Month: July 2021

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The Dignified Exit

The Inevitable: Dispatches on the Right to Die

By Elena Saavedra Buckley

AS MEDICAL AND technological advances have made our world safer, it’s become much harder to kill oneself painlessly, even if one intends to. Asphyxiation by carbon monoxide, usually done by inhaling car exhaust in an enclosed garage, has gotten harder as the automobile industry’s emissions levels lower over time. Ovens have followed a similar trend, with natural gas models outplacing those that run on coal. The shift is especially true when it comes to medications. Use of Nembutal, the barbiturate that killed Marilyn Monroe, declined in the second half of the 20th century and was eventually discontinued in the United States, leaving available fewer substances that can cause a nonviolent overdose. (Other lethal medications have multiplied in price, sometimes threefold or more.) For those who desire “rational” suicide — done after consideration rather than, as is more typical, spontaneous despair — options are limited outside uncertain and gory methods. We live more protected lives than we once did, but, in exchange, the ability to end our lives peacefully is kept out of reach, like a bottle of recalled pills.

The subjects in Katie Engelhart’s essential, vulnerable book, The Inevitable: Dispatches on the Right to Die, question these barriers. Since the mid-20th century, conversations on assisted suicide have grown, as laws allowing it have passed around the world. In popular conversation, Engelhart writes, people who use assisted death usually fit an archetype: elderly, secular, white people, with terminal diseases and supportive families, take advantage of rare right-to-die laws soon before their likely natural death. They throw back a lethal cocktail of liquid drugs under the watch of a doctor and their loved ones. They fall asleep, and, within a few hours, their heart stops. “While most reporting about the so-called right to die ends at the margins of the law, there are other stories playing out beyond them,” Engelhart writes. “Didn’t I know that whenever the law falls short, people find a way?”

Engelhart, a former reporter for VICE and NBC News, profiles two rogue doctors and four subjects who seek assisted death in a variety of illicit shades: an elderly British woman who feels she has lived the life she wants; an American woman in her 30s with worsening multiple sclerosis; an American woman sinking into dementia’s abyss; and a 25-year-old Canadian man with complicated, severe depression. Engelhart profiles them as they either seek help with suicide, through mail-order chemicals or services overseas, or challenge the limits of their country’s laws. Engelhart is ever thoughtful; the approach can fall flat during meetings with secondary doctors or interviews with philosophers (summoning more than one description of office shelving), but Engelhart’s main portraits, and her careful relationships with her subjects, powerfully animate her central questions: what is dignity, and what does it mean to die with it?

As she chases dignity’s meaning, Engelhart meets early dead ends. Some of her interviewees brush off the question, saying that dignity amounts to feeling respected, making their own choices, and, mostly, being able to wipe their own asses. (“When someone has to change my diaper, I don’t want to live.”) But if dignity can be understood at an individual level, it is twisted by the systemic factors Engelhart describes that lead to death wishes: the specter of melancholic senior living facilities, unsuccessful mental health treatments, and impossibly expensive health care. The Inevitable is international in scope, but these pressures loom largest in the American medical system. When visiting Brussels, Belgium, Engelhart speaks to Wim Distelmans, an oncologist and euthanasia proponent, about whether assisted death should be offered to more people in the United States. “It’s a developing country,” he tells her. “You shouldn’t try to implement a law of euthanasia in countries where there is no basic healthcare.” A reader wonders, then, what it means to assert dignity within circumstances that do not do the same.

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Voluntary euthanasia may appear in Thomas More’s vision of Utopia, but doctors have long struggled to write it into their job descriptions. In 1995, the American Medical Association stated that “[p]hysician-assisted suicide is fundamentally incompatible with the physician’s role as healer,” and the National Hospice and Palliative Care Organization opposes the practice. The membrane between palliative care and assisted suicide is thin, though — in some cases, tending to fading life with pain-relieving drugs functions as a kind of assisted death, albeit a slow one. Engelhart roots this dissonance in the 20th century’s effort “to conceptually transform old age from a natural phase of life into a stage of disease,” she writes, “and, by extension, something to be defeated, rather than embodied or endured.”

Assisted suicide has been legal in Switzerland since 1940, and some other European countries, like Belgium, have allowed it since the 1990s. (Parts of Australia and Canada allow it, too.) Its American history is piecemeal. As health-care prices climbed sharply in the 1970s and ’80s, a string of high-profile cases of young white women on life support drummed up public conversation. Then, in 1994, Oregon became the first state to legalize assisted death. Other states followed Oregon’s strict parameters: a patient must be terminally ill and have six months or less to live, and they must have the mental capacity to make the decision, as determined by a doctor. On their chosen deathbed, a doctor will give them the lethal barbiturate, but they must lift it to their own mouth in a final, performative gesture of agency.

