What the death rattle and capital punishment have in common

By Joel B. Zivot and Ira Bedzow

Death rattle. That’s the sound some dying people make, caused by a buildup of mucus and other secretions in the throat as the body begins to slowly lose its life force. It can sound wet and crackling, or like a soft moan or snoring or gargling.

No one knows if a dying person finds the death rattle disturbing or distressing, as no one can pretend to know with certainty the inner subjective experience of anyone too ill to express it. The common medical assumption, though, is that they are not distressed by it. But the death rattle is disturbing to family members and loved ones who are with their loved ones as they are dying. They typically interpret the sounds as indicative of pain and the absence of a “good death.”

A team of researchers in the Netherlands conducted what they call the SILENCE clinical trial to see if an injection of scopolamine butylbromide, an antispasmodic drug, could stop, or at least reduce, the death rattle. It did.

In an accompanying editorial, two U.S. physicians make the case that administering a drug to reduce the death rattle is justified, even when one cannot know the inner experience of a dying patient. They claim that “when in doubt regarding comfort, it is best to try treatment.” They also write that it can relieve the distress not of the patient but of those bearing witness to the death.

The first reason reveals a technological imperative that is permeating health care delivery. The technological imperative says, “If it’s possible, it should be done.” While moral philosophers since Immanuel Kant have held that “ought implies can” — meaning that having a moral duty entails that one is able to fulfill it — the premise doesn’t work both ways. Shooting first (in this case a subcutaneous injection of scopolamine butylbromide) and asking questions later is not the best approach. Of course, it may become best practice to reduce the death rattle, but the medical profession should at least consider why before deeming it so.

The second reason — to alleviate the discomfort of those bearing witness — speaks to the current debate over the legality and morality of capital punishment, especially now when the Biden administration wants to reinstate the death penalty for Boston Marathon bomber Dzhokhar Tsarnaev, even though earlier this year the U.S. attorney general ordered a moratorium on federal executions.

Death by execution and death in the setting of end-of-life care have something in common. Both involve the presence and witness of interested parties. And what is witnessed — rather than what is occurring to the dying individual — matters a great deal.

The law stipulates that punishment cannot be cruel and unusual. The experience of execution also confronts society’s aversion to see itself as inhumane. But the absence of cruelty does not create humaneness. Punishment must not be tortuous or deliberately degrading and should not exceed the severity of the crime committed.

The Biden administration may see execution fitting for the crime of the Boston Marathon bombing. That decision will rest with the court. Whether or not execution on its face is inhumane, it is certainly extreme and should be used judiciously — not politically.

The idea that execution may be a form of torture is one of the primary reasons for its medicalization. The American Society of Anesthesiologists strongly discourages anesthesiologists from participating in executions, and says that legal execution “should not necessitate participation by an anesthesiologist or any other physician.”

Execution wrongly impersonates a medical act and the impersonation is so convincing that even doctors and the public are fooled. In the United States, no method of execution has ever been set aside as unconstitutional, though methods of execution have come and gone — think hanging, firing squad, and electric chair (though this last one may be coming back) — based on public perception of the outward appearance of death by execution.

Administering paralytics and other drugs may make lethal injection look more humane, even peaceful. Yet autopsies performed on individuals executed by lethal injection have shown that they suffered from pulmonary edema — their lungs were drenched with body fluids. In a self-aware person, such lung congestion would be akin to death by drowning.

Society’s opinion about what it finds to be cruel continues to evolve. But it should primarily take into account the sufferer, not those who are watching.

At the bedside of someone who is dying, families and friends are increasingly welcomed to be present, to accompany a loved one in their last moments. This is a good thing, as it returns death and dying to the realm of the home and community so people do not have to die alone. It also helps drive home that death is part of life and not something to hide away or ignore.

The danger that the SILENCE trial presents is the risk that hospitals will curate the dying experience for the sake of loved ones, just as lethal injection curates a medicalized execution for the sake of the witnesses.

