Transition Green Burials is Promoting the Growth of This Eco-Friendly Practice

Climate change is on everyone’s mind as initiatives for renewable energy and sustainable public habits adapt to a more environmentally-friendly approach.

While numerous avenues for reducing the adverse impact of energy production and ocean contamination dominate most of the narrative around preserving the ecosystem, many more obscure and often overlooked practices lead to the accretion of environmental contaminants.

One of those areas is the traditional Western approach to burial practices and its subsequent impact on local ecosystems. Embalming fluid, typically composed of formaldehyde, ethanol, and water, is commonly used in burials throughout Western culture to preserve bodies for funeral services before being put to rest.

However, the proliferation of costly funeral services has led to increased exposure to formaldehyde, both to individuals who work with it directly and the environment. Compounding the issue is the myriad metals — such as bronze and steel — that are laid to rest during funeral services that do not readily compose in the soil. As demand for cemetery land undoubtedly grows, the adverse impact of the contaminants synonymous with funeral practices grows.

Transition Green Burials is a company focused on promoting the conversion to more eco-friendly burial practices, known as ‘green burials’ or natural burials.

Identifying Sources of Burial Pollutants

Formaldehyde produces the most concerning ecological threat with common burials practices because of its widespread use and identity as a dangerous animal carcinogen.

Highly toxic to animals, formaldehyde is implicated in cancer, nervous system disorders, and lateral sclerosis. Formaldehyde can also break down into urotropine during decomposition, an anti-bacterial chemical commonly used in antibiotics for bacterial infections, but that is harmful to the natural bacteria in the soil.

Pesticides and herbicides are often used in the internment process too, compounding the negative effects of formaldehyde on the soil surrounding burial areas. The downstream effects of the chemicals used in the internment process can eventually even lead to contamination of underground water sources.

Outside of common internment practices, cremation processes also lead to the emission of mercury and toxic plastic into the environment. Further, high carbon loads are needed for the cremation process, leading to increased carbon emissions, one of the fundamental focuses of environmental initiatives like The Paris Climate Agreement. With nearly 50 percent of Americans selecting cremation today, few realize the pollutants that are dispersed into the air from the procedure.

Many conservation groups, like the Green Burial Council, are seeking to promote more eco-friendly practices by limiting the use of embalming fluids, herbicides, and pesticides in the process. Further, some groups are promoting the use of biodegradable coffins, design to break down over time, mitigating the long-term impact of steel or brass caskets that can destroy habitats as burial grounds expand.

Transitioning to Fixed Cost Green Burials

The Green Burial Council cites the rise of certified green burial sites across the US as an indication of the legitimacy of their cause, and their emphasis on protecting worker health, reducing toxic pollutants, and promoting habitat conservation is gaining traction among various burial grounds and activists.  

Similarly, Transition Green Burials is taking a hybrid approach to the issue with a focus on both the environmental impact and financial advantages of green burials through their TransitionCoin, which is designed to incentivize people to change conventional burial practices.

TransitionCoin provides a fixed cost for green burials — including all of the associated services required in the course of the burial. The targeting of a fixed price is derived from the rapidly increasing cost of funeral home services, which can reach as high as $25,000 and can lead to financial struggles among grieving families.

With a fixed cost for any green burial, people who select TransitionCoin can reduce financial costs and contribute to the growing Green Burial Movement.

The conventional burial practices among Western countries using caskets and multiple proceedings through a funeral home is also more of an isolated and recent phenomenon that began following the Civil War in the US. Several religions — including Judaism — forbid the embalming of the deceased out of religious tradition, and preserving chemicals or embalming fluid are also rarely used in Islamic burials.

Green burials grounds and services have also emerged across the US already. States like California and South Carolina have certified green burial preserves set up that are registered with the Green Burial Council. The Green Burial Council provides certified standards for funeral services, cemeteries, and burial product manufacturers. There are currently 39 states with funeral providers accredited by the Green Burial Council for eco-friendly burials.

The notion of analyzing green burial practices is one of the more obscure concepts within environmental conservation, but, nonetheless, is important to take into consideration as the widespread use of formaldehyde and pesticides continue. Transition Green Burials and the Green Burial Council are actively promoting the shift to a more eco-friendly approach, and it is beginning to gain traction among both environmental activists and funeral parlors.

Complete Article HERE!

How To Grieve When A Loved One Chooses To Die

By Chloe Gray

My great grandma, or Mia, as we knew her, was 100 when she decided she was ready to die. I found this out through a nonchalant conversation with my granny, her daughter, just after Christmas. She was eating a bowl of porridge at the breakfast bar, and said: “Mia wants to go, and that’s legal in Canada.”