Opponents of assisted death have long argued that the practice will fall down a slippery slope of exploitation. Poor patients and the elderly, critics say, will feel pressured to die rather than rack up medical costs for their families. People with depression will choose it over trying more treatments. Historically, voluntary euthanasia and eugenics attract similar supporters, and today, some disability rights groups warn that the practices are “fatally tangled.” (One doctor Engelhart speaks with wants to create machines that can provide assisted death more easily than drugs; he sheepishly describes one of his coffin-like prototypes as “a little Auschwitzy.”) So far, though, there is no evidence from Oregon or other states that the laws have caused disproportionate deaths in any demographics. In fact, the opposite might be true. Engelhart spoke to doctors who knew of patients who qualified under the laws, and who wanted to die, but who could not afford the drugs. “Poor patients sometimes had to live,” she writes, “while richer patients got to die.”

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Like much great narrative journalism, The Inevitable powerfully justifies its form when mapping how people relate to each other outside dominant systems — in this case, how end-of-life care can exist away from, or in opposition to, big medicine. Beyond trickster doctors like Jack Kevorkian — the American pathologist, dubbed “Doctor Death,” who in the 1990s turned assisting suicides into a kind of civil disobedience — barely underground networks have offered assisted death to people who don’t meet the law’s eligibility. One of Engelhart’s subjects, Debra, is a widow in Oregon who does not want to fully succumb to her dementia. She ends her life before that happens with the help of the Final Exit Network, a group of volunteers who instruct the elderly on how to commit suicide and accompany them through it. When she is ready, two volunteers arrive at her house, hug her, and kneel next to her wheelchair while she uses a plastic bag and gas canister to stop her own breathing. Even with its analog methods, this moment feels dignified, closer to what care should look like — especially when put into relief by the police who show up to her door some hours later.

Other narratives are murkier. A woman named Maia, the only main subject from the book who is still alive, speaks with Engelhart while working through the decision to schedule her death at a clinic in Basel, Switzerland, seeking relief from multiple sclerosis. Maia is slowly and painfully approaching paralysis. “I believe the soul travels on and wants to be free from this prison that has become my body,” she wrote in her application to the clinic. Maia felt early, undiagnosed symptoms of her MS in her 20s, but, following the advice of her father, she hoped for the best and declined treatment. Once the debilitation became obvious, she wondered whether those early treatments would have prevented the disease’s severe progression. The future she is left with will require constant assistance and treatments. In the United States, it will send her into poverty. (She unsuccessfully attempts the most American of options: a GoFundMe for medical expenses.) Maia is sure of her plan, but she seems consumed by wondering whether she could have lived a different life or whether she has suffered enough to end the one she has. Even with her Swiss appointment, she closely follows right-to-die bills in the United States. “On an idealistic level,” she tells Engelhart, “I’m obsessed with dying in my own country.”

For Maia, it seems, dying in the United States would be a kind of acknowledgment, an agreement that her country shares responsibility for her distress. The Inevitable is interested in dignity and how people define it, but it does not ask so explicitly whether the state, and the laws it creates, can recognize people’s dignity in the first place. If our systems of governance fail to care for so many — and kill others on death row and in the streets — can they be trusted to control the choice to die? If a “developing country” without universal health care did offer wide access to assisted death, one wonders whether its use could make that country’s ills more obvious, more urgent, less ignorable. When The Inevitable snaps back to the perspectives of its individual subjects, the implications of these political threads can get lost; the perspectives of nonwhite patients, or people who harbor more doubt in the medical system from the get-go, are also mostly absent from the narrative. Still, the book’s brilliance is in how much fertile ground it lays for these questions.

Near the end of The Inevitable, Engelhart profiles Philip Nitschke, an Australian doctor who has become one of the most vocal supporters of the unrestricted right to die. Nitschke founded Exit International, another organization like Final Exit Network. His is far more boundless than others; they sell The Peaceful Pill Handbook (2006) to almost anyone with instructions for safe suicide methods, and Nitschke gives public “DIY death seminars” with his wife’s help. He is at the radical end of the book’s spectrum, yet after the rigid patterns of death barely evaded by Engelhart’s subjects, his beliefs appear risky but benevolently imaginative.

When Nitschke started his career, he only accepted assisted death on a limited scale. But as he met the kind of people who could be in The Inevitable: Dispatches on the Right to Die — a taxi driver with stomach cancer, for one, who died painfully without the legal right to die — these limits dissolved rapidly. What did age have to do with it, really? And, more than that, if physical pain was an acceptable reason to end one’s life, shouldn’t mental pain be, too? Doctors and lawmakers, he came to believe, couldn’t pick and choose. There was simply too much gray area. “Philip came to think that efforts to suppress rational suicide were ‘a sign of an increasingly sick society,’” Katie Engelhart writes. “They were a sign that, maybe, society wasn’t so confident in its reasons for insisting on life.”

Complete Article ↪HERE↩!

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An increasingly popular way to be buried

— Become part of an artificial reef

Family members watch as a concrete “reef ball” — made in part with the cremated remains of their loved one — is lowered into the water off the coast of Ocean City, Md. The memorials help replenish reefs.

