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WCLC 2021 | IASLC language guide: overcoming language barriers for patients with lung cancer

Jill Feldman, BS, MA, Lung Cancer Patient and Advocate, EGFR Resisters, gives an overview into the language barriers faced by individuals diagnosed with lung cancer and the need for the International Association for the Study of Lung Cancer (IASLC) language guide. Much of the stigma surrounding a lung cancer diagnosis is getting asked whether someone has a smoking history. Ms Feldman stresses the importance of raising awareness of other risk factors associated with developing lung cancer, such as genetic risk factors. There is an urgent need for bringing down barriers to diagnosis and care, such as the spread of messages like “lung cancer is preventable”, which can misinform the general public about the factors that contribute to lung cancer development. Ms Feldman explains that the IASLC language guide came into existence to promote awareness of the existing stigma, and the use of person-first language when referring to patients with lung cancer. The use of stigma-free and inclusive language is also important as it influences how patients perceive themselves. Therefore, this resource is aimed at helping individuals in the lung cancer community, members of the general public, scientists, and healthcare professionals use more compassionate and judgment-free language when interacting with patients with lung cancer. This interview took place at the World Conference on Lung Cancer (WCLC) 2021.

Transcript (edited for clarity)

The stigma surrounding lung cancer is real, and it’s something that I personally experienced for the first time when I was 13, when my dad died. And the same type of stigma I experienced when my mom died. And I remember vividly when people would ask me if my parents smoked after learning they died of lung cancer. The pain you feel because none of your friends whose parents died are asked if they did something to deserve cancer and die...

The stigma surrounding lung cancer is real, and it’s something that I personally experienced for the first time when I was 13, when my dad died. And the same type of stigma I experienced when my mom died. And I remember vividly when people would ask me if my parents smoked after learning they died of lung cancer. The pain you feel because none of your friends whose parents died are asked if they did something to deserve cancer and die.

And that’s how it feels. And so I think with every other cancer, when somebody is diagnosed, it elicits empathy with responses such as, I am so sorry, what can I do to help? Pure sympathy, no blame attached. But with lung cancer, the very first question we are asked is, “Did you smoke?”. And so immediately that puts the patient in a position to either have to defend themselves for having a smoking history or declare that they didn’t smoke.

And so it’s really, what it’s doing is it’s causing patients to shut down. When you’re diagnosed with lung cancer, when you’re diagnosed with any cancer, it’s difficult. But with lung cancer, there is that added element. And I recognize that taking a smoking history is really important for medical care, but the way it is done is what will allow the patient to disclose everything, feel comfortable communicating with their physician in a guilt-free environment.

So I think within the setting of a physician and a patient, it is absolutely critical to be sensitive, to be empathic. And cancer is complicated. There isn’t a simple cause and effect. And one thing I think nobody ever talks about is the fact that 90-some odd percent of people who do smoke, don’t get lung cancer. So there is clearly something genetic as well about the people who do get lung cancer. Why aren’t we looking at that more? And so the whole focus on smoking is really creating barriers across the entire continuum. And the overwhelming ‘lung cancer is preventable’ message, remains a deadly problem, because it not only creates barriers to diagnosis and care, but it also prevents the desperately needed research and awareness into all the other risk factors for lung cancer, which leave the general public with this false sense of security that, “Hey, if I don’t smoke, I’m not going to get lung cancer”. And so at the same time, of course, we have to recognize that the public health campaigns towards smoking cessation are very important and have been very successful. That can’t be minimized. But at the same time, we have to recognize the unintended consequences of stigma, which are just as harmful and are not being addressed.

So one of the things that I think people don’t recognize a lot, is that there will always be a stigma if we patients continue to be defined by our smoking status. We are being labeled, that’s exactly what it is. Because referring to us as either a smoker, former smoker, light smoker, never smoker, that’s a negative label. It’s defining us by a behavior, and it doesn’t tell the whole story of who we are and everything else about our enriched lives. And that is, I think, something that we need to really work on.

Knowing whether someone has a smoking history is important for a diagnosis of lung cancer or any other lung cancer, but the blame culture in lung cancer, you don’t see anywhere else. When someone’s diagnosed with any other cancer, you don’t label them by their smoking status. And we need to think about that. And so with that in mind, and with some of the other attention around person-first language in oncology, IASLC language guide was born.

And really it came from the patient advocacy committee. It was one of the projects that we saw was an urgent unmet need. Years ago, patients didn’t attend conferences, they didn’t read research journals. We weren’t on social media connecting with scientists and clinicians, and we weren’t reading our own clinical notes, but we are now. And just like treatment and research itself, our language needs to advance to become more compassionate and nonjudgmental. I think, I really want to stress that this language guide is not meant to shame anybody. It’s not meant to be a slap on the hand. It is meant to bring awareness to all stakeholders in the lung cancer community, that the language we use has a direct impact on patients and our families.

And I don’t think many are aware of that. And I understand medical language is rooted in tradition and has historically been used to describe cancer, but over time, those words and phrases have become stigmatizing. And what we wanted to do when we created the language guide, was not create this list of do’s and don’ts, but to again, make people aware of why words matter.

There’s plenty of research out there about how stigma impacts outcomes, how it impacts the psychosocial distress that people diagnosed with lung cancer and our families. So, that research is out there. And we felt like there needs to be a resource to help people understand the very complex and complicated stigma that exists. And this is one way that can directly impact patients and our families. And so when we were writing it, we were thinking of what is most important. And the person-first, stigma-free, blame-free equitable and inclusive language, that we think is the first and most important step in this ongoing process of increasing respect and unity throughout the entire lung cancer community.

And so the list of possible suggestions, for instance, saying person who smokes, as opposed to smoker, is an example of you are talking about the person first, you are acknowledging that this person is more than their disease. And that is the importance of the person-first language. And we understand also that in written journal articles or abstracts, there’s often a word count limit, and we’re trying to figure out how to work with that. But we need to, we need to because it really affects how patients perceive themselves and the disease.

One of the presentations in the stigma plenary that I thought was so important to include, was the last one by Gina Hollenbeck. She is the person diagnosed with ALK-positive lung cancer. And for years, for a very long time, she thought that she was increasing awareness by talking about the fact that she didn’t smoke, everywhere. She said on her website, in our communications verbally and written, she made sure she said, “I wasn’t a smoker”. And it wasn’t till it was brought to her attention, and it was me who brought it to her attention, how harmful those words can be. And she said, she thought about it. And then when she received a call from a dear friend whose mom was diagnosed with lung cancer, she was speaking to the mom and she said, “Hey, why don’t I get you in touch with my doctor? ” She provided all the help she could assist her with. And the woman’s response to Gina was, “Oh, you know what? I don’t deserve the help. Unlike you, I smoked so I deserve to get it”.

And that is such a profound story of exactly what the stigma is doing. It is dividing a community that desperately needs to unite. And I don’t think it’s… it’s not intentional when people are diagnosed, that they need to feel the need to declare that they didn’t smoke, because the minute they’re diagnosed, they’re being judged. And so I think it’s our responsibility as researchers, clinicians, advocates, industry, patients in the community already, to help change the conversation, to kill the stigma, and save lives.