I visited a ‘green cemetery’ in California,

and it made me question everything about American funerals

By

  • A small network of cemeteries across the country are looking to shake up American burial practices and make them eco-friendly by offering “green burials.”
  • Green burial rejects cremation, embalming, and concrete-lined graves to reduce the carbon footprint of death.
  • A national survey found that over half of respondents were interested in exploring green funeral options because of potential environmental and cost-saving benefits.

Cindy Barath is the steward of a 32-acre property in the hills of Mill Valley, California, and all the bodies that come with it.

She spends her days planning ceremonies, receiving the bereaved, and caring for the dead. She’s honest at dinner parties about her job, and when people are surprised to hear that she personally dresses the corpses, she tells them, “Well, they don’t dress themselves.”

I met Cindy Barath on a cool October morning. I was a graduate student hoping to write an article about rocketing property prices putting pressure on the cost of a grave. My tentative headline was: “The cost of living is rising. Is the cost of dying, too?”

I arrived at Fernwood Cemetery looking for a story about real estate. But I found something different, and in my opinion, more interesting: a small movement looking to shake up American burial practices and make them environmentally friendly.

In a traditional American burial, a body is embalmed, then placed in a coffin and laid to rest in a concrete-lined grave. The custom is resource intensive. Each year, it uses 4.3 million gallons of embalming fluid, 20 million board feet of hardwood, and 1.6 million tons of concrete, according to the Green Burial Council.

The “green burial” movement looks to change that.

Barath offered me a tour of the property via her shiny black golf cart. We hop in and she hits the gas. We whip by eucalyptus trees, wood-chip trails, and the mounds of fresh graves.

Barath is not the funeral director I imagined. She has a warm, folksy demeanor, and wears her auburn hair in short curls that are closely cropped to her head. Her wardrobe reminds me of my high school home economics teacher — long, warm sweaters and a chunky gemstone necklace.

We pull up to a spot overlooking the hills, which are patched with light and shadow by the misty clouds overhead. It’s quiet, but if you listen closely, you can hear the distant chatter of recess from an elementary school a few miles away. “Sure beats the office,” said Barath with a chuckle, dismounting from the driver’s seat.

Green burials are generally defined by what they don’t do. They don’t cremate, which burns through gallons of fuel to turn the body to ash. They don’t embalm, which pumps formaldehyde into the body to preserve it. And they don’t line a grave with concrete, which slows decomposition.

But from there, the details vary. Customers can choose biodegradable containers that range from a pine box to a hand-sewn silk shroud. Some cemeteries offer flat stone markers, others record grave locations with a GPS tracking system. Fernwood even offers a mushroom suit, a shroud of fungal spores that aid in decomposition and detoxification.

Beyond Fernwood Cemetery, options abound for the late nature-lover. A Canadian design firm created an urn called “ROOTS,” made from coffee grounds and lime that will germinate a tree. A company called Better Place Forests is conserving hundreds of acres of land in California and Arizona where families can reserve a memorial tree to spread ashes. And an organization called Eternal Reefs can inturn your cremated ash into a concrete “reef ball” that restores ocean habitats.

A new name for an old practice

Although green burial is marketed as an eco-friendly choice, its customs existed long before the environmental movement. A simple burial without the frills of chemicals and concrete is ancient. Green burial is, essentially, a new word for an old practice.

Take Jewish burial traditions, for example.

“Jewish burial traditions and customs have been green for the last 3,000 years,” said Glenn Easton, executive Funeral Director at The Garden of Remembrance Memorial Park in Maryland. “In Israel, they don’t use caskets. They don’t embalm. They don’t use concrete liners. They use a shroud and put people in the ground.”

Easton says his Orthodox Jewish customers are especially green, since they prioritize letting a body decompose quickly. They even have a workaround called “butterdishing” for cemeteries that require concrete liners: they line the sides and top of the grave, and leave the bottom open to the earth.

Green burial isn’t too different from the way we bury the indigent, either. At potter’s fields across the country, governments bury those who are too poor to afford funeral services, or bodies that are unclaimed, in simple graves without coffins, concrete, or chemicals. The only difference: rather than a shroud or pine box, they are often buried in plastic body bags.

Unlike coffee-ground urns and “reefballs,” green burial is old technology. But while it doesn’t contribute much in terms of innovation, it does spark an important conversation. Green burial prompts us to ask why our rituals of death default to using formaldehyde and concrete.

In America, embalming can be traced back to the Civil War. The soldiers who died fighting on the battlefields of North Carolina needed to have their bodies transported back north to be buried. Preservation became a necessity.

Meanwhile, concrete liners can be traced to America’s obsession with the perfect lawn. Funeral directors say that they are useful for landscaping: they prevent the ground above a grave from sinking or collapsing. Many cemeteries require the concrete. It keeps things smooth for their industrial mowers.

The difference is apparent at Fernwood’s Green Cemetery. Rather than neat rows of gravestones and uniformly-trimmed fescue, the cemetery’s green burial sections are dotted with native grasses and shrubs. In parts, the landscape is steeply sloped. A lawnmower would have a tough time.

