Of course patients should know costs — so that they can be outraged enough to demand change.
The real elephant in the room isn't "should they know?" but "why do patients, communities, and elected officials allow medical money machines – i.e., the hospital corporations — get away with pirate costs on even the smallest items?"
Time to go back to regulation. Better yet, Medicare for ALL.
THE PROBLEM WITH KNOWING HOW MUCH YOUR HEALTH CARE COSTS
Two months ago, I moved into a new apartment. On the first night, in the dark, I tripped and fell. It felt like I had badly scraped my shoulder, but when I looked in the mirror there was no torn skin—my collarbone was simply jutting at a new, funny angle. When I tried to push it back into place, I got nauseated, so I decided to try to sleep. I’ll wake up soon, I thought, and just pretend this never happened.
When that didn’t work, I Googled “rotator cuff tear” and “asymmetric shoulder.” It seemed like a benign possibility; lots of people with rotator-cuff tears lead healthy and productive lives. No luck. I called my mom, who happened to be visiting for the night and was at a hotel two blocks away (and who, like me, happens to be a cardiologist). When she arrived, we made a video of my shoulder to send to my orthopedist cousin for a diagnosis—a clever idea except for the fact that he was sound asleep. Our delay tactics exhausted, we faced the inevitable: I needed to go to the emergency room.
Next thing I knew, I was standing with my pokey shoulder in front of an X-ray machine. My mother called out to me from the radiology reading room: “You broke your clavicle.”
“O.K.,” I called back.
After being diagnosed, the rational next step would have been to turn my attention toward treatment. Instead, when two additional X-rays were taken, an orthopedist was called to review the films, and two slings were provided instead of one, I wasn’t thinking about what I needed to do to get better. I was doing arithmetic: How much was all of this going to cost?
“You’re so tough,” my mom said, when I refused, for about the fifth time, to even take a Tylenol.
“It’s not that,” I said. I waited until the nice doctor walked away and whispered, “Did you not hear about the toothbrush?”
The thousand-dollar toothbrush, to which I was referring, had first gained notoriety in 2010, when featured, among other absurdities like twenty-three-dollar alcohol pads and fifty-three-dollar disposable gloves, in a CNN special on exorbitant health-care pricing. Three years later, the buzz around said toothbrush grew when the New York Timesreporter Tina Rosenberg published a widely circulated piece called “The Cure for the $1,000 Toothbrush,” which described how the lack of price transparency in health care contributes to its exorbitant costs, and financial ruin for many Americans. Those pieces, along with Elizabeth Rosenthal’s five-part Times series and Steven Brill’s twenty-eight-page Time cover story, “Bitter Pill: Why Medical Bills are Killing Us,” have made the lack of price transparency in health care an intensely debated topic for both policymakers and the public. And it’s why sitting perfectly still to avoid pain made more sense to me than accepting a Tylenol, which I feared would cost me a hundred times more than what I would pay at the CVS next door.
The obvious antidote to price opacity is price transparency, but such transparency may have a range of effects, depending on where it is applied in the many layers of health-care delivery. For instance, there is emerging evidence that when hospitals publish prices for surgical procedures, costs decrease without a loss of quality. The Surgery Center of Oklahoma, for example, has been publishing its prices for various procedures for the past four years. Because the center’s prices tend to be lower than those of other hospitals, patients started coming from all over the country for treatment. In order to compete, other hospitals in Oklahoma began listing surgical prices; patients were able to comparison shop, and hospitals lowered their prices.
The calls for price transparency, though, have now moved beyond the hospital walls. Intwo recent opinion pieces, Peter Ubel and colleagues argue that doctors ought to directly disclose to patients the costs of recommended treatments. Out-of-pocket costs, they argue, can “cause more distress in patients’ lives than many medical side effects, and patients can decide whether any of the downsides of treatment are justified by the benefits.”
We must find better ways to make affordable, high-quality health care available to everyone. But is injecting price transparency into the patient-doctor dynamic by asking patients to consider costs a step toward achieving those aims? Or will we end up hurting most those we are trying to help?
The first problem with financial disclosure from doctor to patient is a practical one. Doctors rarely know how much their patients actually pay. Patients are covered by a variety of insurers, all of whom offer several plans, for which any individual patient has a different copayment and deductible, which he may or may not have met.
Let’s say, though, with a click of a button, a patient’s out-of-pocket costs for any given recommendation are readily available to both doctor and patient. There will be some situations for which two treatments with similar risk-benefit profiles exist, but costs are clearly divergent. Patients with systemic lupus, for example, often choose between two drugs, Imuran and CellCept; the benefits and risks of the drugs are similar, but the latter costs ten times as much. Under these circumstances, asking a patient to consider price in their choices seems wise.
But many common clinical scenarios are more complicated. Take heart-attack treatment, for which, Ubel and colleagues note, costs can approach forty thousand dollars per year. (The report from which the figure is derived actually suggests a range of three thousand dollars to forty thousand dollars, depending on the plan.) Heart-attack care typically begins when a patient comes to the emergency room with chest pain. A stent procedure to open a blocked artery is often life-saving, but only if done quickly. The longer you wait, the more heart muscle dies.
During my cardiology training, it was my job to describe the benefits and risks of this procedure to patients, and ask them to sign consent forms. I went over each risk in painstaking, non-jargon-y detail. You quickly learn, though, that certain risks are far more disturbing than others. Say “kidney damage,” which, while unlikely, is one of the more common complications, and most people seem relatively unfazed. Say “limb loss,” however—which, while possible, is unbelievably rare—and people panic. In weighing risks and benefits in these situations, it’s not the likelihood of the risk that matters but the ease of imagining it.
