in 1956. On his deathbed seven years later, Huxley asked his wife for a massive dose of LSD.

Alleviating anxiety and despair

Terminal patients often suffer from feelings of intense anxiety and despair after receiving their diagnoses. For many, this is just too much to bear. The overall suicide risk for these patients is double or more compared to the general population, with suicide typically occurring in the first year after diagnosis.

Terminal patients have twice the suicide risk of the general public. Psychedelics may help reduce their fear and suffering.

That’s where psychedelic therapy may help. After a single large dose of psilocybin, taken in a curated space and supervised by a pair of doctors, many patients report feeling reborn. It’s not that the underlying physical disease has been cured. Rather, the drug prompts a shift in the theme of their emotional self-narrative—from anxiety and despair to acceptance and gratitude.

It may seem curious to think about psychedelic drugs, often associated with hippies and the Grateful Dead, as clinical-grade tools for overcoming our primordial aversion to death. But maybe it shouldn’t be. Maybe this is only surprising if your window of historical perspective is too narrow. Maybe these “novel findings” are, in a sense, a return to somewhere we’ve been before.

Psychedelics at the dawn of civilization

In late 2020 I spoke to Brian Muraresku, author of The Immortality Key: The Secret History of the Religion With No Name, about the use of psychoactive plant medicine throughout antiquity. Our podcast conversation covers this history in more detail, but it’s clear that humanity’s relationship with psychoactive plants extends back at least to ancient Greece—if not further. It’s hard to look at prehistoric cave paintings like the Tassili mushroom figure and not wonder if psychedelics played a part in their creation.

Western philosophy may have developed with help from psychedelics as well. In Plato’s well-known allegory of the cave, a group of prisoners live chained to a cave wall, seeing nothing but the shadows of objects projected onto it by fire. The shadows are their reality; they know nothing outside of it. Philosophers, Plato states, are like prisoners freed from the cave. They know the shadows are mere reflections, and they aim to understand deeper levels of reality.

Plato’s philosophical ideas might have been influenced by psychedelic experiences.

Was Plato tripping?

If that sounds like someone who’s explored those deeper levels with psychedelic assistance…well, maybe it was. In his book, Brian Muraresku explores the significance of the Eleusinian Mysteries, secret ceremonies that involved death and rebirth. For centuries, philosophers and mystics traveled to the Greek town of Eleusis to partake in a ritual that involved an elixir known as pharmakon athanasias, “the drug of immortality.”

“Within the toolkit of the archaic techniques of ecstasy–plant medicine just being one among many–something you find again and again, in Ancient Greece and other traditional societies, is this sense that to ‘die’ in this lifetime, or achieve a sense of timelessness in the here and now, is the real trick.” -Brian Muraresku

Contemporary archaeologists, digging outside Eleusis, have unearthed ancient chalices containing a residue of beer and Ergotized grain. Ergot is a fungus that grows on grain. It produces alkaloids similar to LSD. It’s possible, then, that influential thinkers like Plato were inspired by genuine psychedelic experiences.

This connection between psychedelics and death didn’t end with Eleusis. It survived, often repressed and hidden from view, right through the time of Aldous Huxley.

The connection re-emerges in the 1960s

In the 1960s, Timothy Leary co-wrote a book called The Psychedelic Experience: A manual based on the Tibetan Book of the Dead. Leary, the exiled Harvard professor and psychedelic guru, dedicated the book, “with profound admiration and gratitude,” to Aldous Huxley. It opens with a passage from The Doors of Perception, Huxley’s essay on the psychedelic experience. Huxley is asked if he can fix his attention on what the Tibetan Book of the Dead calls the Clear Light. He answers yes, “but only if there were somebody there to tell me about the Clear Light.”

It couldn’t be done alone. That’s the point of the Tibetan ritual, he says: You need “somebody sitting there all the time telling you what’s what.”

Huxley was describing a trip sitter, someone who guides a person along their psychedelic journey. Sometimes it’s an ayauasquero in the heart of the Amazon. Sometimes it’s a doctor holding your hand in a hospital.

Timothy Leary, shown at home in California in 1979, was deeply influenced by Huxley’s work.

