Month: December 2021

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How your brain copes with grief, and why it takes time to heal

Grief is tied to all sorts of different brain functions, says researcher and author Mary-Frances O’Connor. That can range from being able to recall memories to taking the perspective of another person, to even things like regulating our heart rate and the experience of pain and suffering.

by Berly McCoy

Holidays are never quite the same after someone we love dies. Even small aspects of a birthday or a Christmas celebration — an empty seat at the dinner table, one less gift to buy or make — can serve as jarring reminders of how our lives have been forever changed. Although these realizations are hard to face, clinical psychologist Mary-Frances O’Connor says we shouldn’t avoid them or try to hide our feelings.

“Grief is a universal experience,” she notes, “and when we can connect, it is better.”

O’Connor, an associate professor of psychology at the University of Arizona, studies what happens in our brains when we experience grief. She says grieving is a form of learning — one that teaches us how to be in the world without someone we love in it. “The background is running all the time for people who are grieving, thinking about new habits and how they interact now.”

Adjusting to the fact that we’ll never again spend time with our loved ones can be painful. It takes time — and involves changes in the brain. “What we see in science is, if you have a grief experience and you have support so that you have a little bit of time to learn, and confidence from the people around you, that you will in fact adapt.”

O’Connor’s upcoming book, The Grieving Brain, explores what scientists know about how our minds grapple with the loss of a loved one.

Interview highlights

On the grieving process

When we have the experience of being in a relationship, the sense of who we are is bound up with that other person. The word sibling, the word spouse implies two people. And so when the other person is gone, we suddenly have to learn a totally new set of rules to operate in the world. The “we” is as important as the “you” and “me,” and the brain, interestingly, really does encode it that way. So when people say “I feel like I’ve lost part of myself,” that is for a good reason. The brain also feels that way, as it were, and codes the “we” as much as the “you” and the “I.”

On the difference between grief and grieving

Grief is that emotional state that just knocks you off your feet and comes over you like a wave. Grieving necessarily has a time component to it. Grieving is what happens as we adapt to the fact that our loved one is gone, that we’re carrying the absence of them with us. And the reason that this distinction makes sense is, grief is a natural response to loss — so we’ll feel grief forever. A woman who lost her mother as a young person is going to experience that grief on her wedding day because it’s a new moment where she’s having a response to loss.

But “grieving” means that our relationship to that grief changes over time. So the first time, maybe even the first 100 times, you’re knocked off your feet with grief, it feels terrible and awful and unfamiliar. But maybe the 101st time, you think to yourself, “I hate this, I don’t want this to be true. But I do recognize it, and I do know that I will get through the wave.”

On the emotions involved in grieving

The range of emotions that someone experiences when they’re grieving is as long a list as the range of emotions we have in any relationship. Commonly there’s panic, there’s anxiety, there’s sadness, there’s yearning. But what we sometimes forget is that there’s also difficulty concentrating and confusion about what happens next.

I am often struck by the intensity of the emotions. Grief is like someone turned up the volume dial all of a sudden. The emotion that I think often interferes with our relationships and friendships when we’re grieving is anger, because the anger feels so intense. You have someone blow up at a dinner party and you think, “What’s happening with them?” And then to try and remember, “Oh, they’re grieving and everything is amped up a little bit.”

On what is happening in our brains

We have neuroimaging studies basically of grief, of the momentary reaction where you have that emotional yearning experience. There are less than a handful of studies looking at more than one moment in the same person across time — so looking at their grieving trajectory. What we know right now in these early days of the neurobiology of grief is really coming from snapshots.

Having said that, one of the things that we know is that grief is tied to all sorts of different brain functions we have, from being able to recall memories to taking the perspective of another person, to even things like regulating our heart rate and the experience of pain and suffering. So lots of different parts of the brain are orchestrating this experience that we have when we feel grief.

On prolonged grief

When you’re knocked over by that wave of grief, you want to know, “When will this end?” From a research perspective, there is a very small proportion of people who might have what we now call prolonged grief disorder, something we start looking for after six months or a year [after a death or loss]. … And what we are seeing, [in such cases], is that this person has not been able to function day to day the way that they wish that they could. They’re not getting out the door to work or getting dinner on the table for their kids or they’re not able to, say, listen to music because it’s just too upsetting. So these types of concerns … suggest it would be helpful to intervene and get them back on the healing trajectory where they will still feel grief, but they will adapt to it differently.

The older term that we were using for a long time was “complicated grief.” And although prolonged grief disorder is the term we’ve settled on, there’s a reason that I like the term complicated — because it makes you think of complications.

