Category: Cultural Expressions

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Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families

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“I’m not anti-hospice at at all,” says Joy Johnston, a writer from Atlanta. “But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”

Even though surveys show it’s what most Americans say they want, dying at home is “not all it’s cracked up to be,” says Johnson, who relocated to New Mexico at age 40 to care for her dying mother some years ago, and ultimately wrote an essay about her frustrations with the way hospice care often works in the U.S.

Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She says during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.

According to a recent Kaiser Family Foundation poll, seven in 10 Americans say they would prefer to die at home, when the time comes. And that’s the direction the health care system is moving, too, hoping to avoid unnecessary and expensive treatment at the end of life.

The home hospice movement has been great for patients, says Vanderbilt palliative care physician Parul Goyal — many patients are thrilled with the care they get.

“I do think that when they are at home, they are in a peaceful environment,” Goyal says. “It is comfortable for them. But,” she notes, “it may not be comfortable for family members watching them taking their last breath.”

Still, when it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, according to new research, and a majority of Medicare patients are now turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital, under the close supervision of doctors and nurses.

Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease, to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management and quality of life, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.

Usually, hospice care is offered in the home, or sometimes in a nursing home.

Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.

According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care.

For example, one intimate task in particular changed Joy Johnston’s view of what hospice really means — trying to get her mom’s bowels moving. Constipation plagues many dying patients.

“It’s ironically called the ‘comfort care kit’ that you get with home hospice. They include suppositories, and so I had to do that,” she says. “That was the lowest point. And I’m sure it was the lowest point for my mother as well. And it didn’t work.”

Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, says Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.

“Imagine if you’re the caregiver, and that you’re in the house,” Teno says. “it’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”

That’s exactly what happened with Teno’s mother.

“While it was difficult for me to witness, I knew what to do,” she says.

In contrast, Teno says, in her father’s final hours, he was admitted to a hospice residence. Such residences often resemble a nursing home, with private rooms where family and friends can come and go, and with round-the-clock medical attention just down the hall.

Teno called the residence experience of hospice a “godsend.” But an inpatient facility is rarely an option, she says. Patients have to be in bad shape for Medicare to pay the higher in-patient rate that hospice residences charge. And by the time such patients reach their final days, it’s often too much trouble for them and the family to move.

Hospice care is a lucrative business — now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren’t building dedicated hospice units or residences, in general, mostly because such facilities aren’t profitable enough.

Joe Shega, chief medical officer at for-profit Vitas, the largest hospice company in the U.S., insists it’s the patients’ wishes, not a corporate desire to make more money, that drives his firm’s business model. “Our focus is on what patients want, and 85 to 90 percent want to be at home,” Shega says. “So, our focus is building programs that help them be there.”

For many families, making hospice work at home means hiring extra help.

‘I guess I’ve just accepted what’s available’

At the kitchen table of her home outside Nashville, hospice patient Jean McCasland is refusing, on the day I visit, to eat a spoonful of peach yogurt. Each morning, nurse’s aide Karrie Velez pulverizes McCasland’s medications in a pill crusher and mixes them into her breakfast yogurt.

“If you don’t, she will just spit them out,” Velez says.

Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get some kind of break each day.


John McCasland (right) of Goodlettsville, Tenn., hired a private caregiver to help with his wife, Jean (left) who suffered from dementia for eight years. Even when hospice took over, he still found he needed the extra help from Karrie Velez (center). Jean died in October after 13 months on home hospice.

When Velez is not around, John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home.

“I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,” John says.

But what hospice provided wasn’t enough help. So he’s had to drain their retirement accounts to hire Velez, a private caregiver, out-of-pocket.

Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce.

Medicare says hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.

Jean McCasland’s husband hasn’t complained. “I guess I’ve just accepted what’s available and not really thought beyond what could be,” John says. “Because this is what they say they do.”

Families rarely consider whether they’re getting their money’s worth, because they’re not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he’d never noticed his agency charges nearly $200 a day, whether there is a health provider in the home on that day or not.

That daily reimbursement also covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John says that gives him peace of mind that help is a phone call away. “There’s a sense of comfort in knowing that they are keeping an eye on her,” he says.

The rate that hospice charges Medicare drops a bit after the patient’s first two months on the benefit. After reviewing his paperwork, John realizes Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice. Was the care his wife got worth that?

“When you consider the amount of money that’s involved, perhaps they would provide somebody around the clock,” he says.

Sue Riggle is the administrator for the McCaslands’ hospice agency, and says she understands how much help patients with dementia need.

