LGBTQ Elders Are More Likely to Be Socially Isolated, Suffer from Dementia Than Straight Peers

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A new report by University of California San Francisco is making a big claim: LGBT people are at heightened risk of dementia. Additionally, LGBT elders are more likely to be socially isolated than their straight cisgender counterparts, and this social isolation can lead to more physical and mental health problems in comparison.

The new data was released at the 2019 Alzheimer’s Association International Conference (AAIC) in Los Angeles. Data was collected via mainly phone-based surveys across nine U.S. states. Approximately 44,000 adults aged 45 and older participated wherein roughly 3% of respondents identified themselves as a “sexual or gender minority.”

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers.

The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

A new report by University of California San Francisco is making a big claim: LGBT people are at heightened risk of dementia. Additionally, LGBT elders are more likely to be socially isolated than their straight cisgender counterparts, and this social isolation can lead to more physical and mental health problems in comparison.

The new data was released at the 2019 Alzheimer’s Association International Conference (AAIC) in Los Angeles. Data was collected via mainly phone-based surveys across nine U.S. states. Approximately 44,000 adults aged 45 and older participated wherein roughly 3% of respondents identified themselves as a “sexual or gender minority.”

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers.

The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

“As expanding research efforts continue to teach us more about the variability of Alzheimer’s and other dementias — for example by sex, race, genetics and exposure to environmental factors — the Alzheimer’s Association will fund, and encourage others to fund, more studies in LGBT and other diverse populations,” Carrillo added.

Increased Risk for Subjective Cognitive Decline Among Sexual and Gender Minorities
Few studies have investigated the symptoms and disease progression of Alzheimer’s and other dementias in the LGBT community.

To examine these associations, Jason Flatt, PhD, MPH, assistant professor at the Institute for Health & Aging at the University of California, San Francisco, and colleagues analyzed data from the 2015 Behavioral Risk Factor Surveillance System (BRFSS), a large phone-based survey led by the Centers for Disease Control and Prevention.

The study analyzed data from 44,403 adults aged 45 and older across nine states in the U.S. (Georgia, Hawaii, Illinois, Minnesota, Nevada, Ohio, Virginia, West Virginia, and Wisconsin) that participated in the 2015 BRFSS optional modules on the Healthy Brain Initiative, which included subjective cognitive decline and Sexual Orientation and Gender Identity.

Roughly three percent of participants (1,253) identified as a sexual or gender minority (SGM). Subjective cognitive decline was defined as self-reported confusion or memory problems that have been getting worse over the past year.

The researchers found that more than 14% of SGM participants reported subjective cognitive decline, significantly higher (p<0.0001) than the 10% rate among cisgender heterosexual participants. Even after adjusting for factors such as income, age and race, SGM participants were 29% more likely to report subjective cognitive decline.

More research is needed to understand why subjective cognitive decline may be higher in SGM individuals.

“Given that 1 in 7 adults who identified as a sexual or gender minority reported subjective cognitive decline, it is critical that more opportunities exist for people in these communities to receive regular evaluation for cognitive impairment and Alzheimer’s disease,” Flatt said. “There is also a need for greater education on Alzheimer’s risk, signs and symptoms, and training of health care providers to ensure inclusive and welcoming care for LGBTQ+ populations.”

“While we do not yet know for certain why sexual or gender minority individuals had higher subjective cognitive decline, we believe it may be due to higher rates of depression, inability to work, high stress, and a lack of regular access to healthcare,” Flatt added.

According to Flatt, less than half of SGM adults with SCD in the study talked to their health care provider about it. SGM adults with SCD were also more likely to report that they had to give up day-to-day activities (39% vs. 29%, p=0.003) and needed help with household tasks (44% vs. 35%, p=0.01) than cisgender heterosexual participants. Both groups were similar in terms of talking to their health care provider about their subjective cognitive decline.

First Study of an LGBT-Specific Alzheimer’s and Dementia Intervention
To advance research into Alzheimer’s in the LGBT community, Karen Fredriksen-Goldsen, PhD, professor and director of Healthy Generations Hartford Center of Excellence at the University of Washington, created the Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA) study.

A multisite study in Seattle, San Francisco, and Los Angeles, Aging with Pride: IDEA is the first federally-funded study dementia intervention specifically designed for LGBT older adults with dementia and their caregivers.

The researchers had previously identified unique risk factors of LGBT older adults living with dementia through the first longitudinal study of this population (Aging with Pride: National Health, Aging, and Sexuality/Gender Study). Using longitudinal data with three time points (2014, 2015 and 2016), modifiable factors predicting physical functioning and quality of life (QOL) among LGBT older adults with dementia (n=646) were identified.

LGBT older adults living with dementia were significantly more likely to live alone (nearly 60%), not be partnered or married (65%), not have children (72%), and not have a caregiver (59%), when compared to older non-LGBT adults living with dementia. Previous experiences of discrimination and victimization (b=-0.19, p<.001) were negatively associated with QOL among LGBT older adults living with dementia. Socializing with friends or family (b=1.11, p<.05) was positively associated with QOL, and physical activity (b = 0.26, p<.001) were associated with better physical functioning.

As reported at AAIC 2019, Aging with Pride: IDEA includes a tailored approach in which trained coaches identify and modify challenging behaviors that are adversely affecting older adults living with dementia and their caregivers, either of whom are LGBT. The coaches delivered an individualized program of exercise, and behavioral and coping strategies designed to improve physical function, independence and QOL.

The exercise intervention is a low-impact physical exercise program including nine one-hour sessions over six weeks designed to improve physical functioning and maintain independence. The behavior and coping strategies include: techniques for working with LGBT-specific trauma, identity management and disclosure of their LGBT identities to providers and others, plus support engagement in the LGBT community and dementia services.