As an example, one of those is the grief-related rumination that people sometimes experience. The better term for that that people will recognize is the “would’ve, should’ve, could’ve” thoughts. And they just roll through your head over and over again. The problem with these thoughts — we sometimes call “counterfactuals” — is that they all end in this virtual scenario where the person doesn’t die. And that’s just not reality. And so, by spinning in these thoughts, not only is there no answer — there are an infinite number of possibilities with no actual answer of what would have happened — but it also isn’t necessarily helping us to adapt to the painful reality that they did die. And so our virtual version is not really helping us to learn how to be in the world now.

It’s less than 10% of people who experience prolonged grief disorder. And what that means is 90% of people experience difficult grief and suffering, but don’t have a disorder after losing a loved one. I think it’s so important to remember that … because we don’t want to hide grief away … in a psychiatrist’s office or a counselor’s office, except in indications where that would be helpful to get people back on track.

On how to support grieving people in your life

I think when you care for someone who is going through this terrible process of losing someone, it really is more about listening to them and seeing where they’re at in their learning than it is about trying to make them feel better. The point is not to cheer them up. The point is to be with them and let them know that you will be with them and that you can imagine a future for them where they’re not constantly being knocked over by the waves of grief.

On losing people to the pandemic

One of the topics I think is not much in the national conversation is that so many of the deaths of our loved ones happened in hospitals, emergency rooms and ICUs — and we weren’t there to see it. And that is for a very good reason, because we were trying to stop the spread of COVID. So having family members in hospitals did not make sense.

But it means that people are without these memories of watching their loved one become more ill and watching those changes that happen in their body that prepare our mind for the possibility that they might die. To go through that process without those memories makes it much harder to learn what has happened. So many people feel it hasn’t really sunk in yet that they’re gone.

What I don’t hear very often is the fact that with COVID, the loved ones that are left behind made the sacrifice of not being with their loved ones in the hospital in order to stop the spread. And that sacrifice needs to be recognized, I think. In part to help people heal, so that it’s understood why they’re having such a difficult time. And to elevate the understanding that they did something for the greater good — and they gave up something while they did it.

Complete Article ↪HERE↩!

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Grief Is Evidence of Love

Yes, mourning is an acknowledgment of loss. But the late scholar bell hooks argued that it is also a way of honoring our commitment to those who have died.

By Kellie Carter Jackson

Fourteen years ago, the day before Thanksgiving, I lost my sister Tracie to breast cancer. She was 37, married, and the mother of three children. I can’t remember what happened the next day—what we ate or who even cooked. Everything was a blur. A couple of days after we laid Tracie to rest, my mother called me. William, my only brother, was being hospitalized. Doctors didn’t know what was wrong, but he couldn’t breathe. I refused to believe that anything bad could happen to him, that the world could be this cruel, this relentless. But four days after he was hospitalized, he died. I had not yet unpacked my bags from Tracie’s funeral. The grief was so overwhelming, so consuming, so mind-boggling that I collapsed. Two weeks after William’s funeral, it was Christmas. My four sisters and I all gathered at my parents’ home. It was like we were sleepwalking. There, but not really present.

As of this holiday season, Americans have lost more than 800,000 people to the pandemic. And the distress that many of us face isn’t always tied to death: Scores are suffering through the loss of homes, income, stability, and security. As the professor Chad Broughton wrote for The Atlantic, “The country is grappling with an onslaught of grief.” When people ask me how my family got through some of the toughest pain we have ever faced, I venture that it was not the passing of time, nor keeping busy, nor social withdrawal. For us, it was community. Our church sent us food for months. Our friends came and stayed with us on a rotating schedule of visitations. Mothers baked home-cooked meals; elders laid hands on us and prayed. Everyone gave care, and we were almost never alone. In the same ways that we shared in celebration of new life, we also came together in death and loss.

That collective process is what bell hooks, the prolific author and Black feminist who died last week at age 69, described in her seminal 2000 book, All About Love. “Rarely, if ever, are any of us healed in isolation,” she wrote. “Healing is an act of communion.” hooks urged readers to be disturbed by the Eurocentric approach to individuality, arguing that the warped ethos of attainment without help encourages people to feel fulfilled only when they have accomplished or conquered something alone. Yet one should not seek to conquer grief, because, according to hooks, grief in its most basic form is an expression of love. Grief is an acknowledgment of loss, yes, but it is also a way of honoring our commitment to those who have passed on.

