Month: August 2019

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Return to Nature

Green burials go beyond not polluting or wasting. It’s about people needing and caring for land, conducting life-affirming activities there—including death.


In March, Stiles Najac buried her partner, Souleymane Ouattara, at the Rhinebeck natural cemetary and looked forward to returning with their baby son, Zana, to picnic in the woods near his dad.

By Lynn Freehill-MayePhillip Pantuso

Initially, the cemetery in Rhinebeck, New York, appears conventional: businesslike granite squares placed in rows, flags and silk flowers sticking up here and there, grass mowed tight all around.

In one corner, however, a walking path roped off from vehicles invites visitors to stroll into the woods. The area looks wild, but it turns out to be part of the cemetery. A hardwood sign marks it the “Natural Burial Ground.” Cherry, beech, and locust trees stretch tall. Ferns cover the ground. The sweetness of phlox, a purple wildflower, wafts in the air. The lawn portion suddenly looks as contrived as a golf course.

“It’s stark, isn’t it?” Suzanne Kelly, the cemetery’s administrator, says of the contrast. On a spring day, she’s taking us on a tour of the natural section she helped establish in 2014. We step in and she starts describing the deer, wild turkeys, and songbirds that pass through (and also warns us about a poison ivy patch). About 100 yards in, we start to see mounds and a few small fieldstones, some engraved with simple words like “Dear Nature, Thank You, Evelyn.” These 10 acres have been permanently set aside for bodies to be buried without the chemical embalming, nonbiodegradable caskets, or concrete vaults that often accompany the modern American way of death.

Kelly is a thoughtful Gen X academic-turned-garlic-farmer-turned-green-burial-activist-and-expert. She remembers first feeling disconnected from standard funerals when her father died in 2000. She stared at the vinyl carpet covering his deep concrete vault and wondered what all the trappings of her dad’s Catholic service were for.

“The idea of ‘dust to dust’ seemed to be missing,” Kelly remembers. “Even though we were standing at the grave saying those words, we were not living those words.”

After moving back to the Hudson Valley in 2002, Kelly joined Rhinebeck’s cemetery advisory committee. She hoped to create options for people who wanted highly personal burials that connected to the earth. Since then, Kelly has positioned the Rhinebeck natural burial ground at the forefront of a growing international movement to reclaim death by bringing back burial traditions that are more environmentally friendly, more personalized, and more connected to place.

The municipal cemetery in Rhinebeck, New York, offers an area for natural burial. There are now around 225 natural burial grounds in the U.S., up from around 100 just five years ago.

In 2015, Kelly wrote Greening Death, the definitive book on the grassroots efforts behind the movement. “The impetus has been to make death more environmentally minded, less resource-intensive, and less polluting,” she says. “And to tie us back to the land.”

While Stiles Najac buried her partner in March, she found that the Rhinebeck ground gave her an unexpected peace. Najac was nine months pregnant with their son when her partner, Souleymane Ouattara, died by suicide last fall. Six months of bureaucratic complications followed before Najac could lay him to rest. (A medical examiner stored Ouattara’s body in a cooler, a common preservation method before natural burials.) Ouattara was an Ivory Coast native, and his Muslim family wanted Islamic “dust to dust” burial traditions, which typically eschew vaults.

So on a crisp day, Ouattara’s friends and family traversed the burial ground’s muddy lane to a chosen spot in the sun. They lowered his body into the ground using straps.

“It added another level of connection,” Najac says. “People actually returned him to the earth.”

As sunlight flickered through the branches, each mourner had a chance to speak. Ouattara’s uncle had plainly felt the stigma of a family suicide. As the service went on, Najac watched his demeanor change. His nephew was still beloved.

Afterward, though lunch was waiting, everybody lingered. “We were nestled in the trees, which create warmth on even the coldest day,” Najac remembers. “I had that feeling of comfort and acceptance. This was nature’s home.” She plans to bring their exuberant baby son, Zana, to picnic in the woods with friends in the warmer months near his dad.

Since the Civil War, American death rituals have become increasingly elaborate, complete with artificial embalming, concrete vaults, and satin-lined metal caskets. But in 1963, writer Jessica Mitford’s witty exposé of the funeral industry, The American Way of Death, sold every copy the day it was published. (Spoiler: Plenty of material is wasted along the way, but lavishly buried bodies still decay, perhaps even more spectacularly than their pine-boxed counterparts.) The book changed the way Americans thought about funerals and contributed to the growth of cremation rates, from 2% then to more than 50% today.

Still, cremation has limitations in both cost and impact. In 2017, the median cost of an American funeral with viewing and vault was $8,755, according to the National Funeral Directors Association. The median cost of a comparable cremation wasn’t dramatically less, at $6,260.

In the age of climate change, environmental concerns have also prompted more people to cremate. For example, a conventional burial contributes to the production of about 230 pounds of CO2 equivalent, according to Sam Bar, quality assurance and manufacturing engineer at Green Burial Council, a California-based nonprofit that advocates for “environmentally sustainable, natural death care.” But burning isn’t as eco-friendly as many assume. Cremation relies on fossil fuels, produces about 150 pounds of CO2 per body, and releases mercury and other byproducts into the air. Burning one body is equivalent to driving 600 miles. And scattering “cremains” isn’t good for soil.

