Death Trips

Accessorizing the final exit lane

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A friend recently texted me to ask whether he should become a death doula or a hospice volunteer. Turns out he was on the wagon, looking to swap a longtime drinking habit for what he imagined was the more purifying work of looking after the dying. “Attempting self love,” he wrote.

Need someone to “be present” for your final hours? Need music, aromatherapy, reiki? A death doula will, for a fee, swoop into your home and help you navigate the end of your life, from your spiritual needs to the arrangement of the furniture in your sickroom. Awkward, Americanized, consumer-focused forms of Buddhism have long since taken over our exercise (yoga), our offices (mindfulness), and our homes (feng shui). Now, with doula programs popping up like mantras in the mind, they’ve come for our deaths.

I write about death and dying in America, which explains why my friend assumed I’d understand his question—and also how I know that doulas aren’t just some wacky passing fad. For a movement that is supposed to be “alternative,” this one is strikingly in tune with the consensus dogma of the death industry at large. While doulas are not medical professionals, they are experts in the art of arranging a certain kind of death scene. Doula, derived from the Greek, means “woman who serves,” but in the modern iteration, it also means that you, the dying person, won’t be alone for a single minute.

Which is, we’re told, a good thing, since a death without warm bodies is practically taboo. On my trips to various end-of-life care facilities as a reporter or a volunteer, I have heard the same belief over and over again, breathed into my ear by the cooing, pastel-wearing do-gooders who have taken on grieving as their life’s salvational work. What they say is, “No one should have to die alone.” What they mean is that dying alone is a character flaw—an imperfection growing somewhere deep inside of you that, provided it is caught in time, can be rooted out or zapped away.

My Google Alert is “death” (anything for the cause), so this belief is likewise etched into my inbox. “11 Signs You’re Going to Die Alone—and How to Avoid It,” goes a typical headline, turning my weekly digest of death news into a vacuous lifestyle guide, complete with tips for a full-body makeover. If you want to meet the reaper encircled by a team of smiling faces, well then, you had better look sharp. First, give up all your filthy habits, like ordering take-out pizza and spending too much time on Facebook. Then, get rid of your cats.

Or, when the time comes, call in a death doula, who will hold your hand, caress your spirit, and send you a hefty bill. Otherwise, you might end up sprawled out on the floor of your apartment in a pose that is most decidedly not zen: rotting and totally alone, dripping fluids through your downstairs neighbor’s ceiling, until the stench, your final legacy, makes someone notice you at last.

Plague of Lonesomes

The Japanese, adding to their rich and ancient vocabulary of loss, have given it a name: kodokushi, or “lonely death,” meaning the quiet but messy end of a solitary life. With family far away and neighbors respectfully or distractedly distant, a decomposing body can sear its dark shape into the dirty mattress or the floor boards of a home, to be found days, weeks, or even years later.

Dying alone is seen as a character flaw—an imperfection growing somewhere deep inside of you that, provided it is caught in time, can be rooted out or zapped away.

Multiple factors over the past few decades have made Japan ripe for the kodokushi coinage: an astounding 26 percent of the Japanese population is now over the age of sixty-five, the result of a post-war baby boom and a long-declining birth rate. Elders increasingly live longer and live alone, separate from the daughters and daughters-in-law who would once have been their caregivers. And the Japanese economy took a nasty hit in the 1990s (soon after kodokushi first came into use), pushing aging adults out of the work force and relegating them to poverty, isolation, and less respected roles in society.

The plight of Japan’s elders may be extreme, but it is not unique. Most nations of the so-called industrialized West, including the United States, are experiencing their own rapid rise in the elder population, a wave of seniors that some have hailed as the “age boom,” or worse, the “silver tsunami.” The U.S. Administration on Aging predicts that by 2060, 24 percent of Americans will be over the age of sixty-five (compared to just 9.9 percent in 1970).

Americans haven’t yet invented a name for what we fear will happen to all these aging people now that feminism and childlessness and career-driven migration patterns have cracked apart the system of free-of-charge female caregiving that used to keep Ma and Pa comfortably ensconced in the family home.

Instead, we have retreated into our most familiar American idioms. To ward off the specter of elder isolation, we are redoubling our faith in individualism, strangely enough—or more precisely, our conviction that what you choose will be your fate. Bad personal choices get you a lonely death. Good personal choices, on the other hand, get you something like “The Death of Socrates,” that painting by Jacques-Louis David in which attendants throng around the deathbed, contorting their bodies in energetic devotion. (The hemlock may have been bitter, but at least he felt the love.)