Initially, I hadn’t wanted to talk about my siblings’ death. And many times when I did, I was quick to qualify the circumstances, to explain their diseases for fear of some racist stigma being projected onto them. I often felt that racism was going to hijack the sympathy that some acquaintances and strangers would have otherwise had for me. I feared people asking, “You had two siblings die, to what, gun violence? AIDS?” For many Black people, the cause of death is a measurement of how much compassion should be shown; somehow even in death we must be respectable. But hooks wrote that “love knows no shame. To be loving is to be open to grief, to be touched by sorrow, even sorrow that is unending. The way we grieve is informed by whether we know love.” I no longer have shame regarding my siblings’ deaths, only regret that, at one point, I did.

What hooks gave me was the language to understand grieving and healing as radical, communal acts. “Love invites us to grieve for the dead as ritual of mourning and as celebration,” she wrote. “We need not contain grief when we use it as a means to intensify our love for the dead and dying, for those who remain alive.” hooks condemned the capitalist patriarchy that prizes domination and categorizes love as weak; she framed love as powerful simply because it doesn’t seek power. Her work prioritizes human vulnerability and suffering, positing that through connection we can find the antidote to pain.

This holiday season, I will commune with my husband and my children—my son, who shares William’s name, and my two daughters, one of whom shares Tracie’s birthday. We will gather with loved ones and ones in need of love, and affirm the beauty of shared lives. “Only love can heal the wounds of the past,” hooks wrote. Fourteen years later, I know that she was right. My grief will always be unending, because so is my love.

Complete Article ↪HERE↩!

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ePOLST Registries: Moving into the Digital Age

Providers should be aware of and be involved in the conversation about these upcoming registries as they will interact with them frequently.

The upper half of the California POLST.

By ,

You arrive on scene to a call of a 72-year-old woman with metastatic lung cancer who has difficulty breathing at her nursing facility. The woman is unresponsive and thready pulses become difficult to palpate. The nursing facility staff is unable to locate any paper POLST forms. What are your next steps?

The POLST program – Physician Orders for Life-Sustaining treatment – was developed by medical ethicists in Oregon in 1991 as a tool to help honor patients’ wishes for end-of-life treatment.1 Today, all 50 states and Washington, DC, have existing POLST programs with varying functional capacities and names for the actual form (i.e. Medical Order for Life Sustaining Treatment (MOLST), Physician Order for Scope of Treatment (POST) etc.). POLST forms are most useful for people who are medically frail or seriously ill from chronic, progressive health conditions. They contain important, actionable medical orders that are portable for use across health settings – such as emergency medical services (EMS), emergency departments and long-term care facilities.

Several studies have demonstrated the efficacy of POLST forms over the years. POLST forms have been shown to have significant advantages over traditional methods to communicate preferences regarding life-sustaining treatments,2 and their use has been shown to result in a very high percentage of patients receiving care consistent with their prior expressed wishes.3 However, their use is not without barriers. One key barrier can be their inaccessibility. The form, if not readily available to health care providers, isn’t helpful in time-critical situations. A 2004 survey of Oregon EMTs showed a quarter of respondents stated that they were unable to successfully find a POLST in a timely manner the last time they had expected to do so.4 In 2009, Oregon legislation introduced an electronic POLST registry. This was to address EMS challenges in accessing or locating original POLST orders when they arrived on the scene of a medical emergency. By 2015-2016, nearly half of all deaths in Oregon had an active form in their electronic registry.5 As of 2020, the Oregon Registry has almost half a million POLST forms.6

California’s Assembly Bill No. 1234 was introduced by Assembly Member Arambula (D-Fresno) in February 2021 and would require the California Health and Human Services Agency to establish a statewide electronic POLST registry system.7 It is being backed by the Coalition for Compassionate Care of California (CCCC) and Arambula, himself, is a prior emergency physician. In addition to creation of a statewide registry, the bill lays out a timeline for its implementation (2024-2026), ensures that an electronic POLST (ePOLST) would have the same legal standing as a paper form, and that electronic signatures could be used.

As of 2020, at least 10 states have started development of or already created statewide registries.8 Some registries have capability for electronic form completion, some function simply as databases, and others have a hybrid system. Input from pilot studies that have been performed in San Diego and Contra Costa County along with experiences with ePOLST registries from other states are helping shape what California’s statewide registry will eventually look like.

The current progress of POLST state registries as of April 2021.
The current progress of POLST state registries as of April 2021.

ePOLST registries have several advantages over the traditional POLST. The main advantage being their universal accessibility by healthcare providers and patients. Other potential advantages include the ability to provide educational material to patients at time of form completion, development of mechanisms to prevent incomplete or incongruent (i.e. Full Code + Do Not Intubate) form submissions,9 and remote signing. However, there are several potential pitfalls to be mindful of – such as assuring the repositories are HIPPA-compliant, easily searchable, interface with local health information exchanges, and have back-up mechanisms for access (i.e. call center) in case of technology failure.