“I think everybody wishes we could provide the sitter-service part of it,” says Riggle. “But it’s not something that is covered by hospices.”

Her company is a small for-profit business called Adoration; she says the agency can’t provide more services than the Medicare benefit pays for.

I checked in again with John and Velez (Jean’s long-time private caregiver) this winter. The two were by Jean’s side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.

This experience of family caregivers is typical, but often unexpected.

‘It’s a burden I lovingly did’

“It does take a toll” on families, says Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, who studies what typically happens in the last years of patients’ lives. The increasing burden on loved ones — especially spouses — is reaching a breaking point for many people, her research shows. This particular type of stress has even been given a name: caregiver syndrome.

“Our long-term care system in this country is really using families — unpaid family members,” she says. “That’s our situation.”

A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to choose otherwise for themselves.

Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tenn. He died of prostate cancer in their bedroom in 1993.


Coneigh Sea is a social worker from Murfreesboro, Tenn., who cared for her husband as he died on home hospice. Now, she wants to make sure her children don’t do the same for her.

Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she says. But it was a burden.

“For me to say that — there’s that guilt,” she says, then adds, “but I know better. It was a burden that I lovingly did.”

She doesn’t regret the experience, but says it is not one she wishes for her own grown children. She recently sat them down, she says, to make sure they handle her death differently.

“I told my family, if there is such a thing, I will come back and I will haunt you,” she says with a laugh. “Don’t you do that.”

Sea’s family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home, or passing away with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid.

As researchers in the field look to the future, they are calling for more palliative care, not less — even as they also advocate for more support of the spouses, family members and friends who are tasked with caring for the patient.

“We really have to expand — in general — our approach to supporting caregivers,” Ornstein says, noting that some countries outside the U.S. pay for a wider range, and longer duration of home health services.

“I think what we really need to do is be broadening the support that individuals and families can have as they’re caring for individuals throughout the course of serious illness,” Ornstein says. “And I think that probably speaks to the expansion of palliative care in general.”

Complete Article ↪HERE↩!

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A 97-Year-Old Philosopher Ponders Life and Death: ‘What Is the Point?’

In his 1996 book about death, Herbert Fingarette argued that fearing one’s own demise was irrational. When you die, he wrote, “there is nothing.” Why should we fear the absence of being when we won’t be there ourselves to suffer it?

Twenty years later, facing his own mortality, the philosopher realized that he’d been wrong. Death began to frighten him, and he couldn’t think himself out of it. Fingarette, who for 40 years taught philosophy at the University of California at Santa Barbara, had also written extensively on self-deception. Now, at 97, he wondered whether he’d been deceiving himself about the meaning of life and death.

“It haunts me, the idea of dying soon, whether there’s a good reason or not,” he says in Andrew Hasse’s short documentary Being 97. “I walk around often and ask myself, ‘What is the point of it all?’ There must be something I’m missing. I wish I knew.”

Hasse, Fingarette’s grandson, turned the camera on the philosopher in the last months of his life. The two were very close—when Hasse was a child, Fingarette would invent stories and record them on tape to send to his grandson, who lived 300 miles away, so that he could listen to them before bed. “My grandfather was one of the most thoughtful men I’ve ever met,” Hasse told me.

Being 97 is a poignant film that explores the interiority of senescence and the struggle of accepting the inevitable. Hasse quietly observes the things that have come to define his grandfather’s existence: the stillness of time, the loss of ability, and the need to come to terms with asking for help. “It’s very difficult for people who have not reached a state of old age to understand the psychology of it, what is going on in a person,” Fingarette says.

In one scene, Fingarette listens to a string quartet that was once meaningful to his late wife. He hasn’t heard the piece since her death seven years earlier—“her absence is a presence,” he says in the film—and becomes overwhelmed with grief.

Hasse made the artistic choice to omit his voice from the film, so while he was filming the scene, he had to stifle the urge to comfort his grandfather. “It’s very difficult to watch anyone in that kind of pain and not be able to console them, especially someone you love so dearly,” Hasse said. “I found myself sitting just a few feet away from him, unable to reach out because there was a camera between us. All I wanted to do was put a hand on his shoulder, embrace him, be with him in his pain.” After what felt to Hasse like an eternity, the filmmaker handed his grandfather a tissue to wipe away his tears. The scene ends just before this happens.

Fingarette died in late 2018. Just weeks earlier, Hasse had shown him the final cut of the documentary. “I think it helped give him perspective on what he was going through,” he said. “He loved talking about what a mysterious process it had been to film all these little moments of his life and then weave them together into a work that expressed something essential about him.”