Changing times

The movement is still in its early days. There are at least 287 cemeteries in the US and Canada that offer green burial services, according to New Hampshire Funeral Resources. And at some of those cemeteries, like Wooster Cemetery in Connecticut, traditional burials vastly outnumber their green counterparts.

The cadre is small, but Ed Bixby, president of the Green Burial Council, which certifies green cemeteries, is hopeful. A national survey found that over half of respondents were interested in exploring green funeral options because of potential environmental and cost-saving benefits.

And Bixby says that end-of-life customs are more changeable than they seem.

Take cremation, for example. In 1975, only 6% of Americans chose cremation, according to the Cremation Association of North America. Traditional burial with embalming was standard.

Funeral directors considered cremation to be no more than “a flash in the pan,” said Bixby.

But it wasn’t. Cremation was a fraction of the price of traditional burial, and it was adopted widely.

Today, cremation is king. More than half of all Americans choose cremation, according to the National Funeral Directors Association. It surpassed traditional burial as the most popular end-of-life solution back in 2015.

Direct cremation, which forgoes a viewing or other ceremony, can cost as little as $750. But since green burial is less expensive than traditional burial, Bixby believes it could gain traction as the “official third option.”

Traditional burials, with a vault, cost a median of $9,135 in 2019, according to the National Funeral Directors Association. By forgoing embalming ($750), a cement vault ($1495), and opting for a simple shroud or pine box over a wood casket ($3,000), or metal burial casket ($2,500), those choosing green burial can save thousands.

Still, Glenn Easton emphasizes that at his cemetery, “green burials are not influenced or determined by financial decisions.” Instead, “they’re a philosophical preference.”

And Cindy Barath says that the simplicity of a green burial service, and emphasis its emphasis on nature, helps the bereaved. “I try to cut through all the red tape and make it easy and simple. Just help them make this transition. I know if they come in crying and come out laughing, something has taken place.”

Complete Article HERE!

The Death-positive Movement & The Order of the Good Death

by Carl Gregg

As of last week, more than 150,000 people have died from the coronavirus in the U.S. alone. And we should be honest that that number is likely an undercount due to inconsistencies in how various localities attribute COVID-19 as a cause of death (The New York Times). Worldwide, more than 600,000 people have died of Coronavirus (NPR). The death toll will continue mounting in coming months. So in such a time as this, taking a step back to reflect on our own mortality seems in order.

Now, I will readily confess that confronting the subject of death can feel like a lot to take on: it can be a heavy, freighted topic, but it is also incredibly important. As the saying goes, “None of us are getting out of this alive!” One option, of course, is denial: trying to avoid the topic of death as much as possible until our time inevitably comes. But I invite you to consider that there is a better way. Keeping our mortality in mind and cultivating practices supportive of dying well (to the extent that is within our control) can be a key part—and sometimes a deeply moving, meaningful, and beautiful part—of living well.

Along these lines, reminders of mortality can be a central practice in the Buddhist tradition. Indeed, some Buddhist traditions specifically include “four reminders” which are sometimes linked to the origin story of the Buddha. After all, the rich and privileged Prince Siddhartha was launched onto the spiritual quest that would lead him to become the Buddha precisely when he wandered outside the protected gates of his palace and encountered three visceral, existential reminders about impermanence and change. He encountered, in turn:

  1. Old age (a person whose body had grown frail)
  2. Sickness (a person whose body had become ill), and
  3. Death (a body that had died)

In each of these cases, the young Siddhartha Gautama—the future Buddha—realized, “I am not exempt”: I too will grow older, get sick, and someday die.

My intent is not to be unduly morbid. Instead, it is to realize that reminders of our mortality—that none of us are promised even the next moment—can wake us up into more fully and freely experiencing life. We’re not going to be around forever, so stop sweating the small stuff; let that [BLEEP] go. We’re not promised even tomorrow, so let’s make the most of this time that we do have here and now. Can you feel that aliveness, that edge that remembering our mortality can bring?

The fourth reminder is that contemplative practices offer us a path of liberation—not an escape from those first three reminders (old age, sickness, and death), but a way of transforming our relationship to unsatisfactoriness. As the saying goes, “We can’t stop the waves of change from coming, but we can learn to surf.”

If you will indulge me in a related tangent, part of what comes to mind when I think about death is sex. Not in a weird way, but in a free association to another of those other big, freighted parts of the human condition. And it regularly makes me proud to be part of the Unitarian Universalist movement that is more than five decades into a commitment to comprehensive, lifespan sexuality education. Our Whole Lives (affectionally abbreviated as OWL) was launched fifty years ago in 1970. (This program was originally called AYS, About Your Sexuality.) For more than five decades Unitarian Universalism has been at the forefront of the sex-positive movement: affirming a wide range of sexuality as natural and healthy and emphasizing safer sex practices, consent, body-positivity, and reproductive justice.