Seeking rebirth within the mind

In his book, Leary grounded Eastern spiritual concepts in the understanding of neurology we had at the time. The states of consciousness achieved by meditation masters and those induced by three hits of Orange Sunshine, he wrote, may actually be the same. Both involve dissolving the ego (“death”) and allowing it to recrystallize as the default mode of consciousness returns (“rebirth”). 

Leary wasn’t talking about magic. Scientists know these as “non-ordinary brain states,” inducible by rigorous attentional practice (meditation), pharmacological intervention (psychedelics), and organic decay (dying).

The ability of psychedelics to induce these remarkable brain states may also be why they’re showing such promise in alleviating the very ordinary fear of death.

Today’s psychedelic treatments: Coping with death

So what, exactly, has recent research on psilocybin as an end-of-life anxiety treatment involved?

A few small studies have seen psilocybin administered to dozens of cancer patients. They’ve been conducted in a randomized, double-blind, placebo-controlled fashion. In general, a large majority of patients showed sustained, clinically significant reductions in measures of psychosocial stress and increased levels of overall well-being.

For example, in one study, 80% of the patients found that a single dose of psilocybin quickly relieved their distress. Remarkably, in some patients that positive effect lasted for more than six months.

Sprouting new physical connections

What’s going on at the neuronal level to produce those changes? We don’t know for sure, but some preclinical research has given us a hint. Both psilocybin and LSD have been shown to induce rapid and lasting antidepressant effects in lab animals.

Early studies hint at how psychedelics may produce positive changes in the brain.

Early indications are that psychedelics may allow brain circuits to rapidly sprout new physical connections. This is exciting, but again: These are non-human studies, and it’s early.

It’s gratifying to see any of these studies happening, frankly. This is research that’s been stalled by the Schedule I status of psychedelics for half a century. Much of this work requires obtaining a special federal waiver to study banned substances, which slows progress.

Potential help for end-of-life patients

Fortunately, the FDA recently designated psilocybin therapy as a “breakthrough therapy” and the DEA has proposed increasing the supply of psilocybin for research. This should speed up the rate at which we understand the clinical efficacy of psilocybin and related psychedelics.

Here’s more good news: In terms of psilocybin’s efficacy as a treatment for end-of-life anxiety, larger human trials are already underway.

Dr. Stephen Ross, one of the field’s leading researchers, has described the significance of this work: “If larger clinical trials prove successful, then we could ultimately have available a safe, effective, and inexpensive medication—dispensed under strict control—to alleviate the distress that increases suicide rates among cancer patients.”

Huxley: Ahead of his time

In one sense, Aldous Huxley was ahead of his time. More than a half-century before today’s renaissance in psychedelic research, his own experiences had evidently brought him to the conclusion that the best way to experience death was in a psychedelic trance.

In another sense, though, Huxley was one in a long line of creators stretching back to ancient Greek philosophers and perhaps even to prehistoric cave artists. They may all have used psychedelics to catalyze their outward creativity and comfort their inner distress.

Huxley titled his famous introspective essay, The Doors of Perception, after a quote from the English poet, William Blake: “If the doors of perception were cleansed everything would appear to [us] as it is, infinite.”

We will never know what he experienced in the final hours before his death, after handing that note to his wife. I like to think that for him, the last breath seemed to last forever.

Complete Article HERE!

A woman on TikTok wasn’t afraid to show her death.

In the process, she helped others live.

By Alia E. Dastagir

In a TikTok video on August 25th, Kassidy Pierson, who had been using the platform to document her life with terminal cancer, told followers she was hopeful it would be a good day. She spent the previous one nauseous, sweating and lethargic. But she was better on this day, and remarked how lovely the weather felt, and how she wished others could feel it, too. She told her followers she wouldn’t be posting every day. That wasn’t realistic anymore, she said.

The video was Pierson’s last. On September 9th, Pierson’s older sister Kasey Metzger posted from her account telling her more than 200,000 followers that the 27-year-old had died.

“I can’t tell you the amount of times that she would just break down crying because she couldn’t believe how many people just loved her from this platform,” Metzger said. “Thank you so much for all that you’ve done for her.”

