Category: Death Education

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Green Burial Wants to Clean Up American Funerals

Natural burials can remind us that death and grief are natural, too.

The Preserve at All Saints in Waterford, Michigan.

By Jake Maynard

Basil Eldadah assumed his father’s funeral would be simple. Years before, Basil’s father had taken steps to make the process easy on the family, purchasing plots and making arrangements. But in 2012, when his father died, Eldadah and his family discovered how complicated and impersonal the American funeral industry could be.

First, Eldadah learned that what his father had purchased was only the plot itself. Digging the grave, installing the concrete grave liner, and filling in the gravesite were not included. But the larger issue was that the cemetery required the use of a vault or burial liner: a concrete box that encases the coffin, keeping dirt from collapsing the casket. Eldadah’s family is Muslim, and it’s customary in Muslim traditions for a body to be placed directly in the soil. He described Muslim burial as “a process that reminds us of the humility of being from dust and returning to dust.” But most American cemeteries require concrete vaults or grave liners to prevent dirt settling at the gravesite—it makes the cemeteries easier to mow and eliminates the spooky depressions overtop graves—despite the fact that it is counter to the religious traditions of Muslims and some Jewish denominations. For Eldadah’s father, the best the family could do was to add some dirt to the inside of the vault.

>Later, as the grief began to lift, Eldadah questioned whether there was a more reverent, natural approach to burial. As an active member of his local Muslim community and as a researcher who studies aging, he knew that his experience wasn’t unique. “My father’s funeral really kind of planted the seed in my mind,” he told me. He eventually learned that there is a name for what he wanted: a green burial ground.

Green burial doesn’t have an official definition but generally refers to a range of cemetery practices that limit fossil fuel usage and the amount of human-made materials put into the ground. More broadly, the green burial movement wants to help people approach death with a more natural, and less commercial, outlook.

Green cemeteries substitute exotic hardwood caskets with renewable wood coffins or burial shrouds, and they don’t line graves with concrete. They shun mown lawns for native grasses and trees. Some green cemeteries mark graves with native stone or plant memorial trees; others don’t mark graves at all. They reject embalming as unnatural, unnecessary, and toxic. (Embalming chemicals contribute to high rates of cancer in mortuary workers.) Green cemeteries look more like nature preserves or parks than the orderly cemeteries we’re accustomed to.

The nonprofit Green Burial Council certifies cemeteries as green—it’s kind of like LEED building certification—and keeps tabs on the environmental impact of conventional burial. It says that each year American burials put more than 4 million gallons of embalming fluid, 20 million board feet of hardwood, 81,000 tons of metal, and 1.6 million tons of concrete into the ground. Cremation, promoted by the death care industry as the greener alternative, uses the equivalent of around 20 gallons of gasoline per cremation and vaporizes heavy metals (from dental fillings and surgical implants) into the atmosphere. While cremation conserves physical space, green burial conserves energy.

Burial wasn’t always so complicated. Embalming only gained traction among wealthy Americans during the Civil War, which essentially started the modern funeral industry. (Abraham Lincoln was embalmed for his funeral train, and reembalmed at many stops, but onlookers thought he looked nasty.) Concrete grave liners came later, allowing for today’s flat, uniform suburban cemeteries.

Generally speaking, laws governing burial are complicated and vague. In most states you can bury a loved one on your own property, but local zoning ordinances often contradict the state laws. While no states legally require embalming or grave liners, the funeral industry has made them so standard that in some places, they’re essentially requirements. Neither practice has any public health benefit, but embalming stretches the possible time between death and funeral. Embalming is popular only in the U.S. and Canada; in the rest of the world, it’s actually quite rare. Funeral homes have normalized embalming because it saves on refrigerator space and because they can sell larger funeral packages.

After his father’s funeral, Eldadah let his idea percolate until he found the right partner, one who’d also been surprised by the cost of a funeral. In 2019, Eldadah’s friend Haroon Mokhtarzada, a successful tech entrepreneur, received a call asking him to help fund the burial of a local community member. He was glad to help, but the cost rattled him.

“I was thinking it was going to be a couple hundred bucks and it was several thousand dollars,” he said. “And I came to learn that the average burial in Maryland is $10,500.” The national average, according to the National Funeral Directors Association, is about $9,000. (This chart shows how complicated itemized funeral expenses can be.) Mokhtarzada said, of the funeral’s cost, “There’s something that bothered me about that to my core.”

He asked, “Why does a hole in the ground cost $10,000?” The same use of embalming fluid, concrete, and hardwood that make death so polluting also make it expensive. According to the Bureau of Labor Statistics, funeral costs jumped 225 percent since 1986; GoFundMe hosted 125,000 memorial campaigns in 2020. Funeral poverty is an underreported crisis in America.