Testing of the intervention is now underway and will be delivered to 225 pairs of LGBT older adults living with dementia and their caregivers.

“Given their lifetime experiences of victimization, discrimination and bias, many LGBT older adults forgo seeking needed medical care,” said Fredriksen Goldsen. “LGBT people living with dementia and their caregivers often have difficulty accessing information and support services, which can be especially challenging when memory loss and dementia enter the equation.”

Complete Article HERE!

The case for hospice care

By BETH SLEPIAN

A recent analysis published by the New England Journal of Medicine revealed that for the first time since the early 20th century, more Americans are dying at home than in the hospital.

According to the report, in 2017, 30.7% of Americans died at home, while slightly fewer (29.8%) died in hospitals. Another notable statistic from the study is that between 2003 and 2017 the number of Americans who died in hospice-specific facilities grew by 41%, from 0.2% of deaths in 2003 to 8.3% in 2017. According to the National Hospice and Palliative Care Organization (NHPCO), 47.5% of New Hampshire residents on Medicare who died in 2017 were receiving hospice care benefits.

This data does not come as a surprise to those of us who work in hospice care and have the honor of helping families navigate the end-of-life experience.

Up until the mid-1900s, it was routine for people to die in their homes, cared for and surrounded by loved ones, but by the 1950s, more Americans died in hospitals. The concept of “death with dignity” was introduced in the United States in the early 1960s, sparking the movement toward hospice care.

The hospice movement gathered steam in the late 1970s with the formation of the National Hospice Organization, and by the mid-1980s, the federal government formalized the hospice benefit for people on Medicare.

Concord Regional VNA has been caring for people in their homes for 120 years, providing nursing, therapy, personal care, homemaking and other services to people of all ages. For more than 30 of those years, we have provided specialized end-of-life care, guidance, and support to patients and families. In 1994 we expanded our hospice service by opening the first Hospice House in New Hampshire on Pleasant Street in Concord. We have served thousands of hospice patients and their families over the years, including nearly 1,000 patients in 2019.

While it is true that hospice care comes into play toward the end of a person’s life, there are many common misconceptions, such as:

■ Hospice care is only for the last few days or weeks of a person’s life;

■ It is only for people with cancer, people in severe pain or those who have a “do not resuscitate” order;

■ People on hospice do not receive treatment, they’re just kept comfortable with medication;

■ Hospice is a “place” where a person goes to die;

■ Hospice hastens death;

■ People on hospice must give up seeing their primary care providers;

■ Hospice care is focused on the patient and ends when the patient dies.

Hospice care is much more than meeting patients’ medical needs. Hospice care empowers patients to have a voice in their end-of-life experience, and to help them through it with as much comfort, grace and dignity as possible. It is about compassion – for them and their loved ones.

Some people choose to begin receiving hospice care in the final weeks or days of a terminal illness, but it is not unusual for patients to begin hospice care many months before they eventually pass.

People who receive hospice care through Concord Regional VNA benefit from individualized care coordinated with their care team, which may include their primary care provider and other clinicians. They may receive nursing care, physical and/or occupational therapy, pain management, spiritual care, social work , including emotional support and companionship – all in the place they call home, which could be a private residence, an independent living or assisted-living community, or a skilled nursing facility. Those who need more intensive care may opt to receive care at Hospice House.

Equally as important in this journey are the caregivers, who are most often the patients’ loved ones. Hospice care is about them, too. In addition to day-to-day assistance with patient care, loved ones may receive emotional and spiritual guidance and support from our counselors and spiritual care providers; help with end-of-life planning; much-needed respite care; and myriad other services. And it is important to note that hospice care does not end when a patient dies – our bereavement counselors and support groups help loved ones as they learn to cope with their loss for as long as they need us.

Hospice care is also about volunteers. The hospice movement was started by volunteers and they remain a crucial component to this day. In fact, Medicare requires that volunteers provide at least 5% of total patient care hours, which can take the form of direct support, spending time with patients and families, or performing tasks that support hospice care services. Concord Regional VNA is incredibly fortunate to have nearly 100 volunteers from the communities we serve who give their time and energy to our hospice patients and their loved ones.

So what does this mean and why does it matter? The recently released data suggests that more people have come to understand that receiving care in the comfort of home – in familiar surroundings, in proximity to loved ones and friends – is a preferable and realistic option. From a clinical standpoint, studies show that patients who receive hospice care live longer than those with similar diagnoses who do not receive hospice care. Receiving care at home also has a significant positive impact on overall health care costs.

Death is a fact of life. Patients often tell us that choosing hospice allows them to feel in control, and managing their symptoms helps them feel more at peace. Choosing hospice is not giving up, rather, it is choosing to live fully until you die.

It is not meant to be scary; it is meant to help people live each moment to the fullest and to pass with dignity and respect surrounded by love.

We at Concord Regional VNA are privileged to help patients and their loved ones navigate this journey, and proud to have been providing hospice service to the people of Concord and the 43 other New Hampshire communities we serve for more than 30 years.

Complete Article HERE!

‘It was kindness and it was a mercy’:

The doctor helping people to die

Oncologist Cameron McLaren

By Melissa Cunningham

It was just after 2pm on October 31 when oncologist Cameron McLaren arrived at Phil Ferrarotto’s house on the outskirts of Melbourne to help him die.

Dr McLaren had never administered a fatal drug to a terminally ill patient before. He was struck by the magnitude of what he was about to do.

“I had no idea if I was going to be OK with it even up to the point where I put the needle to his arm,” Dr McLaren said. “But there was no question that this was the right thing to do for Phil. It was what he wanted. It was kindness and it was a mercy.”