Feats of self-improvement are what will put you on the path to a worthy end—and these days, those feats include spending money on the very thing that our new service economy is keenest to offer you: customized experiences. A doula-assisted death is a bespoke affair. Through made-to-order rituals, your death can be propelled into the realm of the unique, just like everyone else’s.

Where There’s a Will

We think we know what failure looks like in our grand meritocracy—obsolescence, uselessness, the wrong consumer choice—and that’s what we imagine a bad death looks like too. But this picture is a product of reverse-engineering; we work backward from the remedies we’re sold. Before swallowing, we might pause to remember something about our innovative market solutions: they have a funny way of floating free of real-world problems.

The command to improve yourself to avoid a lonely death is not just a social media meme; it is the white noise that drowns out our calls to improve end-of-life care in the United States.

Consider the case of the “The Lonely Death of George Bell,” a New York Times feature that ignited readers’ imaginations in 2015 by detailing, with no little melodrama, the solitary end of a man with few friends, no immediate family members, and a longstanding hoarding problem.

While fifty thousand New Yorkers die each year, as N. R. Kleinfield wrote, “A much tinier number die alone in unwatched struggles. No one collects their bodies. No one mourns the conclusion of a life. They are just a name added to the death tables. In the year 2014, George Bell, age 72, was among those names.” Even so, as soon as this macabre tale hit the newspaper, Bell’s death became a metonym for the plight of America’s aging baby boomers.

The first anyone knew of Bell’s death was the smell of his body; the fire department was called to jimmy the door of apartment number 23. He died alone of natural causes in a coffin of his own design, the kind made with half eaten containers of noodles, overflowing ashtrays, strewn dirty laundry, stacks of newspapers, and unopened mail. The Times sent a photographer to document the mess.

It seems clear that we’re meant to see Bell’s fate as a cautionary tale, and a gripping one at that—there is something about a hoarder’s nest, consumerism’s darkest timeline, that never fails to quicken the breath. “This is not some random human interest story,” wrote Bella DePaulo at Psychology Today a few days after Kleinfield’s story ran. “This is a morality tale, a scare story aimed directly at anyone who would dare to live single and live alone.” DePaulo takes Kleinfield’s story as an indictment of all the single ladies (and men) out there—who, perhaps like George Bell, step off the approved path of coupled-up reproduction and then continue to quietly, defiantly exist, until one day they don’t.

We’re supposed to shudder, as the dead no longer can, and then we’re supposed to shape up. But in my mind, it is not the failings of the life that are instructive, but the misdirections of the article itself. In the host of unsightly administrative tasks that followed Bell’s death—not what Emily Dickinson called “The Sweeping up the Heart / And putting Love away,” but the work of burying Bell’s body, cleaning out his apartment, trying to notify any next of kin—Kleinfield found a pathos that verged on the universal. For my part, I saw errors of omission.

Bell, you see, was not a typical isolated elder: he was a man embarking on his eighth decade on earth with several hundred thousand dollars in the bank. And Kleinfield’s story for the Times, while stuffed with poignant details, was, in the end, less a profile of a squandered life than a classic journalistic game of follow the money, in the form of a hunt for Bell’s lucky and unsuspecting heirs.

By contrast, 45 percent of those over sixty-five living alone are poor (below 200 percent of the poverty level). Fifty-seven percent of those over eighty are poor. Hispanics (68 percent) and blacks (60 percent) have it even worse. If we were to take the time to dramatize the deaths of any one of these nameless people, the follow-the-money line of inquiry would be laughably easy, and painfully short: there is none.

Good Endings for Sale

“The Lonely Death of George Bell” is just one example of how colossally we can miss the point when we try to sensationalize or pathologize a trend—living and dying alone—that is as deeply rooted in our social institutions as it is in any personal failing or individual aberrance of the mind.

Lots of people live alone as they get older, and most of them won’t end up like Bell. His was a story worth telling, but it is not the whole story of how “bad” and “death” now overlap. If we’re looking for a problem that is quintessentially American, there is really only one that every aging person shares: we all face a health industry—and by default, a death industry—that treats patients as purchasers. Forget the crazy cat ladies and the scary hoarders and all the other reductive stereotypes that get trotted out to prompt a shiver of “There but for the grace of God go I.” Here’s a fable that should really chill our veins: in a country of mind-boggling wealth, health outcomes are as divergent as our incomes, professional care is held hostage by profit, and more often than not, the kind of death you get is the best one you can buy.

