IASLC Releases Language Guide to Promote Stigma-Free Discourse

Patient advocate Jill Feldman led the development of the language guide to help promote patient-centered, stigma-free language across the lung cancer community.

The implementation of the International Association for the Study of Lung Cancer (IASLC)’s language guide represents a paradigm shift in intentional language use in lung cancer. The guide, which prioritizes patient-first, blame-free, stigma-free, and culturally sensitive language, is intended to help guide best practices for all written and spoken materials submitted for abstracts and presentations at World Lung Cancer conferences.

It is important to note that the publication represents best-practice guidelines and not an exhaustive “do” or “don’t” list. It is hoped that evolving the language used by medical professional can help alleviate the potentially hurtful statements that patients living with lung cancer sometimes encounter throughout their journey.

The project was spearheaded by Jill Feldman, who is chair of the IASLC Patient Advocate Committee, and a Chicago native living with lung cancer.

“Over time, the patient voice has become more valued and more credible,” said Feldman, in a press release. “And we are really trying to help medical professionals and scientists understand that our input will make their research, its results, and their treatments more relevant to patients.”

Feldman collaborated with Jamie Studts, PhD, from the University of Colorado’s Medical Oncology Division, in Boulder, Colorado, and Jamie Ostroff, PhD, of Memorial Sloan Kettering Cancer Center in New York, New York, to develop the IASLC Language Guide.

Studts noted that adjusting language is a “cost-free” measure that can play a critical role in patient healing.

The guide focuses on 4 simple areas of language growth. The first area is an emphasis on “patient-first language.” The intention behind this change is put the person before the disease, literally, and to avoid defining people by their disease. Therefore, IASLC supports phrases such as “patient or person with lung cancer” instead of “lung cancer patient.” Similarly, when discussing clinical trials, “patient,” “person,” and “participant,” are preferred or over the word “subject.” IASLC also supports the phrase “patient with active tobacco use” instead of the word “smoker.”

“We are not and should not be defined by our disease,” explained Feldman. “We are not solely the disease; we are so much more.”

The second focus area is to eliminate “blame language.” Some words that are rooted in medical history have the tendency to feel judgmental. IASLC supports creating a more inclusive environment by prioritizing words that are more empathetic and non-judgmental. Phrases such as “unable to” or “not able to” may be a better choice than “non-compliant.” Similarly, “cancer progressed” is preferred over “patient progressed” and “treatment failed patient” is preferred over “patient failed treatment.” The phrase “chief concerns” is thought to sound more empathetic than “chief complaint.” Moreover, the phrase “risk reduction” is believed to be individual patient-centered compared to “prevention” which is population-centered. Risk reduction is therefore more aligned with the current communication direction of personalized medicine.

The third focus area concentrates on ending stigmas. The medical community has become aware that as aggressive public health policies and messages attempt to de-normalize smoking, there has been an increase in judgement towards those who have or currently smoke. Consequently, the intention behind these stigma-free language changes is to promote judgement-free, bias-free language instead of categorizing people by behaviors.

The guide suggests trying the phrase “person who smokes” and “person who doesn’t smoke” instead of “smoker” and “nonsmoker” as well as using the phrase “person with smoking history/exposure” instead of “former smoker.” Furthermore, the guide supports the use of the phrase “person with nicotine dependence” instead of “nicotine addict.”

“Society tends to believe that lung cancer is about tobacco, meaning that people do this to themselves, so they do not deserve our support and compassion,” noted Studts. “They know that the disease is “a devastating illness and people die, which can lead to fatalism, pessimism, and just a real sense of futility.”

Respectful and considerate language is therefore essential to improving overall patient care, he added.

Lastly, the guide notes that language plays an important role in promoting equity among the lung cancer community. Respectfully language in this capacity includes cultural humility and sensitivity in light of race, ethnicity, gender, socioeconomic, and geographic descriptions.

“The language we have been using does not allow a more complex story to emerge about people's real experiences, and that tends to isolate and alienate the very people we are trying to help,” summarized Studts. “And, that stigma has impacted policy and the allocation of research dollars and funding over time.”

“This is an incredible milestone and an acknowledgement of the importance of patients and academics forming partnerships for change,” added Ostroff. “The next step is to move it to the international stage, so there can be global improvement in ending the stigma of lung cancer.”

Ostroff expressed that, for her, the most important aspect of the guide was that it was created alongside patient advocates.

“We came together from different places, with different methods and different training, but we all agree that words matter, and that it is possible to change the language we use to talk to and about persons with lung cancer, as well as about people who use tobacco,” Ostroff said. “And we can do that in a way that that conveys respect, inclusivity, and equity.”

Reference

  1. Language Guide. IASLC. May 2021. Accessed January 3, 2022. https://bit.ly/3mV7Z2y
  2. IASLC Releases the IASLC Language Guide: A Lexicon of Healing for Lung Cancer and Beyond. IASLC. News release. July 2, 2021. Accessed January 3, 2022.