Then a couple decades ago, activists on both sides of the Atlantic came up with similar alternatives to the $20 billion funeral industry: What if we returned to burial practices that allowed bodies to decompose naturally? And what if lands could be preserved in the process? The author and social innovator Nicholas Albery helped establish “woodland burials” in the United Kingdom in 1994. The first similar but independently generated concept in the United States was Ramsey Creek Preserve, established in South Carolina in 1998. Billy and Kimberley Campbell are proud that it is now a dedicated Conservation Burial Ground, with a permanent land trust agreement. “Instead of wasting land, you’re actually protecting ecologically important land,” Billy says.

Whether next to a regular cemetery or on conserved land, there are now around 218 natural burial grounds in the U.S. , up from around 100 just five years ago. The Green Burial Council certifies about one-third of them. (New Hampshire Funeral Resources, Education & Advocacy keeps a longer list that includes grounds not certified by the Green Burial Council, while other burial sites remain unreported.)

The Green Burial Council holds dual nonprofit status: a 501(c)(6) that certifies grounds and a 501(c)(3) that conducts education and outreach. The organization formed in response to the growing green burial movement and has since become the standard bearer of, and leading authority in, the U.S. movement. That’s no mean feat, given the divisions of purpose that have fragmented the nascent industry in the past. Lee Webster, director of the Green Burial Council’s education and outreach arm, says parts of the early movement were “very elitist,” and there is still a lot of confusion around terminology and standards.

The Green Burial Council currently has three certification standards for green-burial grounds. Certified “hybrid cemeteries” are modern cemeteries that reserve space for burials without embalming or concrete vaults (each year, burials in the U.S. use more than 827,000 gallons of dangerous chemicals and 1.6 million tons of concrete, materials that can be toxic to produce and damaging to the environment). Certified “natural cemeteries” prohibit the use of vaults and toxic chemical embalming. And certified “conservation burial grounds” meet the other requirements of hybrid and natural cemeteries plus establish a land trust that holds a conservation easement, deed restriction, or other legally binding preservation of the land.

Webster spent three years on the Green Burial Council board through 2017 and returned earlier this year to help steer education and outreach. “Because of the myth people have been sold about vaults and caskets, we have to reeducate people on the safety of bodies being buried in the ground without all the furniture,” she says.

The Council updated its standards this spring to better align them with land trust and land management conservation practices. Establishing a land trust for a burial ground lends legitimacy to what’s still a niche movement, in addition to preserving the land and creating a potential revenue stream—crucial at a time when cemetery funding is short (in large part because increasing U.S. cremation rates have cut burial-plot revenues).

As private and municipal-run burial grounds fill up, they can’t keep adding bodies, which means they have to dip into endowments to fund operations, Webster says. It’s not uncommon for a private cemetery to be abandoned when it runs out of money, at which point a nearby municipality often takes over, stretching funds even thinner.

To advocates like Webster, land conversation is the future of green burial. “The way it’s been approached has been to see it from a cemeterian’s point of view rather than a conservation point of view,” she says. “We’re going back now to encourage more land trusts to participate in this and understand how burial can be a conservation strategy.”

“Because of the myth people have been sold about vaults and caskets, we have to reeducate people on the safety of bodies being buried in the ground without all the furniture,” Lee Webster of the Green Burial Council.

Others are going even further. In May, Washington became the first state to legalize body composting as an alternative to cremation or casket burial, a process pioneered by the Seattle-based company Recompose. Other companies offer still more unusual methods of handling human remains: You can have your body mummified, dissolved in water and lye, buried in a pod and planted with a tree, “promessed” (frozen, vibrated into dust, dehydrated, and reintegrated into soil), or put into the ground with a burial suit embroidered with mushroom-spore thread.

Webster believes that body composting and other methods of reintegrating human remains into the environment are “the answer” for urban settings, where burial space is increasingly scarce. So why keep advocating for natural burial grounds like the one in Rhinebeck? It’s the potential they hold for land conservation that’s exciting, she says, and remembrance ceremonies can become new ways to engage with the land.

On the day we visited the Rhinebeck natural burial ground, two people bicycled on the pathway through the woods. Although they’d heard the site was a cemetery, they were using it as they’d use any public park.

“Conservation is about people needing and caring for land,” Webster says. “They’re going to conduct life-affirming activities: Getting married there, baptisms, confirmations, bird-watching, hiking, family picnics—all kinds of things are happening in these spaces because they’re conservation spaces first. That’s the value of it.

“It’s not just that we’re going to put people in the ground without concrete. It’s about the big picture and how it affects people, the way we relate to death but also the way we relate to each other in life.”

There is disagreement within the movement on how best to grow. The values driving green burial suggest there should be more conservation cemeteries, but to meet that standard usually requires starting a new cemetery rather than converting or hybridizing an existing one. That costs a lot of money and requires securing new land and going through a complicated zoning process. To date, the Green Burial Council has certified only six conservation cemeteries in the U.S., compared to 35 hybrid cemeteries.

Cynthia Beal, of the Natural Burial Company in Eugene, Oregon, is a vocal proponent for converting existing cemeteries to natural burial spaces. That averts the zoning issue and provides an educational opportunity for the community.

“If you’re coming into a situation where the cemetery has been abandoned or poorly cared for and you make natural burial its new focus, you’re likely to have neighbors as advocates, happy to see the grounds renewed and the place cared for again,” Beal says. “Every cemetery is unique, telling its own stories of a community’s establishment and growth, and that history is also worthy of stewardship.”