Pierson, who was diagnosed with melanoma six years ago, used her popularity to raise awareness about skin cancer, but her earnestness, quirkiness and vulnerability made her account more than advocacy. Pierson, whose username was @ohhkayypee, offered a window into what it looks like to die – the grief and regret, the insistence that life isn’t over until it is.

She posted intimate videos – of the tumors protruding from her small frame, on her decision to enter hospice, on how she talked to her son Hunter, 8, about the inevitability ahead. In the process, she developed a captive community that watched with curiosity and awe as she lived the final days of her life.

“We need to know our life matters and we want our life, our death and our grief witnessed,” said David Kessler, grief expert and author of “Finding Meaning: The Sixth Stage of Grief.” “Our worst fear is dying alone. We always wanted someone at our bedside – to know someone will be there. … What’s new is the Internet.”

People want to be seen – in life and in death. The short-form video app TikTok offers users an unexpectedly intimate space to navigate and narrate experiences with terminal illness, which grief experts say offers myriad benefits to people on both sides of the screen. The hashtag #terminalillness has nearly 40 million views on the app.

The person posting acquires social connection, which science shows may allow them to live longer. And the audience is encouraged to confront existential fears, to develop empathy, and even to reflect on how best to live – in the face of imminent death and especially absent it.

‘We don’t really address death very directly’

People grapple with death’s unknowns in a number of ways, made all the more difficult by Western cultures that sanitize death or hide it, said Pamela Rutledge, an expert on the psychological and social impact of media and technology. The invisibility of death exacerbates fear.

A century ago, Kessler said, death was visible. Grandchildren watched their grandparents die at home. When he was a boy, Kessler remembers being on his way to school and seeing hearses on the street.

“Now the dead move around our cities in white unmarked vans,” he said. “If you want to see death now, you’ve got to see it in a movie or online or on a TV show.”

Like Pierson, many TikTok accounts are offering a raw look at dying, the way its nearness clarifies the preciousness of life. Many encourage followers to take care of their health. Some accounts are intimate, others more humorous.

User @solelenaq& ;shared her perspective on appreciating each day: “If I don’t make it I just want to say, ‘live your life.'” User @kora_the_herbivora shared a video of how overwhelmed she became by something that before her cancer diagnosis may have gone unmarked – the sensation of warm sun on her skin. User @pheovsfabulous posted a video about how she spent her life’s savings when she was given a year to live, only to outlive the prognosis.

Pierson’s mother, TK Dunn, said she’s glad her daughter uncloaked her own experience with death, especially how ambigious it can be. Pierson never really knew how much time she had left.

“There was this roller coaster of, ‘Am I going to die now? What does that mean? Who do I turn to?'” Dunn said. “Our culture doesn’t normalize conversations about death. Death happens. We act like it doesn’t. If we can start demystifying it, maybe these events wouldn’t be so jarring or traumatic.”

‘One of the biggest ways people matter is through personal connection’

The Internet may be making death visible again, but it also offers something to the dying – the ability to connect. To matter widely.

“One of the biggest ways people matter is through personal connection,” Rutledge said.

Research shows people with strong social connections may live longer, healthier lives. Conversely, people who are isolated face a 50% greater risk of early death.

“The ability to connect with people – to have that level of feedback and that level of support can be very positive emotionally,” Rutledge said.

The desire for connection goes both ways. Pierson’s audience was likely captivated because they craved connection, too, Rutledge said. And Pierson gave them that – often telling followers how grateful she was for their support, how much they meant to her.

“If the person who’s going through this, the person who’s dying, is thanking you for your attention and your participation in their journey, then you’re establishing … a parasocial connection in the sense that these people don’t know each other but become emotionally invested, just like you would with any narrative.”

These narratives also offer people fearful of death an alternative to the most terrifying story they tell themselves about how they would cope. Everyone makes up stories, consciously or not, about what they might do when death is close.

“You wonder how you would deal with your erasure,” Rutledge said.

‘It psychologically feels like it prepares us’

Kessler said he believes every fear we have connects back to a fear of death. But that fear isn’t productive. Fear doesn’t stop death, he said. It stops life.

Accounts documenting terminal illness allow people to confront their fears. To go to the edge in a safe, observing way.

“It psychologically feels like it prepares us, or it lets us know when our worst fear happens, we might be OK, too,” he said.