I bring up that longterm commitment to the sex-positive movement because we quite progressive UUs have some work to do to be equally as committed to the death-positive movement. Death-positive, you might be asking yourself, “What is that?” For the uninitiated, allow me to introduce you to Caitlin Doughty, my favorite death-positive advocate. Doughty describes herself as a “mortician, activist, and funeral industry rabble-rouser.” I highly recommend all three of her books:

  • her memoir Smoke Gets in Your Eyes: And Other Lessons from the Crematory
  • her travelogue From Here to Eternity: Traveling the World to Find the Good Death
  • her most recent book Will My Cat Eat My Eyeballs? Big Questions from Tiny Mortals about Death.

All her writing is equal parts hilarious and profound. Some of you may recall that four years ago, I wrote a blog post on mortality inspired by Doughty’s memoir, as well as by the physician Atul Gwande’s book Being Mortal. I highly recommend that book as well, if you or someone you love is wrestling with end-of-life medical decisions.

For now, I would like to share with you the eight central values of the Death Positive Movement as articulated by a group Doughty helped found, called The Order of the Good Death:

  1. Hiding death and dying behind closed doors does more harm than good to our society.
  2. The culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.
  3. Talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.
  4. The dead body is not dangerous, and everyone should be empowered (should they wish to be) to be involved in care for their own dead.
  5. The laws that govern death, dying and end-of-life care should ensure that a person’s wishes are honored, regardless of sexual, gender, racial or religious identity. [More information available at “Death with Dignity“]
  6. My death should be handled in a way that does not do great harm to the environment. [More information available at “Green Burial“]
  7. My family and friends should know my end-of-life wishes, and I should have the necessary paperwork to back-up those wishes. [More information available at “Conversation Project” and Five Wishes”]
  8. My open, honest advocacy around death can make a difference, and can change culture.

And our culture is changing even if we still have a long way to go. One of the most pervasive death positive shifts is the Hospice Movement (which started in the 1960s and entered the U.S. in the mid-1970s). Hospice has initiated a much-needed sea change in according death greater dignity.

Relatedly, many of you may be familiar with doulas in the context of accompanying, guiding, and empowering people giving birth. There are also a growing number of people being trained as death doulas to accompany, guide, and empower people at the end of life.

And some of you may have also heard of or even participated in the Death Cafe movement, which was founded in 2004 as a way to connect people who want to talk about death in an open, honest way. As one of their promotional slogans says, Death Cafes, “never involve agendas, advertising or set conclusions. Interesting conversations are guaranteed!”

If you google “Death Cafe” (or visit deathcafe.com) and your zip code into the “Find a Death Cafe” link, you’ll find that the closest Death Cafes. You may even find one has moved to Zoom during the pandemic, and is open to all.

Here one description:

Death Cafes are an opportunity to demystify the death experience. We offer an open, safe environment for discussing thoughts and feelings about all manner of death and dying.

At a Death Cafe people drink tea, eat cake and discuss death. [“Life’s short, eat dessert first,” right?!] Our aim is to increase awareness of death to help people make the most of their (finite) lives…. Please note: Death Cafes are not meant to act as support groups or grief counseling.

If this post leaves you a little “death curious,” perhaps joining an upcoming Death Cafe might be right for you.

Overall, the hope is that being more open, honest, and transparent about our inevitable death can empower us to make the most of the life that we have. One ancient Buddhist inquiry practice puts it this way: “Since death alone is certain, and the time of death uncertain, what should I do?” 

As we sit with that question, allowing it to sink in, I want to conclude with a story. A few years ago my colleague the Rev. Georgette Wonders preached a sermon on the subject of death and mortality to Bradford UU Community Church in Kenosha, Wisconsin, the congregation she served as minister. That sermon was titled “Facing Death: The UU Book of the Dead.” She preached it on Sunday, August 6, 2014 with no knowledge at the time that she would be killed two days later in a car accident.

I invite you to reflect on the final section of Rev. Wonders’ sermon on “Facing Death: The UU Book of the Dead.” She is speaking to us from beyond the grave: both her words and the example of how she lived her life are part of the legacy that she had left behind as a gift for those of us still living. As you listen, notice if any words or phrases particularly resonate with you in this season of your life. Whether we are saying goodbye to a loved one—or whether we are the one being said goodbye to—the way we prepare is to:

  • Live each day as if it were the only day.… Every time you part, from this day forward, tell them you love them, even if you are in and out all day long.

  • Appreciate the little things—the common, everyday things—because they will become almost unbearably precious when death comes knocking at the door.

  • Overcome your resentments and learn not to accumulate them.

  • Be useful and light upon the earth.

  • Live a grateful life.

“We pathologize the dead.”