If the death rattle is not painful, instead of muting it — and instead of simply paralyzing the executed — it may be better to recognize the bright line that separates the living from the dead. Mollification of observers’ experiences in both instances may anesthetize feelings regarding natural death or killing. It may also lower the bar for what constitutes facilitating death or moral killing.

As a society, we must be sure to uphold our collective humanity and alleviate suffering. But we should be focused on the suffering of the dying and not those who are watching.

Complete Article HERE!

Hospice staff help dying animal lover see her dogs and horse for one last time

Jan Holman, 68, had been away from her beloved pet dogs and horse for six weeks and was missing them all until she received a special visit – facilitated by her hospice

Jan was happy to be reunited with her dogs Monty and Rowley

By Millie Reeves

A terminally ill woman has had the chance to say goodbye to her two dogs and horse thanks to hospice staff.

Jan Holman, 68, was admitted to hospital six weeks ago and is now a patient at the Hospice of the Good Shepherd in Chester.

Her quick referral to the hospice meant she hadn’t had a chance to say goodbye to her dogs, Monty and Rowley, or Bob, her horse of 10 years.

Due to the pandemic Jan was unable to have any visitors at the hospital, and her husband of 46 years, Dennis, said she found having no visitors or personal contact difficult.

After four weeks, Jan was moved to the hospice to receive end-of-life care.

Knowing Jan was also missing her animals, the hospice arranged for a visit from her two Cavalier King Charles Spaniels, Monty and Rowley, as well as her horse, Bob.

Even though she was unable to get out of bed, Jan was excited to have the chance to see the gang one more time.

Dennis said: “It was just such a relief once Jan was moved from the hospital to the hospice in Chester and we were able to have named visitors who could come and see Jan regularly, however we never imagined that we would be able to include Monty, Rowley and Bob on the visiting list.”

Staff brought in Jan's two Cavalier King Charles Spaniels Monty and Rowley
Staff brought in Jan’s two Cavalier King Charles Spaniels Monty and Rowley

He continued: “All the staff here have been wonderful. Jan has been so well cared for, nothing is too much trouble even down to the chef coming every day to see what he can tempt Jan to eat.

“Nothing is too much trouble, including arranging for a horse to visit!”

Before her illness Jan, who has lived in Chester all of her life, could be seen dressed as Chester’s Tudor Lady delivering tours of the city where she has been a Blue Badge Tour Guide for 37 years.

Jan said: “I just can’t believe what the staff here at the hospice have done for me. Until a few weeks ago I was still riding Bob every day and he is such an important part of my life, and I have missed him so much.

“I knew that arranging for my dogs to visit was possible as we had a neighbour who was a patient at the hospice a few years ago and we were allowed to bring the dogs to visit her, but I just didn’t expect that they would ever be able to give me the chance to see Bob one more time.”

Horse Bob came to visit through the patio door
Horse Bob came to visit through the patio door

Louise Saville King, deputy ward manager at the hospice, said: “It was obvious when Jan first came to us that she is passionate about her animals and that horses have played a large part in her life for many years.

“The ethos of hospice care is not just about caring for the clinical needs of our patients but also looking after their emotional and spiritual needs as well.

“It’s about making a difference to our patients and their families in whatever way we can.

“We know that sometimes people are scared at the thought of coming to the hospice, but it’s a positive place where people are supported and well cared for.

“The work of the hospice really does make a difference to people’s lives.“

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.”

Complete Article HERE!

Everything Dies

It’s the Buddha’s basic teaching. It’s life’s universal truth. It’s what we most want to deny. Sallie Jiko Tisdale on how this hard but liberating truth can transform your life.

Death and Life” by Gustav Klimt.

by

Most Buddhists put flowers on the altar. We know flowers are beautiful, but that isn’t their purpose here. Flowers begin to die as soon we cut them; we carefully lay death in the place that symbolizes our awakening. We bow and make offering to this crucial truth, built into the bones of the world.