Was I shocked? Not really. Although I didn’t actually know that Canada, where she had lived all her life, offered medically assisted dying (MAiD), my family are the type to take things into our own hands.

It’s a weird thing, euthanasia. It’s something you’re taught about in RE lessons at school, debating whether we have a right to ‘play God’. It’s something I agreed with as a faraway idea that I’d never have to consider. Something I thought was good in theory but hadn’t ever put any serious thought into the practice.

When I learned about Mia, I agreed with it still. Everyone I told did too, commenting on how brave her decision was and how amazing it was that she had this ‘opportunity’. They may have been thinking about the procedure itself rather than offering support but that was okay, because this was, overall, A Good Thing.

Meanwhile, with my family, talk swiftly turned to logistics. Timetables detailing who would be where and when were emailed around and the bank split Mia’s estate equally, with cheques ready to be collected by her children on the ride home from the facility. It helped the Canadian side of the family to deal with it Monica Geller-style, working pragmatically through the practical elements of her life.

“We’re more open to things that are predictable,” says Dr Anna Janssen, a psychologist specialising in palliative care. “There’s something safer about it, and that means we can be more flexible in our thinking and more open with ourselves and each other.”

But while they were handling the logistical side, it became very clear that we needed to introduce this flexibility into the emotional side of things, too.

The ‘five stages of grief’ ends with ‘acceptance’. The problem here was that for Mia to go with our blessing, we needed to accept her death before she actually died. That’s an unchartered process; grieving while someone is still alive and well(ish) feels weird. My auntie Penny summarised it perfectly, saying she felt she was going through grief sideways, like a breech birth.

Feeling emotion with a deadline meant we had to sprint through the confusion, the sadness, the relief of it all. If we had been Monica about the logistics, we Chandler-ed around the feelings part somewhat chaotically. But we still all felt weirdly…lucky? “With assisted dying, everyone involved has choice in the death,” explains Judy Tatelbaum, author of The Courage to Grieve. “That makes a great difference. Anticipatory grief is very healthy.”

But I was worried about what the minutes and days after she died would bring, seeing as we had already ‘grieved’. “Maybe the grief afterwards is easier, as some feelings have happened already,” said Dr Janssen. “But eventually there will be something new, because the context has changed, and you can’t feel it until the person has actually died.”

And so the 9th of January came. I asked not to know the exact time she was meeting her doctor, because what do you do in the minutes that someone you love is dying? In the most extreme version of the Schrödinger’s cat experiment, I went into a meeting, curious about whether she’d still be alive when I came out. She wasn’t. But there was an email telling the whole story, including how she had greeted the doctor by asking if he was the nice man who was going to help her.

Yes, my experience introduced a new closeness to my family. But it highlighted a flaw in the current MAiD plan. The message from the guidelines, the ethical debates and the psychologists I’ve spoken to is that assisted dying should be about having autonomy. It should make it easier, because you plan and prepare for the place, time, aftermath and even the feelings. But MAiD is such new territory that there are the same unknowns as with ‘regular’ dying.

Up until now, humans have only ever died after suffering through old age or illness or suddenly and shockingly in an accident. Those five stages of grief have been based on these same experiences over thousands of years. Now, suddenly, we’ve introduced a model where death can be scheduled into our diaries, and we can’t just apply the same rules. There are no history or self-help books to teach us how to navigate a brand-new type of grief that brings up a totally different, sporadic, rushed and uncertain feeling.

While there are articles and research papers discussing ethical, religious and legal boundaries, all the conversations have forgotten the people, families and feelings. And maybe that’s because, as Dr Janssen pointed out to me, it’s easier to discuss facts and figures than it is to discuss emotions.

For my family, MAiD was the first time we all properly discussed dying. Perhaps this is the taboo-breaking policy the world needs? You can’t send out a ‘save the date’ without telling people what for, after all. But to stop the turbulence, there’s still a grief taboo that needs to be broken. “We need to talk about the psychology of death and grief, but also the psychology of living. We talked about the death, but not about how we’re then meant to live well,” said Penny.

For families going through MAiD this year, in five years, or further in the future, when it could be a global policy, the system will benefit if we open up. “At the moment we don’t talk about it enough to know whether that [five stages] model requires more thought,” agrees Dr Janssen. “In my academic brain, I’m thinking we need to ask what MAiD means for people, but really, we’ll simply hear more if we take the time.”

My granny has since told me not to be shocked if she asks for MAiD. Is that a conversation she would have had with me if it wasn’t for Mia taking the plunge? Probably not. And while I haven’t yet applied my newfound skill for discussing death with anyone else, I’ll no longer hold back – especially when talking about my own.