Mortician Caitlin Doughty on funeral rituals and why death is often hidden away

Mortician, Caitlin Doughty.

by Jonathan Bastian

Some Native Americans have long believed that death is part of the natural cycle of life and many cultures believe the dead spirit continues to “walk on” implying the continuation of a journey rather than an end point with death. Funeral and burial rituals provide comfort and acceptance; death is embraced and revered instead of feared. What can be learned from these practices and rituals that would help make death more meaningful, and less frightening. Do rituals need to be religious to serve a purpose? KCRW’s Jonathan Bastian talks with Larry Sellers, a traditional practitioner and member of the Osage, Cherokee and Lakota tribes and Caitlin Doughty, a mortician and author of “From Here to Eternity; Traveling the World to Find the Good Death.”


The following interview excerpts
have been abbreviated and edited for clarity. 

KCRW : We heard from BJ Miller, about how we, as a society, run from death and delay it. What have you experienced?

Caitlin Doughty:What I always find fascinating about the American way of death is how successfully we’ve hidden death. Dead bodies go to funeral homes or industrialized crematories. People who are dying are hidden away in hospitals or nursing homes. Even our animals are removed from view and taken to slaughterhouses, so we don’t even know where our meat comes from anymore. So never in history has there been a society that has so successfully hidden away death, and I think that’s caused innumerable problems.

Larry Sellers: Yes, for the most part, the masses have had this thing about being afraid of death; it’s not a part of their lives, so they hide it and then they make more out of it than what it really is. And in traditional cultures, there isn’t death, there’s only a change of worlds. That you go from this world, because the human spirit never dies and you go to another world. And the dominant culture here is to make everybody afraid of death. Whereas traditional peoples, we look at it as a part of that life cycle. And it’s the transition, the “crossing over,” that’s to be celebrated.

Traditionally many years ago, the way Osage people would bury those who have “crossed” was to put them in a sitting position facing East where the sun rises, so they could greet the morning. Then they would stack stones around them. As a society we believe the community and heritage comes first, so in death, you would be willing to sacrifice yourself, so that the people on Mother Earth can continue to survive.

What about the importance of ritual and ability to navigate this process?

Doughty: What I end up focusing on is the idea that engagement right after death, specifically engagement with the dead body itself is primal, it’s timeless and it can help your grief journey so much to be able to be present with the dead body and care for the dead body because that’s what humans have been doing for tens of thousands of years in all different cultures.

The fact that we pathologize the dead body, we’ve said it’s dangerous, it’s scary, it’s filled with bacteria, it’s probably decomposing, none of which are true. We’ve made the dead body something that can only be handled by professionals for quite a lot of money, as opposed to something that can be done in your community, by the person’s wife or by the person’s child.

In fact, if the family is involved with care for the dead body, it can completely transform how they feel about the death; they can feel empowered, they can feel connected and they can feel like they were there at the very end.

Also it doesn’t have to be religious. If you feel like you’re a modern secular American, without much of a connection to religiosity or that you’ve lost it. Ritual can a-religious, if you still believe in what you’re doing and you’re doing a physical action, you can still be powerful, important, and it can represent a transition.

Sellers:Being with that body and helping that body make that transition is so important. We’ve been affected by the US law from totally practicing our culture because we’re required in large part to encase our family members in a either a metal case or concrete casement rather than a natural burial. Only a few places around the country that allow for natural burials. So if you want a natural burial, you have to go there rather than be with your relatives here. Being around that body helps you process that transition. And it helps to see that person is taken well care of by the family members and the people who were important in that individual’s life.

Complete Article HERE!

Why planning for death should start when we’re living

Dr. B.J. Miller.

by Jonathan Bastian

Death and dying are inevitable and a natural part of life’s cycle. The pandemic has brought the issue of our own mortality into sharp focus. Many people have died alone, away from family, and in the isolation unit of a hospital.  It’s not an option many would choose. Palliative care expert Dr. B.J. Miller talks with KCRW’s Jonathan Bastian about his experiences caring for those who are at the end of their lives. He says one of the big takeaways of this moment is that we should make preparations and think about our mortality when we are healthy.  

The following interview excerpts have been abbreviated and edited for clarity. 

KCRW: You’ve spent countless hours with folks that are nearing the end of their life. What do people want as they prepare to die?

B.J. Miller: Well, in general there’s a ton of individual variation. This is why the subject is so interesting and that’s where some of the joy is. For the most part people want to be at home when they die. And by home, most people mean not the hospital and not the nursing home. Dying at home is doable, especially with hospice. But again here, what I really think people mean is they want to die in familiar settings, where they’re comfortable surrounded by people they love, wherever they call home. In other words, to have a minimum of gear and machines propping them up. A lot of people find peace, in the realization that they are natural creatures and that death is a natural phenomenon. And the more they can touch into that nature, the more at peace they feel, as a rule. But some of us see ourselves as fighters and quote unquote, “when I go down, I go down swinging,” and the idea of an ICU death with desperate measures happening, is fitting, so to each their own.

But to answer your question, dying at home, dying in a more natural way, dying comfortably enough so that you can have time with people you care about. So you can think about anything you know, something besides your pain for a moment here and there. People want to be at peace with their loved ones.

