Recently, the American Association of Clinical Oncology (ASCO) came out with language guidelines for all of their meetings and communications. The goal of these guidelines, called “The Language of Respect,” is to ensure that words used to describe both patients and health care professionals recognize that individuals are worthy of respect for their roles in oncology.
The Language of Respect
There are two main directives in the ASCO guidelines: (1) demonstrate respect for patients and families and (2) demonstrate respect for colleagues. While the directive relating to colleagues focuses primarily on using appropriate and consistent addresses for conference presenters, the directive related to patients and families is much more nuanced, including specific examples that might lead to misinterpretation as “blaming patients” for disease progression or “dehumanizing patients.” For more details, you can read the full The Language of Respect announcement.
Let's talk more about 'risk reduction'
I’d like to talk a little about the one bullet point in ASCO’s statement that does not address the individual and instead stresses the need for using “accurate language throughout the session” when talking about “risk reduction” for cancer. This bullet point states that “‘risk reduction’ is the appropriate term for strategies that lessen the risk of developing cancer but do not necessarily prevent it.”
This is critically important, especially for lung cancer. While lung cancer is often described in conferences and presentations as a largely “preventable” cancer, this is not true. Presentations on smoking cessation, often included in the thoracic sessions of conferences, do not recognize that many former smokers and never smokers develop lung cancer. According to LUNGevity Foundation, 60-65% of new lung cancer diagnoses are among people who have never smoked or former smokers. In addition, the overwhelming majority of smokers DO NOT develop lung cancer.1 In a 2010 study by the International Association for Research on Cancer (IARC), which is part of the World Health Organization, research found that only 10-15% of smokers develop lung cancer.2
Adjusting the language around lung cancer
Obviously, there is much more than prevention needed to eradicate lung cancer; this is why referring to “risk reduction” instead is so necessary. The stigma that lung cancer is preventable affects federal funding for lung cancer research which, in turn, impacts how many young scientists are able to commit to a career in lung cancer research. Although lung cancer is the leading cause of cancer deaths, only 6% of federal research dollars are spent on lung cancer research, according to LUNGevity.1
The public needs to understand that there is currently no completely effective way to prevent lung cancer and that anyone who has lungs can get lung cancer. In order for this shift in public understanding to happen, the language around lung cancer needs to change, as addressed in the new ASCO guidelines. As lung cancer patients and advocates, we need to make sure to correct anyone, whether individual or organization, who refers to lung cancer prevention as opposed to risk factor reduction. This will not be an immediate change, but I believe with perseverance, we will accomplish this one day.
Positive steps forward in changing the cancer narrative
“The Language of Respect” issued by ASCO gives us the backing of an important organization in the oncology world that we can point to when we need to prove our point. I think it is wonderful that ASCO issued such a statement acknowledging how much words matter.
Hopefully, other groups in health care will soon adopt something similar as well.
Are you satisfied with your care team?