The day before he died, Fingarette uttered his final words. After spending many hours in silence with his eyes closed, Hasse said, his grandfather suddenly looked up and said, “Well, that’s clear enough!” A few hours later he said, “Why don’t we see if we can go up and check it out?”

“Of course, these cryptic messages are up to interpretation,” Hasse said, “but I’d like to believe that he might have seen at least a glimpse of something beyond death.”

In the film, Fingarette admits that there “isn’t any good answer” to the “foolish question” of understanding mortality. “The answer might be … the silent answer.”

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The woman whose job it is to prepare people to die

She arranges everything, from finding long lost families to organising organ donation

by Abbie Wightwick

 

She’s only 26 but Claire Wretham is employed by a Welsh hospice to help people face death.

She is the youngest person in any of Marie Curie’s nine hospices nationwide in the role.

Watching her own grandmother have  “a beautiful death” inspired her to help others do the same.

“We all deserve a good death that celebrates life. I am helping people feel at peace,” she said.

As full time spiritual care co-ordinator at Marie Curie Hospice, Cardiff and the Vale , Claire answers any questions patients and their families have about life’s greatest mystery.

Marie Curie spiritual care coordinator Claire Wretham with her grandparents Maura and John Brosnan. Maura’s death in 2016 inspired Claire to take up her post.

“My grandmother died at home, a really beautiful death with all her family around her. We were able to facilitate for her the perfect death.

Penarth with everything from tracing lost loved ones to special religious or cultural requests, officiates at funerals and goes to local mosques,synagogues and church groups to talk about death and dying.

In an increasingly secular and diverse society her role at Marie Curie has replaced the traditional one of chaplain, although Claire still uses that term when first meeting patients.

“I introduce myself as chaplain because it really is a modern interpretation of that,” she explained.

“My age is mostly irrelevant. People often comment on the fact I am young but I don’t think it hinders my role.

“People my age group see the world differently and approach things in a different way.

“Part of my role is asking people “what makes you you, how would you describe yourself and how do you find peace?

“As younger people we often have lots of spaces and experiences to express ourselves, but some older people don’t feel the same freedom to express themselves, so I ask “who are you, what makes you you and what makes you comfortable and at peace?.”

A practising Christian, Claire was appointed to the job two years ago and is an “allied health professional”, not a medic, although she knows and can explain what may happen during dying and immediately after.

Her role as spiritual adviser was created in response to research that Marie Curie did in 2015 investigating how to improve access to palliative care for people with dementia, learning disabilities and people with different or no religious beliefs.

Sarah Lloyd-Davies, hospice manager at Marie Curie Hospice, Cardiff and the Vale, explained: Hospice care and chaplaincy services have long been rooted in the Christian tradition, as both developed at a time when Christianity was the majority religion in the UK.

“As the country has grown more diverse there has also been a trend in growing numbers of people identifying as nonreligious.

“The hiring of a spiritual care coordinator to replace the traditional chaplain role at the Marie Curie Hospice Cardiff and Vale reflects the feedback from our local community, which recognises that one person and one approach cannot meet everyone’s spiritual needs.

“In order to make sure our services are truly inclusive and person-centred, we need to focus on connecting with belief-based communities and exploring new ways of providing spiritual care so we can ensure people feel supported in the best way for them at the end of their life.

Whatever background people come from death and dying are still taboo subjects which Claire must help them face.

“A lot of my job is myth busting and explaining to people how it works at the hospice and what they can expect as they come to the end of their life,” the 26 year-old said.

“Questions I would normally ask are whether they have any spiritual or religious needs and whether they have a faith or anything that’s a source of comfort.

“If they are religious I will discuss that with them – for instance if they are Catholic and want the last rites I liaise with their priest, if they are Muslim and want their bed facing Mecca and halal meals my job is to arrange that and liaise with nursing staff about it.”

There is “no formula or prescription” for talking about death so Claire begins with a few questions.

“It’s about asking questions to get people to explore death or go away and think about it.

“The sort of questions I’ll ask are things like – have you got any unfinished business or anything you want to tie up? That can be relationships, writing a will, funeral planning, making amends with estranged family members , and how we can help with that, if we can.”

When patients tell her they are scared of dying she tries to remove some of the mystery around it to reassure.

“If someone is scared of dying a big part of it, from my point of view, is explaining what will happen when they die.

“There are lots of misconceptions about pain relief. They want to know what it will feel like. I explain that they will probably just fall asleep more.

“I explore with them what they think that will be like. There is nothing you can say really, ultimately it’s something people form their own ideas about.

“I may also ask people what they want their legacy to be. Some people think there is nothing after you are dead so I’d ask them how they want to be remembered.”