The Buddha spoke volumes of words, an immense canon, but most of what he said comes down to this: Things change. Change cannot be avoided. Change hurts. The fundamental teaching of all Buddhism can be stated as everything dies. The Buddha taught this, it fills the sutras, it is repeated by our teachers. But most of all, we learn this from our own daily lives.

Do we believe that we will dissolve? No. Not deep down in the root of the small self, because the small self plans to live forever.

You have probably learned a traditional formula or two for this insistent teaching about the transitory nature of all things:

Anicca vata sankhara: “Impermanent, alas, are all formations!”

Sabbe saokhara anicca: “All conditioned factors of existence are transitory.”

In the Maha Satipatthana Sutta: “[One] abides observing the phenomenon of arising…abides observing the phenomenon of passing away…”

As a new practitioner, I learned the catechism this way: “All compounded things are subject to dissolution.” The language was strange when I first heard it, and as a young practitioner I found myself parsing the words: Compounded. Dissolution. Notice, I was told, how everything is put together from other things and will be taken apart. I began to notice. A table, a house, a nation—I could see this.

But if all things are compounded and will dissolve, then I am compounded and I will dissolve. And this was not something I could easily accept.

I pretend to accept my own death. Most senior practitioners do; many of them may even believe they accept it. Buddhists have their own peculiar points of pride, outside the usual stream of things we pride ourselves on, like humility and asceticism. Plenty of us are proud of our equanimity in the face of extinction, at least until we see the headlights bearing down.

So how deep does this acceptance really go? It’s not just Buddhists who kid themselves about being prepared for death. It’s people. It’s all of us who don’t want to admit that we are organisms fighting for life, that we can sagely repeat, “Annica, annica, all compounded things are subject to dissolution,” without really confronting what it means.

Do we believe that we will dissolve? No. Not deep down in the root of the small self, because the small self plans to live forever. When we say that “Everything dies,” we mean everything dies but me. And we can get kind of fancy about this point: Everything dies, including my body (but not my awareness—not me). Everything is subject to dissolution, but something passes through to a new form and doesn’t ever go away (that’s me). In a thousand ways, most of them not entirely conscious, we hold on to the hope that something of this self, somehow, will remain, and we hold on to that even as everything we touch slides away like sand in running water.

Why should we pretend to more confidence than we feel? Everyone is a beginner when it comes to death. We can’t practice it. When my mother died, it was the very first time that my mother died, and I didn’t know how to do that, to be a daughter whose mother was dying, to be a daughter whose mother had ceased to exist. When my best friend died—when my teacher died—I didn’t know how to do it. Each death I’ve known has been the very first one of its kind. Even with experience—I know how grieving feels, I know the altered state of a vigil, I know a lot about that—I can’t entirely prepare. And when I die, it will be the first time this particular me dies, and I will be a beginner.

Yes, I know that we are all dying all the time. That’s what it means to be a compounded thing dissolving—this self, this moment, gives way to the next as the girl gives way to the woman who gives way to the crone. I know that the me of today is not the me of yesterday, and I was also taught that if you die once, you never need to die again. But the real teaching of that formula, the falling away of body and mind for a ceaseless moment, is that you are already dead. I know this, but I don’t think my body does.

Slay the demons of hope and fear. My teacher would say this to me at a time when I was knocking up against deepening anxiety. My stubborn refusal to submit to the meaning of that anxiety made me more anxious still. The stronger I resisted, the deeper my anxiety became, until I sank well into true fear. How could I slay that demon when I was afraid to walk out the door?

We need to talk about death bluntly, honestly, and often.

“Vanitas Life, Death, and Resurrection by Ezio Gutzemberg.

The original Pali word for aversion, dosa, is various and shaded. It can be translated as anger or hatred, denial, projection, distortion, aggression, repulsion, even disgust. That is how it can feel to talk about death, about our own death. But I want you to think about it and I want you to talk about it. Even if you have considered your own death deeply, how often do you talk about it? Do you talk about your private conflicts or confusion, your questions, your plans?

