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!

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!

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!

‘I Run a Death Cafe’

By Megan Mooney

I’ve been interested in death my entire life. I was going to be a mortician, and then I took a grief and loss class in college and switched degrees. I’m now a social worker. But I had always wanted to do something on a macro level to help my community around issues of death and dying.

In 2012, I was completing my social work practicum at a hospice and the team leader there wanted me to do some community involvement work. She told me she’d read an article about a “death cookie” group. I talked to my boss and she explained the correct name for the organization was Death Cafe and told me to get in touch with Lizzy Miles, who had started the cafes in the U.S. that year, after reading about them in the U.K.

It happened to be around the same time my uncle had died of cancer; he’d had a horrible death. So I really wanted to create a group where people could come and talk about death and educate each other. After I emailed Lizzy, she called me and we talked for hours.

She helped me get my first death cafe started in February 2013 at a coffee shop in town. The cafes were starting in LA, Atlanta and New York, but I’m in a small town called St. Joseph in Midwest Missouri, so there were none around my area at the time. At my first death cafe and for the five after, I had two women who would drive 7 hours each way to attend. That showed me how much people needed this safe place to talk about death and dying.

We have coffee and cake at each session and my first cake said “Missouri’s First Death Cafe” on it. I laugh about it now because I got so much cr*p for that cake. I went to a big grocery store and told the lady there that I wanted little headstones on the cake. She got mad and told me it was a family business. I had to explain to her what I actually needed the cake for.

But people still thought we were going there to “drink the Kool-Aid” and die. Before my first death cafe a local hairdresser said that an older woman had read a news article about it and was talking about how it was a morbid group getting together to do God knows what. A lot of people still think it’s a morbid group.

Every death cafe is different in terms of who attends and what the attendees talk about, but we all follow the same rules: It’s not a grief or counselling service, we are non-profit, the cafes are held in an accessible, respectful and confidential space and they have no intention of leading people to any conclusion, product or course of action. We also always offer drinks and nourishing cakes! Having food is very important. It is life sustaining and we believe it helps people to feel more open to talking about death.

There were about 20 people at my first death cafe and their ages ranged from 25 to 70. It’s for adults, so 18 and older but I’ll have people of all ages; the oldest attendee I’ve had was 85. But I’ve only ever had one person come who was terminally ill.

When I host, I have four or five people at each table and at the beginning I ask everyone to start with what brought them here to talk about death and dying. That seems to be the only thing I need to ask.

My dad and aunt came to my first death cafe. My father never talked about death and my aunt hadn’t been able to talk about my uncle’s recent death without crying, so I didn’t know how it would be. But as I was looking around, my dad was laughing with his group and my aunt was laughing with hers. I sat down and heard my aunt talking about my uncle’s death without crying for the first time.

The following week my dad called me and was talking about how you’re not supposed to make any big decisions within the first year of a loss. He then told me he’d learned that from the ladies at his table at the death cafe.

My dad came to every single death cafe I held after that, except one, and he planned his funeral and all his funeral songs. He died three years ago, but his death was easier for me because we’d had all these conversations about it. He talked all the time about how much the death cafe helped him face his own death.

Death cafes run all over the world
Megan Mooney has been running death cafes in St. Joseph, Missouri since 2013.

A theme that often comes up is relationships and death. People will talk about losses they have had and how it impacted them. Everybody has experienced a death in their life and most of them have never really talked about it. I had a lady who came in, she was probably in her late 50s and she was really shaky at the beginning. At the end she came and thanked me and said that she had never been able to talk about death with anybody before because in her family it was a “taboo”.

People also talk about what they want at the end of their life. There can be a superstition that talking about death brings it closer, so people avoid talking about it at all costs. But when you don’t plan for the end of your life it can be harmful to your loved ones, or add to their grief. My dad making plans helped me tremendously and it was cathartic for him too.

While there are sometimes tears, most death cafes are full of people laughing and having a good time. I believe that thinking and talking about death helps us to be our authentic selves. It helps us to take our mask off and not take things for granted. We’re often in such denial about death that we hurry through life and don’t appreciate the people in it. At these cafes, you get together with strangers and you’re talking about an intimate topic that most people can’t even talk about with their family. It brings you closer and helps improve your relationships with people.