But she doesn’t push it if people don’t want to talk.

“We live in a culture where it’s normal to talk about things but the idea of a chaplaincy and spiritual support is so alien to some people that they say no, they don’t want to talk to me.”

As she doesn’t have all the answers Claire tries to keep things practical when explaining what happens after death in a hospice.

“I know what a dead body looks like, where you go after death and what the crematorium looks like.

“My main technique is to remove any confusion. I do ask people if they are frightened and how I can help them not feel afraid.

“Most of the time people are worried about “what’s happening next and what about the pain?”

“I think death is so difficult to talk about because we don’t see death often. The majority of deaths happen in hospital. People don’t know what death looks like.

“For us in a hospice a huge part of our role is pulling the curtain on that. Lots of people come in asking really big questions and having misconceptions.”

These include controversy and suspicion surrounding syringe drives to administer pain relief and the mistaken beliefs about how they are used.

“People are horrified by the syringe driver. It’s in a locked box and nurses replenish pain killers. It is controlled pain relief. Some people think it is a death sentence, but it’s not. Sometimes people have a syringe driver for pain relief and then have it removed.”

“On the other hand some people say “can I have the drugs now?”. That’s not legal and not what hospices are about.”

“When we talk to people here about donation it’s usually only corneas because they can’t donate anything else. Some people say “you can take anything but not my eyes, but I have watched eyeball removal and it is really amazing because one cornea can be used to help eight people.”

It is Claire’s job to arrange any donations. She recalled one case when she arranged for a motorbike to collect the brain of a patient with motor neurone disease who had requested it be donated to medical science – something that had to be arranged within 72 hours.

“I spent all day organising brain removal and that afternoon someone came down from London on a motorbike and took it back for donation to medical science.”

Although her job does involve these practical matters it is also a matter of listening to people at what can be the hardest time of their lives.

“My job is varied Once a man came in and said his father had died here 28 years ago. He said he had never visited Wales and now lives in Canada but had flown into Cardiff to see where his father died.

“I showed him around the hospice and talked to him about his grief and about Penarth. He was very tearful, he had flown all the way from Canada to see where his dad died, but he was able to resolve his grief.”

Surrounded by grief and death on a daily basis Claire says it is not morbid but a privilege to help people.

“Death happens to everyone. It’s coming to all of us. We should look to normalise it.”

Complete Article ↪HERE↩!

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To Die Is Different From What Anyone Supposed

Art, philosophy and mortality.

By Joseph Kugelmass

At an overlooked moment in his Essays, Michel de Montaigne writes that “life itself is neither a good nor an evil; life is where good or evil find a place, depending on how you make it for them.” Yet it’s hard for anyone to reckon, before the point is moot, how much good and evil one life shelters in its span. No matter what we do while we’re alive, there’s plenty that we leave unfinished, or that we gape at while it goes awry. There are mistakes that we still might have enough time to mend. Hamlet got it backwards: it’s not death, but life, that “puzzles the will” with its ironies and uncertainty.

Every now and then, however, people manage to outlive themselves. Convicts serving life sentences do, for example, which is why “Folsom Prison Blues” is such a savage, luminous song. Mortally ill people sometimes end up in an equally uncanny position. Leo Tolstoy’s character Ivan Ilych, on his deathbed, glimpses the ugly truth of his life: “It occurred to him that what had formerly appeared completely impossible to him, that he had not lived his life as he should have, might be true. It occurred to him that those barely noticeable impulses he had felt to fight against what highly placed people considered good, barely noticeable impulses which he had immediately driven away—that they might have been the real thing, and all the rest might have been not right.”

Russian literature is full of people like Ivan. Prince Myshkin (in Fyodor Dostoevsky’s novel The Idiot) eventually realizes that “for a long time now, he had not been talking about what he needed to talk about, and had not been doing what he needed to do.” The horror of this realization breaks his spirit, and he succumbs to seizures and catalepsy, dead to the world. A quieter storm breaks over Lambert Strether’s head in The Ambassadors, by Henry James: “I’m too old…What one loses one loses; make no mistake about that. Still, we have the illusion of freedom; therefore don’t, like me to-day, be without the memory of that illusion.”

Outcries of regret like these carry an emotional charge for us, the audience, that can be hard to explain. Is the finality of death, prison, or old age really profound just because—to quote Michel Houellebecq—the goal of life’s been missed? Critics have spent their whole lives on the works of Henry James only to conclude that “the idea of ‘too late’” was some kind of regrettable obsession on James’s part (see, e.g., Berthold 1983). After all, the curtain does have to fall, sooner or later.

