The following clinical trials are currently recruiting patients with small-cell lung cancer or non–small-cell lung cancer for inclusion in several investigations. Erlotinib With or Without Bevacizumab The objective of this [ Read More ]
February 2015, VOL 6, NO 1
Lung Cancers and Stigma: Perception or Reality?
Caroline Kornhauser, MPH
Who can I blame? I am 67 years old and have been a heavy smoker all my life. I have lived with chronic obstructive pulmonary disease, and was just diagnosed with lung cancer. I made my bed and now I have to sleep in it.”
This patient vignette portrays the self-blame, suffering, and personal pain that a diagnosis of lung cancer may precipitate in patients who smoked cigarettes for a significant part of their life. Lung cancers are the leading cause of cancer deaths in the United States.1 “Lung cancer is classified as small cell (14%) or non small cell (84%) for the purposes of treatment. Based on type and stage of cancer, as well as specific molecular characteristics of cancer cells, treatments include surgery, radiation therapy, chemotherapy and targeted therapies.”1 However, oncology professionals often do not have the resources to address the psychosocial distress of this population.
This article describes the stigma that may be associated with a lung cancer diagnosis and its impact on body image, self-perception, and coping. Also explored are ways in which this stigma may be alleviated by the multidisciplinary oncology team, with particular emphasis on the important role oncology nurses play in the care of these patients.
Because smoking has been identified as a risk factor in lung cancer, the disease is often viewed one-dimensionally.2 Many people associate lung cancer with smoking, believing that patients with lung cancer caused their illness through their lifestyle choices and behaviors. This view may lead to bias against these patients. In addition, the stigma of lung cancer is often internalized by patients and translates to feelings of shame, fear, and guilt.3
Some healthcare professionals unintentionally fall prey to this bias, contributing to their patients’ stigmatization. The widespread belief that smoking is the sole cause of lung cancer with the blame placed on the individual may obfuscate the suffering of people living with lung cancer.
The Physical Effects of Smoking
Patients with lung cancer face increased discrimination as a result of the physical effects of smoking. Nonsmokers may be judgmental of lung cancer patients. The physical signs of smoking, including coughing, the lingering scent of smoke, and stained teeth, are often considered repulsive by nonsmokers. This perception is compounded by the media’s antismoking campaigns. Although the goal of the media is to deter people from smoking, an unanticipated consequence is to further stigmatize patients with lung cancer.
Unfounded Nature of the Lung Cancer Stigma
The many causes of lung cancer
There is a proved correlation between smoking and lung cancer, but the causes of lung cancer are complex and manifold. An estimated 15% of people diagnosed with lung cancer have never smoked,4 and a total of 60% of patients are people who have either never smoked or quit years ago.5 Among cancer patients, there is a divide between the smokers and the never-smokers. Frequently, never-smokers wish not to be associated with smokers. They view themselves as having an unfair diagnosis and feel compelled to defend themselves when confronted with the stigma of lung cancer.2,6
Lung cancer has been linked to environmental factors, including exposure to radon, asbestos, and other toxins. Exposure to radon is the second leading cause of developing lung cancer. “Genetic susceptibility plays a contributing role; especially in those who develop lung cancer at a younger age.”1 In education programs for the public about lung cancer, it is vital to include that there is a complex network of factors leading to a lung cancer diagnosis.
Smoking before the health risks were known
The stigma of smoking unfairly attributes blame to those who have lung cancer for allegedly self-inflicting their disease. Cigarette smoking became increasingly popular in the 1960s. At that time, people living in the United States were somewhat unaware of the long-term health risks of smoking. Only relatively recently has the public been made aware of the health risks associated with tobacco use.
Today, many people living with lung cancer are those who smoked at a time when smoking was not only accepted but was also considered chic and cool.2 Some of these individuals have since quit, but many live with the long-term effects of their prior lifestyle.
Because of the addictive nature of tobacco, once people begin smoking, many find it difficult, if not impossible, to quit.7 Smoking is an extremely powerful addiction that is difficult to overcome because the nicotine creates a physical dependence in the smoker.8
Lung Cancer Impact and Stigma
The physical and psychosocial impact of lung cancer stigma
People living with lung cancer may experience changes in their activities of daily living (ADLs). Lung cancer and its treatment may cause shortness of breath, fatigue, loss of strength, and treatment-related side effects. In addition to dealing with the physical limitations of lung cancer, patients may experience psychosocial challenges regarding their self-image and body image, often compounded by the stigma of the disease.
The physical changes that arise from lung cancer and its treatment are noticeable not only to patients with cancer but to their social network as well. These restrictions in ADLs and physical functioning are daily reminders of their cancer.