Webster, for her part, is pragmatic about the challenge: While it would be great for more conservation cemeteries to come online, practices at local cemeteries should be improved in the meantime. That would also increase education and access.

“A sense of place is critically important to this,” she says. “I’m not going to [be driven] 300 miles to be buried in a green cemetery. My family is going to associate me with here, where we lived.”

Even in places like Rhinebeck that build at least partly on existing cemetery infrastructure, establishing green-burial sites takes time. Ramsey Creek Preserve was easier, Kimberley Campbell says, because South Carolina didn’t bother regulating. “I called down to the funeral board and got a delightful secretary,” Kimberly remembers. “She said, ‘The cemetery board has shut down. … I think what you are doing sounds marvelous, and there is absolutely nothing to stop you.’”

For Rhinebeck administrator Kelly, using municipal land didn’t require raising the $50,000 in trust for upkeep that is standard in many places. Still, it had to be planned, bid, surveyed, plotted, and certified, which took around five years.

The payoff of a natural burial ground can be big for a community. Gina Walker Fox, a Rhinebeck real estate agent, says she feels more comfortable with death for having bought a plot. (At 61, she recently asked a local quilter to sew her a raw-linen shroud, which she plans to embroider with a symbolic river.) Fox’s plot is near a blackcap raspberry bush she knows her adult children will want to visit.

“That old way—where people pick berries, sit, visit, picnic—that speaks to me,” she says.

Kelly laughs when we ask where she’ll be buried. She hasn’t picked or purchased a spot yet. Even a green-burial activist can feel like she has plenty of time to live.

“Once in a while,” she says, “I come by here and think I should probably get around to getting a plot.”

Complete Article ↪HERE↩!

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Docs No Less Likely to Die in Hospital Than Other Patients

By Nicola M. Parry, DVM

With respect to end-of-life care, physicians’ likelihood of dying at home is similar to that of nonphysician patients, a Canadian study suggests.

“Overall, they did not consistently opt for less-aggressive care but instead used both intensive and palliative care more than nonphysicians,” Hannah Wunsch, MD, from the University of Toronto, Canada, and colleagues write in an article published online July 24 in JAMA Network Open.

Intensive end-of-life treatment is common in North America, often going against patients’ previously reported preferences. Previous studies have suggested that physicians in the United States are somewhat less likely to die in the hospital than other patients, suggesting they may be better able to match their care with their preferences.

To see if that pattern held true in a system with universal healthcare, Wunsch and colleagues compared the intensity of treatment received by physician and nonphysician patients at the end of life in Ontario, Canada.

“The primary outcome was location of death, with the hypothesis that physicians are more likely to receive less-intensive end-of-life care,” the authors write.

The researchers analyzed medical and death records of 2507 physicians and 7513 nonphysicians who died between 2004 and 2015.

They found that physicians were no more likely to die at home than nonphysicians (42.8% vs 39%; adjusted relative risk [aRR], 1.04; 95% confidence interval [CI], 0.99 – 1.09). However, physicians were more likely to die in an intensive care unit (ICU) (11.9% vs 10%; aRR, 1.22; 95% CI, 1.08 – 1.39).

The data also showed that, in the 6 months before death, physicians were less likely to visit an emergency department (73% vs 78.4%; aRR, 0.96; 95% CI, 0.94 – 0.98), but more likely to be admitted to an ICU (20.8% vs 19.1%; aRR, 1.14; 95% CI, 1.05 – 1.24), and to receive palliative care (52.9% vs 47.4%; aRR, 1.18; 95% CI, 1.13 – 1.23).

However, a subgroup analysis of patients with chronic conditions showed that physicians (n = 1375) were more likely to die at home than nonphysicians (n = 4117) (35.2% vs 30.7%; aRR, 1.12; 95% CI, 1.04 – 1.22). Among those with cancer in this subgroup, physicians were also more likely to die at home (37.6% vs 28.6%; aRR, 1.30; 95% CI, 1.13 – 1.50), and to receive chemotherapy in the last 6 months of life (37.9% vs 29.8%; aRR, 1.28; 95% CI, 1.13 – 1.46).

In an interview with Medscape Medical News, study coauthor Robert A. Fowler, MDCM, MS(Epi), also from the University of Toronto, was struck by how his group’s findings differed from the US studies.

“We wondered whether this might relate to differences in payment systems for healthcare services in the United States, in comparison to Canada where we have a theoretically universal healthcare system for in-hospital care, yet often have more limited options for home-based and palliative care at end of life.”

Overall, Fowler expressed surprise at the findings of both the US and Canadian studies — “chiefly, that many elements of end-of-life care are, despite some differences, remarkably similar among physicians and the general population.”

 

This was different from his group’s original hypothesis that physicians would opt for much less inpatient care.

“It was interesting that we did see that physicians were both more likely to receive treatment in an ICU, known for its use of technology-laden care,” he added, “and also more likely to receive palliative care at the end of life.”

According to Fowler, this offers a more nuanced perspective of what physicians may perceive to be optimal care at the end of life, as opposed to a simplistic notion of ‘more’ or ‘less’ being better: “Sometimes, more aggressive care is warranted,” he said, “yet, at other times, focusing more squarely on comfort is best.”

Complete Article ↪HERE↩!

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We’re in the middle of a revolution on death

Mary Klein, center, speaks at a news conference in Washington on April 5, 2018, to urge D.C. officials to educate doctors about the city’s “death with dignity” law.

