Previously on Screen the Lungs!, we have focused on several of the logistical barriers that many patients face in receiving screening and how to address them. In today’s blog, I will discuss a different side of making a decision to screen, focusing on the emotional burden of stigma that lung cancer patients face.
Patients with lung cancer experience a unique burden of stigma not seen in other cancer diseases. Because of the close link between smoking and lung cancer and the modern narratives surrounding smoking, feelings of shame and self-blame can be very prevalent among patients. This emotional burden can serve as a strong social deterrent to care-seeking behaviors among patients.
This barrier challenges both existing lung cancer patients and those at high risk for lung cancer alike. Patients that already have a lung cancer diagnosis are far less likely to engage with medical care and are much slower to seek out treatment options, which has a detrimental effect on their disease outcomes. Smokers or former smokers at high risk for lung cancer often put off seeking care for symptoms and are deterred from seeking out or engaging with lung cancer screening programs because of the smoking-related stigmas that they face.
Feelings of nihilism and fatalism are also very common. Given the mixed public rhetoric regarding lung cancer and the stigmas associated with the disease, many patients are quick to believe that a lung cancer diagnosis is essentially a “death sentence”, thinking that the disease is almost always fatal. It is not hard to see how these beliefs can seriously undermine the very high potential value of early screening.
Patients from minority populations traditionally underserved in healthcare are also likely to face an even further-exacerbated burden of stigma due to implicit biases of physicians, distrust of the system, and varying perceptions of providers.
The unique stigmas that burden patients who smoke or have lung cancer, as well as destructive beliefs of nihilism and fatalism associated with lung cancer diagnoses, seriously challenge lung cancer screening initiatives. Because each individual patient’s beliefs and experiences are unique, there is no one-size-fits-all approach to address these challenges. However, once patients who may benefit from early screening are identified, the use of robust shared-decision-making and patient navigation programs offers strong opportunities to ameliorate these barriers among individual patients.
Thus, healthcare providers and patient navigators must be able to quickly identify these stigma- and belief-based barriers among their patients; consequently, trainings for shared-decision-making and for patient navigators should include components that directly discuss and push trainees to critically analyze the role of various stigmas and destructive beliefs in a patient’s view of lung cancer and screening programs. These training efforts should emphasize and workshop identification tactics, communication techniques, and strategies to mitigate these beliefs among patients. For example, when presenting the benefits of early screening to reluctant patients, providers and navigators should emphasize that the overwhelming majority of lung cancers found in screening programs are at an early stage, whereas, without screening, most diagnoses are made at advanced stages. These discussions should also focus on the high rate of survival in early-stage lung cancer compared to the poor prognosis of late-stage disease.
In our broader educational efforts, we must also seek to change the narrative surrounding smoking and lung cancer. Many providers today are too young to remember how common smoking was in previous decades. Educational materials for both providers and patients must establish this fact, as well as the varying prevalence of tobacco use and smoking among different geographical regions and diverse cultures, in order to reduce the biases that help perpetuate stigma.