This patient could be a time bomb, Dr. Neel Shah thought. A blood test suggested that she might have an ectopic pregnancy, in which a fertilized egg remains outside the uterus. Left untreated, the condition can cause fatal hemorrhaging. But when Shah, a medical resident at the time, told the woman she needed an ultrasound to confirm the result, she refused. An earlier visit to the emergency room for a bout of stomach trouble had left her with an exorbitant bill. Until Shah could tell her how much an ultrasound would cost, she wasn’t budging.
He had no idea what an ultrasound cost, and it took him a day to find out from the hospital. “All the while I was worried she could bleed to death,” Shah says. After telling the woman the test would cost $650, she agreed to be scanned. Shah’s suspicion was confirmed and the woman was successfully treated.
Shah, now an obstetrician at Beth Israel Deaconess Medical Center, tells this story to illustrate what he sees as two entwined realities in modern medicine. One is that doctors often have no idea how much treatments cost. The other is an emerging notion with the potential to change how physicians practice medicine in the United States: that medical costs themselves can harm patients’ health. Shah is part of a growing movement of American doctors who argue that it’s time for physicians to start considering costs in their practice, weighing the toll of medical debt against the benefit of expensive treatments, and talking to their patients directly about money.
His patient was willing to forgo a potentially life-saving procedure because she worried about getting hit with another huge bill. Recent studies have started to document other ways that medical costs harm patients: People struggling with high medical debt often skip important treatments and quit taking prescribed medications. New research also shows that medical debt can lead to diminished quality of life and high levels of psychological distress for both patients and their families.
In America’s current health care debate, any mention of cost-consciousness in the doctor’s office evokes concerns about rationing, denial of care, insurance companies pushing for cheaper over better. Doctors themselves have long embraced an ethical responsibility to advocate for the best possible treatment for their patients, regardless of price, and their patients count on that philosophy to guide their decisions. But Shah and others say that ignoring cost has become a luxury doctors can no longer afford—one that not only contributes to the unsustainable growth of health care budgets, but also can end up damaging patients’ lives. They are asking their colleagues to become aware of how their treatment choices can lead to financial harm—or, as some call it, “financial toxicity,” a new term for the myriad negative effects that high medical costs can have on patients’ well-being.
In doing so, Shah and others find themselves colliding with the culture of modern medicine. Some of their colleagues worry that any focus on cost may compromise care. There’s no guideline or protocol for how to incorporate such considerations into conversations with patients—and, understandably, many patients worry that any discussion of money will lead to second-rate treatment.
That final point highlights the difficult trade-offs and emotional questions that come with introducing financial harm as a consideration in medicine. Will doctors—or the rest of us—ever be able to accept that a patient’s overall interests might actually be better served by a less expensive treatment that’s almost as good?
‘When I trained, in the late ’70s and early ’80s, you learned that you are supposed to do the most, the best, everything for the patient in front of you,” says Dr. Richard Baron, president and CEO of the American Board of Internal Medicine, or ABIM, which certifies internists and doctors who practice related specialties. “If you were thinking about anything else, that was fundamentally corrupt.”
In recent years, the cost of “doing everything” has become clear. In 1960, health care spending in the United States consumed 5 percent of the gross domestic product; in 2012, that figure had grown to over 17 percent. A 2009 Harvard study found that an astonishing 62 percent of US bankruptcies were triggered by medical bills. Even people with health coverage are at risk, as insurers have shifted more financial responsibility for medical care to consumers in the form of high deductibles, copayments, and requirements that patients pay part of the costs for certain procedures or appointments.
Dr. Yousuf Zafar, an oncologist at Duke University and a leading voice in the effort to raise awareness about the impact of cost on patients, led a 2013 survey of 254 cancer patients, three-quarters of whom had applied for financial assistance. He and his research group found that nearly half had reduced their spending on necessities such as food and clothing. One in five said they took less medicine than their doctor had prescribed in order to cut costs. About one in four had stopped filling prescriptions altogether, and nearly one in 10 had skipped recommended tests, such as CT scans.
Earlier studies had shown that people struggling with finances sometimes cut back on needed medications, but Zafar’s survey was among the first to show how dealing with medical bills can affect people’s daily lives. With a colleague, Dr. Amy Abernethy, Zafar wrote a pair of papers that described the problem in the journal Oncology last year; along with several other physicians at Duke, they have become vocal proponents of the notion that “financial toxicity” can affect patients just as a drug might cause nausea or fatigue. “If we want to have an informed discussion with patients,” Zafar says, “we need to consider the benefits, the physical toxicity, and the financial toxicity of treatment.”
Zafar and Shah have been active in promoting this cause to their colleagues. Last October, Zafar coauthored a commentary in the New England Journal of Medicine titled “Full Disclosure—Out-of-Pocket Costs as Side Effects.” Shah, for his part, is writing a textbook that he hopes “will make health care a better deal” for patients by teaching physicians how to think about costs. He has also created a website, Costs of Care, designed to make doctors and other caregivers aware of how their decisions affect patients’ wallets.
Their efforts dovetail with a recent push by some medical societies to make their members more cost-conscious, reducing waste and overtreatment to keep the overall cost of health care under control and protect patients from harm. In 2012, the ABIM Foundation, an extension of the ABIM that promotes professionalism in medicine, introduced a campaign called Choosing Wisely, which asks other medical societies to identify the top five tests and treatments within their specialties that may be overused; to date, 50 medical societies have complied. Some hospitals are using the lists in creative ways, such as generating reports that show doctors how their use of these questionable procedures compares with their peers.