Phil hadn’t eaten for days. No longer able to digest his medication, the 70-year-old was hooked up to an intravenous morphine drip and sustained by spoonfuls of cola-flavoured ice.

He lay in bed with his daughter Katie and wife Dorrie curled up on either side of him. They cuddled his frail body and watched his chest rise and fall with each painful breath.

His son Glen and son-in-law Ryan came into the room with three glasses of aged Glenfiddich whisky; one for each of them and one for Phil.

They toasted Phil as Dr McLaren gently swabbed the father-of-two’s arm with medicinal alcohol.

Phil Ferrarotto

Dr McLaren found a vein and inserted a cannula. He used the thin tube to inject a sedative medication, before administering an anaesthetic and a muscle relaxant.

Phil began to drift off within minutes of the drugs flowing into his bloodstream. The circle of his family closed in around him. They held his hands and told him how much he was loved. “Be happy,” Phil said, before he took two final, deep breaths.

Dr McLaren has helped two dozen terminally ill Victorians apply for permits to end their lives since the state’s voluntary assisted dying laws came into effect on June 19. Eleven of them have since died using the legislation.

All the patients Dr McLaren has assessed so far were in intolerable pain and often bedridden.

“The number one reason people are doing this tends to be more the existential suffering,” Dr McLaren says. “It is the loss of joy, the fear of losing dignity and the fear of losing autonomy and of being a burden to family.”

Cancer-stricken patients surrender their bodies to years of treatment they know will cause them pain and discomfort, Dr McLaren said. He wants to give people control at the end of their life.

“It is one last decision about their body which is entirely theirs,” he said. “This is something we do for animals and when they get too old and they are suffering greatly. We put them out of their misery and we call it humane. Why shouldn’t we afford humans the same humanity?”

When Dr McLaren first met Phil he was sitting in an armchair in his living room hooked up to an oxygen concentrator. The cancer had spread from his bladder to his lungs and had riddled his bones. Then it invaded his liver, causing his belly to swell and fill with fluid. Opioids prescribed to Phil did little to dull his pain. Each breath was agony.

This kind, strong-willed, clever, retired general manager, who had battled four different kinds of cancers over the past 18 years, was frank and direct.

He told Dr McLaren he wanted to end his own life.

Dr McLaren carefully assessed Phil. He ticked off all the strict criteria; over the age of 18, of sound mind, an Australian citizen with less than six months to live. He referred Phil on to a second doctor who also deemed Phil eligible for the scheme.

Before his application was approved an email from Phil arrived in Dr McLaren’s inbox: “This gives me no pleasure in begging you to end my life, but I have no one else to turn to. I’m struggling with every breath I take and I can’t do it anymore.”

A permit for a doctor-administered death was approved the same day by the Voluntary Assisted Dying Board with Dr McLaren agreeing to administer the fatal dose.

For days after Phil died, Dr McLaren was waiting for the “hammer’s fall”.

“I was really concerned about the fallout for me, personally and emotionally,” he said. “I was concerned about being recognised as ‘that’ doctor and the impact it might have on my family and my work.

“I didn’t question what I did, because in Phil’s case, he was in the last days of his life and he was going to die within 48 to 72 hours. I was able to provide him a death that in his mind was dignified. It didn’t cost him anything. It cost him his suffering.”

The fallout never came.

“It was a lonely experience because there’s no literature review you can read on it,” he said. “It still does feel lonely because there’s not a lot of us doing it.”

The night Phil died, Dr McLaren picked up his two year-old daughter when he got home and held her in his arms. His love for his child overwhelmed him and he pressed his face against hers.

“As I was holding her I thought of Phil being surrounded by his family as he took his final breath,” he said.

“Nothing that we could have done would have avoided his death, but we were able to make sure Phil  died at home in the arms of the people who loved him most. I thought, yeah, that would be a nice way to go.”

Before he died, Phil wrote a letter to Dr McLaren thanking him for what he was doing:

Complete Article HERE!

To Die Is Different From What Anyone Supposed

Art, philosophy and mortality.

By Joseph Kugelmass

At an overlooked moment in his Essays, Michel de Montaigne writes that “life itself is neither a good nor an evil; life is where good or evil find a place, depending on how you make it for them.” Yet it’s hard for anyone to reckon, before the point is moot, how much good and evil one life shelters in its span. No matter what we do while we’re alive, there’s plenty that we leave unfinished, or that we gape at while it goes awry. There are mistakes that we still might have enough time to mend. Hamlet got it backwards: it’s not death, but life, that “puzzles the will” with its ironies and uncertainty.

Every now and then, however, people manage to outlive themselves. Convicts serving life sentences do, for example, which is why “Folsom Prison Blues” is such a savage, luminous song. Mortally ill people sometimes end up in an equally uncanny position. Leo Tolstoy’s character Ivan Ilych, on his deathbed, glimpses the ugly truth of his life: “It occurred to him that what had formerly appeared completely impossible to him, that he had not lived his life as he should have, might be true. It occurred to him that those barely noticeable impulses he had felt to fight against what highly placed people considered good, barely noticeable impulses which he had immediately driven away—that they might have been the real thing, and all the rest might have been not right.”

Russian literature is full of people like Ivan. Prince Myshkin (in Fyodor Dostoevsky’s novel The Idiot) eventually realizes that “for a long time now, he had not been talking about what he needed to talk about, and had not been doing what he needed to do.” The horror of this realization breaks his spirit, and he succumbs to seizures and catalepsy, dead to the world. A quieter storm breaks over Lambert Strether’s head in The Ambassadors, by Henry James: “I’m too old…What one loses one loses; make no mistake about that. Still, we have the illusion of freedom; therefore don’t, like me to-day, be without the memory of that illusion.”