The idea of closure is an invented notion. Nature doesn’t promise us closure except for the idea of birth and death. But a lot of us are just social creatures and are thinking about our legacy, what do we leave behind? So a lot of people say, I just want to make sure I’m not a burden to my family. I want to make sure my family is okay.

It makes sense because I think a lot of what’s dying is the ego and the more each of us can find a way to to love life outside of ourselves beyond ourselves, but inclusive of ourselves, the easier death is on us, the more readily we can, we can handle it.

As we navigate this pandemic, it highlights some of the breakdown in the healthcare system in dealing with death?

The last thing any of us wants to do is shame each other as we’re heading off the planet. But this is exactly why — whether it’s COVID, being hit by a bus, the idea of a sudden death, of suddenly being here and then not being here, that’s always possible — when we make this subject matter taboo — hard to talk about, and the healthcare system doesn’t make it any easier and doctors aren’t trained to talk about it — we end up kind of deferring the inevitable until it’s really too late.

So one of the takeaways right now is we should all be doing our advanced care planning, our wills, our healthcare proxy, the variable putting our affairs, we should all be thinking about our mortality, if only to make sure we are present for the life we have. These are lessons that have been in the population for eons but are easily forgotten because death is such an obnoxious topic, especially in modern society. But we can be swept away in an instant and it would be so helpful to have had these conversations with loved ones before and document our wishes, especially when we’re healthy because you just never know.

You worked at the Zen Hospice Center for a long time in San Francisco, is there a spiritual dimension that you are aware of being around death for so long?

You know, I don’t know what word I like, religion, faith, spirituality, they’re all importantly different. I believe that we are all connected not just person to person, but person to tree, person to chipmunk, person or whatever, that we’re all part of something that we can’t possibly fathom. And as smart as we are, there’s still so much we don’t know. So there’s got to be some deference to mystery, some deference to not knowing.

You can look at that void or that abyss or that mystery and project judgments or you can project a sort of a universal love. For me, I happen to believe that, in general, adjectives and qualifications are human invention. But one way or another, I look at that mystery, I feel all that connection and I see love. I see humility in all that we don’t know and yet are totally a part of.

You can imagine how much this comes up when you’re dealing with patients and families, friends, anybody at the end of life.  If I can sit with a patient and they’re in the throes of wondering what’s going to happen, maybe scared about what’s going to happen when they die, I often end up just talking with people about mystery and about not knowing and say, “Well, you know, I don’t know either, you know, I’ve been around death and dying for a lot of a lot of years and a lot of people and I still have no idea. And you know, isn’t that amazing?”

When I look up in the night sky, and I can see all these stars and light that’s hitting my eyes that left that source billions of years ago, empirically, there’s enough proof of connection among us or fascination around us. I’m coaxed into a faith that love is somewhere binding us. And even if it’s not the natural order, it’s certainly something that we inject and put love and meaning into this mystery.

And so sitting at the bedside, there’s a permissiveness at the end of life that I’ve come kind of addicted to, because if you’re with someone who’s only going to be around for a while, you can quickly go to the vulnerable place, you can quickly love someone without fear of Gosh, if I tell them, I love them, they’re gonna get expectations and you don’t have to talk yourself out of this very simple thing of loving someone.

So at the end of life, I don’t know what’s coming either but I’m gonna sit here with you and we’ll walk up to the edge of that abyss with you and I’m not going to go anywhere. And I’ll be thinking of you even after you’re gone and I love you, and we get to share this planet at the same time. Isn’t that amazing?

Complete Article HERE!

The virus is robbing many people of a ‘good’ death.

How do we change that?

COVID-19 has taken away our ability as a society to avoid the topic of death. But we’ve needed to improve our ‘death literacy’ since well before the pandemic hit.

By

For years, we kept death at arms length. We awkwardly avoided it, looked the other way, and hid it behind layers of euphemism.

But since January, death has been inching closer, a drum beat in the back of our minds getting louder as COVID-19 spread around the world. Body counts became the focus of every news update. Field hospitals in Central Park. Mass graves in Italy. A gnawing sense that within weeks, this could happen here.

In the United States, deaths started losing their meaning. The numbers quickly dwarfed 9/11, then Vietnam, then every war combined since Korea. While 189 Australians have died, and the numbers keep rising through Melbourne’s awful outbreak, there’s still a sense of distance. People die from COVID-19 in hospitals, and nursing homes, far away places we can easily ignore.

But with COVID-19, the issue isn’t who dies, or where they die, it’s often how they die. And that is something we, as a death-averse culture, might not be ready for.

A death with dignity

For a culture where talk of dying is so taboo, so many of us want the same thing — a death with dignity.

A good death, says University of Wollongong Associate Professor of General Practice Joel Rhee, can be hard to achieve. But what is key is having a sense of control.

“It’s a death where you’re in an environment where you’re surrounded by people you love. You’ve got some dignity about how you’re going through the last few months,” says Rhee.

“It’s when your concerns, fears, psychological and spiritual needs are taken care of.”

COVID-19 takes away all that. The virus robs people, no matter their age, of any sense of control over their final days.