Eldadah had contacted Mokhtarzada previously about the project, but he was too busy to get involved. Seven years later, backed with his money and startup expertise, Mokhtarzada emailed Eldadah and said, “We’re going to make this thing happen.” Together, they set to work making metro D.C.’s first nonprofit green cemetery. If it works, it will be the most urban green cemetery in the U.S.

There are 82 cemeteries in America certified as green by the Green Burial Council (you can read about the certification standards here), but the movement has struggled to take hold near major cities due to the price of land. Pete McQuillin, who operates Penn Forest Natural Burial Ground near Pittsburgh, told me that it took him three years to find a property close to the city. In the nine years since Penn Forest opened, it has interred only 205 bodies. (Because people usually want to be buried next to their deceased loved ones, cemeteries are notoriously tough to get started.) But the number of burials is growing steadily every year, as does the execution of Penn Forest’s broader mission: It strives to be a multiuse park, hosting guided nature hikes, community roundtables on death, and a DIY coffin-making class.

Mokhtarzada and Eldadah have similar goals for their site, a woody, 40-acre plot in Silver Spring, Maryland, tucked between a concrete factory and a church. (The price? Almost $2 million.) When I first talked to them in July, they were excited to explain the project’s overarching goals. “We’ve started to envision a community-gathering place,” Mokhtarzada said. “Not just a creepy place where you only go to pay your respects and then you leave. But some place where people would want to spend quality time … a space where not only do the living serve the dead by providing simple, natural, and dignified burials, but also where the dead can fuel life.”

By December, they were feeling the weight of bureaucracy. In between fielding questions from their new neighbors about water quality and funeral traffic, the two men had poured $200,000 into the project before breaking ground. There were nonprofit lawyers, land-use lawyers, engineers, architects, permitting fees. And they were still struggling to come up with a name. Like burial, starting a cemetery was more complicated than anticipated.

While Mokhtarzada’s startup experience was helpful, he learned that the cemetery business is unique. “In a startup mode,” he said, “you just figure out as much as you need to figure out, you don’t figure out what this thing’s going to be in five and 10 years. But what I’ve found that was different in this creative process is we had to think decades into the future. We had to think in three dimensions in decades.”

To help with that part, Eldadah and Mokhtarzada hired architect Jack Goodnoe, who has designed some of America’s best-known green burial grounds. Goodnoe started designing conventional cemeteries in the 1980s and began working with green cemetery movement when the movement began in the late ’90s. While Goodnoe supports greening the death industry, he also thinks that green and conventional cemeteries need to learn from each other. The green burial movement has been led by charismatic industry outsiders—academics, environmentalists, spiritual types—with big ideas offset by a lack of knowledge about cemetery management. Goodnoe recommends that “when someone wants to start a green cemetery, they partner with a traditional cemetery that can bring all the legal, grief, record-keeping elements that they’ve learned from decades in the industry.”

Eldadah and Mokhtarzada don’t plan to work with a traditional cemetery, but they have implemented some conventional cemetery practices at Goodnoe’s recommendation. For example, some green cemeteries let people choose their own burial site anywhere on the property, which Goodnoe worries could lead to record-keeping issues for future cemetery managers. At their site, Eldadah and Mokhtarzada have taken Goodnoe’s advice of burying in one area at a time and evenly spacing gravesites like a conventional cemetery might.

They hope to open for burials in 2021 and have already generated some interest among the local Muslim community. But in order to fulfill their inclusive mission, Eldadah and Mokhtarzada will have to expand beyond green burial’s usual demographic. Hannah Rumble, an anthropologist who studies burial in the U.K., told me that green burial has been “quite a middle-class aesthetic and cultural practice,” and hasn’t yet become popular among the working-class people who could most benefit from lower burial prices (often less than half the price of conventional burial) and less upkeep responsibility. But traditions change slowly, she says, and as the last rite of passage, burial traditions are usually some of the last to change.

On a more spiritual level, Rumble has observed the way that green burial has influenced the grieving process of people she’s interviewed. She says, “The bereaved like to go over time to watch the trees grow, to watch the site developed to maturity, to watch the plants bed in. It’s interesting how their own emotional journey with grief has changed and how they see it reflected in the development of the natural burial ground. … And so now their visits are more about just going and enjoying the bird songs, seeing how the site’s developed, seeing what initiatives are going on. It becomes a kind of community, a community of practice.”

This sentiment is ultimately how the green burial movement overlaps their ecological and spiritual goals. Conventional cemeteries, with their permanent headstones and concrete grave liners, encourage us to think that even in death, we’ll last forever. What natural burial offers is the reminder that death and grief are like all natural processes: They change and evolve, grow and decay. Like Rumble says, “I think what’s really powerful about that ecological metaphor is it’s fairly timeless. And it’s one that, irrespective of your faith, people can relate to.”

