The Voice
Medical Mistrust Can Have Serious Impact on Lung Cancer Outcomes
When faced with a frightening diagnosis like lung cancer, many people turn to and lean on their doctors for advice and support. But imagine facing such a diagnosis if you did not trust your doctor or feel that they supported you. This is a reality for many people who do not have faith in the medical system, which experts call “medical mistrust.”
What is medical mistrust?
Laura Bogart, a doctor who has studied and written about medical mistrust, defines it as “an absence of trust that health care providers and organizations genuinely care for patients’ interests, are honest, practice confidentiality, and have the competence to produce the best possible results.”
Medical mistrust is often connected to race. Specifically, many Black Americans mistrust the medical system because of how medical professionals and systems mistreated their ancestors. Historically, the Eugenics Movement and racist beliefs led to the involuntary sterilization of women of color in the United States in the twentieth century. Six hundred African-American men were chosen for the “Tuskegee Study of Untreated Syphilis in the Negro Male,” launched during the Great Depression. They were told they had “bad blood,” and many underwent painful spinal taps and other medical procedures. Of those 600 men, 399 had syphilis. Even after the U.S. Public Health Service in 1945 approved penicillin to treat the disease, the study that began in 1932 would continue until 1972 without the men being treated – all in the name of medical research. The study’s participants experienced severe health problems including blindness, mental impairment and death. Unfortunately, members of the Black community continue to face problems today. For example, studies show that Black patients in America are still undertreated for pain compared to white patients. It’s not surprising that there is mistrust when and if a person of color seeks medical attention.
It’s important to note that the term, “medical mistrust” is problematic because it blames the African American community for their lack of trust in the medical system. Calling it medical mistrust, “puts [the blame] on the community when in fact the community has been let down by the medical system and by providers who continue to discriminate,” says Kimlin Tam Ashing, the director of the Center of Community Alliance for Research and Education at the City of Hope cancer center. However, the term is still widely used in medical literature.
How does medical mistrust factor into lung cancer treatment?
Lung cancer screenings are one of the most effective tools to reduce lung cancer mortality rates, by catching the disease in the early stages. However, The American Cancer Society 2022 “State of Lung Cancer” report shows that only 5.8% of all eligible Americans have been screened for lung cancer, and some states have screening rates as low as 1%. A 2022 study of lung cancer and medical mistrust suggested that lung cancer screenings may be more successful if medical professionals address the causes of medical mistrust.
The study used focus groups and interviews to explore how medical treatment could be made more equitable. In the interviews, researchers found that many people did not know much about lung cancer screening, but took the idea seriously once it was presented.
One participant in the interviews said, “You hear about getting tested for colon cancer and other cancers, but nothing about lung cancer.”
After learning about lung cancer screenings, some participants were confused and frustrated that they had not heard of it from their primary care doctors, even if they had been with them for a long time.
Participants also said that they were more hesitant to seek screenings or medical care because they had previously been misdiagnosed, or had doctors dismiss serious symptoms that they were experiencing. And, if patients had not had a negative experience with the healthcare system themselves, many felt that they had vicarious negative experience because of the way they had seen other people treated.
Other sources suggest that healthcare providers often dismiss symptoms of lung cancer, leading to misdiagnoses and delays in treatment. Delays can mean missing the ability to treat the cancer when it is still in the early stages and allowing the disease to progress, which affects prognosis. Ultimately, the policies and practices that uphold structural and systemic racism change the disease risk (e.g., smoking patterns), as well as resource allocation, and access to health care services such as screening. Ultimately, these overt or covert policies lead to people of color not being included in the highest levels of healthcare opportunities and treatments.
What can medical professionals do about medical mistrust?
Although medical mistrust is pervasive, and its consequences are serious, there are some things that doctors can do to address these barriers. Research on medical mistrust shows that in general, people who mistrust the medical system as an institution may be more trusting of healthcare providers as individuals. Indeed, many of the proposed remedies for medical mistrust happen at the physician level. One solution is for physicians to speak to patients from a place of empathy, rather than simply confronting them with information. Some programs that allow patients and medical practitioners to get to know each other through conversations outside of the exam room have also had success in revealing common interests and emphasizing humanity, which helped combat medical mistrust.
For more information on medical mistrust and lung cancer, see Upstage Lung Cancer’s Podcast, which features an interview with Raymond Osarogiagbon, MD, FACP, who has worked extensively with poor, rural black communities about lung cancer, and in Memphis, Tennessee, an area with a disproportionately high lung cancer rate.
Sources:
Understanding and Ameliorating Medical Mistrust Among Black Americans
Commonwealth Fund
Medical Mistrust Among Patients & the Impact on Lung Cancer
Oncology Times (lww.com)
Misdiagnosed Lung Cancer: Factors & Delayed Diagnosis Risks
verywellhealth.com
Access to Healthcare in Rural and Black Communities
Upstage Lung Cancer podcast