Transformations in one’s physical self, such as weight loss, changes in one’s voice, and coughing and wheezing, can result in changes in perception of body image. For many lung cancer patients, difficulties in adapting to these changes can be amplified by the stigma of lung cancer. Changes, from appearance to feelings and thoughts, can have unexpected consequences on body image and self-perception. As suggested by Fingeret and colleagues, “It would be ideal to discuss body image with every patient during each encounter but given the infeasibility of this goal, it is important to focus on patients whose disease or treatment causes significant self-perceived changes in physical appearance or function.”9 Living with lung cancer brings changes in self-perception not only through physical and psychosocial alterations but also through the stigma associated with the disease. Low self-esteem may often lead to sadness, depression, social withdrawal, and distress. For the oncology nurse, understanding the impact lung cancer may have on patients’ body image and self-esteem is important in helping patients access needed psychosocial support programs and services.
The psychological impact of lung cancer stigma
In addition to lowered self-esteem and body image challenges, those living with lung cancer often face increased psychological challenges, especially if, as mentioned, the stigma of lung cancer has been internalized. Roughly 33% of lung cancer survivors have a negative view of themselves and may feel responsible for their diagnosis, which may lead to higher levels of guilt, shame, anxiety, and depression. Approximately 25% of all patients with lung cancer experience clinical depression at some point during their cancer trajectory.10
Oncology nurses are at the forefront of administering oncology care and support. They are often delivering bedside care at the point of diagnosis or during different phases of patients’ treatment. It is vital for oncology nurses to recognize these symptoms of sadness and depression in their patients and to understand that patients’ feelings of shame, guilt, and embarrassment are intertwined with their quality of life.
Access to treatment for lung cancer patients
People living with lung cancer and experiencing its stigma often do not report symptoms and delay seeking treatment and help. Reluctance to seek medical intervention has significant consequences. When medical help is sought early, there are significantly greater treatment options with potential for improved prognosis and survival outcomes.
The incidence and death rates for lung cancer have been declining in part due to changes in “patterns of smoking uptake and cessation.”1 Subsets of patients with lung cancer are benefiting from the novel treatment approaches that have recently been developed.11 Decreasing delays in early detection may also improve survival.
Impact on funding for lung cancer research
The stigma of lung cancer not only impacts the well-being of patients but also influences federal and private funding. Lung cancer funding and research lag far behind those of other cancers in spite of its being the leading cause of cancer deaths. Many have attributed this disparity to the stigma of lung cancer, the “blame-the-victim” attitude that results in limited funding for lung cancer research. This stigma has been acknowledged by medical professionals, advocacy groups, scholars, and the media. While there is recognition of the existence of stigma for lung cancer patients, research evaluating its impact is limited.2
Statistics show that the National Cancer Institute and the Department of Defense spend far less on lung cancer research compared with other cancers. More information is needed to assess the impact that stigma generates in order to eradicate its detrimental bias toward research funding for lung cancer.4
Less grant money is available for lung cancer patients compared with other types of cancer. The fact that more funding and resources exist for so many other types of cancers exacerbates the lack of resources available for patients with lung cancer.2 Oncology nurses and other members of the healthcare team need to become advocates to promote increased funding for lung cancer research and the development of resources for these patients and their caregivers.
Overcoming the Stigma
Educating the public
One way of overcoming stigma is through increasing awareness and education. Education about the complex factors that may lead to a diagnosis of lung cancer, including environmental risks, genetics, and lifestyle, is needed to reduce the harmful psychological and physical effects of the associated stigma. Understanding the psychosocial sequelae that the stigma of lung cancer places on patients and their caregivers is an important step toward eliminating bias among healthcare professionals who are much needed to advocate for these patients and their caregivers.
Gaining support of public figures and prestigious institutions
The stigma of lung cancer is amplified by inadequate support from public figures and institutions. Though the lung cancer cause has been championed by such celebrities as Dana Reeve and S. Epatha Merkerson, support has been on a smaller scale. In contrast, AIDS was extremely stigmatized until many Hollywood celebrities began speaking out. Breast cancer stigma was diminished when Betty Ford came forward with her diagnosis in 1974,4followed years later by Nancy Reagan. In both cases, having multiple, vocal celebrity endorsements boosted the public profile of these diseases and encouraged support, greater awareness, and increased federal research spending.
In addition, smoking is becoming much less common in the public sphere. Workplaces and restaurants in the United States and globally are increasingly becoming smoke-free environments due to advocacy groups. Elected officials, for example, former Mayor Michael Bloomberg of New York City, extended smoke-free environments to include public spaces, parks, and beaches. These are efforts to reduce exposure to secondhand smoke and discourage smoking.
Advocacy for lung cancer faces a tougher battle. With higher mortality rates, few patients and their family members are able to stay the course as long-term lung cancer advocates. In addition to family members, oncology nurses, and other members of the healthcare team and their institutions must fill these gaps, and become strong lung cancer advocates, ensuring that patients receive high-quality and compassionate care.
Using the Internet for health communication
Patients with stigmatized illnesses such as lung cancer may avoid seeking medical attention or health education.12 Too often, lung cancer is diagnosed in its later stages. Information and education are imperative in receiving state-of-the-art medical care for people living with lung cancer. Understanding what symptoms to look for and what questions to ask, and maintaining open lines of communication with family, friends, and healthcare professionals contribute to timely treatment and decreased feelings of stigmatization.