The command to improve yourself to avoid a lonely death is not just a social media meme; it is the white noise that drowns out our calls to improve end-of-life care in the United States. It masks the real challenges that some elders face by diverting attention to self-betterment—and away from systemic issues like poverty, racial and gender disparity, lack of caregiver resources, and a health care system that saves its best for those who can pay top dollar.

The tale of this diversion is written in the history of American hospice. Once an “antiestablishment, largely volunteer movement advocating a gentle death as an alternative to the medicalized death many people had come to dread,” wrote Robin Marantz Henig in the New York Times in 2005, hospice has become an institutionalized program that has lost sight of some of its clear, early objective: to provide comfort and pain relief for all dying patients.

While more than two-thirds of those who die each year are enrolled in hospice, few stick around long enough to benefit from the program. Hospice is available to patients for the last six months of their lives, but in 2014, the average length of service was about seventy-one days; the median was about seventeen days. That’s a whole lot of people not getting what hospice was made for: quality pain relief away from the anxiety of a crisis-ready hospital room. And hospice has stubbornly remained a white people service: in 2014 only 7.6 percent were black (though they are more than 13 percent of the total population); only 7.1 percent were Hispanic (17 percent of the total population).

The more money and education a patient has, the better the chance she is enrolled in hospice care—and the better the chance she will die at home, something that most Americans say they would like to do. Which means that the stories we tell ourselves about the great benefits of hospice care are only half true; a system meant to care for all Americans doesn’t really reach them all.

There are a host of reasons for this low use overall, and for underuse by minorities and the poor: Doctors aren’t always trained to give terminal diagnoses, or they don’t talk to elders about hospice care until it is too late; there’s a lack of early detection and diagnosis among minorities and the poor, often because of inadequate health care; and our medical industry has focused on (earning oodles of money from) curing diseases, not preparing patients for their deaths. Cultural differences that frame hospice enrollment as giving up, not fighting the good fight, are also a factor. Still, with the elder population doubling in the next few decades, the program seems woefully unprepared for the future—and particularly for those groups that have traditionally remained outside its scope. Like all of health care (and so many of our social systems) hospice is a system in which racial and economic inequalities are deeply embedded.

It is an odd interlude for a much-loved program that is powered in part by hundreds of thousands of well-meaning volunteers—430,000 hospice volunteers nationwide, to be exact. In 1984, when Congress decided to cover hospice with Medicare and Medicaid funding, volunteerism was baked into the financial formula, for the sake of a leaner budget. Thirty years later, volunteers are still essential. Hospice couldn’t run without them.

Soul Calisthenics

Maybe this is all just a long way of saying that when my friend texted me with his momentous question—death doula or hospice volunteer?—I wasn’t ready with a snappy reply. If anything, it got me thinking about how working as a hospice volunteer is kind of like the new AA. It draws in people who are seeking to find themselves or, as my friend put it, “attempting self-love.” I don’t mean this as a knock on my friend. After all, there aren’t enough hospice volunteers to go around and he’s a good person. But the transactional ethos that infects all forms of volunteering starts to sound a bit facetious when you apply it to death-watching: It won’t be fun but it will get you into spiritual shape.

Need someone to “be present” for your final hours? Need music, aromatherapy, reiki? A death doula will, for a fee, swoop into your home and help.

As for the death doulas, the promise of self-actualization they extend to others tends to rebound on them in an even trickier way—one that hints at how circular and Sisyphean our market-approved quests for self-improvement really are.

The International End of Life Doula Association (INELDA) will host twelve trainings this year for hopeful trainees. “BE A PART OF THE MOVEMENT,” the ad copy urges. Over two and a half days in a Hilton or Embassy Suites conference room, attendees will take the first steps toward becoming Certified End-of-Life Doulas (CD) or Certified Advanced Doulas (CAD). Don’t forget your check for $600, plus $100 for the annual membership fee.

Henry Fersko-Weiss, INELDA’s executive director, claims that his end-of-life doula program, which he founded in 2003, was the first in the United States. As a licensed social worker, he has managed social services at a number of hospice programs (including the one where I did my own hospice training in 2008; I’ve never met him).

Fersko-Weiss isn’t the only trainer in town, however. Not only is the doula discipline rife with competing philosophies (along with the implicit belief that there is, of course, just one way to die), but it is led by competing gurus (often male) who oversee their practice with a heavy Eastern flair and a dash of mysticism.