In the final weeks of Pierson’s life, she had family time, wrote in journals to her son, did a ride-along with the police department and sat in a private jet. She reminded her followers not to “be stupid” and to get their skin checked. She cheered on thwho heeded her advice.

“I would like to take you guys as far as I can on this journey with me. I’d like you guys to all see it and experience it and learn,” she said in a video on August 11th. “You’re not alone. … We’re doing this together.”

Complete Article HERE!

This woman guides dying Mainers through the end of their lives

Molly “Bones” Nelson, a certified end-of-life doula, stands at her pumpkin farm in Cornish. Nelson is a death doula credentialed by the International End of Life Doula Association, and the subject of a new documentary screening as part of the Camden International Film Festival.

by Nick Schroeder

There once was a man who lived on a hill in rural Maine. He was 97, and had no living family and few friends. He had neighbors, but most of them were half his age or younger, and the man could sense that they viewed him with reserve. This bothered him, so he hired someone to help him figure out the problem.

“He said, ‘The neighbors don’t understand me,’” said Molly “Bones” Nelson, who offered her services to the man during his final days. “‘I’ve been here for 50 years and they fish on my land but they still think I’m the crazy old guy they can’t talk to.’”

Her solution? Throw a party.

“He kept telling me, ‘I’m not dying; I’m graduating,’” Nelson said.

Nelson is a death doula. She helps people with the emotional and psychological work of confronting the terminal stage of life, whatever that entails. Often, her work looks like talk therapy, working through death’s thorny questions with those facing them. She also works with clients who have lost someone suddenly, such as in a miscarriage or abortion. In this case, it meant helping a man find a kind of happiness at the end of his life.

To prepare for the party, the man and Nelson baked cupcakes that looked like skulls, crafted a tasseled cap for him to wear, and painted a mural of scenes from his life. They had partygoers write questions they had about death — even unanswerable ones — and throw them in a bowl. Then they played a game: pick a stranger at the party and take turns answering questions from the bowl.

“We played that game for three and a half hours,” Nelson said. “People didn’t want to stop.”

Nelson is the subject of a locally screening documentary, “death and her compass” by the California-based filmmaker Annie Munger. The film is part of the Camden International Film Festival, which runs virtually through Sept. 26.

While they aren’t considered medical professionals, death doulas perform a work that has existed around the world for centuries. In present-day America, the kind of end-of-life care work they provide is something of a lost art.

“Our elders get put off to the side,” Nelson said. “Older people have a ton of wisdom and experiences to share about their lives.”

The cost of in-home elder care has skyrocketed in the U.S. even before nursing homes began facing staffing shortages and enhanced risk of infection with the coronavirus. The trend leaves little time and resources for talking through the end of life.

But it’s often no easier at home. The vast majority of older people — 88 percent — prefer to receive government assistance to age at home rather than receive care in a full-time nursing home or senior living facility, according to a study by the Associated Press-NORC Center for Public Affairs Research published in May. That can push the expensive and time-consuming work of caring for elderly people onto families, who struggle to absorb the often-invisible costs of managing a family member’s physical and mental health, memory loss, food and other needs while juggling their personal and professional lives.

“Death is a huge part of life,” she said. “You’ve had all this amazing growth, adventure and experience. If you don’t process it and have those difficult conversations, it’s like skipping dessert.”

Nelson likes to let her clients lead the process. In the initial phase, they hang out, talking through fears and memories, anything of significance. The dying person supplies their own spiritual beliefs, and she works with what they give her. Big religious and existential questions inevitably come up, but Nelson mostly works with relationships on the mortal plane. (Nelson keeps information from clients confidential, but others, like the 97-year-old, allow her to discuss their cases in general terms after their passing.)

Then, Nelson works with them to design a “legacy project,” something they can leave behind to friends and family, or to the world, that doesn’t neatly fit in a legal will. It might be a party or it might be a quilt, a donated plot of land or a long poem she writes with the dying person’s help and reads to them when fear rides high.