By Kathryn Fink

When Rob Shepherd’s wife, Beth, died of brain cancer at age 66, he knew she had wanted to be cremated. He didn’t know that six years later, he’d be waving goodbye to her remains from a boat in the Atlantic Ocean. Her ashes, now mixed in a concrete ball, were headed to the ocean floor to help form a reef.

Rob, a 69-year-old retiree in St. Louis, had been storing Beth’s cremated remains in their original plastic bag on a living room bookshelf; an urn, to him, felt too permanent. He had been planning to return her to Maryland, her childhood home — and he says it was “a gift from heaven” when he discovered a nonprofit called Eternal Reefs. Since its founding in 1998, Eternal Reefs has worked with families to create concrete “reef balls” that incorporate cremated remains, or “cremains,” and small personal items. Part memorial, part conservation method, they’re deposited to the ocean floor to replenish reef systems. The balls weigh between 600 and 4,000 pounds, and require a crane to be transported.

“I put in our two wedding rings and her favorite pair of earrings, because I know she wouldn’t want to be without her earrings,” Shepherd said in Ocean City, Md., in May, on the day Beth’s remains were placed into the sea. Her reef memorial cost $3,995 — not including the price of cremation, which is $350 on average. The median cost of a funeral with a viewing and cremation was $5,150 in 2019, according to the National Funeral Directors Association.

To avoid dealing with the Transportation Security Administration — which requires specific types of containers for traveling with cremains in carry-on luggage and can prohibit their entry onto planes — Shepherd had driven Beth’s remains from St. Louis. Later that day, he watched a crane lower her memorial ball into the Atlantic — permanently becoming a part of Russell’s Reef, an artificial reef site off the coast of Ocean City. He and the other families memorializing loved ones aboard the boat clapped.

Eternal Reefs grew out of the intersection of “deathcare” — an array of products and services related to death and memorialization — and the environmental movement. Now, against the backdrop of the pandemic, the green burial industry is proliferating. A 2021 survey conducted by the trade magazine American Funeral Director found that 51 percent of respondents have attended a green burial, and 84 percent would consider one for themselves. The green approach aims to reduce the environmental impact of burial and, in some cases, uses remains to repair the destruction humans have inflicted on the earth. These options can take many forms, including coffins made of mushrooms, water-based cremation (in which water and chemicals break down the body) and biodegradable pods that use remains to grow a sapling.

Like the rest of the funeral industry, green burial is regulated. A final disposition — the legal term for what happens to your body after death — is a complicated issue. Many emerging technologies require state legalization, including a new green burial approach of composting human remains. In December, a funeral home outside Seattle became the first to legally perform the process, known as “natural organic reduction.” Several other states are currently weighing its legality.

Since Eternal Reefs’ inception, it has deployed more than 2,500 reef memorials in 30 permitted locations, including off the coasts of Florida, New Jersey and Texas. CEO George Frankel says the demand for reef memorials has grown steadily — but in the past year, information requests and advance burial plans have skyrocketed. He attributes that uptick to the pandemic. “One of the problems we’ve always had as a culture in this country is that we don’t talk about death very easily or very comfortably,” he told me. “The covid virus has forced everybody to look at their own mortality in a whole different way.”

Still, plenty of people decided to pursue this option long before the pandemic. Linda Froncak, who was memorialized in her home of Ocean City the same weekend as Beth Shepherd, made preparations for her burial in the early years of Eternal Reefs. Originally from Minnesota, Froncak died of a heart attack two years ago at age 64, which is how 22 Minnesotans ended up flying halfway across the country to the coast of Maryland, sporting custom T-shirts in her honor that said “Reefer Madness” on them.

The funeral industry, which has long hinged on tradition, is seemingly at odds with the advent of green burial. However, funeral homes vary widely in their willingness to embrace new options. Crystal van Orsdel Marchant, a fourth-generation family employee at Van Orsdel Funeral & Cremation Services in Florida, told me that her fellow millennials are all for facilitating green burial, but the industry has always been resistant to change. She points to the 1970s as an illustration: Her family’s funeral home, like most others, held out on offering cremation services even as interest grew. They eventually bought a crematory after her father told his father repeatedly that they needed one.

Five decades later, cremation has surpassed the casketed burial rate in the United States, according to the National Funeral Directors Association — and Van Orsdel Funeral & Cremation Services now offers eco-friendly burial options, including willow caskets and biodegradable urns. Van Orsdel Marchant says the funeral home may also eventually replace its fleet of hearses with electric vehicles.

Some funeral home owners told me they’ve seen only the occasional request for green burial options. Whether low interest is a symptom or a cause, though, depends on whom you ask. “Funeral homes are reluctant to change because they’re saying, well, nobody’s asking for this,” says Darren Crouch, co-founder and president of green funeral goods supplier Passages International, whose products include biodegradable urns. “If Toyota came out with a Prius 20 years ago and they didn’t put it in the front of their lot, Prius would probably not be a thing right now. We’re trying to educate funeral directors that there is significant demand.”

