The Worst Patients in the World – The Atlantic

By | June 12, 2019
Gosia Herba

I was standing two feet away when my 74-year-old father slugged an emergency-room doctor who was trying to get a blood-pressure cuff around his arm. I wasn’t totally surprised: An accomplished scientist who was sharp as a tack right to the end, my father had nothing but disdain for the entire U.S. health-care system, which he believed piled on tests and treatments intended to benefit its bottom line rather than his health. He typically limited himself to berating or rolling his eyes at the unlucky clinicians tasked with ministering to him, but more than once I could tell he was itching to escalate.

My father was what the medical literature traditionally labeled a “hateful patient,” a term since softened to “difficult patient.” Such patients are a small minority, but they consume a grossly disproportionate share of clinician attention. Nevertheless, most doctors and nurses learn to put up with them. The doctor my dad struck later apologized to me for not having shown more sensitivity in his cuff placement.

When he wasn’t in the hospital, my dad blew off checkups and ignored signs of sickness, only to reenter the health-care system via the emergency department. Once home again, he enthusiastically undermined whatever his doctors had tried to do for him, practically using the list of prohibited foods as a menu. He chain-smoked cigars (for good measure, he inhaled rather than puffed). He took his pills if and when he felt like it. By his late 60s, he’d been rewarded with an impressive rack of life-threatening ailments, including failing kidneys, emphysema, severe arrhythmia, and a series of chronic infections. Various high-tech feats by some of Boston’s best hospitals nevertheless kept him alive to the age of 76.

It was in his self-neglect, rather than his hostility, that my father found common cause with the tens of millions of American patients who collectively hobble our health-care system.

For years, the United States’ high health-care costs and poor outcomes have provoked hand-wringing, and rightly so: Every other high-income country in the world spends less than America does as a share of GDP, and surpasses us in most key health outcomes.

Recriminations tend to focus on how Americans pay for health care, and on our hospitals and physicians. Surely if we could just import Singapore’s or Switzerland’s health-care system to our nation, the logic goes, we’d get those countries’ lower costs and better results. Surely, some might add, a program like Medicare for All would help by discouraging high-cost, ineffective treatments.

But lost in these discussions is, well, us. We ought to consider the possibility that if we exported Americans to those other countries, their systems might end up with our costs and outcomes. That although Americans (rightly, in my opinion) love the idea of Medicare for All, they would rebel at its reality. In other words, we need to ask: Could the problem with the American health-care system lie not only with the American system but with American patients?

One hint that patient behavior matters a lot is the tremendous variation in health outcomes among American states and even counties, despite the fact that they are all part of the same health-care system. A 2017 study published in JAMA Internal Medicine reported that 74 percent of the variation in life expectancy across counties is explained by health-related lifestyle factors such as inactivity and smoking, and by conditions associated with them, such as obesity and diabetes—which is to say, by patients themselves. If this is true across counties, it should be true across countries too. And indeed, many experts estimate that what providers do accounts for only 10 to 25 percent of life-expectancy improvements in a given country. What patients do seems to matter much more.

Somava Saha, a Boston-area physician who for more than 15 years practiced primary-care medicine and is now a vice president at the nonprofit Institute for Healthcare Improvement, told me that several unhealthy behaviors common among Americans (for example, a sedentary lifestyle) are partly rooted in cultural norms. Having worked on health-care projects around the world, she has concluded that a key motivator for healthy behavior is feeling integrated in a community where that behavior is commonplace. And sure enough, healthy community norms are particularly evident in certain places with strong outcome-to-cost ratios, like Sweden. Americans, with our relatively weak sense of community, are harder to influence. “We tend to see health as something that policy making or health-care systems ought to do for us,” she explained. To address the problem, Saha fostered health-boosting relationships within patient communities. She notes that patients in groups like these have been shown to have significantly better outcomes for an array of conditions, including diabetes and depression, than similar patients not in groups.

The absence of healthy community norms goes a long way toward explaining poor health outcomes, but it doesn’t fully account for the extent of American spending. To understand that, we must consider Americans’ fairly unusual belief that, when it comes to medical care, money is no object. A recent survey of 10,000 patients found that only 31 percent consider cost very important when making a health-care decision—versus 85 percent who feel this way about a doctor’s “compassion.” That’s one big reason the push for “value-based care,” which rewards providers who keep costs down while achieving good outcomes, is not going well: Attempts to cut back on expensive treatments are met with patient indignation.