Outcries of regret like these carry an emotional charge for us, the audience, that can be hard to explain. Is the finality of death, prison, or old age really profound just because—to quote Michel Houellebecq—the goal of life’s been missed? Critics have spent their whole lives on the works of Henry James only to conclude that “the idea of ‘too late’” was some kind of regrettable obsession on James’s part (see, e.g., Berthold 1983). After all, the curtain does have to fall, sooner or later.

Fortunately, these epiphanies that reach us from death’s farther shore aren’t really bemoaning lost opportunities. Instead, they are bits of fire carried down from those Olympian peaks where life appears as it really is: a frenzied circus of petty motives, bootless efforts, and misunderstandings. Death is the greatest moral agent in all of life. It boils each individual down to her most generous acts; nothing else survives. We are the sum of our gifts to the people who will outlive us. Thus it does matter what a dying man decides to regret. His regrets, useless to him, are the bitter correctives that we survivors may choose to adopt.

Literature’s stuffy cousin, philosophy, is always playing a game of death. The philosopher tries to abstract truths about life from human experiences, impartially, as if she hadn’t lived them herself. Baruch Spinoza famously wrote that philosophy should consider the world sub specie aeternatis, “from the perspective of eternity.” Erasmus, in The Praise of Folly, paints a vivid picture of Menippus (who, supposedly, lived on the moon) doing just that: 

“If a man like Menippus could look down from the moon and behold those innumerable rufflings of mankind, he would think he saw a swarm of flies and gnats quarreling among themselves, fighting, laying traps for one another, snatching, playing, wantoning, growing up, falling, and dying. Nor is it to be believed what stir, what broils, this little creature raises, and yet in how short a time it comes to nothing itself; while sometimes war, other times pestilence, sweeps off many thousands of them together.”

It’s a comical picture, but there’s a great deal of forgiveness in it as well. When it’s our turn to die, there’s no longer any reason to stay angry at people who loved us, or cheated us, or whom we envied. Recrimination and bitterness lose their impetus. The facts of life don’t alter just because we die; if we lived forever, we’d still behave like idiots from time to time. But the fact of death, seen clearly and steadily, drags many other things with it into the light. At the moment of his death, when he’s murdered, Lester Burnham (in American Beauty) “can’t feel anything but gratitude for every moment of my stupid little life.”

Philosophy as we know it began when Plato sat down and tried to make sense of the murder of Socrates; the vicious Athenians who killed him to preserve their monopoly on morals become, in The Republic, simple cave-dwellers frightened of sunlight. Their cruelty is pardonable blindness; in order to write about the death of Socrates, in a fashion that honored his greatness, Plato had to make peace with his teacher’s executioners.

We tend to think of “objectivity” as a cold, rational perspective that doesn’t take sides on questions of morality. We associate it with empirical observation and scientific testing. That’s a tremendous misunderstanding. To be objective is to grasp something as a whole. It lays bare the threads that connect a senseless murder in Reno with a “fancy dining car” on a passing Folsom train. It’s realizing, as Plato did, that Socrates couldn’t have become so widely known and admired in a city less dangerous to him than Athens. It means remembering, like Ivan Ilych, the impulses towards something better that one felt, repressed, ignored, all for the sake of a life not worth living in the first place.

Walt Whitman wrote, in his “Song of Myself,” “to die is different from what anyone supposed, and luckier.” For, as he says in the preceding line, “All goes onward and outward, nothing collapses.” To see that, instead of just divining and proclaiming it, is the work of philosophers: those few who teach themselves to die with eyes open.

Complete Article HERE!

Ashes to Ashes and Into Trees

This Bay Area start-up wants to change how we think about death

By Austyn Gaffney

Five miles inland from the rocky coast of Mendocino County sits 20 acres of forest. The trees—redwoods, Douglas firs, tan oaks, madrones—line old logging roads. Ferns and rhododendrons soften the forest floor. On a clear day, from a crest in the wooded parcel, there’s the blue snap of ocean.

It’s near this crest that Sandy Gibson, founder and CEO of Better Place Forests—a company whose mission is to conserve land by turning it into natural cemeteries—showed me his gravesite. Trees marked by orange, pink, or blue ribbons were available for burial plots, but Gibson’s redwood, towering above a dry creek bed, was ribbonless, signifying its purchase. Nearby trees with small copper plaques at their base, reminiscent of US Geological Survey markers, served as people’s tombstones.

Gibson has been yoked to death from an early age: When he was 10, his father died of a stroke, and a year later, cancer took his mother. As a child, he remembers leaving their gravesites before they were even filled in with soil, and later visiting a shiny black tombstone along a busy street in Toronto, Canada. With a voice gentle but earnest, like he’s intimately familiar with the octaves needed to discuss death, Gibson explained on this foggy morning in August how he now finds comfort in seeing a ceremony to its end.

“We’ve been burying our dead for 50,000 years in cemeteries,” Gibson told me. “The earliest things we can find are basically tools in caves and burial sites. The idea of a permanent sacred space for the people that you love is something deeply and innately human.”

Better Place Forests takes cremated ashes, which are, essentially, bacteria-free bone dust, and spreads them in forested properties. When mixed with bacteria-rich soil, the nutrients in the ashes break down and feed a tree’s root system. On a bronze table next to the visitor’s center, forest stewards sift cremated remains with soil. Then, they lead a “spreading ceremony,” ushering loved ones into the forest and up to the base of the selected tree. There, the sifted soil is mixed with more dirt. Ashes to ashes, dust to dust, the dead are returned to the earth.