Complete Article ↪HERE↩!

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Dying at Home May Improve Patient Satisfaction Surrounding End-of-Life Care

By Laura Hensley

  • Dying in the home can lead to greater satisfaction of end-of-life care, according to research.
  • Patients’ preferences around death should be respected when discussing palliative care options.
  • Dying in the home can not only benefit patients and their families, but can also reduce healthcare costs.

Older adults who die in their home are more satisfied with their end-of-life care than those who die in hospital settings, a new study has found.1

Researchers out of Johns Hopkins University analyzed data from the National Health and Aging Trends Study (NHATS) of Medicare beneficiaries with and without cognitive impairment who died at 65 or older to see if place of death affected their satisfaction of end-of-life care. The team found that the most common place of death for seniors with cognitive impairment was in the home. People without cognitive impairment were equally as likely to die at home or in the hospital.

Based on the seniors’ “last month of life” interviews, researchers found that participants were more satisfied with the end-of-life care they received when they died at home.

“Many people ‘bond’ with their home, which is known as place attachment,” Natalie G. Regier, PhD, an assistant professor at Johns Hopkins University School of Nursing and the study’s lead author, tells Verywell.

“Human beings, even ones who live alone, can actually experience a reciprocal emotional relationship with a place, meaning there is interaction with and investment in that environment.”

Why Dying at Home Can Lead to Improved End-of-Life Care

While Regier’s study was a secondary data analysis—meaning she was unable to do a deep dive into specific reasons behind satisfaction ratings—she says there are some hypotheses as to why people reported higher satisfaction ratings when they receive care at home.

Based on her own research and many other studies, people experience a comfort in being in their own home, “particularly during vulnerable and uncertain time periods such as coping with an illness.” For people with moderate to severe dementia or cognitive impairment, hospitalizations can be traumatic, she explains.

“The unfamiliar and often chaotic hospital environment can lead to anxiety, confusion, and disorientation for this population, and is associated with poorer end-of-life outcomes,” Regier says. “Furthermore, hospitals are usually not tailored for meeting the needs of people with dementia.”

Even for people without cognitive impairment, there are various reasons why palliative patients prefer to die at home, says Susan Enguídanos, PhD, an associate professor of gerontology at the University of Southern California. Enguidanos has researched home-based palliative care and has found that patients who receive in-home treatment report greater satisfaction with care than hospital patients.

She says while higher satisfaction rates may not specifically be tied to dying itself, it likely has to do with the type of health care they receive in the home, including nurses, social workers, doctors and chaplains. It’s also often preferable to be surrounded by family in the home rather than a more sterile environment, like a hospital, that lacks the same privacy and comfort.

Enguídanos points to a study that shows cancer patients who died at home had less physical and emotional distress and better quality of life at end of life compared with those dying in the hospital. The study also found that ICU or hospital deaths were associated with an increased risk of mental health distress for caregivers.2

Reduced Cost of Care

Aside from the emotional and mental benefit, people who received home care were less likely to visit the emergency department, resulting in lower costs to the health care system, according to one of Enguidanos’ studies.3

“Our hypothesis is that because they received more and regular care in the home, plus their caregivers received training in how to manage their symptoms [and] they had access to a nurse (and doctor if needed) 24/7, they had improved management and therefore had less need for emergency room visits and subsequent hospitalizations,” Enguidanos tells Verywell.

Need for Patient Planning Around End-of-Life Care

Based on research, it’s clear that patients’ preferences and feelings around end-of-life care can have a significant impact on the quality of their last days. Regier and her colleagues’ findings indicate that discussions of end-of-life care planning can help inform palliative policy and “facilitate greater well‐being at end‐of‐life.”

For patients with dementia, Regier says these end-of-life care conversations should happen as soon as possible. Preferably prior to the onset of dementia, or before dementia or other illnesses have progressed to more advanced stages.

“Conversations about goals of care help to guide the treatment approach, keep the lines of communication open, and make sure everyone is on the same page regarding what constitutes optimum care for the patient,” Regier explains.

What This Means For You

Patients should be involved in their end-of-life care planning, as research shows preference around care can have a significant impact on their well-being.

Enguidanos echoes this stance, and says that given the evidence of improved patient outcomes for home-based palliative care and lower medical costs, it makes sense to support this model of care should a patient desire it.

“I do believe we need to transform our payment structures to better support this type of care,” Enguidanos says. “Currently, there is no widespread payment structure to support home-based palliative care; in other words, Medicare does not pay for this care.”

>Regier says end-of-life planning needs to include more than just medical information or certain aspects of advance care planning, like preference for life-sustaining measures. This is because “patient preference for the actual place of death is often overlooked.”

This is especially true for seniors with cognitive impairment, she says.

