How Death Became Big Business

Instead of caring for the elderly, corporate interests in elder and hospice care are looking out for their bottom line.

Illustration by Max Guther

Googling “nursing home neglect lawsuit” will make your stomach churn. Deanna Kay Mahoney died of sepsis in a hospital in Des Moines, Iowa, after her bedsores were allegedly left untended for so long that they became infected. John Curtright of Kansas City, Kansas, died of the same thing, and he was apparently displaying signs of malnourishment by the time his daughter checked him out of his nursing home to bring him to a nearby emergency room.

Across several facilities in New York State, human waste and discarded food trays left to fester in residents’ rooms reportedly triggered a rat problem. Mary Jo Staub froze to death after wandering out of her facility in Louisville, Kentucky, and being unable to regain entry. A resident in McHenry, Illinois, claimed his neck was fractured after he was dropped on the floor by a worker who’d been forced to lift patients alone thanks to short staffing.

These are a mere fraction of the nursing home deaths ascribable to profit-driven corner cutting: one Associated Press analysis pinned some forty thousand deaths on neglect in nursing homes in the first year of the COVID-19 pandemic, not counting the staggering number of fatalities from the virus itself. In the years since, the sector received a no-strings-attached nine-figure federal windfall, allocating at least some of it to fighting tooth and nail against reforms like improved staffing ratios that could’ve made every one of those atrocities less likely to happen.

Lorded over by cartoonishly bad actors who set out to line investors’ pockets with as much public money as humanly possible, the depravity of institutional long-term care is a manifestation of the monetization of aging and dying in the United States, now a booming business. Nursing homes, home care, and even hospice have been largely captured by for-profit firms, which stand to bilk just as much revenue as the other players in our for-profit health care system — but without nearly as many regulatory impediments. For patients and their loved ones, the corporatization of elder- and disability care makes the most vulnerable part of life even more painful than it has to be.

As historian Gabe Winant recounts in his book The Next Shift: The Fall of Industry and the Rise of Health Care in Rust Belt America, much of the corporatization of health care — and of warehousing people in nursing homes specifically — emerged as a response to the social trauma of deindustrialization. Before the mid-twentieth century, eldercare was generally done by unpaid women in the home, who often toiled doing care work for three generations at once while their husbands performed wage labor in the manufacturing sector. When the boom began its long decline in the 1950s, it followed a reliable pattern. Steel bosses first tried to maintain profits by pushing workers harder, chipping away at wages and benefits, which drove stress, injuries, and precarity, and the industry eventually started shedding workers along racial lines. Because black workers with less security to fall back on were let go first, their wives were the first to seek paid work outside the home — and they often found jobs in health care, a sector that had swelled thanks to union health plans and federal hospital construction.

As deindustrialization left communities older and sicker, with fewer female partners at home and available for unpaid caregiving, Medicare and Medicaid swooped in to fill the void. The latter came with a long-term institutional care benefit, which served an obvious need for the poorer and sicker people who were eligible for the program. Upon the advent of Medicaid in 1965, the number of people in US nursing home facilities doubled in only eight years, while new Medicare enrollees fueled a parallel growth in community hospital use. From there, though, the payment model pathways diverged. With neoliberal grumbling about runaway health care costs in the late 1970s and early ’80s, Medicare Part A shifted toward a fee-for-service model. Reorganizing payments by diagnosis, rather than a flat daily fee, encouraged hospitals to discharge patients as soon as possible. It also gave a major leg up to capital-intensive procedures and the flush, creditworthy hospitals that could buy up MRI machines and their own competitors. These moves, of course, expanded both their market share and their leverage to dictate prices, helping to drive the toxic dynamics most commonly associated with the US health care system today, like soaring costs and medical bankruptcy.

Meanwhile, the trajectory of nursing home care would play out very differently. The Medicaid long-term care benefit continued to pay a daily fee per nursing home resident, and aspiring bigwig nursing home tycoons had different incentives than the hospital executives did. Whereas the path toward endless growth for hospitals is through doubling down on big-ticket specialty care, professional prestige, and name-brand pedigree, cashing in on nursing homes is mostly just a matter of patient volume and cost cutting, with all but disposable patients and workers bearing the brunt of the misery that entails.

What that looks like in practice is nothing short of gruesome. In an industry that’s 70 percent for-profit, nonessentials are ruthlessly cut. A recent New Yorker exposé recounted how, when a previously nonprofit nursing home was purchased by a private equity firm, the new bosses got rid of an aquarium in the common room, arts and crafts, and several menu items — with ownership changes, “the food always gets worse,” as one worker-organizer told me. They shuttered the dining hall and laid off the kitchen staff, packaging meals individually for residents to eat alone in their rooms. New management is notoriously slow to repair things like microwaves or to change lightbulbs. Even the bedsheets get crappier.