EMS will be at the forefront of interfacing with these registries and as such should be involved in the conversation regarding their development. Properly developed and implemented, a state-wide ePOLST has the opportunity to improve EMS and emergency departments provider POLST access difficulties, facilitate accurate POLST completion, and improve our ability to provide patient’s with the care they want near the end-of-life.

References

  1. National POLST: History [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/history/
  2. Hickman SE, Nelson CA, Perrin NA, Moss AH, Hammes BJ, Tolle SW. A comparison of methods to communicate treatment preferences in nursing facilities: traditional practices versus the physician orders for life-sustaining treatment program. J Am Geriatr Soc. 2010 Jul;58(7):1241-8. doi: 10.1111/j.1532-5415.2010.02955.x. PMID: 20649687; PMCID: PMC2963454.
  3. Hopping-Winn J, Mullin J, March L, Caughey M, Stern M, Jarvie J. The Progression of End-of-Life Wishes and Concordance with End-of-Life Care. J Palliat Med. 2018 Apr;21(4):541-545. doi: 10.1089/jpm.2017.0317. Epub 2018 Jan 3. PMID: 29298109.
  4. Zive DM, Schmidt TA. Pathways to POLST registry development: Lessons learned. Portland, OR: Center for Ethics in Health Care Oregon Health & Science University. 2012.
  5. Dotson A, Broderick A, Steinmetz V, Weir J, Anthony S. (2019) California’s POLST electronic registry pilot: Lessons for all states. Oakland, CA: California Health Care Foundation. Available from: https://www.chcf.org/wp-content/uploads/2019/09/CaliforniasPOLSTElectronicRegistryPilot.pdf
  6. Dotson, A. (2020). Oregon POLST registry annual report. Portland, Oregon: Oregon POLST Registry. Available from: https://orpolstregistry.files.wordpress.com/2021/03/2020-oregon-polst-registry-annual-report.pdf
  7. Physician Orders for Life Sustaining Treatment forms: registry, Cal. Assemb. B. 1234 (2021-2022)
  8. National POLST: Registry Information [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/wp-content/uploads/2021/03/2021.03-National-POLST-Registries-Matrix.pdf
  9. POLST California: POLST eRegistry in California: Challenges and opportunities [Internet]. Sacramento: Coalition for compassionate care of California; c2021. [cited 2021, Nov 3]. Available from: https://capolst.org/wp-content/uploads/2020/11/POLST-INTERVIEW-REPORT_11-22-19.pdf

Complete Article ↪HERE↩!

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An ice cream man died of cancer.

A funeral procession of ice cream trucks honored ‘the king.’

Hassan Dervish, above, was lauded by his brother as a “really honest and hard-working person” for his decades of work as an ice-cream vendor in England.

By Timothy Bella

Savash Turkel was among a small group of family and friends who showed up on a dreary Friday morning in southeast London to bury his brother, Hassan Dervish, an ice cream man for more than 40 years who recently died of cancer.

But something was different about this December funeral procession, Turkel told The Washington Post: The jingles from ice cream trucks, driven by colleagues who knew and admired Dervish, flooded the streets in memory of a 62-year-old man hailed by loved ones as the “king of the ice cream.”

“The first one came and then there was another and then there was another,” said Turkel, 57. “All of a sudden, there were probably 10 ice cream trucks that followed him all the way to the cemetery. There were so many ice cream trucks for my brother.”

The moment with the 10 ice cream trucks was captured in an emotional video posted to Twitter that’s been viewed more than 10 million times as of Saturday afternoon.

“Just witnessed an ice cream man’s funeral and all the ice cream vans came and followed in solidarity,” tweeted Louisa Davies, the woman who posted the viral video. “I AM SOBBING.”

As observers pointed out on social media, the procession for Dervish follows in the tradition of ice cream vendors honoring fallen colleagues at their funerals in the United Kingdom. In February, 10 trucks gathered to celebrate the life of Pasquale Marucci, a popular, Italian-born ice cream man in Hampshire, England, according to the BBC. A similar funeral procession unfolded in July for John Lennie, who served generations of customers in Wimborne Minster, England.

After growing up in Cyprus with a tailor for a father and stay-at-home mother, Dervish emigrated to the U.K. in his early 20s, Turkel said. The brother noted how Dervish, one of four siblings in the family, had always loved ice cream and was curious about what life would be like to bring smiles to so many people.

“He was in the ice cream trade for all of his life,” he said.

After arriving around 1980, Dervish made a good life for himself in southeast London, Turkel said, and later married and had two children. His ice cream dreams had also become a reality, setting up an ice cream factory in the Lewisham neighborhood in the early 2000s.