“Research shows that very few people with dementia who are at end-of-life are treated with palliative care, despite the many benefits of this approach (e.g., decreased behavioral symptoms, decreased pain),” Regier says.

“There needs to be greater awareness among providers and families that a palliative and hospice care are wholly appropriate and beneficial for people living with dementia and not just the cognitively healthy.”

  1. Regier NG, Cotte VT, Hansen BR, Taylor JL, Wright RJ. Place of death for persons with and without cognitive impairment in the United States. Journal of the American Geriatric Society. 2021 Jan. doi.org/10.1111/jgs.16979
  2. Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. Journal of Clinical Oncology. 2010 Oct;10;28(29):4457-64. doi:10.1200/JCO.2009.26.3863
  3. Brumley R, Enguidanos S, Cherin D. Effectiveness of a home-based palliative care program for end-of-life. Journal of Palliative Medicine. 2003 Oct;715-724. doi:10.1089/109662103322515220

Complete Article ↪HERE↩!

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‘The Bitter Comes With The Sweet’

— Without Death, There Is No Life

By Mara Buchbinder

In the early days of the pandemic, my days were bookended by stories of death. I woke up each day hours before dawn to work on my book manuscript, happy to have a passion project to soothe my anxious energy. My book chronicles how Vermont patients, caregivers and health care providers navigated medical aid-in-dying, in the aftermath of legalization. In the morning, I combed through my notes, writing feverishly about dying, and in the evening, I absorbed the news of bodies accumulating around the world more quickly than they could be buried.

I have never been more acutely aware of my own mortality. I offered my husband detailed instructions about how to tend to my unfinished manuscript, should the need arise. We joked, with gallows humor, about how my death would make an ironic capstone to the book; he, of course, agreed to pen the afterword for the posthumous publication.

Studying medical aid-in-dying, and now living through the greatest pandemic in 100 years, has forced me to reckon with mortality. Over the five years that I’ve collected stories about death and dying, people have often questioned how I could study such a morbid topic. Isn’t it depressing? The answer is, anything but. Humbling and grounding, yes, and at times terribly sad, but never depressing.

An avid reader since childhood, I have always taken great comfort in stories. When the pandemic began, I realized that immersing myself in stories about death had actually helped me. Thinking about my own inevitable death is sad, but it doesn’t terrify me anymore. At 40, I hope I have a great many years left, but I’m also more or less at peace with my finitude.

Yet last spring, when I picked up Natalie Babbitt’s novel “Tuck Everlasting” to read to my 7-year-old son, I realized it was this book that first made me address my mortality, some 30 years ago.

If the concept of mortality was terrifying to me, the idea of immortality was even more so.

Published in 1975, “Tuck Everlasting” takes place in the 19th century, 87 years after the Tuck family unwittingly drinks from a magical spring that renders them immortal. The story is set in motion when a 10-year-old girl, Winnie Foster, accidentally discovers their secret. They bring her to their woodland cottage to persuade her to keep quiet, warning her of the catastrophe that would ensue if news of the spring were to become public.

The novel quickly charmed educators and parents, winning numerous literary awards. While it captivates young readers with its lyrical prose, its matter-of-fact philosophizing on life and death set it apart. In a key scene, Angus, the patriarch of the Tuck family, explains to Winnie that dying is an unavoidable part of the “wheel of life.” The bitter comes with the sweet. It is the difference between having a life and merely being alive. You can’t have living without dying.

The Tucks haunted my childhood. To my 10-year-old self, it seemed clear that the only thing scarier than dying was not dying. How awful it would be to outlive nearly everyone that you love! How bleak it would feel to be resigned to a life of complete social isolation. If the concept of mortality was terrifying to me, the idea of immortality was even more so.

This is precisely what the author had in mind. Babbitt wrote the book to tame the worries of her daughter Lucy, who was then 4-years-old. Babbitt wanted to help Lucy understand that dying was a natural part of the wheel of life, that not dying is much less desirable than it may seem.

Flipping cultural scripts on fears about death: this is the power of stories.

As a non-fiction author, I write for reasons not so different from Babbitt’s. I use real people’s stories to examine cultural fears about death — in my case, about lack of control over dying. Medical aid-in-dying offers what is, for many, a seductive vision of personal control over dying, and the promise of a peaceful, sanitized death. Yet such control often proves illusory, both because access to assisted death is much more complicated than it may seem, and because death, itself, is wily.

People have often questioned how I could study such a morbid topic. Isn’t it depressing? The answer is, anything but.

I think about a woman in her mid-60s I’ll call Candace, who developed metastatic cancer. Once it was clear that she was not going to get better, Candace decided to die on her own terms, with medical assistance. She procured the lethal prescription, which was no easy feat, because many physicians are reluctant to participate in the process. By the time she was ready to die, however, she was no longer able to ingest the medication.