More gravely, profit-hungry owners find extra cash by squeezing their workers every way that they can, cutting staff to the bone. Depending on the state, one certified nursing assistant (CNA) can be responsible for dozens of residents at once. They’re constantly triaging — darting from room to room to handle the most pressing emergencies — so hours might go by before someone is available to clean up human waste. Residents are bathed less frequently and incur more injuries. And opportunities for joyful moments disappear. When working conditions are better, “you can preserve some dignity and quality of life for folks,” one health care union leader told me. “You can chat with Mrs Jones and, you know, curl her hair or paint her nails. You can spend twenty minutes watching a football game with Mr Johnson. You could have a sense of community, and have the kinds of deep relationships between workers and residents that do a lot for quality of life.” But only the oldest CNAs have memories of their jobs being anything like that. For most of those in the position now, things have gone from bad to worse.

And that was before COVID-19 hit. From there, the story is familiar, having played out in grim news stories across the country. Nursing homes fared dismally, particularly early on in the pandemic, accounting for around 40 percent of US COVID deaths in the first year. The combination of a warehoused, demographically vulnerable population, an industry with little regard for their well-being, a workforce so exploited that workers traveled between multiple jobs to make ends meet, and insufficient infection-control measures proved deadly. It shouldn’t surprise anyone that the most egregious players in the business were also the most dangerous places to be, even when you adjust for everything else — private equity–owned facilities had 10 percent more fatalities relative to their peers, whereas unionized facilities had 30 percent fewer. Even amid the carnage, private equity companies saw an opportunity, buying up dozens of new facilities as the virus ripped through them.

Having thoroughly saturated the provision of institutional nursing care, it only makes sense that entrepreneurs have recently moved on to hospice care, also run for profit at a rate of roughly 70 percent. Here private corporations subsist nearly entirely on public funds — in this case, the Medicare hospice benefit, which, like Medicaid’s nursing home funding, pays providers a flat daily rate. In a joint exposé from ProPublica and the New Yorker, journalist Ava Kofman described how the recent spike in for-profit hospice operators has played out: beyond the same old tricks used in nursing homes and elsewhere (spreading staff thin, exploiting workers, cheaping out on supplies, saddling assets with the debt it took to buy them), the structure of the industry has given rise to what feels more or less like a morbid scam.

Since the hospice care payout is supposed to support people diagnosed with a terminal illness (defined as those with no more than six months to live), the rising for-profit hospice sector has cashed in on scooping up more and more clients — whether they’re actually dying or not. Whistleblowing hospice workers have described how their bosses scouted out doctors with loosey-goosey definitions of what constitutes “terminal” or “less than six months to live,” with some even scanning church prayer bulletins for extra sick new enrollees to balance out their averages. Once a company has too many long-duration enrollees on the books, it can simply “fire” patients who remain stubbornly alive, or insist that it’s just as surprised as regulators that its clients aren’t dying as imminently as it believed they would. After all, if making those determinations is more of an art than a science, is it really a for-profit hospice operator’s fault that things keep panning out in its favor?

It’s worth emphasizing how damn emotionally manipulative this is: a service intended to support patients and their families through one of the most intense, draining, and painful parts of their lives has been morphed into a game of book cooking, all for six months of Medicare revenue. For patients who aren’t actually dying, getting unceremoniously dropped after half a year in hospice must range from disorienting to frightening. For those who are in fact dying, the dissonance between how hospice is described and how it really works can be upsetting, too: when it works the way it’s supposed to, it can be the gentlest way to suffer through a terrible thing. When it doesn’t — when home hospice lacks sufficient staff, palliative intervention, or training — family members can feel abandoned and overwhelmed, completing basic care tasks or administering pain medication themselves outside of brief agency visits.

It should disturb every one of us that any for-profit entity, let alone the private equity firms bullishly buying up whatever they can, is so interested in this sector to begin with. If the basic pitch of private equity firms is that they’ve perfected the art of short-term profits, it’s worth asking where exactly endless productivity growth in a field dedicated to the needs of dying people and their families is supposed to come from. Unlike hospitals and factories, nursing homes and hospice agencies don’t have as much room to invest in more efficient machines or jack up their prices. To keep hitting their targets with flat fees from public coffers, the options are limited: spreading workers thinner, dreaming up new ways to make patient subsistence still cheaper, increasing volume by consolidation or lying, and lobbying for public policies even more amenable to profitmaking. As shareholders demand quarter after quarter after quarter of profits, it’s only going to get worse. The low- and middle-hanging fruit is already gone.

We deserve to die in ways that are less mediated by capitalism. Most of us inevitably want similar things, even if the specific details are different: at the end of our lives, we want as many opportunities for joy as we can get. We want to be part of meaningful communities. We want to be cared for, respected, and valued. And we want the people surrounding us — both our loved ones and the workers serving us through our most vulnerable moments — to be cared for, respected, and valued, too.

But far too often, the for-profit death industry makes all that impossible. What we deserve in its place is universal, supportive, socialized care at the end of our lives, to each according to his or her needs. And those services should be delivered in appropriate community settings, by people with enough control over their working conditions to insist that care includes chitchat and board games, and who can afford to stick with one job long enough to become close to patients and their families.

This is the kind of intimacy and dignity we owe the sick and elderly. Good care — within the health care system and outside of it — is resource intensive, and it will never be particularly profitable. We need to build a system that sustains it anyway.