Fortunately, these epiphanies that reach us from death’s farther shore aren’t really bemoaning lost opportunities. Instead, they are bits of fire carried down from those Olympian peaks where life appears as it really is: a frenzied circus of petty motives, bootless efforts, and misunderstandings. Death is the greatest moral agent in all of life. It boils each individual down to her most generous acts; nothing else survives. We are the sum of our gifts to the people who will outlive us. Thus it does matter what a dying man decides to regret. His regrets, useless to him, are the bitter correctives that we survivors may choose to adopt.

Literature’s stuffy cousin, philosophy, is always playing a game of death. The philosopher tries to abstract truths about life from human experiences, impartially, as if she hadn’t lived them herself. Baruch Spinoza famously wrote that philosophy should consider the world sub specie aeternatis, “from the perspective of eternity.” Erasmus, in The Praise of Folly, paints a vivid picture of Menippus (who, supposedly, lived on the moon) doing just that: 

“If a man like Menippus could look down from the moon and behold those innumerable rufflings of mankind, he would think he saw a swarm of flies and gnats quarreling among themselves, fighting, laying traps for one another, snatching, playing, wantoning, growing up, falling, and dying. Nor is it to be believed what stir, what broils, this little creature raises, and yet in how short a time it comes to nothing itself; while sometimes war, other times pestilence, sweeps off many thousands of them together.”

It’s a comical picture, but there’s a great deal of forgiveness in it as well. When it’s our turn to die, there’s no longer any reason to stay angry at people who loved us, or cheated us, or whom we envied. Recrimination and bitterness lose their impetus. The facts of life don’t alter just because we die; if we lived forever, we’d still behave like idiots from time to time. But the fact of death, seen clearly and steadily, drags many other things with it into the light. At the moment of his death, when he’s murdered, Lester Burnham (in American Beauty) “can’t feel anything but gratitude for every moment of my stupid little life.”

Philosophy as we know it began when Plato sat down and tried to make sense of the murder of Socrates; the vicious Athenians who killed him to preserve their monopoly on morals become, in The Republic, simple cave-dwellers frightened of sunlight. Their cruelty is pardonable blindness; in order to write about the death of Socrates, in a fashion that honored his greatness, Plato had to make peace with his teacher’s executioners.

We tend to think of “objectivity” as a cold, rational perspective that doesn’t take sides on questions of morality. We associate it with empirical observation and scientific testing. That’s a tremendous misunderstanding. To be objective is to grasp something as a whole. It lays bare the threads that connect a senseless murder in Reno with a “fancy dining car” on a passing Folsom train. It’s realizing, as Plato did, that Socrates couldn’t have become so widely known and admired in a city less dangerous to him than Athens. It means remembering, like Ivan Ilych, the impulses towards something better that one felt, repressed, ignored, all for the sake of a life not worth living in the first place.

Walt Whitman wrote, in his “Song of Myself,” “to die is different from what anyone supposed, and luckier.” For, as he says in the preceding line, “All goes onward and outward, nothing collapses.” To see that, instead of just divining and proclaiming it, is the work of philosophers: those few who teach themselves to die with eyes open.

Complete Article ↪HERE↩!

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The struggle to create a new craft of dying

—what is medicine’s role?

By Richard Smith

“Lyn Lofland’s The Craft of Dying (1978) is one of the most important books on post WWII death and dying practices that almost no one has read,” writes John Troyer, director of the Centre for Death and Society at Bath University. He thinks that everybody interested in death and dying should read the book. I agree. Potentially that means that every human being should read the book—because who cannot be interested in death, arguably the most important thing about us. Plus The Craft of Dying is short, easily read, full of compelling stories, and constructs a clear argument.

“Death can neither be “believed” nor “magicked” nor “scienced” away,” writes Lofland in her first line. But we can’t stop ourselves from thinking about it: “Everywhere and always humans think about it and develop beliefs regarding it and produce emotions toward it and do things relative to it. What they think, believe, feel, and do is, of course, variant. But that they think, believe, feel, and do is a universal.”

Every culture has developed beliefs and customs around death, but human death, argues Lofland, has changed dramatically in the past 60 years. Until that time people died mostly of infectious disease and injuries. The period of dying was short, and it was clear when people were dead. Medicine had little to offer. Now people die mostly of chronic disease, and the length of dying is long. Death is not easily defined, and doctors have much to offer, including long term ventilation, heroic operations, and drugs, some of them extremely expensive.