The pandemic has made me even more sure that, like Candace, we are not in control of our destinies. But the Tucks weren’t in control, either. They waited passively, resigned to let the oppressive unfurling of time wash over them. In this sense, immortality’s promise of control over death is also illusory. It is poignant that the Tucks look forward to the day, every 10 years, when their sons return to the family cottage. During the pandemic’s eternal spring, when days bled into weeks and then months, I identified with this feeling, marking my days with UPS deliveries, as time moved ever so slowly.

During the pandemic, I have been in the fortunate position of being able to forestall illness and death with the appropriate precautions, such as staying at home. These measures should permit me to avoid the wrong sort of death. (There is universal agreement at this point that dying from COVID-19 is the wrong sort of death.) But I cannot avoid death altogether, nor (I think) would I want to

Now, 10 months into this crisis, my book is complete. The wheel spins on. The end of the pandemic no longer feels as far off and impossible as it did last spring. And still, I wonder what kind of story I am in. I marvel at that wonder.

Complete Article ↪HERE↩!

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Is End of Life Its Own Stage of Life?

A sociologist makes the case for embracing this period as a distinct life stage

By Lola Butcher

Deborah Carr, professor and chair of the sociology department at Boston University, has spent much of her career studying death and dying. That expertise led, in 2019, to an invitation to write an article in the Annual Review of Sociology about well-being at the end of life.

“When I started writing what I knew about things like pain and suffering at the end of life, it dawned on me that we need to interrogate: What is end of life?” Carr said. “We don’t actually have a clear definition.”

At the Gerontological Society of America’s annual scientific meeting last year, Carr proposed that “dying” or “end of life” should be considered a new life course stage. In an interview with Next Avenue, she discussed the merits of the idea.

Q: Why do you consider end of life its own life course stage?

Deborah Carr: The end-of-life period is longer than it ever was historically. A hundred years ago, people would die suddenly or shortly after becoming sick. Unfortunately, we are actually seeing an uptick of that short duration with COVID-19. But for most other leading causes of death among older adults — cancer, heart disease, chronic obstructive pulmonary disorder — there can be a very long time period between becoming sick and dying.

If we think about the end-of-life stage as something that we can have some agency over … it may demystify it.

As I started thinking about this expanded period, I realized that end of life is like any other life course stage. There are developmental tasks — things we should do — during this stage to ensure smooth transitions.

Just as we learn, as children, how to be a teenager and then how to be an adult, maybe we need to learn how to prepare for the end-of-life stage.

What are the other life course stages?

The main stages are infancy, childhood, adolescence, young adulthood, midlife and old age. Even though these stages make sense to us now, some of them are actually pretty new.

For example, the notion of adolescence didn’t even exist until the very early twentieth century because many would go from being children to adults before high school and college were widely attended, and when child labor was common.

Likewise, midlife, or middle age, is a pretty modern construction.

How does the end-of-life stage differ from old age?

I think it’s important that, culturally, we move away from the notion that old age equals death, because that is ageist.

Obviously, old age is among the most powerful risk factors for death, but about twenty-five percent of all people who die each year are under age sixty-five.

And many older adults are perfectly healthy; they aren’t in the end-of-life stage unless something happens like they get COVID and die a week later, for instance.

When does the end-of-life stage begin?

Some life-course stages have biological or legal markers. For example, adolescence generally correlates to puberty; in most states, people are legally considered adults at age eighteen; old age is typically thought to start at sixty-five when most people become eligible for Medicare and Social Security.

End of life is different in that the starting point is unclear. We can’t definitely state when the end-of-life stage starts, because illness trajectories are uncertain.

The important thing is that, once they start developing major chronic illnesses, people — whether they expect to continue living for one year or four years or ten years — should think about how they want to live during that stage of life. I’d encourage them to discuss the topic with family members, embrace it and take the steps that one needs to do in order to have that stage of life be as pain-free and peaceful as possible.

People could critique this idea on the grounds of ‘Well, how do you prove someone is in the end-of-life stage?’ I’m not out to prove anything, but just really to reshape our thinking of how we can prepare for, rather than avoid thinking about, the inevitable.

You mentioned ‘developmental tasks’ that need to occur at the end of life. What’s on the to-do list at this stage?

Just as you tell kids to eat their vegetables so they will be healthy as an adult, there are things that we can encourage people to do to prepare for the end of life.

Talk about what kind of funeral rites — if any — match your personal preferences. Talk to your loved ones about how they will survive financially without you. Encourage couples to have conversations about how the surviving spouse will manage finances and household tasks.

All of these preparations are things that I hope people are doing already. But often they don’t, because we as a society fear death. If we think about the end-of-life stage as something that we can have some agency over, something we can control to the best of our capacities, it may demystify it and really destigmatize it a bit.

You’re talking about something much bigger than filling out an advance care planning document, right?