Complete Article HERE!

What We Talk About When We Talk About Death

By Kelsey Osgood

One sunny Thursday evening in June, eight people, ranging from thirty-somethings to senior citizens, sat around a table at the Manhattan Jewish Community Center nibbling on cookies.

In front of them stood Sally Kaplan, one of three facilitators present from the organization What Matters, a New York City-based not-for-profit that facilitates group and individual conversations about advanced care planning. Sally interrupted the snacking to provide the group with a directive: pair off with the person next to you and talk about when you first realized you were mortal.

The participants looked around at each other; a few nervously giggled. There was a moment of uncertain silence. And then, everyone turned to their partner, and a rush of words poured forth. Death, it seems, can be confronted.

The What Matters event is just one example of a surge in Jewish programming focused on end-of-life issues, from speeches to workshops to unstructured discussions reminiscent of Death Cafes, where strangers meet over coffee and cake to talk about any topic related to death they so choose. (I’ve attended and written about death cafes before, although at the earlier ones I attended, participants ate pancakes or Chinese food rather than desserts.) The first “café mortel” was held in Switzerland in 2004. Since then, the movement has spread globally: from living rooms in Cincinnati to (thwarted) plans for a permanent café in London to China, where sickness and mortality remain taboo.

And the death café now has Jewish equivalents: Over the past years, death café-esque events have been held at Jewish community centers, senior homes, synagogues, and even mortuaries. Most recently, a coalition of Westchester County, New York synagogues organized a series[ of “death cafes” (the events were more structured than the traditional café mortel) centered around subjects like Jewish funerals and the afterlife in traditional Jewish thought. In Israel, Rabbis Miriam Berkowitz and Valerie Stessin, who founded the pastoral care initiative Kashouvot, have also hosted death cafes in the past. The Dinner Party, a network of meal-based gatherings for young adults who have experienced loss, currently offers kosher dinners in New York City.

In 2016, Death Over Dinner, an American initiative similar to Death Cafe, partnered up with IKAR, a Los Angeles-based non-denominational Jewish community, and Reboot, a nonprofit Jewish think tank, to launch Death Over Dinner: Jewish Edition.

“We launched [the pilot] on Yom Kippur, because that is the quintessential Jewish moment of facing our mortality,” says Francine Hermelin, the creative director of Reboot. Though Reboot and Ikar have hosted dinners themselves, in addition to having partnered with organizations like Moishe House and the Contemporary Jewish Museum of San Francisco, they also offer an online questionnaire that helps guide a potential host to stage a dinner in his or her own home. They soon plan to add printable cards with verbal prompts, including quotes from psalms, Talmudic wisdom, and food for thought from contemporary rabbis, as an additional resource.

“[This initiative] is to make that personal shift, and ultimately a cultural shift, where talking about death is no longer a conversation we’re afraid of but a conversation that we are embracing,” Hermelin says.

The increased focus on mortality in recent years is likely the result of a combination of factors: an aging population living increasingly longer and facing unprecedented healthcare situations, a greater openness towards talking about historical taboos generally, and a growing consumer interest in wellness, including a concept of “the good death.” And Jewish initiatives focused on death and mourning want to take part in this larger dialogue, using spirituality and Jewish tradition as a foundation. Indeed, a 2017 Pew study found that “geographically and theologically diverse” faith communities were uniquely suited to address concerns around death and mourning, even for those with no prior religious affiliation.

“We [in the Jewish community] seized upon this wave,” says Kaplan, who points to books like Atal Gawande’s On Being Mortal and Paul Kalanithi’s When Breath Becomes Air as examples of the trend. Though What Matters is non-denominational––Kaplan describes it as “value neutral and person-centered”––Kaplan says she sees confronting mortality through discussion as a “very Jewish” enterprise, one she feels is reflected in Jewish texts. “People are surprised that there are so many Talmudic stories that deal with advanced care planning!” For further insight, Kaplan referred me to Rabbi Mychal Springer, Director of the Center for Pastoral Education at the Jewish Theological Seminary, who cites the story of Rabbi Yehudah Ha-Nassi, who was unable to die while his students were incessantly praying for him, until his handmaid dropped a jug from the roof and distracted them. In the moment of silence, Ha-Nassi was able to depart peacefully. ” This is a classic example of the way the rabbis were saying we shouldn’t prolong the dying process,” Rabbi Springer said.