People die slowly and painfully, choking to death in near silence. They die alone, isolated from friends and loved ones, with exhausted health workers draped in PPE. And when they go, the atomising force of the virus disrupts the post-death rituals that give loved ones the closure they need.

Funerals are restricted to just a handful of people. The whole process of collective bereavement, gathering under one roof to hug and cry, is suddenly too risky. When residents died at St Basil’s in Melbourne, their families couldn’t even enter the facility to collect their belongings.

It’s that loss of dignity and control, that isolation from loved ones, that make the cynical calls to let the virus rip seem all the more callous. Deaths from COVID-19 aren’t just numbers on a spreadsheet. They’re real people, with families who are robbed of the chance to do right by them.

Jennifer Philip, chair of palliative medicine at the University of Melbourne, says the pandemic has made the job of supporting people in their final days so much more challenging.

“A big part of what we do in palliative care is communication and supporting families. But that’s all done remotely, behind layers of PPE,” Philip says.

“When you’re doing telehealth, many of the usual gestures we use are not visible. And there’s a lot of work with connectivity — using iPads and technology that older people may not be comfortable with.”

We need to talk about dying

But even before the pandemic hit, what stops people getting a good death, according to Philip, is our inability to talk about it, often till it’s too late.

“We don’t talk about it in a meaningful way, or grown up way. Certainly not in a nuanced way,” she says.

That’s something Jessie Williams wants to change. She’s CEO of the Groundswell Project, a not-for-profit that is trying to change the way Australians talk about death.

Once upon a time, Williams says, death was sudden and it was everywhere. But as we got wealthier, as medical science advanced, we were better able to draw out our final years, and push it away.

“We don’t see death, we don’t touch it and we don’t smell it,” Williams says.

Williams, who works with businesses, and runs public campaigns, to promote what she terms “death literacy”, says she’s felt a bit of a change during the pandemic.

“We’ve been overwhelmed — we’ve seen more engagement from new people coming on board.

“We’ve had more people coming forward for end of life planning workshops, more people are reaching out to access materials.”

In his work as a general practitioner, Rhee says he’s had more patients wanting to talk about death. They’ve seen the numbers, and the pictures. They don’t want to go like that.

“They see people passing away, and they think about it a bit more,” he says.

The pandemic has upended our lives so much in under a year that it’s hard to tell what will stay entrenched. Even habits like social distancing and hand hygiene, so much a part of our conversations in March, seem to have fallen by the wayside a little.

But perhaps this period, where death is everywhere, could start to subtly rewire how we view the end.

When we understand pain

Sometime around the 4th or 5th Century BCE, in what is now Nepal, there lived a prince. Raised amid total luxury, the prince’s parents did everything to shield him from nasty, brutish and short life outside the palace grounds.

If you can believe it, the prince didn’t leave the palace till he turned 29. The first thing he saw when he’d snuck out was a man whose body was crippled by ageing. He’d never seen old age. Next was a sick man. He’d never seen disease. The prince then came across a funeral procession. He’d never seen death either. The last thing the prince saw was an ascetic — a man who’d given up life. The prince returned troubled by what he saw. The next day, the man who would become the Buddha gave up everything. Jarred by suffering and death, he chose to live the life of an ascetic.

One moral of the Buddha’s story is that the experience of death, of realising the depths of human suffering and the limits of our own mortality, can change us. Like the Buddha, many in the affluent West grow up insulated from death. And while grappling with our own mortality doesn’t necessarily produce such a radical transformation, it at the very least produces conversations and feelings we might not otherwise have.

Philip says when people start talking about death, it can be a moving, humbling and relieving experience. Often, the conversations they have aren’t laced with morbidity. Instead, they’re often far more mundane. People talk about what they value, and, at a time when they’re at their most mature, decide what matters to them.

Perhaps this is the way into talking about death. Because so much of our discomfort around dying is part of a larger, more innate human difficulty with talking about things that are inconvenient. We like to sweep uncomfortable conversations under the rug and forget about them.

The sooner those conversations about who or what matters to us happen, the better. As Philip says:

“You have to tell people you love them, or you forgive them, or you thank them. If those things are unsaid that’s a great tragedy for those left behind.”

Complete Article HERE!

Cancer, Religion and a ‘Good’ Death

It is hard to know how much my patient, caught in an eternal childhood, understood about his cancer.

By A. Sekeres, M.D.

When I first met my patient, three years ago, he was about my age chronologically, but caught in an eternal childhood intellectually.

It may have been something he was born with, or an injury at birth that deprived his brain of oxygen for too long — I could never find out. But the man staring at me from the hospital bed would have been an apt playmate for my young son back home.

“How are you doing today, sir?” he asked as soon as I walked into his room. He was in his hospital gown, had thick glasses, and wore a necklace with a silver pendant around his neck. So polite. His mother, who sat by his bedside in a chair and had cared for him for almost half a century, had raised him alone, and raised him right.