By Jon Meacham

Jon Meacham is the author of “The Soul of America: The Battle for Our Better Angels.”

Tuesday was to be the day — in the morning, because everything was taken care of. The goodbyes had been said, the tears shed, the coffin handmade. In the spring of 2018, Dick Shannon, a former Silicon Valley engineer with untreatable cancer, took advantage of California’s “death with dignity” law to end his own life once all other medical possibilities had been exhausted.

“My observation about the way people die, at least in America, is they . . . are not allowed the opportunity to be part of the process,” Shannon explained. “For my way of thinking, the part that bothers me just immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” Discussing the ultimate decision with his doctor, Shannon remarked, “It’s hard to fathom. I go to sleep and that’s the end of it. I’ll never know anything different.” He paused, then said simply: “Okay.”

When the day came, Shannon was ready. The end-of-life medical cocktail was mixed in a silver stainless steel cup, and he drank it in front of his loving and tearful family. “I’ve accepted the fact that I’m dying,” he’d said earlier. “There’s nothing I can do to stop it. Planning the final days of my life gives me a sense of participation and satisfaction.” As he prepared to slip away, he told his family, “Just know that I love you — each and every one of you.”

America is becoming ever more like itself when it comes to death. From Walden Pond to Huck Finn’s lighting out for the territory, we’re a nation of individualists, shaped and suffused by self-reliance and a stubborn allegiance to the live-free-or-die motto of the Revolutionary era. With this twist: Baby boomers and their successor generations are insisting on being free to take control of death itself. Innovation, creativity and customization — the hallmarks of our time, an age in which we can run much of our lives from our mobile phones — are now transforming both how we die and the mechanics of remembrance that come afterward.

The coming revolution in death — and Dick Shannon’s story — is laid out with uncommon wisdom in a powerful, new HBO documentary, “Alternate Endings,” which debuts Aug. 14. Only eight states and the District of Columbia have death-with-dignity laws, but three of those states — Hawaii, Maine and New Jersey — have put their statutes on the books within the past year. And 18 other states considered such laws in the 2019 legislative season.

The movement has not attracted the same attention it once did; in the 1990s, Jack “Dr. Death” Kevorkian, the right-to-die advocate, drew considerable public alarm. As the documentary by Perri Peltz and Matthew O’Neill makes clear, the conversation has entered a new and compelling phase now that Americans are thinking about death as something as disintermediated as commuting, dating and shopping.

The United States has a long history of rethinking the rituals of death. Embalming became part of the popular understanding and tradition of death during the Civil War; the task then was to preserve the bodies of dead soldiers so their families could see them one final time. Abraham Lincoln may have done the most to raise the profile of embalming when he chose first to embalm his 11-year-old son and then when his own corpse was embalmed for the long train ride home to Springfield, Ill., after his assassination.

Now the death industry in the United States has evolved with the culture. For many, corporate consolidation has reshaped a funeral home industry, which was once made up almost entirely of local, family-owned companies. (And which, as Jessica Mitford wrote in her 1963 book “The American Way of Death,” unctuously gouged grieving families.) The Internet has disrupted the casket industry with Walmart and others selling directly to families. As “Alternate Endings” reports, there are now green burials (including using a loved one’s ashes to help restore coral reefs), space burials and even drive-through, open-casket viewings.

Once the great gatekeeper of life and death, organized religion, too, is losing its sway. In an era in which friends routinely ordain themselves on the Internet to preside at weddings, the rising numbers of Americans who are “unaffiliated” with any particular faith mean that institutions that once gave shape to life and meaning to death are being gradually supplanted family to family.

The issues raised by Dick Shannon’s story are the most profound. Many religious authorities — notably the Roman Catholic Church — oppose euthanasia (Greek for a “good death”). Such teachings face a generational head wind as more people (and states) move from deferring to institutions to simply making their own decisions. The questions involved are intricate and complex and painful — but it is plain to see that we are witnessing another rite of passage undergoing an irrevocable disruption.

When the Shannons held a “living wake” for friends to say goodbye to Dick, the family hung a banner on the wall: “Life is what you celebrate. All of it. Even its end.” Before passing, Shannon said, “I want it to be on my terms.” Given that death comes for us all, so, too, will many of us have to confront the agonizing decision that he faced with grace.

Complete Article ↪HERE↩!

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I’m an ICU nurse. I know I need an end-of-life directive.

So why can’t I bring myself to write it?

By Andrea Useem

I of all people should know how to do this. As an ICU nurse, I see every day how agonizing it is for families to make end-of-life care decisions for loved ones who have not made their wishes clearly known. I know what I want. I know what the legal options are. But when I sit down to fill out the papers, I stall.

The form remains incomplete.

All of my experience urges me to act. I think of the anguished adult son trying to decide whether his elderly, unconscious mother would want to live permanently connected to a ventilator.

“Pray for me that she dies before I have to make a decision,” he told me. If she had made her choices known before medical calamity struck, her son would have the peace of mind of carrying out her wishes, one way or another.

I think of another family, where two siblings — one of them a physician — came to blows in the hospital waiting room because they could not agree on whether to stop aggressive treatment for their father, given that his organs were shutting down, one by one.

Of course I want to reduce what’s called the “decisional burden” on my own family by making my choices clear in case I become too sick some day to decide for myself. I just can’t bring myself to translate my well-informed preferences into a legal document such as an advance directive.