Support doesn’t always come in the form of face-to-face groups: Lab/Shul, a creative Jewish community based in Lower Manhattan, operates an initiative called Kaddish Club, which includes a monthly potluck dinner in New York City, and a 15-minute weekly phone call they’ve dubbed Virtual Mourners’ Kaddish. During the calls, which began in 2014, the far-flung bereaved reflect on their departed loved ones, share some wisdom, and then recite Kaddish together.

“We’ve had folks call in from all over the country and all over the world,” says Sarah Strnad, Lab/Shul’s Director of Operations. “A lot of the traditional options [i.e. daily kaddish in a synagogue setting]… don’t always work in our modern lives.” Strnad says one of the most moving things about the calls is how they end up becoming micro-communities. “Even on the virtual calls, when people might never see each other in person, they remember each other’s stories and they can give each other support week after week.”

Of the current offerings, few are Orthodox in orientation. This might be because those who identify as Orthodox see processes around death as strictly prescribed ––decisions about life support deferred always to the ordained, mourning periods a certain length, prayers predetermined –– and therefore not necessary to hash out.

But Elad Nehorai, founder of Hevria and Forward contributor has imminent plans to hold a death café that will include a more observant audience (though he hopes to provide a space for the observant, he stresses that anyone is welcome). Nehorai, who has attended “secular” death cafes in the past, told me, “It was actually my fascination with death that caused me to choose to be Hasidic after growing up secular. Death has this fascinating power to force us to face what we really believe. Even as believers, we must face our beliefs in a brave way.  Death forces us to do that.” (Full disclosure: Elad and I collaborated in organizing this event.)

During the course of my writing this piece, I attended my grandfather’s memorial service, tried to comfort a friend whose loved one was gravely ill, and heard a rabbi speak about ministering to a father grieving for his child as one of his first clerical duties.

Even though I had thought it slight hyperbole when she said it, I realized Francine Hermelin’s assertion that “we’re always experiencing death” was absolutely true. Though we may find it difficult to face our end with courage, as Nehorai hopes we can, we should do our utmost to be as prepared, emotionally, logistically, and spiritually, when the time inevitably comes, for as it says in Genesis, “For you are dust, and dust you shall return.”

Thankfully, there is increasingly more out there to help us do just that.

Complete Article HERE!

For this Hong Kong undertaker, every working day is a matter of life and death

Ogden Chan puts his best into making sure bereaved families are taken care of but admits being detached is a necessary part of the job

By Stephanie Tsui

January was a busy month for undertaker Ogden Chan Yan. “It’s peak season for us because more people are dying due to the fickle weather, and many families don’t want to wait until after the Lunar New Year to bury their dead,” the 36-year-old says.

Rows of cardboard boxes containing the ashes of his clients’ loved ones line the shelves of Chan’s shop in Hung Hom. His clients have left the ashes for safekeeping until their deceased are assigned columbarium niches. Chan reckons there are almost 200 of these boxes.

“It’s the typical Hongkonger’s fate: the living can’t afford homes, and the dead can’t find final resting places.”

It has been seven years since Chan joined the industry as an apprentice. Although he applied for the apprenticeship “out of curiosity”, his interest in the funeral sector began in his early teens.

“I wanted to be a mortuary makeup artist because I was under the impression that people in the funeral business made a decent living because there’s always going to be a demand for the service, and I liked how it was something of a craft.”

But that initial perception was somewhat misguided. Chan says that his business has only recently become profitable. Before, he was barely getting by. He now oversees everything from preparing documents and booking cremation services to planning religious ceremonies. As a nod to his childhood dream, he also acts as a makeup artist for his clients’ loved ones.

“I talk to the corpses when I put makeup on them because I believe that our consciousness remains even after we die.”

After a while, he adds: “That said, I’ve never seen a ghost.”

Chan says he has been fearless all his life, even as a child, when he saw a corpse for the first time lying in a construction site in mainland China. The second time he saw a corpse was before he joined the industry, when he was volunteering for a service for inmates. The corpse was already decomposing.

“What impressed me was not the appearance of the corpse – which looked like a zombie out of a video game – but the smell.”

The smell of decay was something Chan had to get used to as soon as he became an undertaker’s apprentice, as was staying detached from clients and their grief.

“In time, I adopted a somewhat dispassionate view of death. As a service provider, I get satisfaction from organising a successful service. After all, it’s the last ceremony a person ever has on this Earth.”

But when Chan presided over his father’s funeral service five years ago, things got personal.

“While making the arrangements, I kept thinking of the times I’d spent with my father. What helped with my grieving process was the fact that I knew exactly what had to be done after his death.”

Chan says he is happy to see that Hongkongers have become more willing to explore and discuss issues related to death, but believes education about death and dying should start young.