Advance care planning is something that one should do early in life to help facilitate the transition to end of life. Have those conversations early and often because your preferences are likely to change over time.

Oftentimes, people do advance care planning too little, too late. For instance, when someone is given an opportunity to do a living will after they arrive at the hospital and is already dying or in severe discomfort, that’s not the optimal moment to do planning because the patient and family may be in distress.

So, we can think about advance care planning as something that we do earlier in life that helps to have a more satisfactory end-of-life period that accords with one’s wishes. It also can make the end-of-life period easier for loved ones. 

It’s really hard emotionally to make a decision for someone else’s end-of-life care. It helps when people who are in that stage of life have already brought their family members on board and talked about what their preferences, values and fears are.

Not to trivialize, but in some ways it’s like those old anti-drug ads: “Just talk to your kids about drugs.’ Just talk to your loved ones about end of life because it will help you all prepare.

Complete Article ↪HERE↩!

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When is ‘dead’ really dead?

What happens after a person ‘flatlines’

By and

How long should doctors wait after a “flatline” appears before they can declare a person dead? How can they be sure that heartbeat and circulation will not return?

The most common way that people die is after their heart stops beating. However, there is limited evidence for how long to wait to determine death once the heart stops. This missing information has repercussions for clinical practice and for organ donation.

A fundamental principle of organ donation is the dead donor rule: donors must be dead prior to recovery of organs, and organ recovery must not be the cause of death. A lack of evidence about how long to wait before declaring death creates a tension: if doctors wait too long after the heart stops, the quality of organs begins to decline.

On the other hand, not waiting long enough introduces the risk of going ahead with organ recovery before death has actually occurred.

Our interdisciplinary team of doctors, bio-engineers and experienced clinical researchers has spent the past decade studying what happens when a person dies after their heart stops. We focused on patients in the intensive care unit who died after life support was withdrawn, since these patients may also be eligible for organ donation.

In particular, we were interested in understanding whether it is possible for the heart to restart on its own, without any interventions like cardiopulmonary resuscitation (CPR) or medication.

A closer look at end-of-life flatline

Our recent study, published in the New England Journal of Medicine, presents observations of the dying process of 631 patients across Canada, the Czech Republic and the Netherlands who died in an intensive care unit. All patients’ families consented to participate in the research.

In addition to collecting medical information about each patient, we built a computer program to capture and review heart rate, blood pressure, blood oxygenation level and respiratory patterns directly from bedside monitors. As a result, we were able to analyze end-of-life flatline patterns for 480 out of 631 patients — including looking at whether and when any circulation or heart activity returned after stopping for at least one minute.

As it turns out, the classic flatline of death is not so straightforward. We found that human heart activity often stops and restarts a number of times during a normal dying process.

Out of 480 “flatline” signals reviewed, we found a stop-and-start pattern in 67 (14 per cent). The longest that the heart stopped before restarting on its own was four minutes and 20 seconds. The longest time that heart activity continued after restarting was 27 minutes, but most restarts lasted just one to two seconds. None of the patients we observed survived or regained consciousness.

We also found it was common for the heart to continue to show electrical activity long after blood flow or pulse stopped. The human heart functions as a result of an electrical stimulation of nerves that causes the heart muscle to contract and contribute to blood flow — the pulse you can feel in your arteries and veins.

We found that the heart rate (electrical stimulation leading to movement of the heart muscle) and pulse (movement of blood in the veins) only stopped together in 19 per cent of patients. In some cases, electrical activity of the heart continued for over 30 minutes without resulting in any circulation of blood.

Why understanding death matters

The results of our study are important for a few reasons.

First, the observation that stops and restarts of heart activity and circulation are often part of the natural process of dying will be reassuring to doctors, nurses and family members at the bedside. Intermittent signals on bedside monitors can sometimes be alarming if observers interpret them as signs that life is unexpectedly returning. Our study provides evidence that stops and starts are to be expected during a normal dying process without CPR, and that they do not lead to regained consciousness or survival.

Second, our finding that the longest pause before heart activity restarted on its own was four minutes and 20 seconds supports the current practice of waiting five minutes after circulation stops before declaring death and proceeding to organ recovery. This helps to reassure organ donation organizations that practices of determination of death are safe and appropriate.

Our results will be used to better inform policy and guidelines for the practice of organ donation internationally. For donation systems to work, when someone is declared dead, there must be trust that the declaration is really true. Trust allows families to choose donation in a time of grief and allows the medical community to ensure safe and consistent end of life care.

This study is also important for improving our broader understanding of the natural history of death. We have shown that figuring out when dead is really dead is perhaps not so simple. It requires careful observation and close physiologic monitoring of the patient. In addition, it requires an understanding that, just as in life, there are many patterns that the dying process can take.

