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In late 2010 a car struck Michelle DuBarry’s 22-month-old son, Seamus, in a crosswalk in Portland, Oregon. After two surgeries and a night in the pediatric intensive care unit, he died.
Soon, the bills started coming. They arrived from the hospital and DuBarry’s insurer, each itemizing fragments of her toddler’s care—anesthesiologists, emergency room physicians, trauma surgeons, orthopedists, intensivists, lab tests, and the ambulance—each accompanied by amounts charged by the hospital or paid by her insurance company. The numbers didn’t always match.
“I think anyone who’s been through something like that understands that you’re not really high functioning in the aftermath of a tragedy,” DuBarry told me by phone. “So to start getting the bills was just really bewildering…. You have to sort through this mountain of paperwork and try to understand what you’re responsible for paying, what your insurance company is responsible for paying—and if there’s anything the insurance company doesn’t want to pay for, they just don’t.”
Even worse than deciphering the math, though, was what the bills evoked. Every one of the technical terms listed in the paperwork corresponded to a medical intervention performed on her son’s tiny body, and decoding the items meant anguishing over each one. One bill contained a charge for a “chest tube.” DuBarry felt overwhelmed by guilt: She didn’t know what a chest tube was and didn’t know Seamus had even had one. She’d been so focused on his severe brain trauma that she’d barely considered the rest of his body; now her insurance company left her no choice. Had it hurt? Where had it been inserted? How had she been so inattentive? “Looking at that bill brought me back to a place of complete, blinding panic,” she said. “And then having to get on the phone and ask the insurance company why they won’t cover it… it’s just terrifying.”
The pain of losing a child is almost unimaginable anywhere, but forcing grieving parents to navigate the health insurance bureaucracy under threat of financial ruin is uniquely American. No one should have to feel like that, and DuBarry wouldn’t have had to if it hadn’t been for the damn bills.
Health care reform has dominated the Democratic primary race, but the debates have focused mainly on the choice of plans and providers, access to care, and medical debt. When administrative bloat comes up, it’s usually to point to the immense costs of processing claims. Too often the emotionally draining bureaucratic burden placed on patients and their families is overlooked. As DuBarry succinctly put it, “The bills are their own trauma.”
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A single-payer Medicare for All system would streamline the costs of health care administration—topping $1 trillion annually, according to a recent estimate—and would also alleviate the headache of battling insurers. That’s something that reform proposals relying on a public option can’t do. The US health care system is financed by multiple payers, most of which operate as for-profit companies and negotiate payments with providers. As costs rise, insurers have protected their bottom lines by shifting costs onto patients through ever-rising copayments and deductibles and by narrowing provider networks to limit patient choice. One inevitable result has been the growth of so-called surprise billing: charges from out-of-network doctors at in-network hospitals. Patients get whacked with unexpected bills for any number of reasons—deductibles higher than their bank account balances, confusing fine print, disagreements over necessary care, and human error. Crucially, adding a public option to an already dizzying array of insurance options would do nothing to disrupt this dynamic. The fragmentation of our health care system (which “Medicare for All who want it” would retain) is the very reason for such excessive billing. You can’t have a system with so many cracks serving hundreds of millions of people and expect none of them to fall in.
However intensely scrutinized the US health care system has been, the strain of navigating billing has been surprisingly unstudied. Perhaps in a system plagued by so many shocking statistics—our costs, mortality rates, and levels of debt and uninsurance are anomalously high relative to other developed countries—the exasperation of squabbling with insurance companies strikes researchers as petty. But that’s not how patients experience it. Over the years, people have told me stories about sobbing on the phone with claims adjusters countless times. I’ve heard patients describe breakdowns at pharmacies over insurance preauthorizations and, after they were too exhausted to keep trying, damaged credit scores. Disability activist and wheelchair user Colleen Flanagan recalled that some of her earliest memories are of her mother crying as she pleaded with insurance companies for her daughter’s care; today Flanagan schedules time every week to do the same thing. “You have to start from the very beginning every single time to explain what the situation is,” she said. “It’s just a terrible reminder of how people are making money off of me telling the same story over and over again just so I can get access to a working wheelchair.”
Such individualized frustration and anger define people’s interactions with social systems, argue Georgetown public policy professors Donald Moynihan and Pamela Herd in their book Administrative Burden. “In our current health care system, even if you expand it dramatically but leave the basic design as is…it still leaves users dealing with a system embedded with hassles in a way their peers in other rich countries simply can’t relate to,” Moynihan told me. In other words, its functionality depends on hours of unpaid work finagling over charges foisted onto patients and family members, often in times of extreme stress and illness. “This is an extraordinary hidden cost in the American health care system,” he said. “We don’t take into account the degree to which it shoves a lot of psychological costs onto its users in a way that other countries have not.”
It’s time we assess those costs. The elimination of medical bills that Medicare for All promises would represent not just a financial relief but also a psychological one.