“I’ve seen four or five year-olds bawling at their parents’ funerals. They’re old enough to learn the meaning of life and death.”

At that, Chan offers his take on life: “Don’t waste time. Even if you’re given 80 years to live, it’s still not enough. Do as much as you can while you’re around, so when you’re on your deathbed looking back on your life, you can think about all the marvellous things you’ve done.”

So, what is on Chan’s bucket list?

“I want to get a bachelor’s degree. And, like every other Hongkonger, I want to be able to afford my own home.”

Complete Article HERE!

How to die the way you want

Tackling the tough questions over a cup of tea or coffee

By

We’re all dying, every one of us.

But we learn early on that despite the fact our lives are universally finite, most people don’t want to talk about it.

We’ll talk sex, we’ll talk drugs, we’ll even talk money—but not death.

That could be changing with the proliferation of so-called Death Cafes, informal get-togethers in cities across America, Europe and Asia, where people eat a little something, drink some coffee maybe and talk about, well, the inevitable.

The mission is to revamp typically depressing and urgent end-of-life discussions to more leisurely “Everything-I-Wanted-To-Know-About-Death-But-Was-Afraid-To-Ask.”

The conversation ranges, and depends on the group of people who’ve gathered: anything from how much a funeral costs to the details of a “green” funeral (think: corpse as compost) to tips on how to talk to your family members about your own funeral.

There’s a range of people who attend, too, from someone who had a death in the family and wants to be better prepared next time, to health care providers who want a different perspective on dealing with death. They range in age from 20-somethings to 90-somethings.

The object: to turn death from a feared end to something that is part of life.

“Death Cafés change the way you live in the most profound and wonderful way,” says Kim Mooney, 67, who runs monthly meetings in Longmont, Colorado.

Mooney even held a few events in a mortuary. “I like to say it’s the only time you will walk in and walk out of one, so you might as well take advantage of it.”

Death café hosts tend to have a sense of humor.

Death on twitter

If you want to confirm the popularity of the death positive movement, just go on social media. There’s The Death Café Facebook group, which lists times and dates of meeting and has more than 50,000 likes and followers. 

Or you could follow Death Café on Twitter

Advocates say the meetings allow people a low-pressure way to express fears about the Great Unknown; to chat about the way other cultures handle death; and to share practical information, such as learning the nuts and bolts of filling out end-of-life forms.

Talking with strangers, hosts say, is often an easier way to broach the topic before launching a conversation about death with loved ones.

Lizzy Miles is a hospice social worker who hosted America’s first café in 2012 in Westerville, Ohio. She baked cookies in the shape of tombstones with grey icing and “Death Café” where the epitaph normally goes.

She is one of more than a 100 Death Café hosts in this country. She’s still hosting—and still making treats—for nearly a dozen people who show up each month.

Yes, these are the cookies Lizzy makes for her Death Café guests in Ohio.

“No one ever comes to a Death Café already uncomfortable talking about death,” she says. “If you are, you’re not going to come. We have a lot of sandwich generation people, who are taking care of their parents.”

Miles is so committed she even traveled to a Death Café in Hong Kong—“on my own dime!”—to see what it was like. 

“It was amazing, people were speaking English and Mandarin and Cantonese,” she says. “And I thought ‘Oh my gosh, all these different languages. This is pretty cool but almost exactly the same.’” 

Dos and don’ts

Anyone can be a host, but there are guidelines. The Death Café website has a set of guidelines and Miles herself was a co-author on an article that included a list of dos and don’ts in the Omega Journal of Death and Dying: 

Do: Allow a space for folks to share their ideas respectfully and openly. 

Do: Offer the opportunity for everyone to speak but allow those who want to remain silent to do so. 

Don’t: Charge an admission fee. 

Don’t: Sell death-related products. 

Don’t: Turn the group into grief support. 

Miles and others believe that confronting our mortality will prompt us to the make the sorts of life changes that some folks do only when confronted with a fatal disease. Why wait? 

Shellie Balogh, a 61-year-old hospice nurse attended one of Miles’ cafés in Ohio.

 “It wasn’t what I expected; it was more upbeat,” she says. “It’s a fun thing to do if I have a free Saturday. You go and meet people you may never see again and just have this conversation, opening up this forbidden area of discussion.” 

A midwife for dying

Suzanne O’Brien hosts a New York City group that meets at a public library on the Upper West side. She’s a nurse turned death doula.

Death doulas—part of this burgeoning “death-positive” movement—provide the same sort of bedside care, comfort and companionship that birth doulas offer to pregnant women but at the other end of the life cycle. 