“In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die,” writes Atul Gawande in Being Mortal, published in 2014. Lofland wrote something similar in 1978: “There exists currently no widely accepted, fully articulated, well-integrated dogma that gives ‘being dying’ its meaning or its place in the larger scheme of things.”

A cultural vacuum has been created, and inevitably attempts are underway to fill the vacuum. We have entered a new age of what Lofland calls “thanatalogical chic”: in the contemporary cliché “death is the new black.” We have to decide how to die, where to die, how to dispose of the dead, how to mourn, and, most difficult of all, what death means.

One response has been what Lofland teasingly calls “the Happy Death Movement.” It is an inchoate social movement with many practitioners, strands, and different views, but Lofland sees patterns that were emerging in the 70s and are still emerging.

Firstly, a social movement needs an enemy, and the enemy of the Happy Death Movement is death denial, death as the great taboo. Lofland defines the enemy: ”America is a death-denying society…death is a taboo topic…death makes Americans uncomfortable so they run from …death is hidden in America because Americans deny it….” For America, Lofland’s home, we could substitute any high-income country—or even any high-income group within a poor country. “The consequences of all this denial and repression are,” continues Lofland, “asserted to be quite terrible: exorbitant funeral costs and barbaric funeral practices, inhumane handling of dying in hospitals, ostracism of the dying from the living, inauthentic communication with the fatally ill, an unrealistic, mechanical, non-organic view of life, and so forth.”

Lofland is dismissive of the idea of death as taboo: “One might consider it somewhat odd that the statement that death is a taboo topic in America should continue to be asserted in the face of nearly a decade of non-stop talking on the subject.” Talk, writing, and storytelling about death has continued unabated ever since and probably increased. It is probably fair to say, however, that there is much less familiarity with the experience of death: dying people, the signs of death being close, dead bodies, and the disposal of the dead.

A social movement also needs something to shoot for, and for the Happy Death Movement it’s some form of idealised premodern death, with the dying person at home surrounded by loved ones and calmly bidding them goodbye. Lofland is dismissive of this as well, including in her book stories of the dying being buried alive (in Samoa) and ignored while families party (in Tahiti).

As you would expect, the attempts to create new behaviours and beliefs around death reflect broader cultural trends, which Lofland identifies in the United States as “ ‘humanistic-counterculture’ denouncement of modern society in general, which denouncement emphasizes the Western world’s dehumanizing, unemotional, technologically dominated, inauthentic, and constricted character.” That cultural trend is alive and flourishing in most Western societies. “Why not,” asks Lofland, “with Carl Jung, speak of “the achievement of death” and view dying as the final creative task of our lives?” A director of spiritual services (what used to be called a chaplain) I met recently in a hospice told me of the tremendous pressure on people to have a “good death.” This immediately evoked for me the pressure on mothers to have a “good” or “natural” birth.

Emphasising that the Happy Death Movement is still forming, Lofland identifies how the movement will make dying better. Firstly, it’s essential to talk about it. For example, the Order of the Good Death, an organisation founded by a Californian mortician, has eight tenets—and three of them concern talking about death

“2. I believe that the culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.

3. I believe that talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.

7. I believe that my family and friends should know my end-of-life wishes, and that I should have the necessary paperwork to back-up those wishes.”

Secondly, death must be rearranged, moved from hospital to hospices and the home. Death in hospital is failure. Thirdly, we must legislate death with advanced decisions and assisted dying.

Lofland also identifies emerging components of the new craft of dying. Expressivity is essential, but it’s also important to not just embrace death, but to celebrate it. (I’ve done this with my talk, delivered once at the Edinburgh Festival, “Death: the upside.”) Finally—and for me surprisingly—the Happy Death Movement wants us to believe in immortality. Lofland describes how Elisabeth Kübler-Ross, who might be called the doyen of the Happy Death Movement and whose hugely influential book On Death and Dying proposed in 1969 the five stages of grief (denial, anger, bargaining, depression, and acceptance), came to believe in immortality. The pursuit of immortality, long a dream and arguably the unique selling point of Christianity, now attracts serious people and serious money. 

The other two components of the emerging craft of dying are expressivity and positivity. Talk and write about your dying and coming death and celebrate your coming death and the death of those you love. New rituals will be needed, and some like “living funerals” are beginning.

Lofland is a sociologist, an academic, an observer, but you feel that she is not in fully sympathy with the Happy Death Movement. Indeed, she conjures the idea of a Dismal Death Movement to counter the Happy Death Movement: “If expressivity comes to be widely accepted as the only way to achieve a decent death, the emotionally reticent will find themselves under great pressure to ‘share.’ If the idea that death and dying provide new opportunities for self-improvement becomes common currency, the chronic under achiever will find himself facing one more opportunity for failure. Not ‘getting off’ on death may become as déclassé as sexual unresponsiveness. Then perhaps, a ‘dismal death’ movement will rise to wipe the smile from the face of death and restore the ‘Grim Reaper’ to his historic place of honor.”