As for Rob Shepherd, memorializing his wife via reef ball was more than an environmental decision, and more than an homage to her love of Ocean City. It was an unusual, yet heartening, way to process loss — especially for his grandchildren in attendance, who were too young to get to know Beth when she was alive. “We all took turns stirring,” Shepherd said of the process of mixing her ashes with concrete. “We decorated around the top with some of the trinkets and flowers. And we drew pictures with sidewalk chalk on the side — hearts, and goodbyes, and ‘Miss you.’ ”

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An urn that doubles as a planter

— It’s the latest in L.A.’s death positivity movement

Inspired by universal stories of loss, woodworker C.C. Boyce crafts custom-made wood urns for cremation remains that can be used as planters.

By Lisa Boone

When Los Angeles woodworker C.C. Boyce selects locally sourced pieces of California sycamore and speckled maple at Angel City Lumber in Boyle Heights, the artisan has powerful inspiration for her custom-made planters: the deceased.

“I never intended to get into the death care industry,” Boyce says of the planters she designs and builds in her downtown Los Angeles studio. But these are not like the planters you find at plant stores and nurseries. Her planters are, in fact, urns filled with cremated remains and topped with a living plant.

She is turning urns into vessels for life, inspired by universal stories of loss.

“It has been such a rewarding experience,” she continues. “Especially during the pandemic. It felt good to know that I was helping people. We all felt that hopelessness while sheltering in place. It emphasized that you never know what someone is going through.”

Urns have been around for thousands of years, but the funeral industry has been slow to update them for the 21st century home.

Often, Boyce says, clients will reach out to her because they are struggling to find an urn “good enough” for their loved one. A person’s essence is eternal, after all, which explains why so many of us want to keep a part of our loved ones close after they have died.

Artisan C.C. Boyce demonstrates where cremation remains are placed in the bottom of a “Planturn” — a custom-made wood urn to hold cremation remains.

Their singularity is also what makes it so hard for us to process their absence, which is why so many urns end up gathering dust on bookshelves and inside closets. In some instances, Boyce’s clients have waited so long to find an appropriate resting place for their loved one, they can’t remember where they placed the ashes.

“I had a man message me that his wife died three years ago and he had given up trying to find something for her because everything was ugly, mass-produced and not her style,” Boyce says. “Another man said his design-savvy partner would be so angry with him if he put him in something ugly. I hear a lot of stories like that.”

Her untraditional designs are a part of the emerging death positivity movement, a largely women-driven attempt to shatter taboos and discomfort regarding death. You can see it everywhere when it comes to death services: in death doulas, green burials, diamonds created from ashes, death cafes and human composting known as natural organic reduction.

Urns, in particular, have been long overdue for a makeover.

People don’t like the fact that urns look like urns because they remind us of the morbid caricature of death, says Jill Schock, a Los Angeles death doula who works primarily with terminally ill cancer patients.

“The shape of the traditional urn is so embedded in our psychology,” says Schock. “We all have unconscious anxiety about death. When people see a traditional urn in your living room, they immediately know what it is and it makes them uncomfortable.”

She estimates that more than half of her clients, and Baby Boomers in particular, choose cremation over more traditional and costlier burials.

Enter Boyce’s Planturn, a modern, minimal and decorative cremation urn ($250-$600) composed of two pieces of wood and topped with a living plant. While many urns are vase-shaped, Boyce’s urns are geometric and created with woods sourced from fallen trees and coated in an eco-friendly finish.

The urns come in three sizes to accommodate pets and humans along with a muslin bag to hold the cremains and are topped with a plant holder. Boyce recommends succulents, cactuses and air plants because they don’t mind being crowded and don’t need a lot of water.

The top and the bottom of the urn are secured by strong hidden rare-earth magnets to create a seamless piece, often from two types of wood or cork. Sometimes people share stories with her, and sometimes they don’t. “They often have a lot going on,” Boyce says. “Grief affects people differently, and I try to respect that.” Over the last year, she has made urns for pets, parents and grandparents, a 19-year-old woman, a 2-year-old who died of leukemia, and an infant. “Those are heart-wrenching,” she says. “I use speckled maple for infants because it represents innocence.”

Boyce, 47, grew up in Wisconsin, the daughter of an engineer who installed a family wood shop in the basement. When she was 5, she attended her first funeral, an event she remembers vividly.

“They laid out my great-grandmother’s body at the wake, and everyone paid their respects,” she recalls. “I remember being curious and unafraid. They put a rosary in her hands, and I remember playing with it. The funeral director got miffed, and my mom told him to allow it because she was my great-grandmother. My mom was the one who made it so that death was not taboo, that it was something that should be acknowledged and talked about. A lot of people are uncomfortable with death. I’m not.”

Thirteen years later, during her freshman year of college, she experienced a series of losses so staggering, she worried her college professors didn’t believe her when she said she missed multiple classes to attend funerals. “I lost five people close to me in one year. Young, old, expected, tragic. An accidental overdose. A murder. A 4-year-old cousin was killed in a car accident.”