From the time he started serving ice cream in the area, Dervish wanted to not just be a friendly face with sweet treats but also someone who gave back to his family and friends, his brother told The Post.

“He was passionate about the work he was doing. He was always helping out all his friends. He helped them all out,” Turkel said. “That’s why so many people loved him. My brother was a really honest and hard-working person.”

His health, however, took a turn for the worse around 2019, after he was diagnosed with a cancer that weakened him tremendously, Turkel said.

“The last two years, he was suffering,” his brother recalled. “He was taking all the treatments and everything.”

Dervish died on Nov. 12, his brother said, after fighting Stage 4 cancer that had “spread all throughout his body.”

“He couldn’t survive it, unfortunately,” Turkel told The Post.

When the funeral was scheduled more than a month later, coronavirus safety restrictions limited the number of people who could come for the Friday ceremony, the brother said.

That’s when the jingles from the ice cream trucks — Mr. Softee, Akan’s Soft Ice Cream, Mister Creamy — became the soundtrack for Dervish’s funeral.

Even though not as many people were at the funeral because of safety precautions, the presence of the ice cream vendor community at the procession left Turkel speechless.

“What can I say?” he said. “All of his friends, they came to pay their last respects to him.”

Videos of the funeral procession have gotten a huge reaction on social media, with many people admiring the sadness and beauty of the tribute. Davies, whose video has reached millions, tweeted that any money made off the video would be donated to a charity of Dervish’s family’s choice.

Ismail Mehmet, who said he was at Dervish’s funeral, captured a video of the ice cream trucks as they pulled into the cemetery.

“I’m amazed how much of an impact it has had to the area,” Mehmet wrote.

Turkel said that while his brother’s family and friends are emotionally exhausted and overwhelmed by the millions who’ve responded to the sweet procession, they are grateful that many more can see how Dervish was “a friend to everyone.”

“He touched so many hearts in so many ways,” Turkel said. “It makes me so proud of him.”

Complete Article ↪HERE↩!

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‘The bawdy, fertile, redheaded matriarch has kicked it’

— Son’s hilarious obituary goes viral

The obituary concludes with details of a planned funeral service in May next year, ‘a very disrespectful and totally non-denominational memorial … most likely at a bowling alley in Fayetteville.’

Son writes loving and unusual 1,000-word tribute to Renay Mandel Corren, who died in El Paso, Texas at age 84

By

Some obituary notices open with the grand achievements of a life well-lived, or the tender details of a person’s passing with loved ones at their side. The death in El Paso, Texas, of Renay Mandel Corren, however, was marked in somewhat more unorthodox fashion. “The bawdy, fertile, redheaded matriarch of a sprawling Jewish-Mexican-Redneck American family has kicked it,” it read.

According to the family’s obituary published in the Fayetteville Observer, Corren, who died on Saturday at the age of 84, will be mourned “in the many glamorous locales she went bankrupt”.

They include her birthplace of McKeesport, Pennsylvania, “where she first fell in love with ham, and atheism”; Kill Devil Hills, North Carolina, “where Renay’s dreams, credit rating and marriage are all buried”; and Miami, Florida, “where Renay’s parents, uncles, aunts, and eternal hopes of all Miami Dolphins fans everywhere, are all buried pretty deep”.

The remarkable – and hilarious – 1,000-word obituary was written by Corren’s son Andy, and quickly went viral after it was published on Wednesday.

The tribute to a mother known fondly to her family as “Rosie” is a partly tongue-in-cheek account of a long and eventful life, liberally sprinkled with anecdotes and encounters, some of which Mr Corren admits might not even be true. But the banter represents a loving tribute to a lady they still can’t quite believe has actually died.

“Renay has been toying with death for decades, but always beating it and running off in her silver Chevy Nova,” the obituary states.

“Covid couldn’t kill Renay. Neither could pneumonia twice, infections, blood clots, bad feet, breast cancer twice, two mastectomies, two recessions, multiple bankruptcies, marriage to a philandering Sergeant Major, divorce in the 70s, six kids, one cesarean, a few abortions from the Quietly Famous Abortionist of Spring Lake, NC or an affair with Larry King in the 60s.”

It also lists her many talents: “She played cards like a shark, bowled and played cribbage like a pro, and laughed with the boys until the wee hours, long after the last pin dropped.”

“Renay didn’t cook, she didn’t clean, and she was lousy with money, too. Here’s what Renay was great at: dyeing her red roots, weekly manicures, dirty jokes, pier fishing, rolling joints and buying dirty magazines.”

