Ending Stigma in Lung Cancer: The IASLC Participates in a Collaborative Summit Held by the National Lung Cancer Roundtable 

Ending Stigma in Lung Cancer: The IASLC Participates in a Collaborative Summit Held by the National Lung Cancer Roundtable 

Patient Advocacy & Survivorship
Oct 15, 2020
Jill Feldman
Nicholas R. Faris, MDiv
Graham W. Warren, MD, PhD
Warren-Faris-Feldman-Headshots-with-border

Stigma is any thinking or behavior that produces internal shame or external judgment toward a person, place, or thing.1 In healthcare, stigma could be any sociocultural norm that prevents a patient’s access to or experience of high-quality care. With lung cancer in particular, patients often feel stigmatized by clinicians, patients, family, friends, and within themselves as being responsible for causing their lung cancer or for not caring about their diagnosis.2 False perceptions, delays in diagnosis, lack of knowledge or delivery of evidence-based care, and poor social support are all associated with stigmatization and ultimately can prove harmful to patients and their clinicians, and the ability to deliver optimal care.

Patient Perspective

The first time I [Jill Feldman] experienced the stigma surrounding lung cancer was as a teenager, almost 37 years ago. My dad had just died of lung cancer at 41 years of age. I was at a baseball game after school and one of my close friends asked me why I was never in a good mood anymore. I said that I missed my dad. My friend responded with, “Well, my mom said it was your dad’s fault because he used to smoke.” Suffice to say the emotional scars and the impact that left on me at 13 years of age are with me forever. 

I continued to experience the same stigma in my 20s when my mom and aunt died of lung cancer. In a way, it was worse because I was the perpetrator. Knowing what I went through with my dad, when my mom was diagnosed with lung cancer, she blamed herself and said, “I should have stopped smoking sooner.” She had stopped 13 years prior, but I was so angry, upset, scared, and selfish that I just agreed with her. The overwhelming guilt that my mom died with is the heavy burden of guilt and regret that I live with. 

Since my own diagnosis of lung cancer 11 years ago, I have experienced the stigma often. I am now comfortable with addressing it, but it is heart wrenching to see my kids experiencing it, and knowing first-hand how painful stigmatization is. While the overt examples of stigmatization have obvious consequences, the subtle, unintentional biases can be just as damaging and dangerous. The following are two examples:

1. Despite being in the third generation on both sides of my family to be diagnosed with lung cancer, I have had many physicians tell me that my children are not at high risk for lung cancer and don’t need to be screened because they have never been exposed to second-hand smoke.

2. I have a brother who is 18 months older than I am who has been rolling and smoking his own cigarettes since he was 16 years old, but he does not have lung cancer. The responses I get from friends to fellow advocates to physicians when they hear about my brother are shocking. I’ve been asked, aren’t you angry, or how did you get it and not him? But, the one that really annoys me is when people say, “Well, that doesn’t seem fair.” Since when is life fair? No one, including my brother, deserves lung cancer.

The stigma also affects funding for research. The first time I approached my congressman about the need for more funding for lung cancer research, his response was, “Why would I support or champion a cause that can be prevented?” 

The stigma surrounding lung cancer and the “lung cancer is preventable” message has a detrimental effect on the care, treatment, and quality of life for people with lung cancer. It creates barriers to diagnosis, treatment, and funding for research; and the psychosocial distress is real. Even worse, the stigma has created a barrier that is holding the lung cancer community back; it is a perpetuated stigma within the community itself. It’s there and it’s significant. When someone is forced to emphasize that they never smoked, the message being sent to the 85% of patients with lung cancer who have a smoking history is, “You are the ones who deserve lung cancer.” While unintentional, the pervasive stigma divides a community that desperately needs to unite.

It is no wonder we are sensitive to the anti-smoking campaigns. The hard-hitting public health campaigns aimed toward risk reduction and smoking cessation have been successful and critical for educating the public about the numerous harmful effects of smoking. However, they have also led to the unintended consequence of stigma, which is just as harmful and is not being addressed. Eliminating the stigma starts with healthcare providers. Although smoking history may be important for cancer treatment, defining patients by what kind of smoker they are (e.g., smoker, former smoke, non-smoker or never smoker) has to stop. When providers ask people about their smoking history or status, it must be done in a non-judgmental way, and smoking must be addressed as an addiction, which is a disease, not a behavior. Words are powerful and important. But beyond words, a compassionate conversation is the heart of a patient’s experience.

We, who have lung cancer are all people first. The stigmatization effect of language and behavior is harmful, and it directly affects the well-being of patients and their families. Words matter. Person-first language matters. Patients and their families matter.