I’m not alone. Although advance-care planning has other well-established benefits, including an increased chance that patients will receive the care they want, only one-third of Americans have any sort of advance directive, according to a 2017 study led by researchers at the University of Pennsylvania.

And health-care professionals like myself are no exception. In her 2017 book “Extreme Measures: Finding a Better Path to the End of Life,” physician Jessica Nutik Zitter explained why she avoided the task of translating her medical wishes into a series of yes/no check-boxes that make up many advance directive forms.

“My feelings are too complex, too nuanced, to fit into one little white square,” wrote Zitter, who is board certified in both palliative care and critical-care medicine.

So why is this undertaking so difficult? And how can we all get better at completing this vital task?

The first barrier to advance-care planning is often understanding what is involved. According to G. Kevin Donovan, director of Georgetown University’s Pellegrino Center for Clinical Bioethics, an advance directive is a document that usually includes two separate elements: naming a health-care surrogate and creating a living will.

A health-care surrogate or “proxy” is an adult who is legally empowered to make medical decisions for you when you can’t make them for yourself. Many think they have this base covered when they name a durable power-of-attorney. But a power-of-attorney directive does not automatically allow for decision-making power in the health-care realm.

“They can sell your stock, but they can’t take you off a ventilator,” Donovan said.

A living will offers you a way to say in advance what sorts of medical interventions you would want. For example, the form we offer at our hospital asks whether you would want “artificial nutrition” — meaning liquid nutrients delivered through a tube — if you were expected to die soon.

The problem with these forms is that they rarely capture the complexity of real-life medical decision-making, Donovan said.

In the intensive care unit where I work, we recently had a woman in her 60s whose cancer had come back with a vengeance. She was awake and talking with her family, but her vital signs were deteriorating quickly. We asked the patient and the family what they would want if she could no longer talk and make decisions, and they requested an advance directive form.

When I came to check on them later, I found the patient and family puzzling over the form’s questions, such as what kind of care she would want if she were in a “persistent vegetative state.” The abstract scenarios were almost irrelevant to their immediate situation.

I redirected the conversation to the concrete choices in front of them: Would she want a breathing tube put in her throat in the next 24 hours when her lungs began to fail? Or to have a large IV inserted in her neck to start dialysis after her kidneys stopped working? Thankfully for the family, the patient made her own decisions and shared these with our physicians. She said she didn’t want any “heroic” interventions, and she died 48 hours later, with her family at her bedside.

To me, filling out a living will as a relatively healthy person feels like ordering food for a meal I will eat in 20 years: It seems impossible to predict what I will want in that moment. Is it good to be vague and write, “I want to be kept comfortable?” Or better to be highly specific and say, “I never want to have a feeding tube inserted?”

Because living wills are difficult to translate into real-life decisions, many experts now advise focusing on not only naming the right person as your health-care decision-maker but also talking in depth with that person about what’s important to you.

“The best advanced directive is to name an educated person as your health-care surrogate,” said Douglas Houghton, an acute-care nurse practitioner and director of advanced practice providers at Jackson Health System in Miami. “You need to have a real conversation with that person, and not simply write down a name on a piece of paper that you keep in a filing cabinet.”

Zitter agreed that having conversations with loved ones is vital.

“A written document is a good first step, but it’s not the ultimate goal,” said Zitter, whose work around end-of-life decisions was profiled in the 2016 Netflix documentary, “Extremis.” “For me, the real work happens on Friday nights at the dinner table, when I talk with my family about illness, and death and what I would want at the end of my own life, even when my sons are rolling their eyes.”

But Zitter conceded that a major barrier stands in the way of these conversations: a fear of talking about death.

“Even for me, as a doctor who deals with death every day, I don’t want to think about my own end, it makes me very sad,” she said.

So what can help us all climb over this final existential barrier to end-of-life planning?

I recently witnessed a conversation at work between a palliative care doctor and a patient with severe heart failure, whose adult son and grandchild were at the bedside. The doctor gently reminded the patient that if she could give her preferences now while she was conscious, she would relieve the burden on her son, who otherwise would have to make hard decisions on her behalf. When she finally said she wanted to go home with hospice, her son was visibly relieved.

Framing end-of-life planning as a service to loved ones is a compelling idea. One critical-care doctor I work with suggested we link advance directives to Valentine’s Day. Show your love by sharing what you want. This idea is also what finally motivated me to overcome my own hesitations.

This month, I finally filled out “Five Wishes,” a downloadable document, where I named a health-care proxy and two backups. I wrote I don’t want to artificially prolong my life with machines, such as a ventilator, and if such treatments are started, I want them stopped. I had two neighbors witness the document, making it legally binding in Virginia, and placed it in our kitchen filing cabinet.

Talking about my wishes over dinner with my kids? I’m not there yet. Meanwhile, let me share my advance directive here, so at least my kids can Google it: When the time comes, keep me comfortable, let me go and know that I love you.

Complete Article ↪HERE↩!

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‘Good Death’

Choosing How to Live and How to Die

By Matt McMillen

Patty Webster heard her mom talk about death. A lot. So often that she and her sisters sometimes had to stop their mother from bringing it up. Her message got through, though.

Before her mom died of a stroke in 2016 at age 73, a previous stroke had already robbed her of her ability to communicate. But her family knew what she wanted at the end of her life because she had made it plain to them. That allowed them to share her wishes with her doctors and others so that she could die as she chose.

“We were her voice,” Webster says. “I didn’t know what a gift all of those talks had been until then.”