She lived her final days “under the care, compassion, checking accounts and, evidently, unlimited patience of her favorite son and daughter-in-law, Michael and Lourdes Corren, of [the] world-famous cow sanctuary El Paso.”

Among the numerous family members she leaves behind, including children, grandchildren and great-grandchildren, is her “favorite son”, namely “the gay one who writes catty obituaries in his spare time, Andy Corren, of – obviously – New York City.”

The obituary concludes with details of a planned funeral service in May next year, “a very disrespectful and totally non-denominational memorial … most likely at a bowling alley in Fayetteville.”

Meanwhile, Mr Corren says he and his five siblings have given up on receiving an inheritance. “The family requests absolutely zero privacy or propriety, none whatsoever, and in fact encourages you to spend some government money today on a one-armed bandit, at the blackjack table or on a cheap cruise to find our inheritance,” he writes.

“For Larry King’s sake: LAUGH. Bye, Mommy. We loved you to bits.”

Complete Article ↪HERE↩!

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Body farms, human composting, conservation cemeteries: Why I wanted to create a better plan for my end-of-life directive

Leaving a legacy that ensures a sustainable earth for our loved ones and our communities.

By Mallory McDuff

When I was in middle school, my father built a prototype of a pine casket, which fit in the palm of his hand, the wood sanded smooth to the touch. My mother kept her jewelry in the box, which sat on her dresser for years.

“My funeral should be a celebration of life, and I’d like to be buried without embalming or a concrete vault,” my dad told us. “I hope to build my own casket like this before I die.”

At the time, his plans for death felt like background noise, the idiosyncrasies of a parent in a teenager’s eyes.

Then, in my late 30s, my parents died in mirror-image cycling accidents, hit by teen drivers on rural Alabama roads, two years apart. My three siblings and I managed to fulfill my father’s wishes, which gave us a way forward through our shock and then grief.

Fast forward to my 50s, with teenagers of my own: I’d been invited to share the story of my father’s green burial at a conference to help others plan ahead for their own deaths. I looked out at 100 people gathered in the parish hall of my Episcopal church, the Cathedral of All Souls, in Asheville, N.C.

Yet the conference soon revealed I had work of my own to do on this very topic of life and death.

During a session about end-of-life directives, a close friend whispered to me, “I need to revise my will since my ex is still in it!”

My final wishes didn’t align with my values

I hadn’t looked at my final documents since I’d drafted them 10 years earlier, after my own divorce and my parents’ passing. As the workshops and breakout groups proceeded, my face became flushed: I’d chosen cremation for its affordability and convenience — as straightforward as calling in and picking up a prescription.

My final wishes didn’t align with my values as an environmental educator or the example my father had given me.

One of the presentations focused on home funerals, keeping a vigil for the deceased at home, rather than taking the body directly to a mortuary.

Discovering a conservation cemetery

“No state law requires embalming,” Yongue said. “And it’s legal to transport a body in your car.”

She shared heartbreaking, but intimate, images of a teenage girl in a white dress helping carry the shrouded body of her mother to the gravesite at Carolina Memorial Sanctuary, a conservation cemetery which Younge founded that protects the land in perpetuity through conservation easements.

I’d walked the land at this burial ground, which felt like strolling in a wooded preserve, rather than a manicured lawn, as the graves are surrounded by native grasses, trees and shrubs.

I turned to the friend next to me. Our oldest daughters, now in college, had gone to preschool together. Her eyes, much like mine, were filled with tears.

During my session, I described how my father discovered that his neighborhood cemetery in Fairhope, Ala., didn’t require a concrete vault in the grave. One month after my mother was killed, my dad read to us a two-page typed document outlining details for his future funeral — like his bluegrass band at the burial and plenty of shovels so that young and old could close the grave.

He was in the best shape of his life, but wanted us to have a plan. When he was killed two years later (despite biking with a fluorescent vest and reflective lights on the shoulder of the road), we followed his wishes for a burial that restored, rather than degraded, the Earth.

“My sister and I are likely the only graduates of Fairhope High School who’ve prepared our father’s body for burial in the refrigerated room of the local funeral home,” I told the audience.

My dad’s body had been transferred to the coroner’s office and then the mortuary. Yet the funeral home director agreed to let us wrap him in my mother’s linens, according to his plan, and place his body in a handcrafted pine casket, constructed by a friend who pulled an all-nighter for the job.

Providing a plan for my final wishes

After listening to the other speakers at the conference, I wanted to provide the same type of plan for my two daughters, 22 and 15, who seemed more comfortable with emergency-room resuscitations on “Grey’s Anatomy” than talking about our own mortality. But as a single mom, I knew this journey would need to include them both, even if they weren’t ready to fully listen.