“How we show up for the dying is how we show up in our own lives; it’s how we show up in each moment and how we walk in the world,” said Bodhi Be, a doula trainer and founder of Doorway Into Light, in a promotional video for his April training in Hawaii. The training, “Showing Up for Death, Nourishing the World,” cost $950, not including hotel, airfare, and most transportation and meals. Presenters included Ram Dass, the former “Harvard psychologist and psychedelic pioneer” who went to India and never came back, and Prakash Mackay, a “Diamond Approach teacher in the Ridhwan School for Self Realization.” (I don’t know either.)

There’s also Doulagivers, “the new specialized area of non-medical health care for the elderly,” founded by nurse Suzanne O’Brien, which offers online courses and a training certification program that costs $1,997. Under the fee, the site reads: “Time Magazine just named End of Life Doulas as one of the top seven new professions in 2017. This independent practice makes $40,000–$70,000 dollars annually. This is the new specialized area of non-medical health care.” (The Time magazine article referred to is titled, “7 New Jobs That Are So ‘2017.’” The other six “new professions” are definitely worth noting: simulated astronaut, YouTube Sex Ed teacher, vegan butcher, professional activist, bug bounty hunter, and compost collector. It’s clear from the introduction that Time’s tongue is at least partially in its cheek.)

The self-improvement INELDA and these other programs promise to doulas-in-training is overt—and indeed is used as a promotional tool. The few trainees I’ve spoken to, all women, see being a doula as a new career opportunity; the training is an investment in their happiness, life satisfaction, and financial future.

Susie, who I met up with last year in Brooklyn, went through doula training after a series of personal tragedies. She was looking for a new way to make a living after a successful career as a photographer. Jane, put in touch with me by the friend of a friend, had worked as a nurse during the height of the AIDS epidemic and saw doula training as a possible way to return to that work. She was watching her father approach death and thought that she could care for him better as a trained doula—and again make a difference in the lives of the dying. A new profession that incorporates financial security and doing good is powerfully appealing to many of these women—and, I might add, sanctifying.

My book on end-of-life care came out last year, and since then I’ve fielded countless inquiries from women who want to know what the best doula training program is—but not once have I had a patient ask me where to find a good doula, forget the cost. By contrast, I could start a side career of matching home health aides—who are often women of color who earn a pittance of cash under the table to do the dirtiest work there is, cleaning, feeding, and medicating the dying—with friends’ aging parents. Jessica Mitford, the acerbic writer of the 1963 takedown of the funeral industry, The American Way of Death, warned us against those who would prey on grieving elders and their families. Similar advice might now be directed at the self-bettering, soul-searching aspirants who want to care for them.

In any case, I will tell you this: Sidling up to a magical dying person is not as life-improving as the doula gurus make it sound. If there is meaning there, it’s shifty. Hanging out with the nearly departed has taught me that when we dabble in the dark art of vicarious dying, we often make the wrong assumptions about the needs of the people we’re there to attend. It’s hard to find a deathbed that isn’t shrouded in projections.

Most every nurse or hospice worker can tell you about one particular death bed phenomenon: patients very often die the very minute their loved ones have stepped out of the room. Lizzy Miles wrote about it at PalliMed, one of my favorite hospice and palliative medicine blogs, last year:

This may be an unpopular assertion within my own hospice industry for me to advocate for leaving a patient alone sometimes. Hospices have entire programs devoted to assuring patients and families that they will not ever be alone. Many of them are actually called, “No one dies alone” or NODA. The perhaps unintended consequences of the marketing of these programs is the programs may perpetuate the myth for the public that nobody ever wants to die alone.

Maybe, just maybe, dying patients really don’t mind slipping out the door by themselves, kissing sweet earth goodbye without getting kisses back, riding off into the sunset without a sidekick. Maybe the directive we take as bedrock wisdom—“No one should die alone”—is just another flimsy old saw, like “Death is the great equalizer.” That one, at least, we can lay to rest for the time being: as it stands, there is nothing equitable about dying in America.

This story was produced with support from the Economic Hardship Reporting Project, a nonprofit devoted to journalism about inequality and its Puffin Story Innovation Fund.

Ann Neumann, a visiting scholar at the Center for Religion and Media at NYU and a nonfiction editor at Guernica magazine, published her first book, The Good Death, in 2016.

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