How do we begin? Begin with the fear. Begin with the resistance. We know the question. It is why we begin to practice in the first place: Why do we suffer? And we know the answer. It is why we keep practicing: We suffer because of change and resistance to change.

But knowing the answer does not stop the question from being asked, and knowing an answer today doesn’t mean we will remember the answer tomorrow. Ignorance is the first link in the twelve-fold chain of causation—ignorance of impermanence, of anicca, of anatta, of no-self. This chain feeds itself endlessly—our ignorance of the ephemeral nature of the self building a self over and over. The chain is broken only by the transformation of that first mistake, being ignorant about the compounded nature of the self, which is not separate or bounded at all.

What do you fear about death? Make a list. Be honest. Autopsy? Being alone? Pain? Loss of privacy? Do you fear soiling your bed? Do you fear needles? For what do you hope? Make a list. Be honest. Do you want to see it coming? Do you want to be asleep? Do you want to be very old?

Ask the question again. Why am I afraid? Because I will die. What does that mean? (Wait a minute. Will I die? Do I have to die?) Ask yourself: Are you ready to die? Don’t answer too quickly, because that last one is a doozy. Even people who have made great strides in accepting the fact of their own inevitable dissolution will be flooded with adrenaline when the headlights bear down. The body has its own hopes.

Talk about death. Talk about everything. Imagine it. Write a description of the scene of your death. Where are you? What do you see? What do you smell, taste, touch? Who is there? Are you inside or outside? Is it warm or cool? Is there music, or words?

Imagine it. Write it down. Then tell everyone who needs to know—your family and friends and teacher and doctor—what you want. Make a record of your wishes and don’t forget to decide how your body should be handled after you’re done with it. Make copies and pass them out.

Then tear it up. Let it go with all your heart. This will be the work of the rest of your life.

We can do all this. We can make a plan, buy a plot, fill out the advance directive, decide what music we want to hear as we go. But we can’t plan not to die. The essence of dying is the loss of control. This is the hardest part for many of us—not that death will happen, but that it will happen without our hand on the controls. It will happen as it happens, when it happens, where it happens, and chances are it won’t go according to plan. The only thing we can control, and only with practice, is how we face whatever happens.

These days it is common to talk about a “good death.” (There are many official, even government-issued, definitions of a good death.) A good death is usually defined as one where a person is comfortable and at peace.

For myself, I want to think about a right death, a death that fits the life I’m trying to live. Most deaths include what anyone might call good moments and bad moments, desired and undesired consequences. So it is with our lives, and so it is with death. Right deaths are all different; you can’t define the details. For me, it means a death unhidden—from me and from those who love me. It means a death met with grace and willingness when the time comes. Achieving this will be the work of the rest of my life.

If we can face it, recognizing the reality of death will transform our lives.
Flowers are beautiful because they are brief. Beauty is a measure of fragility and brevity and transformation, created in part by our awareness of the precious value of this moment—this moment is what we love. Death is utterly natural, shared by all; it is also heartbreaking. That equation isn’t dissonant; it’s the nature of love. With our eyes open to change, each thing we meet is luminous and sparkling. To love means to lose. To lose means to love. The last breath allows us to cherish another without reservation, holding nothing back.

Slay the demons, my teacher told me. That meant accepting my anxiety, my fear. It meant coming to see that hope and fear are one thing: fantasies of the unborn future. Hope pulls and fear pushes and together they keep us stuck in what has not happened, living a half-life of imaginary events. I exhausted myself on that mountain, until I gave up. Giving up was the key. Accepting the demons of hope and fear until they slew me, which was what my teacher had been saying all along.

The parable of the burning house told in the Lotus Sutra is a familiar one. The children do not know the house is on fire, so they won’t leave until their father tempts them with carts full of treasure. So we are with our own suffering, our ignorance. The Buddha offers us treasures, including one so great we couldn’t even imagine it.

Some years ago, I had a brief, vivid dream. I saw a room completely engulfed in flames, and several people were walking calmly through the room, smiling. One turned and looked at me and said, “I can’t tell you how safe I feel in this house.”