For example, one cost-reduction measure used around the world is to exclude an expensive treatment from health coverage if it hasn’t been solidly proved effective, or is only slightly more effective than cheaper alternatives. But when American insurance companies try this approach, they invariably run into a buzz saw of public outrage. “Any patient here would object to not getting the best possible treatment, even if the benefit is measured not in extra years of life but in months,” says Gilberto Lopes, the associate director for global oncology at the University of Miami’s cancer center. Lopes has also practiced in Singapore, where his very first patient shocked him by refusing the moderately expensive but effective treatment he prescribed for her cancer—a choice that turns out to be common among patients in Singapore, who like to pass the money in their government-mandated health-care savings accounts on to their children.

Most experts agree that American patients are frequently overtreated, especially with regard to expensive tests that aren’t strictly needed. The standard explanation for this is that doctors and hospitals promote these tests to keep their income high. This notion likely contains some truth. But another big factor is patient preference. A study out of Johns Hopkins’s medical school found doctors’ two most common explanations for overtreatment to be patient demand and fear of malpractice suits—another particularly American concern.

In countless situations, such as blood tests that are mildly out of the normal range, the standard of care is “watchful waiting.” But compared with patients elsewhere, American patients are more likely to push their doctors to treat rather than watch and wait. A study published in the Journal of the American Board of Family Medicine suggested that American men with low-risk prostate cancer—the sort that usually doesn’t cause much trouble if left alone—tend to push for treatments that may have serious side effects while failing to improve outcomes. In most other countries, leaving such cancers alone is not the exception but the rule.

American patients similarly don’t like to be told that unexplained symptoms aren’t ominous enough to merit tests. Robert Joseph, a longtime ob‑gyn at three Boston-area hospital systems who last year became a medical director at a firm that runs clinical trials, says some of his patients used to come in demanding laparoscopic surgery to investigate abdominal pain that would almost certainly have gone away on its own. “I told them about the risks of the surgery, but I couldn’t talk them out of it, and if I refused, my liability was huge,” he says. Hospitals might question non-indicated and expensive surgeries, he adds, but saying the patient insisted is sometimes enough to close the case. Joseph, like many American doctors, also worried about getting a bad review from a patient who didn’t want to hear “no.” Such frustrations were a big reason he stopped practicing, he says.

In most of the world, what the doctor says still goes. “Doctors are more deified in other countries; patients follow orders,” says Josef Woodman, the CEO of Patients Beyond Borders, a consulting firm that researches international health care. He contrasts this with the attitude of his grown children in the U.S.: “They don’t trust doctors as far as they can throw them.” (For what it’s worth, patients in China may be even worse than American patients in this regard. According to one report, they spend an average of eight hours a week finding and sharing information online about their medical conditions and health-care experiences. Various observers have told me that Chinese patients wield that information like a club, bullying doctors into providing as many prescriptions as possible.)

American patients’ flagrant disregard for routine care is another problem. Take the failure to stick to prescribed drugs, one more bad behavior in which American patients lead the world. The estimated per capita cost of drug noncompliance is up to three times as high in the U.S. as in the European Union. And when Americans go to the doctor, they are more likely than people in other countries to head to expensive specialists. A British Medical Journal study found that U.S. patients end up with specialty referrals at more than twice the rate of U.K. patients. They also end up in the ER more often, at enormous cost. According to another study, this one of chronic migraine sufferers, 42 percent of U.S. respondents had visited an emergency department for their headaches, versus 14 percent of U.K. respondents.

Finally, the U.S. stands out as a place where death, even for the very aged, tends to be fought tooth and nail, and not cheaply. “In the U.K., Canada, and many other countries, death is seen as inevitable,” Somava Saha said. “In the U.S., death is seen as optional. When [people] become sick near the end of their lives, they have faith in what a heroic health-care system will accomplish for them.”

It makes sense that a wealthy nation with unhealthy lifestyles, little interest in preventive medicine, and expectations of limitless, top-notch specialist care would empower its health-care system to accommodate these preferences. It also makes sense that a health-care system that has thrived by throwing over-the-top care at patients has little incentive to push those same patients to embrace care that’s less flashy but may do more good. Medicare for All could provide that incentive by refusing to pay for unnecessarily expensive care, as Medicare does now—but can it prepare patients to start hearing “no” from their physicians?

Marveling at what other systems around the world do differently, without considering who they’re doing it for, is madness. The American health-care system has problems, yes, but those problems don’t merely harm Americans—they are caused by Americans.

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