Last year, she lost her mother to COVID-19, and had two pets die.

A closer look at the Planturns: Boyce recommends airplants and succulents to top them off.

The interweaving of death and craftsmanship clearly inspires her work.

“Experiencing so much loss has taught me to hold on to empathy,” she says. “I never really lose sight of what people are going through. Sometimes people don’t take pet empathy seriously, but I do. I’m always willing to listen. And I always think about the people who died as I make each urn. Sometimes I try to match the wood to the pet’s fur.”

Her clients are grateful to have something so personal that reminds them of the ones they lost.

Julie Maigret, a Los Angeles interior designer who purchased a Planturn for two departed dogs and a cat, says no one has ever guessed that the planter in her living room is an urn. “I tend to it like a little garden,” she says. “I have something beautiful that reminds me of my pets. I placed a tiny trailing plant in the urn not realizing it is called red stem tears. There is nothing out there like what C.C. is making and that’s symbolic of the being that you lost. That’s very powerful.”

Juggling restaurant work and custom woodworking jobs since 2015, Boyce made her first Planturn in 2018 as a custom request for a friend’s father. Thinking it was a one-off, she was taken aback when she received an avalanche of positive responses after sharing the planter-urn on her Instagram account.

Boyce’s first thought on reading the comments was: “Am I on to something?”

For a year, she researched cremation, urns and the death care industry as she built prototypes in a variety of shapes and sizes. In 2019, she launched a successful Kickstarter campaign to help buy the equipment she needed to make the urns in an efficient manner. When she was laid off from her restaurant job in March 2020 due to the pandemic, it was the impetus she needed to pivot to making Planturns full time.

“I thought, ‘We’re in a pandemic, and I make cremation urns. Houseplant sales have skyrocketed. It’s now or never. I didn’t think I could quit my job until the urns were more successful. But as it turned out, I had to make the urns successful because I lost my job.”

As someone who deals with death regularly, Schock has seen how customized urns like these can help people process death.

“I know that people who have lost someone enjoy being around their remains,” she says. “This is the reason why people visit a cemetery or have an urn: They want to be close to their loved ones. It’s important to have the urn out and smile and think there’s my loved one, pet or child.”

That is Boyce’s mission.

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The Books Keeping Me Grounded as I Contemplate Becoming a Care Partner to My Parents

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My mother was driving home from work one drizzly day at the end of 2019 when she was struck by an oncoming car that had veered into her lane. Her car was totaled but, luckily, she sustained minimal injuries. Still, she was mere months away from retirement and, now, she had to grapple with the effects of a concussion, shoulder pain, and severe anxiety.

It was eventually determined that she would need surgery for her shoulder. But then the pandemic hit and her treatment was delayed.

A year and a half later, she still has shoulder pain and tires easily. She goes to physical therapy three times a week. Sometimes, she has flare-ups and needs cortisone shots. She’s nervous about driving very far.

My father, meanwhile, has been wrestling with chronic depression and anxiety for years (we two are birds of a feather…). In recent years, his hands have developed tremors that have become increasingly worse. Testing has revealed inadequate answers.

Amidst other medical issues, it also emerged that my father was experiencing memory problems. The other month, he was diagnosed with mild cognitive impairment which, in 50% of cases, can grow into full-blown dementia.

I’ve had an interest in end-of-life care for a while now, mostly because of what I observed when my mom was caring for her own father. I’ve written previously about the books I’ve enjoyed that tackle end-of-life care, compassion fatigue, and caregiver burnout. More recently, the topic has become a side niche for me in my journalism work. In a piece that went live on Rewire.org last month, I write about the lack of systemic support for unpaid family caregivers.

All this time, I felt I was preparing for something. After all, I’m 40. My parents are 70.

But as the past two years have brought more challenges — both with their health and with the decisions I was forced to make for my 6-year-old as COVID spread across the world — I realized I wasn’t prepared at all.

So, I turned to books. Because of course I did. That’s what I do. And while I’m still scared of the inevitable shift to come in the next few years, I at least feel more grounded in what it all means, and what options we have.

If you, too, are entering the “sandwich generation,” allow me to share which books were helpful for me.

Being Mortal by Atul Gawande

I actually read this one several years ago, but I’ve found it to be a good one to return to. In it, Gawande contemplates what it means to experience a “good death,” and shows how medical advances have led us to push back against the bounds of mortality in such a way our quality of life in later years is adversely impacted. He then shows that there is another way and that, rather than postponing death, we can enjoy life — until the very end.

Advice for Future Corpses (and Those Who Love Them) by Sallie Tisdale

A fellow Book Rioter recommended this one to me back when I first started to get nervous about my parents’ health. After reading a library copy, I ordered my own copy, and now I’m doing a reread so I can dog-ear pages and take notes. Every time my husband sees the book on the counter, he shakes his head and calls me a morbid weirdo. But this book is a revelation. Written by a practicing Buddhist who also spent a decade working as a nurse in the field of palliative care, Tisdale provides a comforting perspective on whether or not a “good death” actually exists (good for whom?); what you should and should not do, say, and expect from your loved ones in their later years; what you can expect at the different stages of aging; the nature of grief; and more. I may be a morbid weirdo, but at least I’m a morbid weirdo who now feels a little less afraid.