There is a little about medicine and healthcare in Lofland’s book, and nor does the Order of the Good Death have much to say on the subject. But I wonder how much medicine and healthcare—gigantic, well-funded enterprises—might come to fill the need for new ways to die. Ivan Illich certainly argued that that was the case in his book Limits to Medicine, published at about the same time as Lofland’s book. Death “is now that point at which the human organism refuses any further input of treatment…Health, or the autonomous power to cope, has been expropriated down to the last breath. Technical death has won its victory over dying. Mechanical death has conquered and destroyed all other deaths.” Indeed, it is by taking on death that “health care has become a monolithic world religion.”

All those who read Lofland’s book agree that it could have been published in 2018 not 1978 and be equally relevant. The struggle to create a new craft of dying is far from over, and those of us in medicine and heath care have a particular responsibility to think and act on medicine’s role in the struggle. Almost certainly its role should be smaller.

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At this workshop, writing your own obit means analyzing your past — or future

By Liz Mayes

On a Monday evening in September, seven people gather at the Rhizome, a house that has been converted into a community arts space in the District’s Takoma neighborhood. They range in age from late 20s to early 70s, and come from an array of professions — nonprofits, woodworking, think tanks. They’re all here tonight for an unusual writing exercise: one where people — typically of the healthy, non-dying variety — hammer out the text for their own obituaries.

The group’s facilitator is Sarah Farr, 43, a trained death doula who provides companionship and guidance to the dying. In the spring of 2017, she formed Death Positive DC and began hosting regular events: “death cafes,” where people sit around and chat about death, often over cake; and obituary writing workshops like this one. (Death cafes are free or donation based; obituary writing workshops cost $10.) She also operates a Facebook group with about 600 members.

Farr opens the workshop by tracing the history of obituaries in American journalism and outlining their shifting cultural significance through major events such as the AIDS crisis and 9/11. She encourages the group to think about how the advent of social media and memorial websites like Legacy.com have changed the way deaths are reported. (She notes that two-thirds of people who die in America get a Legacy.com page.) She shares examples of funny, viral obituaries — one simply reads, “Doug died” — and dives into the ethics of adult children publishing unflattering obituaries of their parents.

She also brings up the role that race and gender have historically played in the obituary sections of prominent newspapers. She mentions the New York Times project Overlooked, which started in 2018 and features obituaries of women and people of color whom the newspaper neglected to write about when they died. (Entries include journalist and anti-lynching advocate Ida B. Wells, transgender activist Marsha P. Johnson and poet Sylvia Plath.)

Then, educated about obituaries and ready to craft their own, the participants are set loose. They wander to different corners of the house or outside to the porch — and they begin to write.

Obituary writing workshops are part of an expanding suite of events and activities that fall under the umbrella of the “death positive movement.” Based on the belief that cultural avoidance of discussing death is harmful, the movement encourages people to speak more openly about dying. It had been rumbling for several years before it gained a name and solidified into an official movement. In 2011, a man named Jon Underwood — who would later die at age 44 — held his first death cafe in his basement in London. He envisioned the meetings as a refuge from what he saw as a pathologically death-averse culture.

That same year, a mortician named Caitlin Doughty started a popular YouTube channel, “Ask a Mortician,” which she used to spread information about death acceptance and to combat death anxiety. It was Doughty who, in a tweet, coined the term “death positive” as a play on the phrase “sex positive.”

After Underwood and his mother published an online guide for holding death cafes, the idea quickly spread and was enveloped into the growing death positive movement. Since then, according to Death Cafe’s official website, there have been more than 9,700 death cafes held in 66 countries. Anyone can host their own death cafe, as long as they abide by the official guidelines set out by Underwood.

The movement is growing here in Washington as well. Farr has seen attendance at her death cafes rise markedly over the years. Her first death cafe, held in November 2016, saw about 15 attendees. Recently, her meetings have topped out at 50, even in the rain and during the cold winter months. She remembers that just two years ago, there were very few death cafes in the region. Now, the Death Cafe website lists up to four or five per month in the D.C. area.