Now consider this same scenario and add to the list of potential risks, “Full disclosure: this might cost you as much as forty thousand dollars.” All of a sudden you have injected into a litany of the unfamiliar a “risk” that could not be more familiar: money. Who would not fixate upon this cost information in making medical decisions?
It’s also hard to quantify and convincingly describe the long-term costs of not getting treatment. So while it may be possible to tell someone the cost of a stent procedure, it will always be much more difficult to put a price on not getting the stent—which often includes frequent hospitalizations for heart failure, complicated medical regimens requiring intensive lab monitoring, devices to help the heart pump more efficiently, and sometimes even a heart transplant.
Everyone is prone to fixating on risks that come readily to mind while discounting those that may occur in the future. But the tendency to err in these predictable ways is magnified by how poor we feel in the first place. In their recently published book, “Scarcity,” the behavioral economist Sendhil Mullainathan and the cognitive psychologist Eldar Shafir describe the psychological consequences of feeling like you don’t have enough. The fundamental theme of the book is that scarcity, whether it’s from lack of money, time, or even human connection, “captures” the mind, depleting our mental reserves and giving us tunnel vision. As anyone on a deadline knows, such a mind-set can enhance focus and creativity. But more often, the feeling of scarcity, no matter its cause, leaves us more prone to making cognitive errors.
In one of the experiments described in the book, the authors asked people in a mall to consider hypothetical situations involving payments for a car repair. The subjects then completed tests for intelligence and impulse control. In the first scenario, subjects were asked to consider a relatively inexpensive car repair; afterward, there was little difference between high- and low-income participants on the intelligence tests. In the second scenario, however, the cost of fixing the car increases tenfold. When the same people repeated the tests, suddenly the poor fared far worse—the difference was akin to a thirteen-point drop in I.Q.
Based on this experiment and several others, the authors argue that the feeling of scarcity consumes the mind, causing us to behave in ways that are often attributed to personality, but may actually have more to do with context. No one, they argue, is immune.
I lead an undeniably privileged life, but the day I broke my clavicle, I was experiencing my own sense of scarcity. I had just moved, so I had spent lots of money all at once: the first and last month’s rent, cable and other utilities, and, most salient in my mind, a big wad of cash I had handed to the movers a few hours before the big break. And so I tunnelled. That’s why, after leaving the emergency room, while my mother read about treatment and recovery time for broken clavicles, I was frantically trying to understand my high-deductible health-savings-account insurance plan, unwilling to commit to further care until I knew how much I would pay. When it became clear that I would need surgery, and soon, as my mother tried to explain the various options—a big metal plate and screws versus a new technique, which would look better—I stopped listening after hearing the word “new” because “new,” in my mind, only heralded more expensive.
When I emerged from surgery a couple of days later, with the large, visible metal plate, I was delirious from the anesthesia, my heart rate was low, and my oxygen levels were falling. My surgeon insisted that I be admitted to the hospital overnight for monitoring and pain control. Though it was hard to remember to take deep breaths, it was not hard to remember that an overnight stay would cost thousands of dollars more than same-day care. “Take me home now,” I said to my mother.
Not surprisingly, I lost that battle. But in every other way, I won. I received outstanding care from a surgeon who is an expert in his field, ended up having far better insurance than I had initially understood, and have a mother who put her own life on hold to take care of me for a week. Though I will need a second surgery to take the metal plate out—which I wish I had thought about before—it feels like a win because rather than waiting two years, which was my surgeon’s initial estimate, I now have to wait only six months. But, most of all, I won because whatever scarcity had captured my mind was only temporary. For most people, it isn’t.
Transparency, as a concept, has tremendous visceral appeal. How can more information not be better? But information is not knowledge, and efforts to bring transparency to health care have previously failed, or caused unintended harm.
Millions of dollars, for example, have been invested getting restaurants to post calorie counts. Despite the fact that there is no evidence to suggest that these labels have decreased calorie consumption, and even some concern that low-income consumers may choose higher-calorie items, the Affordable Care Act mandates this approach for large restaurant chains. Another failed transparency effort, launched in New York State, involved using “report cards” to publish cardiac surgeons’ performance so that consumers would have better information. In this case, it was physician behavior that changed: the sickest patients, more likely to die and thus reflect poorly on the physicians’ performance, were increasingly turned away. Racial and ethnic disparities, which continue to plague all of health care, worsened.
In the weeks after surgery, stymied by dictation software and limited in what I could do, I spent a lot of time slowly wandering around New York City. In the same way that I had fixated on beautiful hair during times in my life when I had a regrettable haircut, I became enchanted by the loveliness of the clavicle—its symmetry and the amazing way it curves, which is unlike any other bone. But I also started noticing all the people who were broken—in slings like me, or limping along in awkward orthopedic shoes—a whole outbreak of hardship I had previously failed to register. One woman, when our paths crossed early one morning in Central Park, was wearing a sling just like mine. She smiled at me sympathetically and shook her head. “There’s a whole lot of that going around,” she said.
I wondered, but didn’t ask: Did she feel that she had enough to invest in getting fixed? Or was she still hoping, as I had so briefly, that with a little luck, she would mend?
Lisa Rosenbaum is a cardiologist, a fellow at the Philadelphia V.A. Medical Center, and a Robert Wood Johnson Foundation Clinical Scholar at the University of Pennsylvania.
(c) 2013 New Yorker Magazine