Can’t We Talk About Something More Pleasant? by Roz Chast

I actually ready this one right before my dad received his MCI diagnosis, and I felt as if I were looking into my future. There is the anxious, aging father who eventually slips into dementia. There is the willful, stubborn-as-fuck, aging mother who refuses to ask for help when she needs it. And then there is the daughter — Roz Chast herself — who doesn’t know quite how to handle this sudden shift without completely upending her own life. Beyond the parallels to my own life, I appreciated how this graphic memoir showed a woman pushing back against what is expected of daughters, making decisions that took into account not only the care of her parents but also of herself. Foregoing one’s own care is a trap many unpaid family caregivers fall into.

What We Carry by Maya Shanbhag Lang

My mom and I have always been close…in a slightly codependent way. So I immediately connected to Lang as she described the ways in which she needed her mother — how much she counted on her to be there and support her during hard times — and how disoriented she became when, after becoming a mother herself, things changed. There are a lot of layers to this memoir, but what felt particularly relevant to me were the moments of reflection around her changing relationship to her mother as her mom became swallowed up by Alzheimer’s and the way this informed how she mothered her own daughter. On top of that, threaded throughout the book, was a fable of sorts about a woman who carries her child across a river and, as the waters rise, must decide whether to save herself or her child. By the end, though, Lang begins to see that the question of who to save is not as black and white as it first appeared.

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What is right to die?

‘The End’ central character depicts reality of dying with dignity

Harriet Walter as Edie and Frances O’Connor as Kate in ‘The End’

The End’ talks about euthanasia and why it might be really important for people who want to die with dignity

By Aayush Sharma

‘The End’ is an Australian TV series that talks about euthanasia, gender identity and more in a quirky manner. It follows three generations of a family trying to navigate through life while facing obstacles at different points of their lives. The show mainly focuses on Edie (Harriet Walter), a woman who has lived the last decade in complete misery and doesn’t want to live anymore. On the other hand, her daughter, Kate (Frances O’Connor), is a doctor in Australia who specializes in palliative care.

Edie hasn’t seen her grandchildren in many years and believes that she doesn’t have any will to live now. She is one of those who advocate ‘euthanasia’. According to her, everyone should be allowed to die when they feel like they can’t take it anymore.

The most important aspect of the story is that it is not superficial at all. It is based on real-life experiences where we have seen people fighting for euthanasia and demanding that they should be allowed to decide when they want to end their life.

Harriet Walter and Frances O’Connor in ‘The End’

What is right to die and why Edie wants to end her life?

‘Right to Die’ is a concept based on the opinion that human beings are entitled to end their life or undergo voluntary euthanasia. Voluntary euthanasia is conducted with consent. It is understood that a person with a terminal illness, incurable pain, or without the will to continue living, should be allowed to end their own life by using assisted suicide or to decline life-prolonging treatment.

However, there is always a debate as to who is empowered enough to assist in such matters. Showrunner Samantha Strauss has worked beautifully to portray this issue in a quirky manner. The show mainly follows Edie (Harriet Walter) trying to end her own life. When a log rolls from the fireplace and prematurely sets her house ablaze, Edie decides to jump from her house’s window and end everything. However, Edie survives and suffers injury on her left arm. She believes that if someone is competent to decide, nobody other than that patient should have the authority to decide whether life is worth continuing.

Belinda Teh Walks from Kings Park to the WA Parliament with Euthanasia advocates on August 6, 2019, in Perth, Australia

The attempt forces her daughter to move her mother from England to Australia to keep an eye on her. During one of the scenes, we get to know that she is a survivor of breast cancer and she has also had a double mastectomy. As soon as she is relocated to a retirement village in Australia, we get to know that there are many who want to die with dignity and not suffer in pain.

This is the entire crux of the situation: the right to die with dignity. In one of the scenes, a character on the show blames the hospitals for making people like them “cash cows”. He also says that the hospitals put them in misery so that they can make money out of it.

Youssef Cohen, 68, sits while undergoing cancer treatment as his wife Lindsay Wright looks on, on March 17, 2016, in New York City

The decision about whether to continue living in such conditions is among the most important that can be made. Many patients in a persistent vegetative state or else in chronic illness, do not want to be a burden on their family members.

Furthermore, the right to die with dignity is not an ordinary law. It is not a right granted to someone to kill, but it should be seen as an option for a conscious and free person to be understood and helped in a special request that is to end his or her life.

As far as the show is concerned, the idea of euthanasia is something that you would feel conflicted about. However, to Edie, it doesn’t. She feels that rather than going to a retirement village and die while being in suffering would be much worse than taking her own when she knows that it is time. This is not something that most people will understand, but as you watch the show you’ll also realize that it tackles the issue of the right to live as well. When Edie is confident that she wants to end her life, in the process, she also gets to know why living is important.