After about 20 minutes, Farr calls the group back together. Attendees take their seats and Nadia Raikin, 60, volunteers to share what she’s written. As she reads, her dry, cool humor is palpable: “Well. I am dead now. But at least I lived for a while, which is better than nothing.” She pauses to smile as a chuckle goes through the room. “But I’m happy I got to experience life and that my mom, upon blessings of my grandma, decided to keep me. I was born out of a force of nature. I guess I died when nature or God called me back.”

An older man named Chris is next. “Chris lost his life in a car accident on November 1st, 2020, nine days before his birthday. He was 75,” he says as the others listen attentively. Tall with gray hair, he speaks in a gentle, straightforward voice, sketching out the story of life, marriage and work.

“He was a humorous, easygoing man who drank a little too much but never caused any trouble when the drink got the better of him. He always felt intense empathy with the underdogs of the world, which he felt a member of. But he was happy and comfortable with this identity.” He stops reading abruptly and looks up from the page. “Anyway, blah, blah, blah. What did you all think?”

After a few more people share their obits, the group breaks for another round of writing. For the middle-aged and younger participants, writing their own obituaries can be a forward-looking exercise. Jill Eckart, 40, says, “I took it as an opportunity to create what might be possible in the next half of my life. I have about hopefully 45 to 50 more years left. With the end in mind, what do I want that space to look like?”

By now, the sun has set behind the apartment complex across the street. Seated on the old wooden porch, Carter Rawson, 50, speaks of how the impulse to document his life seems to come naturally to him. “I’m biased because I’m a historian,” Rawson says. “I like to read about a life well-lived.” He continues: “I’m not the most interesting person in my family, and I’m never going to be. But if you go to a yard sale and see disembodied old pictures, you wonder what their lives were about. I just felt I would want to do someone the favor of actually giving a narrative — being that one photo that had a story taped to the back of it.”

“I loved it,” Farr says. “I think it could be a great jumping-off place for a memoir.”

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Floating ice urn makes for a unique eco-friendly memorial

This one-of-a-kind urn floats on the water while slowly returning cremated remains to nature.

By Melissa Breyer

As you may have heard, humans have a death problem. It’s not that humans die; it’s that once they do, the still-alive humans of many cultures bury the newly-dead humans in the ground. Given that there are some 7.7 billion of us on the planet currently … well, you can see where this is going. Add in the environmental impact of burying a casket’s sturdy materials and a few gallons of toxic embalming fluid along with it and it’s no wonder that more people are looking into alternative funeral ideas.

There have been some really beautiful, eco-friendly memorial products designed over the last decade or so, like biodegradable urns that use one’s ashes in which to grow a tree. But my jaw dropped when I saw this one, the Flow Ice Urn, which floats on the water while slowly releasing ashes in an unapologetically pure way. It is simple yet beautiful; and it brings to mind other funeral traditions that are intrinsically tied to the idea of returning the body to nature.

And while scattering ashes on a body of water is understandably popular, I love the inherent ceremony in watching an ice urn, and the ashes within, float and gradually dissolve into the sea. It would be just as ephemeral as scattering, but a bit more formal – and just so poetic.

The ice urn was designed by Diane Leclair Bisson, who approached the design with the creativity of an artist and the thoughtfulness an anthropologist. As her website notes, “her research into contemporary burial practices, and the preservation or the scattering of ashes has also engaged her in a reflection about materiality, which has guided the design of a new typology of objects and materials.”

Bisson notes, “The Ice Urn is a deeply sustainable object in its essence. The concept of making a dissolvable memorial object through the transformation of water into a solid form of ice – while encapsulating cremation ashes within it – is truly innovative. It is the most immaterial urn ever created, and it inspires new types of water ceremonies as well as a completely new approach to the idea of burial itself – emphasizing new thinking about the return of the body to the natural environment, and of water back to its original source.”

The Flow was originally designed for Memoria, a progressive funeral home group based in Montreal. But now Biolife, LLC, the developer of other eco-focused urns, has obtained the exclusive license to produce and market the patented ice urn in the United States.

Julia Duchastel, Vice President of Memoria explains that they spent years developing and perfecting the ice urn, noting that is is a proven and patented product that has been well tested tested at their funeral home locations in Montreal.

“Many people form a strong connection with the ocean, lakes, or rivers throughout their lives. Water is a truly extraordinary molecule – it is what makes life on earth possible,” says Duchastel. “Throughout history and across cultures, it has persisted as a symbol of life, renewal, and purity. With this connection to water, many people choose to have their ashes freed in the water after they pass. With the Flow™ ice urn families have a new and improved water burial option to honor a loved one and say goodbye in a more beautiful, meaningful, and memorable way.”

The urn is available at funeral homes; you can see more information on the ice urn page at The Living Urn.

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