Now 36, Gibson is the epitome of a start-up CEO—gray hairs pepper his temples and his beard. He’s clean-cut but practical—a button-up shirt, slim pants, and walking shoes. For seven years, Gibson and one of his two partners at Better Place Forests, Brad Milne, ran a software company in Toronto. But Gibson was dissatisfied. Software could disappear one day. He latched onto the idea of creating something physically beautiful that might endure a technological collapse. (In the 45 minutes Gibson and I spent touring his Point Arena property, he referred to beauty, on average, once every 60 seconds.)

“I used to think about nothing, about blackness,” Gibson said, turning to face me beside his redwood. “Now there’s certainty. And that certainty is beautiful.”

Depending on traffic, Point Arena lies three to four hours north of San Francisco. A second site, slated to be open for burials in 2020, is two hours south in Santa Cruz. Better Place Forests is purchasing as much land as it can, as fast as it can, with plans to expand into Washington, Oregon, Colorado, and Arizona. Although Gibson claims he started his company in California to be near the redwoods, it probably doesn’t hurt to be close to Silicon Valley. The biggest challenge, though, might be getting investors excited about death.

“It’s a scary topic,” Gibson admitted. “But people love nature. They love protecting nature. You’re changing the discussion from one about death to one about conservation and beauty. That one’s a lot more accessible.”

Along with the promise of closure, Gibson and his team are selling the notion of legacy through conservation. If cemeteries take up space, Gibson wondered how death could do the opposite. How could it give space back? By purchasing a tree, customers invest in the preservation of a natural landscape. Each purchase also triggers an “impact trees” program, which commits to replanting a certain number of trees—between 25 and 400 depending on the price of the purchased tree—in wildfire-affected areas of California.

Before Better Place Forests came to Point Arena, this former logging parcel was full of dense underbrush that made it more susceptible to forest fires. By establishing conservation easements on purchased properties, Better Place Forests promises to pay for the ongoing management of the entrusted land. Furthermore, if the start-up goes under, the land will be protected in perpetuity. But the process is a bit complicated. Negotiations for the easement on the Point Arena property are still incomplete, though as of October approximately 100 spreadings had taken place.

For the past 150 or so years, the United States has developed a far-reaching death industry. Before the Civil War, families mourned and buried their dead at home. But the staggering amount of dead bodies from the war, needing to return home for one final ceremony, led to embalming and undertakers. Business began to boom, introducing more elaborate coffins and making engraved stone markers more common.

The price tag of death spiked, damaging both pocketbooks and the environment. According to Mary Woodsen of Cornell University, in the US alone, conventional burials account for 20 million board feet of wood, 1.6 million tons of reinforced concrete, 17,000 tons of copper and bronze, and 64,500 tons of steel each year. Over 4 million gallons of embalming fluid are used annually, almost one-fifth of which contains formaldehyde, a toxic substance linked to increased cancer risks among funeral-industry workers.

In her 2015 book, Greening Death: Reclaiming Burial Practices and Restoring Our Tie to the Earth, Suzanne Kelly laments the “walled-off city of contaminants” that will flood her own father’s body after he is embalmed, placed in a wooden casket, and then a metal casket, before being encased in a concrete vault inserted into the ground and then buried beneath the dirt. Kelly fears his grave will become a problem, instead of a place of mourning. Mounting awareness of these impacts has led to a growing movement for green burials, which the Green Burial Council defines as “a way of caring for the dead with minimal environmental impact.”

The process of cremation—which accounted for less than 10 percent of US burials in 1980, but today plays a role in over half—isn’t great for the environment either. Along with emitting carbon dioxide and mercury, cremation uses enough natural gas to power a 500-mile car trip, though, according to Kelly, advocates are pushing for renewable forms of energy and crematory filters to limit contaminants. Water cremation, or alkaline hydrolysis, is also on the rise, using a water-based solution, instead of heat, to speed up decomposition. It uses one-fifth the energy of fire cremation and better retains the body’s nutrients.

Today, there are approximately 93 green burial sites across the US. The first cemetery certified by the Green Burial Council was a preserve in South Carolina founded to protect a quarter mile of Ramsey Creek. Opened in 1998, it now encompasses over 60 acres, and over 400 natural burials, both whole body and cremation, have taken place on the site. Management practices on the land are permanently restricted so it remains wild.

Along with better environmental standards, green burials tend to be less expensive than conventional ones. In the past 30 years, funeral costs have risen almost twice as quickly as any other consumer items. According to the National Funeral Directors Association (NFDA), in 2017, funerals with a burial, viewing, and vault cost an average of $8,755. But green cemeteries, like Honey Creek Woodlands in Georgia, advertise natural burial plots for $3,200. For natural burials involving cremation, those costs drop between $1,150 and $2,700, depending on the location.

Though trees in Better Place Forests are hardly cheap. While community trees (in case you’d like your ashes to mingle with those of a bunch of strangers for eternity) start at $950 per spreading; individual trees begin at around $3,000 and can go upwards of $17,000. Each tree includes one to two ceremonial spreadings, and each additional spreading is an additional cost. But if all your relatives agree to be interred beneath the same tree, that spreading fee can be about an eighth of the cost of a conventional burial.

Most natural burial sites, including Better Place Forests, don’t include the cost of cremation, which ranges widely from a few hundred to a few thousand dollars. The number of funerals involving cremation is expected to rise to almost 80 percent of burials by 2040. And although more baby boomers are choosing cremation, they’re not all choosing cemeteries.

It’s a good thing, because we’re running out of space. According to a 2012 study, if all Americans who reach 78 years old (the average life expectancy) chose to be buried in standard plots, by 2042 we’d need 130 square miles of pure grave space, an area about the size of Las Vegas.