Our work is a step towards appreciating the complexity of dying and suggests we must move beyond the idea of a straightforward flatline to indicate when death has occurred.

Complete Article ↪HERE↩!

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Grave matter

— Germans seek new ways to talk about dying

Mourning speaker Louise Brown in Hamburg.

Lockdown and a hit Netflix series are inspiring alternative grieving rites, from chocolate and painted stones to memorial workshops

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On a plane tree-lined shopping street in Berlin’s fashionable Gräfekiez neighbourhood, two children are glued to the front of a brightly lit ground-floor office space, decorated with the understated minimalism of a design agency.

The object of their curiosity is a Lego window display, showing a miniature cemetery and a coffin carried by four tiny pallbearers, complete with black top hats.

“I love this”, says their mother as Birgit Scheffler, the co-owner of funeral home Das Fährhaus (The Ferry House), steps out of building’s front door. “It would be nice if death becomes less of a taboo for my kids’ generation than it was for my own.”

Das Fährhaus’ inviting exterior is a deliberate contrast to traditional funeral parlours, who usually have “blacked out windows or drawn blinds, and maybe a dead fly lying on the window sill”, as Scheffler put it.

Specialising in alternative or bespoke funerals, her undertaker’s business is one of several ventures that are currently brightening up a German way of death that used to be considered one of the gloomiest, most ritualised and rigidly regulated in Europe.

“In postwar Germany, our grief culture was shaped by the legacy of the two wars”, said Scheffler, 43, who used to work in marketing and distribution for a media company before retraining in 2017. “In a culture that was focused on building something new from the ruins, death was pushed aside.”

The psychoanalyst couple Margarete and Alexander Mitscherlich famously diagnosed Germany with an “inability to mourn”, a phrase that was amplified by the 1968 student movement and has since echoed through the country’s postwar history.

Coronavirus, however, is proving a catalyst for a new way of talking about mortality. “Death is suddenly at the centre of our lives”, Scheffler said. “The first thing many of us do when we wake up is look at the number of people who have died in the last 24 hours.”

A national conversation about dying has captured the radio waves and television screens. In My Perfect Funeral, a critically acclaimed new series for radio broadcaster Deutschlandfunk, interviewees describe how they want to be put six feet under.

Netflix’s recent The Last Word, meanwhile, stars German comedy star Anke Engelke as a widow who reinvents herself as a eulogy speaker. “There is no wrong way to mourn”, says Engelke’s voiceover in the concluding episode. “Death is only terrible if you take it seriously.”

Scheffler and her co-owner Sahra Ratgeber opened Das Fährhaus in August, at a time when neighbouring shops were struggling with social distancing requirements and losses incurred during the spring lockdown.

New hygiene rules have also proved a burden for undertakers, limiting the number of people allowed to attend funerals and requiring embalmers to wear additional PPE. Open-casket funerals have been banned; the bodies of those who have died of or with Covid-19 are buried in body bags.

Yet among bereaved families the lockdown has inspired creative new ways to send off the departed. This year, Das Fährhaus has organised a funeral in which mourners were allocated time slots to adorn the grave with painted stones rather than the conventional flowers. At another, family and friends dropped chocolate bars rather than sand onto the coffin of a deceased chocaholic.

Her business offers mourners the opportunity to build their own coffin or work with a ceramicist to make a bespoke urn. “The more elements of the funeral relatives or friends can create themselves, the better.”

Increasingly, she said, people were getting in touch to put down specific instructions for their own funeral in writing: one woman dreamt of being buried in her wedding dress, a composer wanted to make sure some of her works were burned alongside her.

A heightened sense of one’s own perceived uniqueness may be associated with the much-derided “snowflake generation” of the 2010s, but Scheffler said she has noticed a change across all ages. “Even people in their 70s and 80s are becoming more creative.”

Outside the German capital, with its high tolerance threshold for alternative lifestyles, more traditional last rites still prevail, said Louise Brown, who presents the My Perfect Funeral podcast. A Hamburg-based journalist for print and radio, Brown has since 2015 also worked as a Trauerrednerin, a freelance “mourning speaker” for those who don’t want a eulogy to be spoken by the clergy.

While the tradition of such “free speakers” goes back to the free religious movement of the 19th century, other aspects of the typical German funeral remain unusually heavily steeped in tradition. The country is one of the few in the world where coffins or urns must be buried in a cemetery, the so-called Friedhofszwang, and where scattering the ashes of the cremated or dividing them between family members is banned.

“Most Germans still have a small-c conservative attitude to death”, said Brown, 45, a dual British-German citizen. “The organ music at the start of the funeral, the church bells on the walk to the grave: to many people these rituals still matter”.

What was changing, she said, was the bandwidth of what could be said in a eulogy: “People want more personalised speeches, and they no longer want me to skirt around the conflicts and the difficult phases in a person’s life.”