Let’s just say that ‘The End’ might be one of the most important shows of our times and tells the world about people in suffering.

‘The End’ premieres exclusively on Showtime on Sunday at 8 pm ET.

Complete Article ↪HERE↩!

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New research maps global assisted dying laws for the first time

Research shows the UK, France and Portugal in orange and other western countries such as Spain, Germany, and the Netherlands in blue

By Sinead Butler

A new study into worldwide laws on assisted dying has launched the first map of its kind to demonstrate the difference in policy around the globe.

Humanists UK have found that more countries have passed assisted dying laws – affecting over 250 million people – since MPs last debated proposals on changing the law in 2015.

The research also uncovered two predominant models of assisted dying internationally.

The first provides assistance to those who have six or fewer months left to live – found in New Zealand, and some parts of the United States and Australia.

While the second enables choice for both those who are terminally ill and incurably suffering.

This model can be found in Austria, Canada, Belgium, Italy, Germany, Luxembourg, the Netherlands, Spain, and Switzerland.

A similar bill is also currently under consideration in the Republic of Ireland.

Elsewhere, both euthanasia and assisted dying are illegal in the UK.

Helping someone to end their life is currently a criminal offence and carries a maximum penalty of 14 years imprisonment in England and Wales.

Though terminally ill patients in the UK do have the right to refuse treatments that might extend their life – controversially, this is sometimes referred to as “passive euthanasia.”

MPs previously debated changing assisted dying laws in 2015 but voted overwhelming against the proposal – with 330 voting against and 118 in favour.

The British Medical Association (BMA) has historically stated their opposition to assisted dying “in all its forms” being legalised and “believes that the ongoing improvement in palliative care allows patients to die with dignity.”

It also “insists” voluntary and non-voluntary euthanasia should not be made legal in the UK.

But if euthanasia were to be legalised, the BMA says “there should be a clear demarcation between those doctors who would be involved in it and those who would not.”

As the map shows more countries have passed assisted dying laws in recent years, Humanists UK want the government to revisit the right to die debate.

The charity’s Director of Public Affairs and Policy Richy Thompson has called on lawmakers “to pay close attention to the international consensus on assisted dying.”

“The publication of this map makes it clear like never before that the UK’s laws on assisted dying are in urgent need of review.

He added: “It is highly significant that in the years since our lawmakers last considered proposals on assisted dying, progressive countries around the world have continued to roll back their bans in the face of overwhelming evidence.”

“But it is also notable that on the rare occasions when assisted dying legislation has been considered in the UK Parliament, it has almost always excluded those who are incurably suffering, like Tony Nicklinson and Paul Lamb – which is at odds with most other jurisdictions’ laws.

“With several more countries now having passed or looking set to pass laws which will prioritise a person’s quality – not quantity – of life, we urge lawmakers in the UK to pay close attention to the international consensus on assisted dying and immediately conduct an inquiry into the law.”

Though the Care Not Killing alliance who oppose euthanasia has criticised the Humanists UK’s map.

Dr Gordon Macdonald, Chief Executive of Care Not Killing commented: “We do not have “passive” euthanasia in this country and to suggest this is grossly misleading and wrong in law.”

He added: “What this map fails to do is to show the widespread discrimination against the elderly and disabled people, wherever euthanasia and assisted suicide (EAS) has been legalised, or how the laws have changed over time.

“We only have to look at the Netherlands and Belgium which introduced laws for terminally ill mentally competent adults or those suffering unbearable pain. Now both countries regularly kill disabled people, those with chronic conditions, individuals with mental health problems, such as patients with dementia, depression, anorexia even a victim of sexual abuse, non-mentally competent children and babies and want to extend this further to those tired of life.”

“Neither does this map show how in jurisdictions like the US State of Oregon, six in ten (59 per cent) of those ending their lives in 2019 cited the fear of being a burden on their families as a reason and further 7.4 per cent cited financial worries. While in Canada, 1,412 people cited loneliness as a reason for having their lives ended.

“There are other problems too. It fails to mention the growing body of research showing legalising EAS can lead to an increase in the suicide rate in the general population. As one major study from Oregon noted, legalising Physician Assisted Suicide was associated with an increase of 6.3 per cent in the number of suicides, once all other factors had been controlled. Among over 65s the figure was more than double that.”

Dr Macdonald concluded: “No, there is nothing progressive about legalising EAS. Quite the contrary.

“At a time when we have seen how fragile our health care system is, how underfunding puts pressure on services and when up to one in four Brits who would benefit from palliative care but does not currently receive it, pushing an extreme ideological policy not only is the height of folly but incredibly dangerous. ”

Recently in Scotland, a new bill to legalise assisted dying was lodged on June 21 at the Scottish Parliament, the BBC reported.

The bill aims to legalise assisted dying for terminally ill, mentally competent adults.