O’Brien said monthly conversations tend to fit into five buckets, sometimes all five covered in one 90-minute session: 

The physical: How do I make sure I’m comfortable during my dying hours. What do I want to happen to my body? 

The financial: What forms do I need to fill out? Or how much money do I want to spend on a funeral versus, say, end-of-life care? 

The emotional: How do we deal with potential regrets or forgiveness? 

The mental: Reasoning and acceptance  

The spiritual: How do beliefs about death inform the way we live.  

One woman wanted to know how to donate her body to a medical school anatomy class. She also wanted to make sure her family would not be given the leftovers when the students are done picking her apart, something she had heard can happen. 

She told the group: “I’d rather just be flushed.” 

Banishing the secrecy

The idea of a group of a random community members chatting about death over refreshments was the brainchild of Swiss sociologist Bernard Crettaz. He launched a “Café Mortel” in 2004 in the lakeside town of Neuchâtel, Switzerland. A dozen mortal members attended. 

The point, as he once told a reporter for the Independent, a British newspaper, was to remove death talk from its “tyrannical secrecy.” 

The first cafe outside of Switzerland was held by John Underwood,  who hosted in his London basement in 2011. He’s given credit for helping the movement go global; he died last year, at the age of 44, from undiagnosed leukemia.

Today, there are death-with-food meetings in about 55 countries—including the U.K., Italy, Hong Kong, Finland, the Netherlands and New Zealand.

Becoming a regular

Those who are regulars say that while the subject matter is death, the meetings are not sad. Hosts emphasize that they are not grief support groups, more death-curious groups.

Jane Geller, a retired schoolteacher in New York City attends the Upper West Side meeting nearly every month.

“It’s a misnomer to think it’s depressing,” she said. “Death Cafés are really about life.” 

Shatzi Weisberger, an 88-year-old retired nurse from New York City is a regular, too. 

 “I was always especially interested in how we come into this world and how we leave it. When I got into my eighties, I got personally interested for my own edification.” 

Last fall, she hosted her own “FUN-eral” (pronounced Funn-eral) in the common room of her apartment building. More than 100 attendees came to the event. It sounded like a macrabe-themed birthday but she said it was a death, not a birth, party. And a way to attend her own funeral. 

She said she has planned her own green burial. “I’m going to be wrapped in a shroud and buried in the woods upstate and my body will deteriorate and something will grow.  I don’t know if it will be grass or flowers or a tree so I feel my dying is bringing life into the world. That’s not depressing at all.”

Complete Article HERE!

Dying while black:

Perpetual gaps exist in health care for African-Americans

Studies show that pain in African American patients is often not addressed.

By

Several years ago, MapQuest directed me on a 10-hour drive to visit my father in a Florida hospital. Complications from diabetes, including blindness, kidney failure, congestive heart failure, and a below-the-knee amputation, had taken their toll. This time my father, 69, was hospitalized for an infection of unknown origin that physicians could not name, despite their many attempts to grow cultures.

I did not know it at the time, but my father was dying.

Once I arrived at the hospital from Durham, North Carolina, I could hear his screams from the nurses’ station. “Never mind. I hear him,” I told the nurse whom I had just asked the location of my father’s room. “I’ll follow the sounds.”

That any patient would be left in so much pain that his screams could be heard down the hall was unacceptable to me. That this patient was my father, a man I had always known as a big, strong former football player – the kind of man other men didn’t dare cross (but who was also loving and gentle) – was difficult for me to process. Yet, here I was, being guided to his hospital room by the sound of his cries. Despite being a trained philosopher with an interest in bioethics, I had not yet begun to think about the ways in which racialized health disparities manifest even at the end of life. My father’s excruciatingly painful process of dying was but one example.

The author with her father, John Wesley Wilson, on Easter Sunday, 1977.

Gaps while living, gaps while dying

It is well documented that African-Americans experience excess mortality, or deaths beyond the expected mortality rate. However, even if disparities in the mortality rate for African-Americans were rectified tomorrow, the fact remains that we will all eventually die. And how we die matters.

According to a 2013 Pew Research survey, 72 percent of American adults have given at least some thought to their end of life wishes, with 37 percent of American adults having given their end of life wishes a “great deal of thought.” Some of these wishes include decisions about pain management, maintaining quality of life, and whether to continue aggressive medical treatment for terminal illness.

Additionally, research shows that people tasked with making treatment decisions for loved ones who cannot express their own wishes sometimes experience distress about watching their loved one suffer. Even months or years later, they wonder whether they made the “right” decision.