At the end of each death cafe I ask attendees what their “Aha!” moment has been and I hand out surveys. One of the questions is: “Did your views on death change as a result of the death cafe?” It’s crazy because almost every time people answer something like: “My views on death didn’t change but my views on life have changed.”

When COVID first hit we decided the death cafes had to be online. But it ended up being a blessing in some ways because it meant we could meet with people in different countries all over the world at the same time. Now we’re back meeting in person, but we do have cafes online too.

Death cafes began in the U.K.
Megan Mooney first started running death cafes in 2013. She has now run 45 death cafes with hundreds of attendees.

I’ve run about 45 death cafes since 2013 and the smallest group I’ve ever had was still 10 people. I’ve also had companies ask me to host death cafes for their staff. I had one life insurance company with 1,500 staff and there was a woman there whose son had died by suicide. When I asked if anyone had any “aha!” moments, she stood up and shared how she felt about her colleagues’ reaction to her since she had returned to work.

Being involved with Death Café has taught me to love with my whole heart and that nothing in life is permanent. I’ve learned how to accept change, which can be hard. And, I’ve realized that relationships matter the most in life: my relationship with my daughter and spending time with her. That used to include my dad too, he was my best friend.

As a leader for Death Café, I have learned tremendous lessons from attendees and our followers on social media. I’ve learned that so many things in life are trivial. I don’t really get upset any more. Our views on death usually inform the way we live. When you start to come to terms with your own mortality, it can push you to really live your life and to be the best version of yourself. If you look at life from the vantage point of death you can see how beautiful it is.

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!

Why Death Doulas Can Be Especially Necessary for Folks in the LGBTQ+ Community

By Gabrielle Kassel

According to a survey of 1,528 LGBTQ+ people focused on the state of the LGBTQ+ community in 2020, conducted by the Center for American Progress, more than one in 10 LGBTQ+ people say they have been mistreated by a health-care provider, and 15 percent say they put off or completely avoided medical care in response to such discrimination. And those numbers are even higher for trans folks, with 33 percent saying they’ve had to teach their providers about being trans in order to receive appropriate care, and 38 percent saying they’ve dealt with a provider who was visibly uncomfortable with their gender identity.

Historically this has meant that queer folks have had to shoulder the burden of educating others and also being discriminated against in health-care settings, even in their final days. In recent years, though, that’s started to change with the rise of death doulas entering the end-of-life-care industry to help those who are dying make that transition. And for members of marginalized communities, like LGBTQ+ folks, such care can be especially necessary.

Death doula, defined

Sometimes called a death midwife, transition guide, end-of-life helper, or end-of-life-doula, a death doula does for the dying (and their loved ones) what a birthing doula does for a to-be parent (and their loved ones). “A death doula is holistic provider who offers non-medical, non-judgmental support to those who are dying as well as their loved ones,” says queer death doula and death-work activist Tracey Walker, who serves on the board of directors of National End of Life Doula Alliance (NEDA). While death doulas can benefit all people during this sensitive time, they are particularly helpful for members of marginalized communities—just as is the case with birthing doulas. And dying members of the LGBTQ+ community, in particular, stand to benefit in specific ways.

The support a death doula provides—whether logistical, emotional, physical, spiritual, or a combination—varies based on the specific death doula as well as the client’s needs and wants. “Some death doulas primarily do paperwork around advance directions, while others primarily function as liaisons between the doctors, the patient, and their family,” Walker says. Death doula work may also entail doing household chores, sitting vigil, sorting possessions, writing letters to living loved ones, planning the funeral, and offering the comfort of having witnessed death previously.

While the person dying and their loved ones often can see out the services a death doula provides without this extra support, these tasks can skew emotionally (and maybe sometimes physically) taxing, so outsourcing can be helpful for those who have access to such services. To contextualize this point, Walker says “most people also could cut their own—or a family member’s hair—yet choose to delegate the task out.” In that spirit, people may choose to delegate certain tasks to a death doula in order to free up space and energy to be present for the person passing in their last days, weeks, months together, Walker adds.

How death doulas can help queer patients combat queerphobia and queermisia in health-care spaces

Death doulas are not nurses or doctors, but they can take on the emotional labor and mental energy associated with educating health-care providers about their patients’ positionality, says sex educator and death doula Sarah Sloane, host of the Social Intercourse podcast. And that’s important, considering the ongoing legacy of members of the queer community being disrespected and discriminated against (aka, been victim to queermisia) in health-care spaces.