Interviewing family and friends in preparation for her speeches, said Brown, was like leafing through a photo album: “Often the funniest, most honest and authentic pictures are filed loosely near the back pages. The pictures that were taken on the fringes of the official photo session on a holiday, after an award ceremony or a 50th birthday. The pictures no one tried to pose for, the ones we thought were too blurry or out of focus. In a funeral speech, these are often the images that the bereaved most identify with.”

The pandemic has also constrained the jobs of mourning speakers, forbidding not only communal singing but also the customary post-funeral meet-up over coffee, which Brown says can be more important than the funeral itself.

“After the body has been laid to rest, there is usually a moment where the bereaved are both still very vulnerable and very open with each other. The intimacy of these gatherings isn’t something that you can recreate in a Zoom call.”

In times of Covid-19 families are increasingly opting for cremations, in the hope they can postpone the communal get-together until after the pandemic is over (urns, unlike coffins, can be put into storage for up to six weeks): according to Germany’s national association of undertaker’s, cremations now make up 70% of all funerals.

But even before Germany’s severe second wave and the ensuing Christmas lockdown squashed hopes of get-togethers in the near future, many had started looking for alternative new rituals. Graphic artist Anemone Zeim started her “remembrance workshop” Vergiss Mein Nie (Forget Me Never) seven years ago, helping bereaved people to come up with creative projects that conserve memories of their lost ones: films cut together from old Super 8 footage, scarves recycled from a late grandmother’s favourite jumper, or lampshades patterned with a deceased friend’s handwriting.

“You can’t solve your grief with a checklist”, said Zeim. “You need to get creative to find individual solutions. You need to use your hands to stop you getting trapped in your brain. That’s what we help with.”

In recent months, requests for her agency’s services have doubled, with emails flooding in not just from the Hamburg area where her business is based, but from across Germany, Austria and Switzerland.

So-called “grieving tools” sold via Forget Me Never’s website, such as funeral cards, an “anger capsule” for writing down unresolved feelings towards the deceased, or “flower tears” containing bulbs and a clump of soil, have been in high demand.

“We’ve been working flat out”, said Zeim, “not necessarily because more people have died because of coronavirus but because people who have suffered a loss have been shacked up in their own four walls. There are advantages to that too: you don’t have to deal with the social stigma of grieving in public. But the danger is that you can become wrapped up in your sorrow.”

Zeim said she expected demand to keep on rising in the new year. “The process of mourning can take months or years, and not just individuals can mourn, but societies too. We as a society are already grieving for the toll that this pandemic has taken of us. We just haven’t realised yet.”

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Race, Socioeconomics Are Largest Barriers to Hospice and Palliative Care

By Holly Vossel

Race, ethnicity and socioeconomic status are the leading differentiating factors fueling disparities in hospice utilization. Recent research reflects mounting concerns about inequitable access to hospice and palliative care across the United States.

Researchers from the John Hopkins University School of Nursing in Baltimore examined March 2020 data from three national health care databases that outlined disparities in hospice and palliative care. Of the studies the researchers assessed across the PubMed, Embase and CINAHL EBSCO databases, 70% described differences in access outcomes to hospice and palliative care by ethnicity, race or socioeconomic status.

According to authors of a 2021 American Journal of Hospice and Palliative Medicine research article, “there is growing evidence of disparities in access to hospice and palliative care services to varying degrees by sociodemographic groups.”

Studies have shown that demographic disparities can limit the scale of hospice. Roughly 82% of Medicare decedents in 2018 were Caucasian, according to the National Hospice & Palliative Care Organization (NHPCO). Comparatively, slightly more than 8% were African-American; 6.7% were Hispanic, and 1.8% were Asian. That year, only 0.4% of Medicare decedents were Native American.

Hospice providers have increasingly strategized to improve access to end-of-life care among these historically underserved populations, seeking to bridge racial divides to hospice and palliative care. Addressing demographic disparities in hospice utilization can ensure more patients receive quality care at the end-of-life, as well as open untapped markets to hospice providers.

According to the study authors, a main objective was to highlight the range of sociodemographic groups affected by inequitable hospice and palliative care access. The research examined disparities across five domains of access, with 60% of studies emphasizing acceptability, affordability and appropriateness as primary barrier points. Other domains included approachability and availability of these services.

Other data included in the body of research found disparate access based on variables such as age, gender and geographic location, such as remote rural areas.

An objective of the study was to outline implications for future research, policy and clinical practices that would improve access for underserved communities.

Underlying factors contributing to disparity issues have received little systematic attention, according to the authors, who indicated that public policy initiatives will be needed to bridge these divides..

“This integrative review highlights the need to consider various stakeholder perspectives and attitudes at the individual, provider, and system levels going forward,” said the study’s authors. “[And] to target and address access issues spanning all domains.”

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