Although previous attempts to change the law have failed, a cross-party group of MSPs have signed an open letter in support of the bill.

Complete Article ↪HERE↩!

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We Used to Photograph the Dead

What a curious Victorian practice reveals about our modern approach to death

By Brandy L Schillace

It’s a wistful image. The unknown woman seems pensive, gazing reflectively into the foreground. Her head rests upon lace, possibly her own handiwork, and behind is a shelf of small vials, the homemaker’s apothecary. She is graceful, quiet, restive.

In truth, the woman is dead.

The picture (below) was taken postmortem, her body poised under the direction of memento mori photographers using the daguerreotype processes (iodine-sensitized silvered plate and mercury vapor).

Why go through all this trouble? The nineteenth century saw a sudden and increased interest in public cemeteries and mourning rituals of all kinds (such as brooches made of human hair, complex funeral fashions), partly due to Queen Victoria’s own prominent widow’s weeds, and partly because the middle classes had means to acquire them. But it was the advent of photography that offered the best means of permanently memorializing the dead.

From the collection of Steve DeGenero, c/o DEATH’S SUMMER COAT

As a historian and author, I’ve been researching death and dying for years. My first book, Death’s Summer Coat, took a long look at our grieving rituals — and in this series, I have been re-examining those practices in light of Covid-19.

There are two images from my research into memento mori that I find particularly moving. The first is presented above. But the second wounds me with its grace, its heartfelt grief. If offers us a picture of the mother in mourning, having lost her infant child — and it offers a reminder that in the 19th century, the odds of raising your children into adulthood were dismal. Disease, poor hygiene, the absence of germ theory, and lack of vaccines all contributed to extraordinary mortality in children under the age of 5 (that is 46% or roughly 463 deaths per 1000 births).

From the collection of Steve DeGenero, c/o DEATH’S SUMMER COAT

Photography, with its use of mercury and silver, was expensive. So much so that most people never had a photo taken at all, or only on their wedding day. Imagine, then: no baby pictures. No photos of children at play, no images of holidays gone by. The human memory loses detail quickly; the context fades, then the contours, then the features of even well-beloved faces. Posing a child in death, often as though sleeping or still alive, was a means of keeping their face fresh before you — a way of remembering.

These images were not hidden away either. They would be displayed in the home, along with other features of grief. Black draped over mirrors or windows, and of course, the mourning clothes worn by those who could afford them. In our present world of rush and hurry, we are encouraged to get over our grief and come back to “normal,” understood as a state prior to loss — so great is this impulse that lingering grief is considered pathological. But for Victorians, grief was public, communal, and long lasting.

When Queen Victoria’s husband Albert died, she withdrew from public and wore black for the rest of her life. She was, in many respects, defined by her grief. It has been argued that the responsibility for making mourning ‘fashionable’ lies with her — by the height of the Victorian period, mourners were living memorials (even mourning billboards) to death.

In the first year of mourning, for instance, a widow wore black crape, a scratchy silk material that was stiff, crimped, and reflected no light. In her second year, she wore “secondary mourning,” which was still black but might be trimmed with white collars or cuffs. “Ordinary mourning” was next, again, still black, but now the fabric could be shiny — and then “half-mourning” when gray or purple was permitted.

In 1840, barrister Basil Montagu records that “in the mourning dress, the outward sign of sorrow, we call for the solace of compassion, for the kind words and looks of friends and for the chastened mirth of strangers, who, unacquainted with the deceased, respect our grief.” Walking down a city street, an onlooker might not only understand who was grieving, but in what stage of grief they happened to be.

Photographing the dead occurred at the very beginning of these stages, when the body still remained in the home — the literal funeral parlor. They would be posed, sometimes with still living children, as though still alive (sometimes with eyes open and propped into a seated position; many such photos are viewable in the Burns Archive). It inaugurated a period of intense grief, and provided a memento that would serve as the body itself was removed for burial. And yet, the practice fades and disappears by the end of the century.

Some of this is driven by the practical changes of photography; as it became less expensive, people had more living images of their loved ones to hand. But it is also true that the Victorian grief culture fell victim to the speed of life, industry, business, and changing ideas about what sort of emotions were too private the display. We are not very tolerant of grief, today. As though there is something wrong with feeling loss so keenly.

In my book, I reflected that “the modern man has lost loss; death as a community event and mourning as a communal practice has been steadily killed off.” That was 2014, and it seems a very long time ago; we’ve lived through a great deal since then, including a pandemic and mortality rates that simply cannot be ignored, screened, or hurried off

I’ve begun to wonder what we can learn from a cultural past that didn’t try to hide death — that even displayed photos of loved ones after death. Perhaps it’s time to revisit the slow process, slow like those vapor-produced daguerreotypes, taking form and changing shape and slowly coming to light

We are allowed our pain. And perhaps, if we were allowed it more publicly, we might all be kinder and gentler to each other. In my next piece for this series, I want to talk about time — taking time, having permission, and knowing that there is no wrong way to grieve.

Complete Article ↪HERE↩!