Pain ignored

Black patients generally receive worse pain management in primary care environments and emergency rooms. Even black children are not treated for their pain to the extent that white children are. Some attribute this to false beliefs about biological differences between black and white patients, including the belief that black people have “thicker skin” and, therefore, do not experience as much pain as whites. These false beliefs lead to inaccurate pain assessments by physicians evaluating black patients and an unwillingness to take the pain complaints of black patients as seriously.

This disparity in black patients’ pain management continues even as black patients are dying. Families often want to ensure that their loved ones are as comfortable as possible once patients reach the point where death is near. Racialized gaps in pain management lead to a denial of humane comfort care that contributes to unnecessary suffering for black patients and their loved ones.

Symptoms ignored

Pain is ignored more in African Americans patients, and so are symptoms.

Inadequate pain management is but one aspect of the lower quality of care that black patients report in general that affects when and how black patients die. In December 2015, 57 year-old Barbara Dawson was arrested and forcibly removed from Calhoun Liberty Hospital near Tallahassee, Florida, after she refused to leave without further treatment. Although she had been evaluated in the hospital, she was discharged despite her continued complaints of difficulty breathing. Hospital personnel apparently assumed she was faking her symptoms and called police to arrest her for being disruptive. Dawson collapsed before she could be placed in the police cruiser and was returned to the hospital where she died an hour later from an undetected blood clot in her lungs.

Dawson may or may not have been at the end of life when she arrived at the hospital. However, hospital staff allowed her condition to deteriorate by not taking her complaints seriously. She died only feet away from people who could have, at minimum, eased her process of dying. The hospital was later fined US$45,000, and Dawson’s estate settled a lawsuit against the hospital for $200,000 in 2017.

Less interaction

Dawson’s experience is a dramatic and appalling case. Nevertheless, one groundbreaking study revealed that physicians generally interact less – both verbally and nonverbally – with black patients who are dying than with white patients who are dying. At the end of their lives, black patients do not receive the same comfort care, including eye contact and touch, from physicians that white patients do.

The U.S. health care system can improve care for all patients at the end of life. However, this system still denies black patients the kinds of interventions that white patients often take for granted. This denial contributes to more painful, horrific deaths of black patients and compounds the grief of their loved ones.

In my father’s case, even as part of me still hoped for a miracle, the thing I wanted most in the world was for him to be as comfortable as possible. That this did not happen despite my best efforts still haunts me when I think about the end of my father’s life.

Complete Article HERE!

The Game Of Death: You Win By Talking About Yours The Best

By Gabrielle Emanuel

It’s game night on the top floor of a bank building in Medford, Mass., and 25 people have divvied themselves up around the circular tables. Four women, none of whom know each other well, are seated near the snacks busily discussing their future burials.

Katie Wallace, a native of nearby Somerville, is confident she wants to be cremated. But it’s a bit more complicated for her. The urns are accumulating. “I have a room in my house where I have the ashes of six different people,” she says. “So I have to figure out what to do with all of those people.”

As a lavender dusk settles outside the floor-to-ceiling windows, the women chuckle about whether Wallace should pass this “inheritance” on to a younger relative or, perhaps, invest in a columbarium.

This isn’t just small talk. It’s part of the game. These woman and men, all of whom are older, have gathered to play a card game — one with chips, a deck of cards, and a winner and losers. But this isn’t poker or blackjack.

Question 15: What music do you want to be listening to on your last day alive?

The game, called My Gift of Grace, aims to facilitate conversations about the end of life. It’s part of a growing trend: efforts aimed at encouraging talk of death well before it is imminent. From The Conversation Project to Honoring Choices and another card game called Go Wish, all seek to find ways around the usual distaste for facing death in advance, so that people can better control the care they receive at the end.

“I think we are on the early cusp of what I hope will become a groundswell of change,” said Dr. Lachlan Forrow, director of the Ethics and Palliative Care Programs at Boston’s Beth Israel Deaconess Medical Center, in a phone interview.

The idea for this game started when The Action Mill, a Philadelphia-based design firm, was interviewing a hospice nurse, remembers Nick Jehlen, who ultimately led the game’s design team.

“She said: ‘The most important thing you could do to make my job easier would be if you could make sure that everybody who shows up for me has had one conversation about the end of their life with their family, just one.’ ”

Dr. Forrow says that having that one conversation is a lot harder than it sounds; for most people, talking about death is incredibly difficult. “It is like the biggest, existential, overwhelming, huge issue for anybody: that we are mortal.”

But Jehlen and his team weren’t deterred. They set out to make that conversation a little bit easier.

A Game About The End Of Life

The first step for the design team was thinking about everything they wanted for the end-of-life conversation: they wanted it to be done in person, with a family sitting around a table together, and everyone having a pleasant time.