The green burial movement subverts the major economic interests of the funeral industry in other ways besides circumventing traditional funeral services. Returning people to the earth in a more natural way doesn’t surround death with sales of land, resources, and facilities. Service Corporation International, the largest multinational funerary business, reported a revenue of over $3 billion in 2018 alone. It’s estimated to comprise at least 15 percent of the death-care industry in North America, operating almost 1,500 funeral service locations and close to 500 cemeteries. Their report to the United States Securities Exchange Commission stated that they were “poised to benefit from the aging of the American population.”

Kathee Pfalmer, a baby boomer from California, had a hard time talking about her eventual passing with her family. She’d brought up various unconventional burial methods with her four children. Would they like mom’s ashes pressed into stones reminiscent of diamonds and made into rings? Or perhaps a nice piece of pottery with her ashes worked into the glaze? Unfortunately, she couldn’t imagine her children saying, “Let’s go pick up mom’s vase.” Then she stumbled across a Facebook ad for Better Place Forests.

When she visited the Point Arena forest in October, she, like Gibson, connected with a redwood tree. Although genetically the same, her tree has two trunks that appear distinct, and the pale stump of a burned tree, left over from a 1906 forest fire, leans against them. Pfalmer says the trio resonated with her because of her eclectic mix of family members, who though not all biologically related, are very loving and supportive of one another. Her decision has shifted the conversation with her children.

“Something about buying this tree and having a place helps me talk to my kids about it,” Pfalmer told me over the phone. “They can imagine my passing without thinking about me dying.”

In a 2017 study by NFDA, over 60 percent of respondents felt it was important to communicate funeral plans, but only 21.4 percent had done so. More than half of all respondents wanted to explore green funerals as a way to reduce their environmental impact. Or perhaps, to become a positive contribution to an environmental web.

“I thought it was a really good way of introducing the finality we all come to,” says Pfalmer, who brought along her 14-year-old granddaughter to pick out her tree. A lifelong gardener, Pfalmer is familiar with the cycle of life and death. She wants the cycle of her life honored in a natural way, and she hopes that for her granddaughter, the experience “might help her feel more at peace with the inevitability of death as part of life.”

Cody Sanders, a Baptist pastor and theologian who specializes in how death care impacts the environment, believes our corpses aren’t dying in a natural way but instead are being withheld from the ecosystem to which they belong. He argues that in death, our corpses can be in tune with the earth’s own cycles of life and continue living through the transformative process of decomposition.

“We’ve done everything we can in the last 150 years or so to deny the earth the life it could receive through our dead bodies,” Sanders writes in a paper for the journal Pastoral Theology.

Sanders suggests that how we treat our dead “mirrors ideologies and theologies that have arisen that suggest humans are not a part of the earth,” and that this “has strong ties to the practices that are contributing to the climate collapse at this point.”

Suzanne Kelly, author of Greening Death, claims sustainable death choices could provide a new tool for engaging in climate anxiety—a more intimate connection to the earth. In her book, she quotes Bob Fertig, a green-friendly funeral director, who says, “The focus on the environmental aspect [of the green burial movement] is wonderful, but I think what sometimes gets lost in that is the potential for closeness with death and the way it makes people feel.” 

In other words, green funerals aren’t just good for the environment. In an age of climate crisis, strengthening the bonds between people and the planet can be good for the human psyche too.

*

Weeks after visiting the Point Arena forest, I called my dad and asked him, “Would you like to be buried beneath a tree?”

My father has had a rare form of stomach cancer for over half a decade. I found out after graduating college while lying on the floor of the apartment I was subletting—not because I was awaiting bad news but because it was midsummer in Kentucky and I had no air conditioning. I thought my father had gone in for a minor surgery, but my mom called, saying they’d found tumors. They’re the kind of tumors that can be stalled but not the kind that go away. He has since retired on disability. He tires often and can suffer stomach pains that send him to the emergency room. He’s taken up meditation and spends time in a condo in Ontario to be closer to family. I often hesitate when he brings up his death. I get tongue-tied in the company of mortality, but now, when referencing another living being, like a tree, I found the discussion flowed more easily.

Of course he’d like to be buried beneath a tree, he said. Since childhood, he’s explored thousands of miles of the outdoors. On his first canoe trip, he was in diapers, and he hitchhiked out to the Canadian Rockies the summer he was 16. He still has the steel-frame, faded red backpack he used to traverse Jasper National Park. We don’t stroll too far from home these days, but we often manage to find our way to a riverbank or some nearby woods. On the phone now, he repeated his desire for cremation, and while he liked the tree idea, he balked at the cost. “Why wouldn’t I just donate what I’d spend reserving a tree to a conservation group?” he asked.

The cynic in me wants to critique Gibson’s model: the continued commodification of the natural world, and of burial sites. The idea that a San Francisco–based start-up is finding capital gains in something as tender-hearted as death. But somehow I keep falling short. Sure it’s just a tree. Sure it’s a lot of money for the ritual of saying goodbye. Aside from the small fact that it’s illegal, I could spread my father’s ashes wherever I like. But the idea of being able to visit his remains while also conserving a natural space? It sounds a little like solace.

“People still need a sense of place. You want to know there’s a place for your family to come,” Gibson told me, echoing Kathee Pfalmer’s wishes for her tree. “You want to know there’s a ceremony that will make it easier for your family to grieve.”

In May, months before I met Gibson in Better Place Forest’s tract of trees, I traveled to the gravesite of my great-grandfather in Nova Scotia with my father and my paternal grandmother. The cemetery was camouflaged along a backroad of birch trees and brambles, but my grandmother recognized the turn-off immediately. She’d visited her father here since he died when she was five years old, and she wanted me to pay my respects at his burial site. There was an intimacy in picking flowers to lay on the graves of our relatives, fenced off between two small fields and curtained with trees. There is a sweetness to these spaces.