National Lung Cancer Roundtable Summit

On February 27-28, 2020, the National Lung Cancer Roundtable (NLCRT) held a summit, “Eliminating Lung Cancer Stigma: A National Initiative,” to address the effects of stigma on lung cancer care. Supported by the American Cancer Society, the NLCRT is a national coalition of 140 members representing public, private, and voluntary organizations, and invited individuals, dedicated to reducing the incidence, morbidity  and mortality of lung cancer in the United States.3 Summit attendees included more than 65participants, who represented 42 NLCRT member organizations, including patient/caregiver advocacy groups, clinical care and research teams, federal agencies, professional medical societies (including the IASLC), and industry groups.  The goal of the summit was to organize and build momentum for a sustained effort to end lung cancer stigma and its adverse impact on lung cancer care and outcomes across the care continuum. Given the evidence demonstrating the toll of stigma on lung cancer risk reduction, early detection, treatment, and survivorship, there is a clear and convincing need for a strategic plan to establish coordinated national and local efforts to confront and eliminate lung cancer stigma in every setting and in every form. .

Summit discussions highlighted several tactical changes that should be implemented immediately. Change begins with a tacit acknowledgment of the existence of stigma and its deleterious effects on patients with lung cancer and their care. Lung cancer stigma cannot be addressed if it is ignored. If a national initiative is to be effective, a multilevel (i.e., individual, interpersonal, organizational, community, and public policy) pledge of support for stigma-free care is vital. 

Indeed, the fierce battle to eliminate lung cancer stigma does not consist of filling a previously unexplored void. Eliminating stigma requires replacing the implicit and explicit biases that for too long have been the breeding ground for stigmatizing beliefs and practices. It is not enough to acknowledge stigma; we must reshape our society’s understanding of lung cancer, focusing especially on eliminating stigma while ensuring delivery of evidence-based care in the context of tobacco use. 

The summit made abundantly clear the need for the lung cancer community to adopt person-centered language. Patients were gracious but firm in reminding summit members of the harmful, pervasive contribution of language to lung cancer stigma. For example, a focus on “prevention” is often stigmatizing, as opposed a more holistic concept such as “health promotion,” or re-contextualizing smoking history as a modifiable risk factor. Put simply, lung cancer is not a disease of smoking alone; it is a human disease. Any attempt to relate to those afflicted by lung cancer as people, rather than simply as patients, reinforces their honor and dignity. 

Another immediate practice change repeatedly proposed, and embodied by the summit itself, was the need to elevate the voice of those afflicted by lung cancer. Increasing focus on patient-centered care is to be celebrated, but only insofar as the patient is a participant in the discussion, and not just the object of it. Ultimately, the power source that will drive this initiative to its desired end will be the stories we hear and honor. To listen is to be moved to action. 

Finally, the lung cancer community must respond to the call to pursue innovative solutions to the problem of lung cancer stigma. Early indications suggest a major impact,2,4-8 but there remains a dearth of research in the area of lung cancer and stigma. Stigma research stands as a critical building block as we look to bridge the gap between rapid discovery and lagging implementation. 

Eliminating stigma in the context of lung cancer, tobacco use, and evidence-based care can be difficult. Every clinician, patient, and advocate should recognize that cigarettes are devices engineered to create a deep and lasting addiction that most commonly starts during childhood or adolescence.9,10 The severe addiction caused by cigarettes has been linked with 13 different cancers including lung cancer, and smoking must be addressed as a part of evidence-based care for reducing cancer risk and improving cancer treatment outcomes. However, the adverse health effects of smoking extend far beyond lung cancer itself.11 Smoking increases risk for heart disease, pulmonary disease, vascular disease, as well as a wide spectrum of other health conditions. In the context of cancer care as a whole, smoking decreases survival and the effectiveness of cancer treatment In breast and prostate cancers, which are not traditionally linked with smoking, cardiovascular deaths caused by smoking may have a larger effect on survival than cancer itself.12 Smoking cessation can improve or reverse many of these health conditions, and quitting smoking after a cancer diagnosis is associated with improved survival.10,11 National Comprehensive Cancer Network Guidelines stipulate that smoking cessation be provided as a standard part of evidence-based care for all patients with cancer,13 and the IASLC has taken a strong position advocating for the provision of smoking cessation support as a part of lung cancer care.14 Ignoring smoking is not an option for lung cancer treatment or treatment of virtually any other cancer. Furthermore, ignoring smoking is not a part of evidence-based care for the prevention or treatment of most other health conditions. It could be considered malpractice to ignore the health effects of smoking, but by no means should smoking be used as a stigmatizing influence on any medical care. Clinicians, patients, families, friends, and advocates must recognize that every patient with cancer deserves non-stigmatized and evidence-based care. Unfortunately, this may be easier said than done.

Participants in the NLCRT Stigma Summit recognized the difficulties associated with eliminating stigma across lung cancer. Participants articulated six key elements for a national initiative. A comprehensive plan would cover how to:
•    Set research priorities, 
•    Support survivors, 
•    Change the public discourse and create new messages about lung cancer, 
•    Address the complicated relationship between lung cancer and tobacco, 
•    Improve healthcare team awareness and understanding, and
•    Address missed opportunities

Ongoing work has adopted these six elements as the framework for strategic plan development.

NLCRT summit members have continued to develop the strategic plan through subcommittee meetings devoted to each of the six key components listed above. A first draft of the comprehensive strategic plan will be proposed to NLCRT members in November during Lung Cancer Awareness Month and presented at the virtual NLCRT Annual Meeting on December 7-8, 2020.