Webster works for the Conversation Project, an initiative of the Boston-based Institute for Healthcare Improvement. Founded in 2010, it encourages people to become comfortable talking about the type of care they want — and don’t want — at the end of their lives. A survey the group conducted in 2018 found that 95% of Americans are open to discussions about their wishes. But only about 1 in 3 have talked about what they would want. Five years earlier, however, that number had been closer to 1 in 4. More people, it seems, are talking about how they want to die. Some more than others.

“My family is tired of me talking about it,” Webster says, laughing.

But Webster wants those discussions to continue, and she wants the number of people having them to keep growing. She also wants to clarify: “Don’t talk about death but about how you want to live.”

Expressing your wishes for the end of your life and having them respected: Some call it “a good death.” Others may refer to it as “successful dying.” Ira Byock, MD, prefers “dying well.” A palliative care specialist and chief medical officer of the Institute for Human Caring at Providence St. Joseph Health in Gardena, CA, Byock is also the author of Dying Well: Peace and Possibilities at the End of Life.

“Every one of us as adults should be having this conversation,” he says.

In fact, Byock and his colleagues talk to high school seniors about advanced care planning: “We want to normalize this and make it a part of growing up.”

In a paper published in 2016, researchers reviewed 36 previously published studies to determine the “core themes” of a good death. They looked at the question from three perspectives: the person dying, the family, and health care providers. While 11 themes emerged, all three groups ranked three themes as most important:

  • Deciding how they wanted to die, including who would be with them and having their treatment preferences and funeral plans prepared
  • Approaching death without pain
  • Being emotionally well, meaning their psychological and spiritual well-being has been addressed

States Adapt to Change

In some parts of the country, the conversation includes drugs that end your life. Oregon became the first state to enact the Death with Dignity Act, which voters approved in a 1994 refereundum. After years of court challenges, the law took effect in 1998. It allows residents who are terminally ill, have 6 months or less to live, and are deemed mentally able to make their own decisions to end their lives. Ten years would pass before another state, Washington, would approve its own version. Maine became the most recent state to pass a version of the law. Gov. Janet Mills signed it on June 12. These are the other states where doctor-aided dying has been made legal and when the laws took effect:

  • California (2016)
  • Colorado (2016)
  • District of Columbia (2016/2017)
  • Hawaii (2018/2019)
  • New Jersey (2019)
  • Vermont (Patient Choice and Control at the End of Life Act, 2013)
  • Montana (Although no Death with Dignity law exists in Montana, the state’s Supreme Court ruled in 2009 that the practice was legal.)
  • The laws have sparked opposition. In Maine, for example, the state legislature passed the law by only four votes. In California, the law was overturned in court last year, but an appeals court put a hold on that ruling, and the state’s Supreme Court chose not to review the case. That leaves the law, known as the End of Life Option Act, in effect, though its future remains uncertain.

    Between 2009 and 2017, the most recent year for which statistics are available, 1,364 people in Washington had used the law to end their lives. Last year, in California, 337 people chose to die under the state’s End of Life Option Act. In Oregon, 2,217 terminally ill people have received life-ending drugs over the past 2 decades. Nearly two-thirds used those drugs, while the rest opted not to take them.

    “That’s been the case year after year,” says Peter Lyon, MD, medical director of End of Life Choices Oregon, a Portland-based organization that helps Oregonians navigate the Death with Dignity Act and other final decisions. “Some people just like to know that the medicine is there and available if their pain becomes too severe or their condition worsens a great deal.”

    On average, says Lyon, people do not reach out to his organization until they have about 3 to 4 weeks left to live. One reason: It’s so difficult for many people to think about, let alone talk about.

    “Talking about death is the hardest conversation that families can have,” he says.

    More Than a Medical Decision

    How you want to die is only partly about medical issues, Byock says. It’s also highly personal. And it will mean something different to you than it will to your spouse, your parents, your children, and others. To reach your own definition, Byock advises you take stock.

    “Ask yourself, ‘If I’m seriously ill, what would matter most to me?’” he says. “For the vast majority of us, it’s other people. We are hard-wired to matter to one another.”

    Your conversations, of course, should address practical matters, like life insurance information, how to access your safe deposit box, how to close your bank account — and your Facebook account — and more. Byock recalls how much that meant to him after his mother’s death.

    “She lived alone, we found that she kept a wooden box next to her phone with all the documents we needed,” he says. “Mom was still taking care of us.”

    You will also need to make decisions about key medical concerns. For example, do you want to be kept alive as long as possible, even if treatment causes great discomfort? Or do you prefer care that may allow you to enjoy better quality of life, though your death may come sooner?

    “Some people might worry that they’re not going to get enough treatment, while others might be afraid that they’ll get overly aggressive care,” says Kate DeBartolo, who directs the Conversation Project.

    Another crucial consideration: Who will speak for you if you are not able to voice your wishes? For many people, that may be a loved one, such as a family member, but it does not have to be.

    “I try to encourage my patients to think about who knows them best on their good days and bad days and who is readily available,” says palliative care doctor Christian Sinclair, MD, of the University of Kansas Health System in Kansas City.

    DeBartolo agrees: “I would love to expand the idea that it doesn’t have to be a traditional family member. Ask yourself: Who would you trust, and who do you think could really speak for you?”