Death is part of the ongoing web of life that humans are ecologically tied to by virtue of being mammals on this earth. For Sanders, privileging these alive human bodies “allows us to maintain the destructive fiction that all that is lifeless is inert and without significance or desire. The dead body—lifeless as it may be—is not finished revealing to us our roles and responsibilities for care.” The earth still desires something in relation to our body, Sanders writes—its return to the “aliveness” of the ecological world.

There is a natural order to things that ugly interruptions like cancer, addiction, car wrecks, and other tragedies take away from us. Nature reestablishes that order. It reminds us, especially the nonreligious among us, that there is life after life. Those nutrients in my father’s bones, in my bones, could enrich the soil. I imagine worms eating bits of me, and birds eating bits of worms. I imagine the process of my decomposition spiraling out beyond me. And I admit, it brings me comfort.

Complete Article HERE!

Vancouver photographer offers solace to those dealing with death

Grief Narratives website allows users to reflect on the end of days

Josh Neufeld documented his father’s death through a series of photographs called “Meeting Mortality.”

By John Kurucz

Josh Neufeld has a special affinity for turkey necks.

It’s not that they taste particularly good, nor were they a staple on his plate since childhood.

Neufeld’s late father Dietmar loved the neck. It was his go-to whenever turkey was served at a holiday meal.

Dietmar died in September 2015 after a brief battle with cancer.

Thanksgiving dinner that year was the first family gathering after Dietmar’s death.

“I sat in his spot and in his honour, I ate the whole neck and blubbered like a buffoon because it was like ‘OK, this is our life now,’” Josh recalled. “It’s four Christmases later, but still that feeling doesn’t change. It sucks.”

Outside of the culinary nod, Neufeld continues to pay tribute to his father in a manner that’s profoundly personal, yet completely universal.

Neufeld’s website Grief Narratives invites people the world over to share their photos, thoughts, feelings and emotions as they experience death in their own unique way.

The online platform has garnered interest across Europe and as far away as South Africa.

The site was born partly out of Neufeld’s experience photographing the end of his dad’s life, a project called Meeting Mortality.

Across roughly 30 photos, Neufeld documented the final 19 days of his father’s life in hospital.

“My dad never did see the photos, which really messes with my head,” said Neufeld, a professional photographer by trade.

Neufeld hatched the idea in the spring of 2015 upon visiting a dying relative in California. His uncle was simultaneously battling Parkinson’s disease and cancer and sat the roughly 50 family members down to prepare them for the end.

“You walk away from a conversation like that and you’re like, OK, that really realigns priorities and shifts perspective and helps you look at life a little differently,” Neufeld said.

Volunteering at a hospice was to be Neufeld’s next step but Dietmar fell ill before his son could find a volunteer placement.

Dietmar was diagnosed with pancreatic cancer on July 13 and died Sept. 9. He was 66. He was the department head of classical, near eastern and religious studies at UBC, an avid cyclist and loved taking the piss.

“Him and I would spend hours out by the fire chatting,” Neufeld recalled. “He could go deep about anything religious and he taught ancient Greek language. But then he could also sit there and shoot the shit about the most meaningless, stupid stuff.”

Documenting the end was done so with his Dietmar’s blessing. He also came up with the name “Meeting Mortality.” Neufeld discussed the idea with his mom and three sisters and got buy-in, though not totally.

“My oldest sister doesn’t really like to look at those photos,” Neufeld said. “But I think they just understood where it was coming from.”

Neufeld has since gone on to photograph the end of days for other families. Last year, he interviewed 22 people about their experiences confronting mortality, taking photos as they spoke.

He hopes to expand Grief Narratives into a multi-media platform where users can pay tribute to loved ones via text, photos, video and other media.

It’s a project not necessarily intended to normalize death, but to give community and a space to reflect for those who need it.

“I hope it becomes something people use and find value in,” he said. “I’m trying to show people that it’s an option. It’s not going to be for everyone.”

Neufeld’s work can be seen online at griefnarratives.com and joshneufeldphotography.com.

Complete Article HERE!

The struggle to create a new craft of dying

—what is medicine’s role?

By Richard Smith

“Lyn Lofland’s The Craft of Dying (1978) is one of the most important books on post WWII death and dying practices that almost no one has read,” writes John Troyer, director of the Centre for Death and Society at Bath University. He thinks that everybody interested in death and dying should read the book. I agree. Potentially that means that every human being should read the book—because who cannot be interested in death, arguably the most important thing about us. Plus The Craft of Dying is short, easily read, full of compelling stories, and constructs a clear argument.

“Death can neither be “believed” nor “magicked” nor “scienced” away,” writes Lofland in her first line. But we can’t stop ourselves from thinking about it: “Everywhere and always humans think about it and develop beliefs regarding it and produce emotions toward it and do things relative to it. What they think, believe, feel, and do is, of course, variant. But that they think, believe, feel, and do is a universal.”

Every culture has developed beliefs and customs around death, but human death, argues Lofland, has changed dramatically in the past 60 years. Until that time people died mostly of infectious disease and injuries. The period of dying was short, and it was clear when people were dead. Medicine had little to offer. Now people die mostly of chronic disease, and the length of dying is long. Death is not easily defined, and doctors have much to offer, including long term ventilation, heroic operations, and drugs, some of them extremely expensive.

“In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die,” writes Atul Gawande in Being Mortal, published in 2014. Lofland wrote something similar in 1978: “There exists currently no widely accepted, fully articulated, well-integrated dogma that gives ‘being dying’ its meaning or its place in the larger scheme of things.”