Nelson learned the trade with the International End of Life Doula Association, a training organization founded by New York hospice worker Henry Fersko-Weiss in 2003. Fersko-Weiss was a social work manager at the largest hospice in New York City, accepting roughly 500 patients a day. While he saw them receive adequate medical care, the sheer volume of patients needing hospice care meant that some needs were going unattended.

“I kept seeing these gaps,” Fersko-Weiss said. “As dedicated as the clinicians are, unfortunately the structure and logistics of hospice made it difficult for clinicians to spend a great deal of time and do deep work with people who are facing death.”

Something clicked when Fersko-Weiss talked with a friend who was becoming a birth doula. He trained to become one too, eventually modeling an end-of-life doula program from its teachings about helping expecting parents usher babies into the world. He could train volunteers to be present for dying people in a way similar to those learning to be birth doulas.

Nelson is the only one in the state formally credentialed through international association, which offers a rigorous certification process. There are roughly a dozen working death doulas in Maine who have trained through the association or the End of Life Doula Alliance, which was founded in 2017.

Nelson, 57, took a long road to this line of work. The nickname “Bones” is unrelated to her profession — a scrawny child, she’s had it since youth — but many clients find as much humor in it as she does. She moved to rural Maine from New Jersey at age 18 and has been farming ever since. Today, she primarily grows pumpkins.

Death has been a part of Nelson’s life since birth. She was born with a heart condition, a thin-walled aorta that’s “shaped like an hourglass.” Doctors have told her that it “could explode at any moment.” In 2007, she had a stent put in her heart, and it tore through two layers of her aorta. But she survived and continues to farm, hike and ride dirt bikes.

She’s also lost those close to her. Nelson’s mother died by suicide at the age of 82, after multiple attempts during her life, and her father died of cancer in 2013.

“I’ve had a lot of healing to do,” Nelson said.

Nelson takes death seriously, but doesn’t necessarily see it as a grave subject. It’s easy to imagine her combination of folksy wisdom and well-timed humor softening some thick layers of fear. As shown in “death and her compass,” Nelson’s sessions with clients seem much less like a psychological evaluation or transcendental ritual than two old friends just talking.

Nelson said that she “doesn’t believe in death” after a life spent outrunning its shadow.

“I got a T-shirt that has a picture of a sloth on it. It says: ‘Live Slow, Die Whenever,’” she said with a laugh.

The sentiment captured the way Nelson has come to think about the subject.

“I don’t feel rushed because I don’t feel like there’s an end,” she said. “If I don’t get to ride my dirt bike across Mongolia by the time I’m 60, so what. I’ll just do it next time.”

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A Physician in the Patient’s Chair

Susan D. Block, who has taught and researched doctor-patient communication and severe illness for decades, found herself on the other side of that relationship in the fall of 2018, which would transform her work, teaching, and practice.

By Tamar Sarig

In the fall of 2018, three weeks into Susan D. Block’s first semester teaching a freshman seminar on death and illness — “The Heart of Medicine: Patients and Physicians and the Experience of Serious Illness” — she learned that she had a mass on her pancreas. In the worst way possible, her field of work and personal life had collided.

As the founding chair of the Dana-Farber Cancer Institute’s Department of Psychosocial Oncology and Palliative Care, Block, a psychiatrist, had spent almost 40 years treating patients with serious illnesses like cancer, trying to figure out how to make their last months more meaningful and less frightening. Now she found herself in the patient’s chair.

Block had been undergoing routine tests for pancreatic cancer as part of a research study for over a decade, due to a strong family history of the disease. Luckily, her preliminary screenings caught what seemed to be cancer at a relatively early stage. “People were looking for it and then they finally found it,” she says. “It was terrifying.”

That terror lasted for about three weeks, as Block prepared for a surgery to remove most of her pancreas. When she finally went into surgery, however, her doctors discovered that, against all odds, she had been misdiagnosed. The mass was the result of an autoimmune disease.

“People had told me that there’s a 95 percent chance that it’s cancer. I wish to be in the 5 percent, but I don’t ever assume that I am,” she says. “It was wonderful, amazing, incredible good news.”

Even after recovering, Block’s brush with cancer would touch all aspects of her life — her attitude toward work, her presence in the classroom, and her conversations with her own patients.