    Such a person, known variously as a health care proxy or surrogate or agent, can be given power of attorney to make treatment decisions for you when you can’t make them for yourself. You also can –and should — put your wishes in writing. Legal documents, such as advance directives and living wills, are an alternative or may be used along with a proxy to make clear what you want.

    Sinclair, a co-author of the Institute of Medicine’s 2014 report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, says that over the last 15 years or so, conversations between patients and providers about end-of-life care have become more common as more doctors have been trained for such discussions.

    “Research shows that when these conversations happen and patients and clinicians are on the same page, there’s more likelihood that those patients will actually get the care that they want,” says Sinclair. “Having a good death is about making individual choices.”

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Death, Be Not Proud:

Literary Lessons on Death and Dying

Rituals like funerals, now less common, used to help us deal with death.

By Jeff Minick

For over three decades, Reverend F. Washington Jarvis served as headmaster of Boston’s Roxbury Latin School, the oldest school in continuous existence in North America. During this time, Jarvis delivered a series of addresses to the student body, the best of which were collected in “With Love and Prayers: A Headmaster Speaks to the Next Generation.” For a number of years, I taught “With Love and Prayers” to high schoolers and found that both parents and students valued the book for its wisdom, wit, and moral lessons.

In his chapter “The Spiritual Dimension,” Jarvis relates this anecdote to the young men in his charge:

The celebrated headmaster of Eton College, Cyril Alington, was once approached by an aggressive mother. He did not suffer fools gladly.
“Are you preparing Henry for a political career?” she asked Alington.
“No,” he said.
“Well, for a professional career?
“No,” he replied.
“For a business career, then?”
“No,” he repeated.
“Well, in a word, Dr. Alington, what are you here at Eton preparing Henry for?”
“In a word, madam? Death.”

As Jarvis then points out, the principal mission of Roxbury Latin is to prepare its students for life. “And,” he goes on, “the starting point of that preparation is the reality that life is short and ends in death.”

These few lines bring much to consider. Do we aim at getting our young people into “good” schools while neglecting to instill in them the classical virtues? Do we recognize that “life is short and ends in death”? If so, what outlook on the world should such a truth inculcate?

Before seeking answers to these questions, we must recognize that our ancestors were more familiar with death than we moderns. They lived among the sick and dying in ways we do not, and were forced to deal with circumstances that today are the domain of our health professionals. Victorian poetry, for example, is a thicket of verse about death and dying.

We are more distant from the dying. Low infant mortality rates have thankfully removed many of us from witnessing those tragedies, and though a majority of Americans want to die at home, only 20 percent do so.

Lacking this intimacy with the death of earlier generations, we may, if we wish greater familiarity, turn to literature, Victorian or otherwise. Stories and poems can give us intimate portraits of the hope and the despair, the joy and the sorrow, the courage and fear of the dying and those who surround them.

Let’s look at four novels in which the characters exit this earth in dramatically different ways. Each of them offers a lesson on death.

‘The Death of Ivan Ilyich’

Portrait of Leo Tolstoy, 1887, by Ilya Repin. Oil on canvas. Tretyakov Gallery, Moscow.

In “The Death of Ivan Ilyich,” Leo Tolstoy’s novella and perhaps the greatest of all fictional meditations on the debt we owe to nature, Ivan Ilyich lies on his deathbed wondering whether he has lived a good life.

As doubts fill him, and as death creeps ever closer, he suddenly realizes that “though his life had not been what it should have been, this could still be rectified.” In his last hours, he is flooded with sorrow and pity for the son and wife he has neglected, and though they cannot understand him when he begs their forgiveness, he dies “knowing that He whose understanding mattered would understand.”

Ivan Ilyich goes to his grave in peace, knowing the truth of Katharine Tynan’s lines from “The Great Mercy”: “Betwixt the saddle and the ground/was mercy sought and mercy found.”

Here Tolstoy reminds us that even on our deathbed, we may yet clear our conscience and set right those things that we have done or failed to do.

‘Kristin Lavransdatter’

Sigrid Undset as a girl. The Noble Prize-winning novelist wrote a trilogy called “Kristen Lavransdatter.”

In Sigrid Undset’s trilogy of medieval Norway, “Kristin Lavransdatter,” we discover the importance of ritual in death. The Christian injunction “To bury the dead” means more than tumbling a corpse into a grave, covering it over with earth, and moving on. During the long death of Kristin’s father, Lavrans, the neighbors visit, the priest performs the last rites, a vigil is held after Lavrans breathes his last, and later there is a feast to celebrate his memory.

From Kristin and her kin, we moderns might learn once again how to “bury the dead.” More and more, I hear of people and know a few of them who when a loved one dies, conduct no ritual of passage, no funeral, no memorial service. An obituary may appear in the paper, or not, but otherwise the survivors put the deceased into the grave or columbarium without ceremony.

With this practice, we fail to realize that we have cheated ourselves of the comfort of a formal farewell and have tarnished our humanity in the bargain.

‘A Tale of Two Cities’

In “A Tale of Two Cities,” Charles Dickens puts Sydney Carton, a barrister, an alcoholic, and a cynic, onto the platform of a guillotine after Carton nobly takes the place of another man sentenced to die by execution. Carton’s thoughts before the fall of the blade bring him solace: “It is a far, far better thing I do than I have ever done; it is a far, far better rest that I go to than I have ever known.”

From Carton, we receive a lesson in courage when faced with death.