In preparation for future work, the authors of this article suggest the following initiatives for consideration, many of which were raised by attendees during the February summit:
•    Become conscious of any potential stigma in the assessment, treatment, follow-up, and communication with patients, clinicians, and advocates.
•    Continue the IASLC’s engagement in the NLCRT initiatives, including the ongoing stigma initiatives.
•    In a manner similar to the Declaration for Tobacco Cessation, consider a declaration against lung cancer stigma to be disseminated and supported across all of the IASLC. 
•    Collaborate with experts in lung cancer stigma to better define stigmatization language, guidelines, and methods to survey IASLC members to better understand member perceptions around stigmatization. 
•    Disseminate information about stigma through collaborative sessions at the World Conference on Lung Cancer using webinars, online resources, and publications including consideration of dissemination tracts focused on stigma-related issues.
•    Support research initiatives through direct funding, advocacy on research panels, and elevating awareness.

Lung cancer stigma negatively affects every facet of a patient and their family’s experience.  Stigma in itself is a disease, and just like lung cancer, it is deadly.

The physical and emotional pain and stress of a lung cancer diagnosis are hard enough for anyone to endure—no one should have to defend him or herself or their loved ones for being diagnosed with this insidious disease. Anyone can develop lung cancer, and no one deserves it. But every person who has lung cancer deserves empathy, quality care, and support.

The perception of lung cancer won’t change unless we act to change it. The first step is making a conscious commitment to changing our own thinking and actions. Only then can we try to educate others.

References:
1.    Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Sociol. 2001;27:363-85. 
2.    Hamann HA, Ostroff JS, Marks EG, Gerber DE, Schiller JH, Lee SJ. Stigma among patients with lung cancer: a patient-reported measurement model. Psychooncology. 2014;23(1):81-92. 
3.    The National Lung Cancer Roundtable: About NLCRT. Accessed August 7, 2020. https://nlcrt.org/about.
4.    Weiss J, Yang H, Weiss S, et al. Stigma, self-blame, and satisfaction with care among patients with lung cancer. J Psychosoc Oncol. 2017;35(2):166-179. 
5.    Weiss J, Stephenson BJ, Edwards LJ, Rigney M, Copeland A. Public attitudes about lung cancer: stigma, support, and predictors of support. J Multidiscip Healthc. 2014;7:293-300. 
6.    Williamson TJ, Kwon DM, Riley KE, Shen MJ, Hamann HA, Ostroff JS. Lung Cancer Stigma: Does Smoking History Matter? Ann Behav Med. 2020;54(7):535-540. 
7.    Hamann HA, Shen MJ, Thomas AJ, Craddock Lee SJ, Ostroff JS. Development and Preliminary Psychometric Evaluation of a Patient-Reported Outcome Measure for Lung Cancer Stigma: The Lung Cancer Stigma Inventory (LCSI). Stigma Health. 2018 ;3(3):195-203.
8.    Ostroff JS, Riley KE, Shen MJ, Atkinson TM, Williamson TJ, Hamann HA. Lung cancer stigma and depression: Validation of the Lung Cancer Stigma Inventory. Psychooncology. 2019;28(5):1011-1017.
9.    U.S. Department of Health and Human Services. The Health Consequences of Smoking – 50 Years of Progress: A Report of the Surgeon General. Published 2014. Accessed August 7, 2020. https://www.cdc.gov/tobacco/data_statistics/sgr/50th-anniversary/index…;
10.    U.S. Department of Health and Human Services. Smoking Cessation. A Report of the Surgeon General. Published 2020. Accessed August 7, 2020. https://www.hhs.gov/sites/default/files/2020-cessation-sgr-full-report…;
11.    Warren GW, Alberg AJ, Cummings KM, Dresler CM. Smoking Cessation After a Cancer Diagnosis is Associated with Improved Survival. J Thorac Oncol 2020;15(5):705-708.
12.    Wang Y, Tao H, Paxton RJ, et al. Post-diagnosis smoking and risk of cardiovascular, cancer, and all-cause mortality in survivors of 10 adult cancers: a prospective cohort study. Am J Cancer Res. 2019;9(11):2493-2514. 
13.    NCCN Smoking Cessation Guidelines. Accessed August 7, 2020. https://www.nccn.org/professionals/physician_gls/pdf/smoking.pdf. 
14.    Declaration from IASLC: Tobacco Cessation After Cancer Diagnosis. International Association for the Study of Lung Cancer. Published September 4, 2019. Accessed August 7, 2020. https://www.iaslc.org/About-IASLC/News-Detail/declaration-from-iaslc-to…;

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About the Authors

Jill Feldman

Jill Feldman

Lung Cancer Advocate and Patient
Ms. Feldman is a lung cancer patient advocate and co-founder of the EGFR Resisters.
Nicholas Faris

Nicholas R. Faris, MDiv

Mr. Faris is the Director of the Thoracic Oncology Program at the Baptist Cancer Center in Memphis, TN.
Graham Warren

Graham W. Warren, MD, PhD

Dr. Warren is with the Department of Radiation Oncology, Medical University of South Carolina.