A card game checked all the boxes. “Nobody gets together with their buddies to play poker just to pass some cards and some chips around,” Jehlen says. “They actually go to tell stories and share insights.”

Susanne Wilkinson, one of the women sitting with Katie Wallace in Medford, says the idea of a game about the end-of-life made her “a little dubious,” but, she says, “I am more curious to see what comes out of this.”

Wilkinson, of Somerville, is willing to withhold judgment. She believes that “as a society we haven’t done this very well yet, so I am looking for any angles that might provide some avenues.”

Jehlen and the rest of his design team had the same thought. So they designed a deck of cards with a different question printed on each card.

Question 3: Write your own epitaph in five words or less.

Question 5: If you needed help going to the bathroom today, who is the first person you would ask to help you? Who would you never be able to ask?

Question 11: In order to provide you with the best care possible, what three non-medical facts should your doctor know about you?

Question 15: What music do you want to be listening to on your last day alive?

Every person answers the questions, and the other players decide whether an answer deserves a ‘thank you chip.’ The blue poker chips are meant to express gratitude for a thoughtful answer, and it’s those chips that end up determining the winner.

Jehlen says the design team wanted everyone in the family participating. The goal was to avoid focusing solely on the one person that might be nearing the end of their life.

Wilkinson particularly appreciated this element of the game. While death can be a lonely experience, she thought “the fact that it allowed you to connect with other people makes it satisfying.”

The game also sought to focus on life as well as death, since having a good death experience is often about understanding what one values in life.

Jehlen says he struggles to capture the game in words. “The problem we always run into is explaining the game is a little bit like explaining a joke.”

But he can’t remember a My Gift of Grace game where there wasn’t laughter. Recently, he was with a group of health care professionals, “in the middle of these 25 people playing the games,” he remembers. “I closed my eyes and it was just like rolls of laugher.”

Dr. Forrow was not involved in the development of the game but when he checked it out he found it to be “a wonderful blend of serious and humor.” He says that’s important but he tempers his enthusiasm.

Is The Game A Winner?

Dr. Forrow believes the jury is still out. He says there is one ultimate test for this game and for all the other efforts to facilitate an end-of-life conversation.

“We’ll find out whether it’s helpful or not by seeing people using it,” Dr. Forrow says.

The Action Mill has sold about 2,000 games since it went on sale in December.

Dr. Forrow thinks a lot more people need to be having this conversation. And, despite seeing progress, he says, “I don’t actually think anybody is yet doing a good job.”

In an effort to get more people playing the game and having the conversation, Jehlen and his colleagues had the idea of public game nights. Wallace and Wilkinson attended one of the 10 games nights that have been held across the country so far.

While the game was designed for families to play during the holidays, Jehlen says, “the feedback we started hearing was that actually playing the game, talking about end-of-life issues with strangers seemed like it was easier than maybe having this conversation with your family.”

Wallace would agree, but she has a word of warning. She says it’s comfortable either with “complete strangers or very close friends.” But when these game nights happen in small communities, there is the possibility of seeing “people you know in a very casual way,” and that, she says, is “a little odd.”

Jehlen has been viewing these public game nights as something of a warm-up for a family game night. But it’s not just families and strangers, it’s health care professionals too.

Where Does Medicine Come In?

To Jehlen’s surprise, “many of the people who are buying and playing the game are actually health care professionals.” About a third of their sales have been to hospitals, hospices and other health care groups.

On the one hand, this could be a vote of confidence for the game. But on the other hand, Dr. Forrow says, it’s helpful to have this end-of-life conversation in a non-medical context. He worries that when sitting in a doctor’s office, medical concerns dominate the conversation.

“I adamantly, firmly believe that for the conversations to be really about what really matters that they should start maybe even as far away from the hospital doctor’s office as they can,” Dr. Forrow says, “because these are much more fundamentally human issues than medical issues.”

Despite that fundamental nature of the topic, Dr. Forrow believes that it can be helpful not to think about it in such broad terms. “I think focusing on some simple concrete task that you did or did not do, like designating a health care proxy,” can make it easier, he says.

Jehlen admits there aren’t yet clear, concrete steps to take after playing the game. While many of the questions in the deck have a medical undertone, right now there isn’t a guide to help people translate game answers into a Living Will or an Advanced Care Directive. Although, he says, the game’s maker is considering putting downloadable end-of-life care forms on the website.

Regardless of what the next official steps may be, Susanne Wilkinson knows her next move: Before leaving game night, she said she wanted to borrow the game and play it again.

Complete Article HERE!