For LGBTQ+ elders in particular, who lived through the AIDS epidemic, which was rife with queermisia (before it was called AIDS, the virus was dubbed GRID, or Gay-Related Immune Deficiency), the desire to avoid medical care in order to also avoid discrimination and stigma is likely even higher.

In times of need, queer patients need advocates, which is where death doulas can come in for end of life care.

Furthermore, despite estimations that more than 5 percent of the United States population is LGBTQ+ (which is nearly triple as many the estimation of red-headed people, by the way), research has found that only 39 percent of doctors feel they possess adequate knowledge to treat queer patients’ specific health needs. In short: The health-care space has largely been and largely continues to be one that perpetuates transphobia, biphobia, and homophobia. And in times of need, queer patients need advocates, which is where queer-informed death doulas can come in for end-of-life care.

In addition to advocating for the quality of health care that members of the LGBTQ+ community are entitled to, queer-informed death doulas can also ensure that providers are respecting and affirming queer patients’ pronouns, as well as treating their partners as partners—and not siblings, or worse, strangers, for example, she adds.

Death doulas can help model end-of-life transitions that *don’t* prioritize the nuclear family

In many cultures, death is regarded as a family-centric transition, with the dying surrounded by their children and relatives. “But [that idea] assumes that someone’s biological family is a safe and supportive structure in their life,” says Sloane. With data from 2013 showing that 39 percent of LGBTQ+ people have been rejected by or disowned by their biological family members at some point in their life, that’s simply not the case for many queer individuals. (Indeed, society has made strides in accepting the LGTBQ+ community over the last eight years, but that percentage is still not zero.)

Beyond that, in light of a combination of biological factors as well as laws and financial burdens that stand between queer people and parenthood, LGBTQ+ folks are less likely to have kids, and LGBTQ+ elders are also more likely to be single than heterosexual people, Walker says. These factors combined make LGBTQ+ folks less likely to have biological or legal family members supporting them throughout end-of-life care, opening up more need for a queer-informed death doula to be their advocate.

That’s not to say, however, that queer people do not have loved ones or family—many have chosen families made up of people of all ages, for whom they share queer platonic, romantic, or sexual love. “A queer-inclusive and queer-informed death doula will be able to treat these non-traditional family members as family members,” says Sloane.

For example, someone who is ethically non-monogamous may have two or three partners of equal importance, but only one of whom they’re married to, Sloane says. While traditional medical settings would only value and share information with the (legal) spouse, the death doula can value all partners equally.

Why death doulas for the queer community need to be queer or queer-informed

Not just anyone can be an effective death doula for members of the queer community. That’s because all people have unconscious biases that shape our worldview and the care we give. “For queer people, having a queer death doula can be comforting,” Sloane says, because it provides assurance that the death doula won’t bring in internalized or externalized bias against queer people. Furthermore, a queer death doula may be more conscious about asking a person’s pronouns and saving someone from the task of code-switching, or alternating patterns, gestures, and expressions.

As an outsider to queer spaces, “a non-queer death doula will need to ask questions that a queer person would just know the answers to, due to their lived experiences as a queer person,” Sloane adds. Take, for instance, that in some communities, it’s common for a person to be bathed following death, before burial. “A queer doula may be more likely to know that and thus ask questions like, ‘Do you want your body to be washed?’ or ‘What are your boundaries and preferences while being washed?’” Sloane says. These questions are important because, she adds, “a gender non-conforming person may not want their unclothed body to be seen by any family member or friend, other than the lover.”

It bears mentioning that not all effective doulas for queer people need to be queer themselves. Queer-informed doulas—or, doulas who have undergone sensitivity training and who understand the unique discriminations, needs, wants, and wishes of members of the LGBTQ+ community—can be valuable, too. “Queer-informed and queer death doulas typically say as much in their social media marketing and webpage, and talk about specializing in LGBTQ+ elders,” says Sloane.

To help you find a queer-informed or LGBTQ+ death doula, check out the Gay and Lesbian Medical Association provider directory or ring your local LGBTQ+ center. Ultimately queer-informed death doulas can be a profound addition to the end-of-life care team of a LGBTQ+ person to help ensure that they and their loved ones can be present with the time that remains.

Complete Article HERE!