We had just confirmed he had cancer and needed to start treatment urgently. I tried to assess what he understood about his diagnosis.

“Do you know why you’re here?” I asked him.

He smiled broadly, looking around the room. “Because I’m sick,” he answered. Of course. People go to hospitals when they’re ill.

I smiled back at him. “That’s absolutely right. Do you have any idea what sickness you have?”

Uncertainty descended over his face and he glanced quickly over to his mother.

“We were told he has leukemia,” she said. She held a pen that was poised over a lined notebook on which she had already written the word leukemia at the top of the page; I would see that notebook fill with questions and answers over the subsequent times they would visit the clinic. “What exactly is that?” she asked.

I described how leukemia arose and commandeered the factory of the bone marrow that makes the blood’s components for its own sinister purposes, devastating the blood counts, and how we would try to rein it in with chemotherapy.

“The chemotherapy kills the bad cells, but also unfortunately the good cells in the bone marrow, too, so we’ll need to support you through the treatment with red blood cell and platelet transfusions,” I told them both. I wasn’t sure how much of our conversation my patient grasped, but he recognized that his mother and I were having a serious conversation about his health and stayed respectfully quiet, even when I asked him if he had questions.

His mother shook her head. “That won’t work. We’re Jehovah’s Witnesses and can’t accept blood.”

As I’ve written about previously, members of this religious group believe it is wrong to receive the blood of another human being, and that doing so violates God’s law, even if it is potentially lifesaving. We compromised on a lower-dose treatment that was less likely to necessitate supportive transfusions, but also less likely than standard chemotherapy to be effective.

“Is that OK with you?” my patient’s mother asked him. I liked how she included him in the decision-making, regardless of what he could comprehend.

“Sounds good to me!” He gave us both a wide smile.

We started the weeklong lower-dose treatment. And as luck would have it, or science, or perhaps it was divine intervention, the therapy worked, his blood counts normalized, and the leukemia evaporated.

I saw him monthly in my outpatient clinic as we continued his therapy, one week out of every month. He delighted in recounting a bus trip he took with his church, or his latest art trouvé from a flea market — necklaces with glass or metal pendants; copper bracelets; the occasional bolo tie.

“I bought three of these for five dollars,” my patient confided to me, proud of the shrewdness of his wheeling and dealing.

And each time I walked into the exam room to see him, he started our conversation by politely asking, “How’s your family doing? They doing OK?”

Over two years passed before the leukemia returned. We tried the only other therapy that might work without leveling his blood counts, this one targeting a genetic abnormality in his leukemia cells. But the leukemia raged back, shrugging off the fancy new drug as his platelets, which we couldn’t replace, continued to drop precipitously:

Half normal.

One-quarter normal.

One-10th normal.

One-20th normal.

He was going to die. I met with my patient and his mother and, to prepare, asked them about what kind of aggressive measures they might want at the end of life. With the backdrop of Covid-19 forcing us all to wear masks, it was hard to interpret their reactions to my questions. It also added to our general sense of helplessness to stop a merciless disease.

Would he want to be placed on a breathing machine?

“What do you think?” his mother asked him. He looked hesitantly at me and at her.

“That would be OK,” he answered.

What about chest compressions for a cardiac arrest?

Again his mother deferred to him. He shrugged his shoulders, unsure.

I turned to my patient’s mother, trying to engage her to help with these decisions. “I worry that he may not realize what stage the cancer has reached, and want to avoid his being treated aggressively as he gets sicker,” I began. “Maybe we could even keep him out of the hospital entirely and allow him to stay home, when there’s little chance …” My voice trailed off.

Her eyes above her mask locked with mine and turned serious. “We’re aware. But we’re not going to deprive him of hope at the end …” This time her voice trailed off, and she swallowed hard.

I nodded and turned back to my patient. “How do you think things are going with your leukemia?”

His mask crinkled as he smiled underneath it. “I think they’re going good!”

A few days later, my patient developed a headache, along with nausea and dizziness. His mother called 911 and he was rushed to the hospital, where he was found to have an intracranial hemorrhage, a result of the low platelets. He slipped into a coma and was placed on a ventilator, and died soon afterward, alone because of the limitations on visitors to the hospital during the pandemic.

At the end, he didn’t suffer much. And as a parent, I can’t say for certain that I would have the strength to care for a dying child at home.

Complete Article HERE!

She watched her mother die.

It inspired her most hopeful novel yet

By Stuart Miller

In the quietly simmering drama of Karolina Waclawiak’s new novel “Life Events,” Evelyn has lost her job, her marriage is flatlining, and she frequently frets about death, especially the eventual passing of her parents. Only when this Silver Lake drifter trains to become a death doula — to have the uncomfortable conversations that help the terminally ill come to terms with the life they lived — does she begin to shift from dreading the future to living in the present.

Evelyn is in a near constant state of “pre-grieving,” or what others call “anticipatory grief,” Waclawiak said during a phone interview last spring. “But we have no control over grief. That’s not how it works at all.”

