The pain of stigma, the embrace of family, the complexity of care

The O’Donnell Grove surrounds Simmons Cancer Center, providing a scenic and peaceful environment for patients, their families, and Simmons physicians and scientists.
The O’Donnell Grove surrounds Simmons Cancer Center, providing a scenic and peaceful environment for patients, their families, and Simmons physicians and scientists.

Shame or guilt, anger, depression, defensiveness, confusion, or even stark misconceptions can lurk below the surface of a lung cancer diagnosis. At Simmons Cancer Center, researchers are probing such psychosocial concerns to better understand their impact on lung cancer patients and their care. Work led by psychologist Dr. Heidi Hamann is exploring the experience of lung cancer stigma, which burdens patients with feelings of judgment as they repeatedly are asked whether they are smokers—and, if so, are confronted with people’s assumption that their disease is therefore their fault.

“Patients need as much support from friends, family, and medical providers as they can get,” Dr. Hamann says. “If they feel like they are constantly having to answer questions about whether they smoked and what that means, they may not feel they are getting that full support.”

Her research showed that even lung cancer patients who did not have a smoking history felt the weight of stigma. “When they would tell someone they had lung cancer, they would have to start by saying, ‘But I never smoked,’” Dr. Hamann says. “People know others will react to them in a certain way unless they say this.”

Based on feedback from individuals and focus groups, Dr. Hamann and her colleagues have been developing a questionnaire as a tool to gauge stigma’s impact. When patients internalize lung cancer stigma, guilt and regret may cause them to isolate themselves and to avoid screening, medical appointments, or discussing health concerns with professionals, Dr. Hamann says.

Identifying such patients can prompt an intervention that helps them reframe their thinking, recognize smoking as an addiction, and focus on moving forward. Dr. Hamann works closely with Dr. Jeff Kendall and the Simmons Cancer Center Supportive Services team to help translate these research findings into clinical practice.

Meanwhile, UT Southwestern medical anthropologist Dr. Simon Craddock Lee is shedding light on social interaction and decision making among African-American lung cancer patients, their caregivers, and the health care system. Lung cancer takes an especially heavy toll on African- Americans, who have a higher risk of getting the disease, are diagnosed with more advanced cases, and are more likely to delay care after diagnosis.

Over two years, Dr. Lee and his colleagues surveyed 100 African-American patients receiving care at the county safety-net hospital, Parkland, then conducted multiple in-home follow-up interviews with patients and their primary caregiver to better understand the role of family in their treatment experience.

Generally, the patients had caregivers and close family who were highly engaged, as well as strong networks of extended family. “Everyone worries that lower socioeconomic status patients may lack social support; that may not be an issue here,” Dr. Lee says.

His findings also undercut another concern: that care for medically underserved or minority patients may be hindered by a lack of trust in physicians. Patients in Dr. Lee’s study liked and respected their doctors.

But there were communication challenges between caregivers and patients who were uneasy about their understanding of the disease and its treatment and who struggled to convey that uncertainty to their treatment team. They were concerned about doctors using big words or talking too quickly, Dr. Lee says, and they needed help understanding, for instance, what stage III cancer means.

“Patients would ask me, ‘How many stages are there?’ So they’re lacking some basic information about how the disease progresses and what the implications are,” he says.

Also, most of the patients did not perceive conversations with clinicians as discussions of treatment options but instead felt that decisions about care rest with their clinical team.

“Trying to explain to patients about decisions they need to make often doesn’t make sense to these patients. They are interested in understanding what’s happening to them, what the doctor is going to do to them, and what this means is coming next,” Dr. Lee says.

The research also highlighted the importance of correcting misconceptions, he says, such as the notion that surgery can cause a cancer to spread. Otherwise, “patients predisposed to think cutting is bad are relieved when they are not referred to surgery. They don’t understand that can mean their cancer is more advanced.”

Although the research focused on African-Americans, most findings were not race-specific, Dr. Lee notes. “I think a lot of the issues in this cohort are likely generalizable to other low-socioeconomic status patients, whose lives can be particularly complicated by a cancer diagnosis.”

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