When I returned home that night, I opened the file cabinet in my bedroom and took out the folder containing my will, cremation directive and advance care directive. My final wishes for cremation didn’t seem to fit me in my 50s, given my children’s uncertain future in a climate emergency.

I’d completely forgotten my instructions for a party after my funeral with beer and barbecue from Okie Dokie’s Smokehouse, a restaurant I loved when my young children needed a quick dinner on a school night. (Per the menu, it offered “swine dining.”)

Since the conference, I’d learned about alternatives to burning fossil fuels to cremate a body into pulverized bones and ashes. While more than 50% of people in the U.S. opt for flame cremation, I’d heard about aquamation—also called alkaline hydrolysis—that uses water and lye to dissolve a body, rather than fossil fuels, and is legal in 20 states.

I’d also read about a “body farm” only an hour away at Western Carolina University, where you could donate your body to contribute to research on decomposition without the embalming required by medical science. The research at this body farm had contributed to the innovative process called human composting, which transforms a body into nutrient-rich soil, now legal in Washington state and Colorado. I wanted to know more.

That night, I decided to embark on a one-year journey to revise my final wishes with climate and community in mind. My directives for my body would have to be affordable and acceptable to my daughters.

During the year, I’d end up discovering a cemetery on the college campus where I live, attending home funerals, interviewing end-of-life doulas, volunteering as a parking attendant at the conservation cemetery and talking to my daughters about the end of our lives, just as my father did with me. My book, “Our Last Best Act: Planning for the End of Our Lives to Protect the People and Places We Love,” tells of that yearlong research.

When I told my youngest about the possibility of a home vigil after I died, she was not amused. “I will sleep in a Motel 6 if that happens,” she said. “I can pay for it myself!”

In that moment, I saw myself — a teenager rolling my eyes as my father handed me a smooth pine casket to hold in my palm — not knowing what tools I’d need to equip me for the years ahead.

I didn’t anticipate my parents’ deaths or the climate crisis we now face. But I have learned from this search that final wishes are an individual decision, a family decision and an ecological decision, with personal stakes affecting both climate and community.

It’s not a metaphor to say we are all one body on this planet. As my father said, “I want a funeral that involves my family and my friends without harm to the Earth.”

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‘Conversations with those dying are some of the most privileged I have had’

by Matthew Townsend

We are born. We live. We die. That said then, death is the only event in life of which we can be certain: an event that, it could be argued, is implicitly linked to life itself. Without life, there can be no death yet, in order to live, so too must we realise that we will, eventually, die.

The thought of death and dying often provokes discomfort and is a conversation that many prefer not to have. When people ask me what my clinical interests are, my passion for end-of-life care is often greeted with an uncomfortable silence. And for very good reason.

“Should we enjoy these conversations with our patients and their families?”

As Vanderveken et al (2019) observe we, as a species, are both hesitant and reluctant to talk about death. It brings into our conscious stream of thought the very thing that we often consciously attempt to avoid: the reality of our finite existence.

This is confirmed by Doughty (2017) who has coined the phrase ‘death avoidance’ to define the process via which someone refuses to engage in anything to do with death or dying.

Often, such thoughts can provoke death anxiety; a psychophysiological response in reaction to contemplating one’s own finitude or threat to one’s existence.

This is considered in research carried out by Fernandez-Dona ire et al (2019) who report that death anxiety can manifest as panic, fear, upset, and physiologic malaise.

Avoiding these conversations, and the necessary reflection and contemplation that accompanies them, has resulted in the end of life being a chapter of our existence shrouded in taboo and forcibly pushed to the back of our minds.

If we consider our life as a story, the closing chapter is one we shy away from reading, even though it is a necessary one in order to sign the book off as complete.

The fear prompted by the thought of death has not simply resulted in an avoidance of it as a topic: a conscious repression of our fears and anxiety has translated into an almost insurmountable problem.

The harsh reality is though, whether or not we choose to admit, we will, eventually die and, in fact, based upon my experiences in clinical practice, is something rarely feared by those living at the end of their lives.

Through my nursing career so far, I have been privileged to sit at the bedside of many people who are approaching the end of their lives: they may have a chronic condition with no trajected end point or are coming to the end of a terminal illness, with only a matter of days or hours left.

Whether the former or the latter, there has often been a common thread between the two: a beautiful, almost existential, peace. Rarely fear. Rarely panic.

But instead, an inspiring positivity and solemnity that confirms to me that the fear we burden ourselves with through the course of our lives can restrict us in our living and is, in any case, unfounded.

This considered then, how can we condition ourselves to not fear the end of life, and how can we approach death with a positivity that seems almost incongruous with its finite state?