The author of two previous novels began writing “Life Events” six years ago. “It’s unfortunately very timely,” says Waclawiak. “We’re all in this collective grief now. Our loved ones are dying alone, and I can’t think of anything worse. We’re all going to be collectively traumatized, and that’s something we’re going to have to deal with.”

Waclawiak’s initial inspiration was an episode of the podcast Criminal about an “exit guide,” a companion for terminally ill people ending their lives. Fascinated by new approaches to end-of-life issues, she watched videos of people working in the death-with-dignity movement; soon, she took a death doula course herself.

While her research explored the broader societal changes behind the movement, the novel’s themes are intimately personal and somewhat autobiographical. Waclawiak helped care for her grandfather when he was dying 13 years ago. Her mother, who was sick off and on since Waclawiak was 12, was diagnosed with cancer in 2015, soon after Waclawiak started writing “Life Events.” She died last September.

“Obviously this was a big part of why I wrote this,” she says, adding that she writes to understand her pain. “I start with a larger question that I’m trying to face, not necessarily answer.”

In her first novel, “How To Get Into the Twin Palms,” also set in L.A. and featuring a Polish immigrant who passes herself off as Russian, the big question was, “Who are you if you take away your ethnic identity?” Her follow-up, “The Invaders,” grappled with the “limitations and stresses” of living among people of a higher socioeconomic class than you are.

Those questions too arose from Waclawiak’s life. Her parents fled Communist Poland when she was two, eventually setting in suburban Connecticut. “I’m extremely Americanized, but I always felt like an outsider,” says Waclawiak, who studied screenwriting at USC and then worked as an assistant on “The Simpsons.” After getting an MFA at Columbia University, she began writing screenplays in New York — the well-received “AWOL” and a second film that was in preproduction when the pandemic hit. Now she’s back in the city where “Life Events” is set. (“Set” is an understatement: Each of her books is suffused with a deep sense of place, owing to Waclawiak’s road trips through the regions she’s writing about.)

Waclawiak believes her background has better prepared her for facing death than most Americans. On return trips to Poland, her family would join others who spend Saturdays at the cemetery, visiting dead relatives and cleaning their gravestones. “There’s a sense of ritual there,” says Waclawiak, “while Americans approach death with a sense of fear and denial.”

Despite its morbid subject matter, “Life Events” is more optimistic than her previous work, in which the protagonists sometimes seemed hellbent on self-sabotage or even self-destruction. In contrast, Evelyn’s work with her dying clients helps her reassess everything, from her marriage to her long-term future, with newfound clarity.

“I felt a book about death was going to be tough to read, and I was thinking about the reader’s experience,’” Waclawiak says. “I really wanted Evelyn to use her proximity to death to be a catalyst to push herself out of this stagnation and to feel a sense of hope, because you have to. This life is so hard.”

Struggling to give Evelyn more control over her messy life, Waclawiak wrote an entire first draft in the third person, then threw almost all of it away. “Evelyn had to have a sense of agency,” she says. “That awareness that you have choices is a really huge shift in the storytelling.”

Call it a midlife awakening: Since writing her last novel, Waclawiak turned 40 and watched her mother get sicker. “You can’t help but take a microscope to the way you are living,” she says. Her mother, approaching her life’s end, pushed Waclawiak to think about her own future — about “seeing what I can do differently now and how I can change my perspective.”

What colleagues notice most about Waclawiak’s work is that fine balance between fatalism and optimism. She is not a “cheerful writer, but she’s not reflexively cynical,” says Ben Smith, the New York Times media columnist and former editor in chief of Buzzfeed, where Waclawiak works as an editor. “She captures the desperation Americans feel in leading superficially ordinary lives.”

Emily Bell, who edited “Life Events” at Farrar, Straus and Giroux, praises the author’s “ability to balance an understated tone with high emotional stakes” as she explores “what it means if you don’t fulfill the expectations of society.”

As for Waclawiak’s expectations, she has always held a day job while writing. “I never had illusions that my creative work would pay the bills,” she says, “and that gives me the freedom to write weird stuff.”

She knows some readers “have an issue with complicated women who don’t always make the best choices for themselves,” but she refuses to tidy up her fiction. “There’s an expectation of how women should behave; they shouldn’t be messy or be complicated in a way that seems vulnerable or gross. But there are countless male narrators in fiction and all over television who are highly self-destructive.”

Waclawiak became so frustrated by aspersions on her “unlikable female narrators” that she designed a course at Columbia around such characters. “Let me put a woman up against the wall and see how she squirms out of whatever situation I put her in, not in a way that feels exploitative,” she says. “It’s about realizing there’s something to learn in the suffering and the pain.”

In “Life Events,” it’s about Evelyn learning not just that she has choices but that she has the chance to create new ones — a wisdom that emerges, ironically, from coping with the one thing no one can opt out of. “When the people you love are dying, it changes you, and you really start to question what you thought was important,” Waclawiak says. “I wanted the reader to think about how consciously they were living their own lives.”

Complete Article HERE!