Not long ago, I was working in a busy teaching hospital’s intensive-care unit, poring over EKGs, examining X-rays and reviewing medication orders. I received a phone call. Results were in for the lung biopsy of one of my patients, Ms. X. She had cancer. The news shook me. Ms. X hugged us at the end of every visit. She had worked for decades as a seamstress and hoped to retire soon. A resident overheard my conversation. “Did your patient smoke?” she asked. “No,” I said. The trainee sighed and shook her head. “When a person who doesn’t smoke gets lung cancer . . . that’s just unacceptable.”
I was stunned by her implication – that a cancer diagnosis in a patient who used tobacco was more acceptable. It is a tragedy when any patient develops lung cancer. They will undergo surgeries, toxic infusions and lonely nights in the hospital. Many will face crushing financial pressures and be forced to confront their mortality in unimaginable ways. Why would we mute our sympathy in this moment?
As a pulmonologist practicing in a disadvantaged community in Oakland, Calif., I evaluate patients with potential lung cancer every day. About half a million Americans alive today have been diagnosed with this disease at some point in their lives. Though treatments evolve, there’s an old standby that the medical establishment keeps dishing out to these patients: shame and blame.
The hard-working resident was just echoing what she had been taught for years in medical school. Her conclusion was drawn from American medicine’s “hidden curriculum”: the assumption that individual will is destiny and that patients who behave imperfectly can be blamed for their illness. At hospitals across the country, I’ve seen health-care providers use language that separates “deserving” from “undeserving” patients.
As a trainee at an academic medical center, I observed weekly conferences where the care plans of new cancer patients were determined by a large team of expert physicians. The words “lung cancer” – followed by “nonsmoker” – often elicited murmurs of sympathy. I wondered whether this sympathy would lead to longer and more meaningful clinic visits with the patient in question, and whether the opposite would be true for the Vietnam veteran who had smoked for 40 years. The tight link between tobacco and lung cancer has hardened into stigma, and the potential for care disparities is real.
The tight link between tobacco and lung cancer has hardened into stigma, and the potential for care disparities is real.
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There is little research measuring how physicians’ biased attitudes affect outcomes for smoking lung cancer patients, but a number of studies point to its likely negative impact. One questionnaire-based study revealed that physicians were less likely to offer advanced lung cancer treatments to patients who were smokers vs. comparable nonsmokers.Scientific reviews have shown that physicians who harbor biased attitudes toward their patients often ask fewer questions during visits, order fewer tests and offer suboptimal therapies. Over the past decade, I’ve seen hundreds of tobacco-using patients who were treated this way at some point in their care journey – their coughs ignored, their symptoms minimized, their stories unprobed.
The stigma goes far beyond the medical community. Lung cancer accounts for 25 percent of our nation’s cancer deaths but receives only 10 percent of cancer research dollars. Some in the field believe that donors give less to lung cancer research because of the perception that the disease is self-inflicted. Research and anecdotal data show that lung cancer patients receive less support from their friends and neighbors than those with other cancers, making their disease more difficult to bear. A 2004 study from the BMJ notes that some patients hid the illness because of stigma, at times resulting in worrisome financial consequences and increased emotional distress.
Smokers, in particular, are shamed more vocally than other patients who develop diseases with a strong behavioral correlate. When a well-known person dies of a heart attack, the obituary seldom notes their sedentary lifestyle or dietary choices. But when a brilliant former colleague, the late physician and writer Paul Kalanithi, was being treated for lung cancer, newspaper articles made it a point to mention that he didn’t smoke. He wasn’t one of those who had brought cancer on himself, the stories implied.
Stigma isn’t limited to lung cancer patients, of course. Our culture’s tendency to frame certain illnesses as character defects, as opposed to complex phenomena with genetic and psychosocial components, is widespread and carries serious consequences. The group that suffers most is the obese, a classification that applies to nearly 40 percent of American adults. Research shows that obese patients are more likely to be considered lazy or undisciplined by health-care providers; they are also viewed as more likely to disregard treatment recommendations and insufficiently committed to their health. These attitudes erode patient-doctor communication, and physicians tend to spend less time with patients who are obese. This means these patients have more limited interactions with the health-care system and miss many opportunities. For instance, data shows that morbidly obese women are often under-screened for cervical and colorectal cancer.
Those dealing with addiction and hepatitis C, a blood-borne virus often transmitted through sharing needles or other equipment to inject drugs, face a similar stigma. A high percentage of health-care professionals exhibit negative attitudes toward patients with substance use disorders, perceiving them as morally deficient or lacking self-control, and leading to reduced access to care. Some hepatitis C patients, fearing biased providers, avoid medical care altogether, leaving the latest curative treatments on the table. When I worked in a primary-care setting, a patient asked me to remove his hepatitis C diagnosis from my clinic note. “If someone sees that, they’re going to treat me differently,” he said. “You all can’t help it.”
Why are doctors and nurses so judgy? In part, our culture of blame is an extension of American culture, which tends to hold the sick and impoverished personally responsible for their situations. We don’t feel comfortable invoking social structures, environments or even luck as powerful drivers of our fates. Physicians are also expected to be high-performing and deeply self-critical. This can easily spill over into our interactions with patients.
In my practice, I see how the culture of blame has altered the care that pulmonary patients receive. One lung cancer patient asked me if I felt less invested in his trajectory “because I smoked my way into this.” His fears were understandable. One important study reveals that nearly half of lung cancer patients at an outpatient clinic perceived negative judgment from at least one of their health-care providers. This type of stigma has been linked to decreased engagement with the health-care system, which can cause delays in treatment.
Though the human instinct is to draw straight lines, the relationship between behavior and disease is far more complex. First, though cigarette smokers are up to 30 times more likely to develop lung cancer, 15 to 20 percent of people diagnosed with the disease have never smoked. There are tremendous health risks associated with tobacco – including higher rates of emphysema, strokes and heart attacks – but the majority of smokers do not develop lung cancer. A number of genetic and environmental factors can increase one’s risk, irrespective of tobacco use.
Second, tobacco companies promoted their products for decades through glamorous marketing and military distribution schemes. Once the damaging health effects of smoking became widely known, millions attempted to stop – and most couldn’t. Without pharmaceuticals or a formal program, only 5 percent of smokers who try to quit can do so successfully.
Those who do give up tobacco tend to be wealthier, with stronger social networks and fewer life stressors. The poor and precarious struggle the most to quit. Many continue to smoke not because of a willful disregard for their health but because nicotine is a way of coping with depression or economic insecurity.
There is no doubt that health-care providers need to ask about their patients’ daily habits and identify risky behaviors. We need to aggressively promote the healthiest behaviors, offer help in quitting harmful habits and encourage patients to take charge of their lives as best they can. But if our patients receive a cancer diagnosis, we need to care for them with a spirit of unconditional empathy and advocacy. Our patients are more than what they have ingested or inhaled.