6 The Nation. April 6, 2020Traumatic Care
The bureaucratic burden placed on patients has been ignored for far too long.
I
n 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 tod-
dler’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 under-
stands 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 insur-
ance 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 inter-
vention 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 over-
whelmed 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 un imagin able anywhere, but
forcing grieving parents to navigate the health insurance bureau-
cracy 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 pro-
viders, 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 suc-
cinctly put it, “The bills are their own trauma.”
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 bat-
tling insurers. That’s something that reform proposals relying on a
public option can’t do. The US health care system is financed by mul-
tiple payers, most of which operate as for-profit companies and nego-
tiate payments with providers. As costs rise, insurers have protected
their bottom lines by shifting costs onto patients through ever-risingcopayments 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 un expect ed 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 surpris-
ingly unstudied. Perhaps in a system plagued by so many
shocking statistics—our costs, mortality rates, and levels
of debt and uninsurance are anomalously high rela-
tive 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 pre authoriz a tions and, after they were too ex-
hausted 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 interac-
tions 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 dra-
matically 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. QNatalie Shure is the head of research for Adam Ruins Everything on
TruTV. She writes about health, history, and politics for a variety of outlets.Natalie Shure