Block’s lifelong interest in the social and emotional aspects of serious disease began during her internal medicine residency program at Beth Israel Hospital in Boston, where she found herself gripped by “how poorly we cared for people who were at the end of their lives.” Drawn to understand her patients’ psychological experiences, she ended up completing a residency in psychiatry as well.

At the time, Block says, “there was no field of palliative care, and there was barely a field of psycho-oncology” — the study of the social and psychological dimensions of cancer. “There was sort of no way to go forward.”

If Block couldn’t follow traditional paths to change the way medical institutions supported critically ill patients, she was determined to forge a path herself. In 1998, she started a new job at Dana-Farber with a substantial mission: to build a psycho-oncology and palliative care program from scratch.

By the time Block landed in the operating room herself, she was a leader in her field. But even after 40 years of teaching about severe illness care and doctor-patient communication, when she found herself on the opposite side of that relationship, Block discovered that some things could still surprise her.

“The one really bad part of my care was being in the hospital after the surgery,” she remembers. Struggling to recover from the operation, Block shared a two-bed hospital room with another woman. “I had to crawl over her to get into the bathroom,” she says. “It was so cramped, and so small.”

At night, after her crowd of visitors had left, the woman began sobbing, and Block’s instincts as a physician kicked in.

“There I was, half doped-up still from the anesthetic, I was trying to comfort her,” Block says. “How can you not respond to somebody who’s that vulnerable?”

In that hospital room, she also saw another, uglier side of the health care system up close. “[The woman] felt like the nurses weren’t taking good care of her because she was Black,” Block says. “Because [nurses] put on their best behavior when the doctor comes in the room. I’d never seen that kind of dismissive, seemingly racially-driven behavior, as I saw from nurses.”

Back home from the hospital, readjusting to normal life after the surgery brought its own set of challenges.

“​​I had a pretty hard recovery,” Block says. “And I thought a lot about how much stress was safe to put my body under.” This was especially challenging after decades of juggling a fast-paced career of clinical work, field-building, teaching, heading departments, and research.

Three years before, she had been by her husband Andy’s side through his own struggle with and, ultimately, death from an aggressive lymphoma. The pain of that experience instilled in her a philosophy of “do it now,” and in the wake of her own treatment, she’s focused on putting it into practice.

She built her own house in western Massachusetts — something she’d always wanted to do. She gave herself permission to cut back on the parts of her career that drained her energy, and focus on teaching and seeing patients instead. When she met a new partner, she allowed herself to find love again.

“I’ve been really lucky in terms of my material circumstances, and I have just wonderful people in my life,” she says. And, of course, she feels lucky to be back in the classroom, teaching undergraduates.

Leaving her seminar three years ago was bittersweet — she didn’t want to stop teaching, but she knew her experience with illness would be an arduous one.

“I felt this obligation to the students,” she says, “but it was really clear that I couldn’t teach a class on serious illness, death, and dying, while I was in the middle of this very terrifying personal experience.”

Her class focuses on encouraging difficult discussions about health; she often brings in speakers ranging from doctors to chaplains to seriously ill patients. At the beginning of the semester, she asks students to fill out a survey about their own attitudes toward death, and for freshman family weekend, she asks them to interview a family member about their goals for end-of-life care.

“I love the idea of trying to teach about this very difficult topic to younger people who hadn’t had the kind of indoctrination or socialization into either the pre-med world or the medical culture,” Block says.

At the end of fall 2018, she returned to the seminar class she had to leave behind when she began her treatment and told them her story.

“They didn’t really know me that well, but it was still sort of a traumatizing, discombobulating, upsetting experience for the students,” she says. She believed sharing her story would serve as a valuable learning opportunity. “I don’t like the word closure that much, but it brought things full circle in a way.”

This semester, Block is teaching “The Heart of Medicine” for the third time. The seminar looks different today than it did in the fall of 2018, but not necessarily because of her own harrowing diagnosis. She’s modified the course to incorporate a discussion of Covid-19, and to focus more on health inequities. She says she doesn’t go out of her way to bring up her story, although she does touch on it when the class opens up about personal experiences with death.

“I want them to name their experiences. So I can’t just stand behind a sort of wall of neutrality and pretend I don’t have relevant experiences,” Block says. “That would not feel right, as a teacher.”

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