Many of the conversations I have had with those at the end of their lives echo research in the field that regards spirituality as an important aspect of end-of-life care with its acknowledgement significantly reducing fears and anxieties (lnbadas, 2018).

That said, let us not confuse spirituality with religiosity. As Tornoe et al (2017) note, spirituality focuses on factors such as relationships, meaningfulness of life, and feelings of self-worth.

Indeed, the World Health Organization (2017) positions the construct of spirituality central to its definition of quality of life, not only recognising it as key, but acknowledging that it becomes more prevalent as one approaches the end of one’s life.

Reading the WHO’s definition of quality-of-life alongside definitions of spirituality, it can be seen how a good quality of life can necessarily translate to a good quality of death.

“I recall with great fondness when I heard roars of laughter from his side-room”

To live in recognition and acknowledgement of death as opposed to in its shadow, will help us remove this taboo and will ultimately improve our relationship with it.

This reinforces my earlier observation: life is inextricably linked to death and to discount the latter negatively impacts the former.

As Lemaster and Moyer (2020) note, our lived experiences and the extent to which we feel we have lived full and meaningful lives removes fear and anxiety of end-of-life issues.

Embracing life will aid us in not just enjoying it but in ensuring that this enjoyment will help remove the fear of death.

Conversations I have had with those who are dying are some of the most privileged and enjoyable I have had in my career.

When I admit this to my family, friends and work colleagues, I am met with the same uncomfortable silence as when people ask me what my clinical interests are. An awkwardness possibly precipitated by using the words ‘enjoyment’ and ‘death’ in the same sentence.

Should we enjoy these conversations with our patients and their families? Should we approach death with a positive optimism?

My answer: absolutely. To acknowledge that someone is dying is not a sign of failure. To acknowledge that someone is dying will not hasten your own death. To acknowledge that death forms an integral part of life should not invoke fear.

Conversely, it should be embraced. It is, after all, our final accomplishment. Conversations I have had are filled with fond memories and often bursting with smiles, happiness, and celebratory nostalgia.

I have recently helped nurse a patient who was at the end of their terminal illness. A similar age to myself, it was a particularly sobering experience. Young people are not supposed to die: it goes against what we are told is the natural order.

We are born, we live, we die and we hope that this last chapter is one that is written many years in the future. Anything that digresses from this catches us off-guard.

Following my patient’s admission to the ward, I soon noticed a common behaviour: an avoidance of talking to him about his death.

Research has shown that nurses are notoriously bad at actively engaging with death (Anderson et al, 2016).

Let us not be too harsh though: we are, after all, only human and to have to deal with it forces us to face our own mortality. That said, my patient was facing his and I was determined that he would not face it alone.

“If we consider our life as a story, the closing chapter is one we shy away from reading”

Over the next few days, we built a strong nurse-patient relationship where we discussed all manner of things.

There were sad moments, but also moments where we both heartedly laughed at, for example, his bucket list and that, in his words, how he was “going to kick the bucket before ticking items off it”.

Through the course of our conversations, there was again a notable absence: fear. He was not afraid of dying, merely sad that he could not have lived a little longer.

This was the significant difference. He also noted that the fact I spoke with him so openly about his death was “refreshing” and “reassuring”.

I recall with great fondness when I heard roars of laughter from his side-room. His mother emerged with an empty teapot and tears in her eyes. Happy tears? Sad tears? A combination of the two? “Are we being too loud?” she asked.

I smiled and shook my head. “Be as loud as you want to be,” I replied. When I checked my patient later, the room was filled with laughter; it was filled with love; it was filled with happiness.

Family and friends had come together to acknowledge what was inevitably happening and to celebrate his life. Fear was nowhere to be seen. Fear would have been out of place. When my patient died, his mother thanked me.

She noted that my positive approach to her son’s death not only helped him, but that she no longer feared death and that she had not realised how simple it was to die.

This woman had witnessed what it actually meant to die and that death is, in fact, usually an incredibly peaceful event.

Kathryn Mannix’s (2015) book, With the End in Mind, aims to remove the taboo of dying and to bring conversations about it into our lived experience.

The observations of my patient’s mother are reinforced in Mannix’s work. As Mannix notes, death, if well managed, is often painless, peaceful and, dare I say, an uncomplicated process?

Significantly, to live in acknowledgement of death is to not live in its shadow. Birth and death are inextricably linked, just sat at different ends of the spectrum of life. We cannot have one without the other.

That said then, to live in fear of death would be a disservice to life. Enjoying life, while simultaneously acknowledging death, will ensure that when the time comes, we approach it not seeing it as something to fear, but instead as a celebration of life.

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