A cultural vacuum has been created, and inevitably attempts are underway to fill the vacuum. We have entered a new age of what Lofland calls “thanatalogical chic”: in the contemporary cliché “death is the new black.” We have to decide how to die, where to die, how to dispose of the dead, how to mourn, and, most difficult of all, what death means.

One response has been what Lofland teasingly calls “the Happy Death Movement.” It is an inchoate social movement with many practitioners, strands, and different views, but Lofland sees patterns that were emerging in the 70s and are still emerging.

Firstly, a social movement needs an enemy, and the enemy of the Happy Death Movement is death denial, death as the great taboo. Lofland defines the enemy: ”America is a death-denying society…death is a taboo topic…death makes Americans uncomfortable so they run from …death is hidden in America because Americans deny it….” For America, Lofland’s home, we could substitute any high-income country—or even any high-income group within a poor country. “The consequences of all this denial and repression are,” continues Lofland, “asserted to be quite terrible: exorbitant funeral costs and barbaric funeral practices, inhumane handling of dying in hospitals, ostracism of the dying from the living, inauthentic communication with the fatally ill, an unrealistic, mechanical, non-organic view of life, and so forth.”

Lofland is dismissive of the idea of death as taboo: “One might consider it somewhat odd that the statement that death is a taboo topic in America should continue to be asserted in the face of nearly a decade of non-stop talking on the subject.” Talk, writing, and storytelling about death has continued unabated ever since and probably increased. It is probably fair to say, however, that there is much less familiarity with the experience of death: dying people, the signs of death being close, dead bodies, and the disposal of the dead.

A social movement also needs something to shoot for, and for the Happy Death Movement it’s some form of idealised premodern death, with the dying person at home surrounded by loved ones and calmly bidding them goodbye. Lofland is dismissive of this as well, including in her book stories of the dying being buried alive (in Samoa) and ignored while families party (in Tahiti).

As you would expect, the attempts to create new behaviours and beliefs around death reflect broader cultural trends, which Lofland identifies in the United States as “ ‘humanistic-counterculture’ denouncement of modern society in general, which denouncement emphasizes the Western world’s dehumanizing, unemotional, technologically dominated, inauthentic, and constricted character.” That cultural trend is alive and flourishing in most Western societies. “Why not,” asks Lofland, “with Carl Jung, speak of “the achievement of death” and view dying as the final creative task of our lives?” A director of spiritual services (what used to be called a chaplain) I met recently in a hospice told me of the tremendous pressure on people to have a “good death.” This immediately evoked for me the pressure on mothers to have a “good” or “natural” birth.

Emphasising that the Happy Death Movement is still forming, Lofland identifies how the movement will make dying better. Firstly, it’s essential to talk about it. For example, the Order of the Good Death, an organisation founded by a Californian mortician, has eight tenets—and three of them concern talking about death

“2. I believe that the culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.

3. I believe that talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.

7. I believe that my family and friends should know my end-of-life wishes, and that I should have the necessary paperwork to back-up those wishes.”

Secondly, death must be rearranged, moved from hospital to hospices and the home. Death in hospital is failure. Thirdly, we must legislate death with advanced decisions and assisted dying.

Lofland also identifies emerging components of the new craft of dying. Expressivity is essential, but it’s also important to not just embrace death, but to celebrate it. (I’ve done this with my talk, delivered once at the Edinburgh Festival, “Death: the upside.”) Finally—and for me surprisingly—the Happy Death Movement wants us to believe in immortality. Lofland describes how Elisabeth Kübler-Ross, who might be called the doyen of the Happy Death Movement and whose hugely influential book On Death and Dying proposed in 1969 the five stages of grief (denial, anger, bargaining, depression, and acceptance), came to believe in immortality. The pursuit of immortality, long a dream and arguably the unique selling point of Christianity, now attracts serious people and serious money. 

The other two components of the emerging craft of dying are expressivity and positivity. Talk and write about your dying and coming death and celebrate your coming death and the death of those you love. New rituals will be needed, and some like “living funerals” are beginning.

Lofland is a sociologist, an academic, an observer, but you feel that she is not in fully sympathy with the Happy Death Movement. Indeed, she conjures the idea of a Dismal Death Movement to counter the Happy Death Movement: “If expressivity comes to be widely accepted as the only way to achieve a decent death, the emotionally reticent will find themselves under great pressure to ‘share.’ If the idea that death and dying provide new opportunities for self-improvement becomes common currency, the chronic under achiever will find himself facing one more opportunity for failure. Not ‘getting off’ on death may become as déclassé as sexual unresponsiveness. Then perhaps, a ‘dismal death’ movement will rise to wipe the smile from the face of death and restore the ‘Grim Reaper’ to his historic place of honor.”

There is a little about medicine and healthcare in Lofland’s book, and nor does the Order of the Good Death have much to say on the subject. But I wonder how much medicine and healthcare—gigantic, well-funded enterprises—might come to fill the need for new ways to die. Ivan Illich certainly argued that that was the case in his book Limits to Medicine, published at about the same time as Lofland’s book. Death “is now that point at which the human organism refuses any further input of treatment…Health, or the autonomous power to cope, has been expropriated down to the last breath. Technical death has won its victory over dying. Mechanical death has conquered and destroyed all other deaths.” Indeed, it is by taking on death that “health care has become a monolithic world religion.”

All those who read Lofland’s book agree that it could have been published in 2018 not 1978 and be equally relevant. The struggle to create a new craft of dying is far from over, and those of us in medicine and heath care have a particular responsibility to think and act on medicine’s role in the struggle. Almost certainly its role should be smaller.

Complete Article HERE!