Similarly, the American College of Physicians has launched its own High Value Care campaign, aimed at making doctors more cost-conscious. As part of the program, the group published a list of 37 “clinical situations” in which screening or diagnostic tests provide patients little or no value, such as ordering X-rays or an MRI for someone with low back pain. A series of tutorials designed by the physicians group to discourage unnecessary procedures has been downloaded over 22,200 times and adopted by a number of residency programs.
YOU MIGHT THINK, given the current scrutiny of health care costs in the United States, that doctors would be uniformly concerned about their role in the problem, both for the system as a whole and for individual patients. Yet there are clues that cost-cutting initiatives face resistance. A survey in JAMA last summer found that only one in three physicians in the United States believes they bear a “major responsibility” to help rein in health care costs. And when medical societies are asked to identify overused procedures, critics have charged, some have skewed their answers to support the financial interests of their members. “Some societies chose to list services they didn’t actually provide or services that were not likely to impact their revenue,” says Dr. Nancy Morden, of the Dartmouth Institute for Health Policy & Clinical Practice, who in February coauthored a commentary about Choosing Wisely in the New England Journal of Medicine.
To be sure, doctors’ own financial interests are sometimes at odds with scaling back on costly tests and treatments. With malpractice suits an ever-present threat, doctors may also practice “defensive medicine,” ordering every possible test out of fear they could be sued for missing an important clue to disease.
However, there are reasons beyond profiteering and fear of litigation that lead to wasteful medicine and needless costs to patients, argues Dr. Steven Weinberger, CEO of the American College of Physicians. In part because they’re used to thinking of patients’ insurance as covering most costs, some doctors may order unnecessary tests out of habit, or simply to satisfy patient expectations. Moreover, medical schools place a great emphasis on being thorough. “Part of the culture of medicine is that omission is worse than commission,” says Weinberger.
Making doctors understand that commission can be a form of harm—in part for its financial impact—is a critical piece of the new cost-consciousness raising in medicine. So is getting doctors to become comfortable with the notion that it’s perfectly ethical to discuss lower-cost care options with a patient who might suffer financially in order to pay for the more expensive standard of care. “If there are good grounds for thinking that the money that’s saved might be more effectively used for other purposes, it would be ethical,” said Dr. Marion Danis, chief of the bioethics consultation service at the National Institutes of Health Clinical Center.
What’s less clear is how those conversations about cost might work, especially given that both doctors and patients typically do not know the price of any particular procedure, drug, or appointment, nor how much of it insurance will cover. To start to give doctors a better understanding of costs, Shah is developing a Zagat-like mobile app for physicians that will offer a rough estimate of the cost of medical tests and treatments—although the complexities of insurance still make any precise answer elusive.
Perhaps an even more difficult question is how doctors and patients can weigh concerns about financial harm from a treatment that offers some marginal benefit over less costly alternatives—essentially, how much is a small amount of added health worth? The medical specialty where that question poses the greatest challenges is oncology. Many new cancer drugs carry price tags of $100,000 a year or more, with patients often responsible for picking up a significant portion of the tab. (Medicare patients, for example, pay 20 percent of the cost of many cancer drugs taken in pill form.) Yet some of these new and sought-after medicines are barely more effective than older therapies, extending survival by just a few months on average.
Dr. Lowell Schnipper, chief of oncology at Beth Israel Deaconess Medical Center, says he understands why a patient might be willing to pay any price for the chance of gaining a few extra months of life. But he argues that the threat of financial harm makes it imperative for physicians to spell out less costly alternatives. “People are literally mortgaging their homes and going into the poorhouse in order to pay for treatments that…often do not result in the desired outcome, which is a longer, healthier life,” he says.
Schnipper heads the American Society of Clinical Oncology’s Value in Cancer Care Task Force, which is working to develop an algorithm-based tool that compares the benefits, side effects, and costs of various treatments for specific types of cancer. This tool, which the society hopes to release in the fall, will give doctors the ability to show patients in stark terms what they’re getting for their money when they opt to take an expensive drug. But ultimately, the choice to spend one’s retirement savings for a treatment with uncertain value lies with the patient.
A final conundrum is how patients feel about discussing costs of care with their physicians, something researchers are just starting to examine. Danis, the NIH bioethicist, conducted interviews about medical costs with groups of insured men and women from different racial and economic backgrounds, and found that feelings were mixed. Some, especially those who were struggling financially, said they would be eager to discuss their out-of-pocket costs with doctors—though their doctors rarely raise the subject. Comments from others, however, serve as a caution to physicians who would screen patients for financial harm: They said they wouldn’t tell a doctor about money problems out of fear they would then receive second-rate care.
Their concerns make perfect sense, given the existence of obvious disparities in American health care—the wealthy pay extra for concierge medicine, while everyone else waits months for an office visit. Yet Danis also heard another resounding theme from a number of patients: I don’t care what my treatment costs, I want the best. With many patients and physicians alike sharing in the ideal that when it comes to health, money should be no object, doctors determined to eradicate financial toxicity may face a more stubborn foe than they realize.