‘Little Women’

Louisa May Alcott, the author of “Little Women,” wrote one of the most heartrending death scenes in all of English literature. In the story, based on her own life, she describes the death of her dear sister Beth.

Of course, as Louisa May Alcott notes in “Little Women,” “Seldom except in books do the dying utter memorable words, see visions, or depart with beatified countenances …”

In describing the passing of young Beth March, whose “end comes as naturally and simply as sleep,” Alcott shows her readers that, like Sydney Carton, those who die possess the power to bequeath gifts to the living. Before she slips into the shadows, Beth reads some lines written by her beloved sister Jo. And she realizes that her illness and impending death have caused Jo, her caretaker, to grow and mature, and to take from her lessons in bravery and her “cheerful, uncomplaining spirit in its prison-house of pain.”

Like in these novels, the loved ones with whom I have sat while they closed their eyes and faded away have given me instruction. Perhaps the best of these teachers was my mother, who died from cancer 30 years ago. In her final lesson—perhaps her greatest lesson—she taught me and my brothers and sisters by way of example how to die with grace and courage.

If I find myself in my mother’s circumstances, with time to bid goodbye to those I love, and if I possess even half of her strength, I will die a fortunate man.

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‘I’ve six months to live’ – the words that turned my life upside down

Rachel O’Neill knew her mother had terminal cancer, but there was never a timeline put on it

Rachel O’Neill with her mother Marie: ‘No matter what happens, a mother’s love lasts forever’

by Rachel O’Neill

I’ve six months to live.”

Five words that turned my life upside down.

I always knew that terminal cancer was something I would have to deal with. But because there was never a timeline put on it, it was something I didn’t have to think about. Sure, Mum had incurable cancer, but it wasn’t something that was going to affect me right this second.

And then suddenly it was there, affecting every part of my life.

In the time it took to say those five little words, my entire status changed. I was no longer someone whose mother was sick, I was someone whose mother was dying. Life as I knew it was officially on pause.

Suddenly, the “how’s your Mum doing?” questions become a lot harder to answer. I’m a very open person which means everyone tends to know everything that goes on in my life. I’m also a terrible liar. If someone asks me how Mum is doing, I will answer it very honestly. So honestly, that it can make people uncomfortable. I’ve had people squirm after I’ve told them that Mum is dying. I’ve had people shuffle awkwardly from foot to foot, desperately thinking of something to say that won’t upset me or them.

Now I’ve adopted a very simple tactic to counteract the awkwardness. I minimise what’s going on by joking about it instead.

Minimise, minimise, minimise.

Never let people see how badly you are struggling with it. I must never drop the facade that I’m managing to hold it together when in reality this is the worst thing I’ve ever had to face.

To make people comfortable, I tell them that my mother is dying and follow it with a quick “it’s fine”. I’ve joked about how I might finally be able to get on the property ladder with the inheritance. I quickly change the subject when I can feel people getting nervous, even if I’m bursting to talk about what’s happening. I’ve done everything I can to make people feel more comfortable around me because if I can joke about it, it means they can relax a little.

Nobody is truly comfortable with death.

Despite the fact that we “do death well” in Ireland, it’s still a subject that many of us won’t talk about. Confronting the fact that someday, we will cease to be here is something we’ll spend a lifetime trying to come to terms with. Many of us never do.

Knowing that myself and Mum have so little time left together is hard. I am terrified of regret, of saying the wrong thing, of not asking the right questions, of not making enough of our time together. It now feels like every conversation feels like it has to be meaningful in some way. I feel like if a moment with her isn’t memorable, I’ve wasted it. It’s a suffocating pressure to be under.

What has stood out to me is the endless kindness I’ve experienced from every corner of my life

The pressure manifests itself in many ways. For example, I’ve been in a perpetual state of anticipatory grief for the last few months. I’m grieving the life we won’t have together. I’m grieving that she won’t see me get married or meet her grandchildren. I’m grieving the advice she won’t be able to give me, the questions I won’t be able to ask her and the adventures she will never get to have.

That is a very painful process which your body does everything to protect yourself from. I’m constantly tense because I’m bracing myself for an impact that I know is coming, despite not being sure when it’ll hit. I feel like if I can process this pain now, it won’t be as painful when the inevitable comes. It’s the only way I know how to prepare for what’s coming.

Some people struggle to understand my approach. Some have even said to me that I need to move past the grief. They’ve said that my mum needs me to be upbeat and strong for her. To me, that feels fake. Anxiety and depression are in my DNA so worrying about the future and being down about it are things I’m very used to doing. It’s a coping mechanism that some people just don’t understand. They feel that I’m doing Mum a disservice, that I should pretend to be okay when in reality I am struggling badly with everything that’s happening. What I say to those people is that there’s no “right” way to grieve. It’s a uniquely personal process, best left to those undergoing it.

What has stood out to me over the past few months is the endless kindness I’ve experienced from every corner of my life. People offering food, time, shoulders to cry on and a kind ear to listen. People encouraging me to open up when I can and who treat me like a normal human being when I can’t. The empathy and kindness have been utterly overwhelming but serves as a reminder that people really do care. It gives me hope that when I come out the other side of this, I’ll have people who will help me build myself back up again.

Having discussed with Mum what happens when this is all over, she told me something that I’ll hold dear to my heart forever.

“Just let yourself be loved. It’s no more than you deserve and always carry with you that you are my beloved child. Always and forever.”

No matter what happens, a mother’s love lasts forever.

Of that, I am absolutely certain.

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