When I begin to truly accept myself as this compounded thing—a dewdrop, a bubble, a cloud—when I really believe for a moment that my precious me is a passing sigh in the oceanic cosmos of change, then I begin to find safety inside the burning house. I don’t need to escape if I know how to live inside it. Not needing to escape, I no longer need rewards. I just walk through it, aware of dissolving.

Complete Article HERE!

What is a death doula?

How trained companions help people face their last days

Death doulas can arrange pre-funeral ceremonies with their clients, in a bid to relive happy memories and get some closure.

From organising living funerals to offering grief support, these specialists aim to create a ‘death-positive landscape’

By Lavina Dsouza

Arlena Marie from Arizona, Texas, decided to take a leap and ask in Side Hustle Nation, a Facebook group, how to become a “death doula” and market herself as one.

While some were aghast at hearing such a profession exists, others had their interest piqued because, morbid as it sounds, every person on the planet is a potential customer.

The word doula originates from the ancient Greek term doule and translates as a person who serves. Birth doulas are now common and, like midwives, provide services during the birthing journey. A death doula, on the other hand, offers emotional support to people who believe they’re nearing the end of their life and would like to make the days count.

Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape.
Avril Carr, death doula from Al Ain

While professional moirologists (also known as “crying ladies” in some cultures) have been around for centuries and are hired to wail at funerals, the pandemic has brought death doulas to the fore, as an alternative form of mourner.

Avril Carr is a death doula from Al Ain. She trained as a hypnobirthing teacher, breastfeeding supporter and paediatric sleep consultant, and realised that while a wealth of knowledge is available for the birthing process, the reality of death remains largely ignored.

“We’re suspicious of death, which is interesting because not everyone will give birth, and yet there are countless ways in which mothers and fathers are encouraged to prepare for birth. Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape,” Carr tells The National.

Having a calm presence to see people through difficult moments and celebrate any glimpses of beauty together is a much-needed trait for death doulas. Carr says the feeling of fulfilment when helping someone with death anxiety is an extremely rewarding experience.

“We care for clients in ways that are personally meaningful and affirming to them. Our focus is assisting people with planning, preparing and processing,” says Francesca Arnoldy, a death doula from Burlington in the US, who also developed the end-of-life doula training programme for The Robert Larner, MD College of Medicine at the University of Vermont.

The most heartbreaking thing is to hear someone say: ‘I wish I had known about you sooner’
Lala Langtry-White, doula

Unlike hospice nurses and other end-of-life support providers, death doulas are emotional companions first and foremost, and must be able to customise their services based on what a person is looking to do to help ease the process.

Planning could involve creating schedules to meet others, having conversations that help with the transition, organising a pre-funeral while the person is still alive and sorting through belongings. Some may even want to make a scrapbook or involve family members to help them through the grief.

The amount of grief and uncertainty the pandemic brought has made many – both the ill and the relatively healthy – want to discuss death and have all their affairs in order, be they practical or emotional.

While stay-at-home measures were enforced in many places across the world, death doulas, like most others, turned to technology and came up with creative ways to virtually bring families together during tough times, making people realise they needed tools and information to bolster their sense of readiness.

Jessica Mendivil, a death doula from California, developed free community calls and training for families to help them cope with the loss of loved ones and general lack of preparedness.

Carr realised that while she missed being physically present, she could still impart training virtually on setting the death space, which included different ways to record one’s legacy and sit vigil when death was near.

Small and Mighty Babies, run by Lala Langtry-White and Joanne Hanson-Halliwell in the UAE, set up and continues to offer an online Love Through Loss community, plus monthly support evenings and access to voluntary bereavement doula support and counselling with The LightHouse Arabia.

It’s a lucrative job, but professionals know it can be a vulnerable and intense journey. Death is still not an easy subject for most people and perhaps never will be, but Langtry-White says the most heartbreaking thing is to hear someone say: “I wish I had known about you sooner.”

Complete Article HERE!