The Internet can be a useful tool for health education and outreach. A national survey conducted in 2005 compared people with a self-reported stigmatized condition with people having at least one other chronic illness. The survey found that the respondents with stigmatized illnesses were significantly more likely to use the Internet for health information research, to have communicated with clinicians about their condition through the Internet, and to have increased utilization of health information based on information found on the Internet. The results from this study suggest that the Internet is a valuable health communication and education tool for those who are affected by stigmatized illnesses.12 Oncology nurses can take the lead in providing patients and their loved ones with reliable and credible websites to obtain information.
The stigma of lung cancer can have an adverse psychosocial impact on patients and their caregivers. One way to cope with lung cancer is to take advantage of support programs and resources. These support programs are provided by general cancer organizations, lung cancer–specific organizations, and hospital settings. See on this page a list of reliable and well-vetted websites that provide support and education for patients, their caregivers, friends, and healthcare professionals.
The role of lung cancer support groups
The organizations on this list provide important information about free support groups, counseling, educational programs, publications, financial assistance, and other services. The information and resources these organizations offer help connect people to a community of patients with lung cancer and healthcare professionals.
Fostering communication within a community of lung cancer patients is another method of overcoming the stigma. Support groups provide psychosocial support for people living with lung cancer and are a wonderful way for people to share their experiences. Promoting an environment where people feel comfortable and safe communicating their worries helps to break the cycle of silence that people living with lung cancer experience.
More lung cancer support groups are needed, as these resources are not widely available for patients. Often, patients with lung cancer attend support groups for other types of cancers. But these meetings may not be as effective, as cancer is specific to location of the disease.2 Despite the positive role of support groups, participation of patients with lung cancer in available groups remains low.
According to a study done in 2010, low attendance may be due to disparities between patients and facilitators about support program logistics—including preferred location, type of facilitator, and content.13 For instance, the study found that patients with lung cancer preferred programs held in hospitals, whereas facilitators preferred groups in a community setting. Patients preferred facilitation by trained health professionals, whereas facilitators preferred volunteers. Patients preferred the focus of the group to be on providing cancer information rather than providing emotional support, whereas facilitators preferred the opposite. These differences may explain the poor attendance at existing support groups by lung cancer patients. Other factors that pose additional barriers to attending on-site support programs include the rigors of travel, the costs of travel, parking concerns, fatigue, family or partner obligations, and child care.
To encourage participation, support groups need to be tailored to the needs of patients and their caregivers. Increasingly, groups are being offered as telephone support groups or online groups to facilitate participation and overcome the physical barriers and costs of travel to attend on-site groups. If groups are held at hospitals or in community settings, it is recommended that a brief needs assessment be conducted to determine the preferences of patients and caregivers for the site or location of the group, its frequency, as well as the focus of the group as psychoeducational or support or both.
The Important Role of the Oncology Nurse
Oncology nurses provide important and enduring support for patients. Oncology nurses not only have greater interaction with the patient than any other member of the oncology team, they are often the patient’s first line of support. Oncology nurses are in a critical position to provide the necessary psychosocial support patients living with lung cancer need.
Below are some tips and suggestions that oncology nurses can use in helping patients with lung cancer cope with their diagnosis.
Nonjudgmental approach to lung cancer patients
It is first and foremost essential for oncology nurses to debunk any bias they may have toward patients with lung cancer. It is important for oncology nurses to understand that stigma toward this population exists, but is unfounded: there are many mechanisms for developing lung cancer, and smoking, for those individuals who smoke, is a highly addictive habit and difficult to quit. It is also important for nurses to recognize that the stigma associated with lung cancer may be hurtful for patients living with lung cancer.
Smoking cessation programs
Even after a diagnosis of lung cancer, it is possible to improve survival rates and quality of life by ending tobacco use. Smoking cessation programs play a key role in helping patients with lung cancer achieve these goals. According to one study, although there are many effective treatments available to help smokers quit, persistent efforts through repeated contacts are necessary to achieve long-term cessation. Oncology nurses interact with patients frequently enough to engage in these necessary “repeated contacts.”14
Due to their frequency of contact with patients, oncology nurses play an essential role in the identification of and intervention with patients struggling with tobacco dependence after their diagnosis. It is crucial for oncology nurses to take advantage of their unique position to try to help lung cancer patients stop smoking. There are many smoking cessation programs available to help lung cancer patients who wish to stop smoking; see the list on this page.
Helping lung cancer patients cope
Oncology nurses also play a key role in discussing quality of life with lung cancer patients. Nurses may focus on treatment and disease management, but it is important for oncology nurses to listen to patients’ concerns. In this way, nurses can help promote patients’ psychosocial adaptation to their diagnosis. Nurses’ supportive, nonjudgmental listening may lessen patients’ feelings of isolation. By empathic listening, oncology nurses may help patients with their worries. Oncology nurses can also help patients cope by providing educational materials, exploring life stories, discussing personal relationships, suggesting spiritual resources, and helping patients consider treatment and palliative care choices. These discussions afford vital psychological support for patients who have been newly diagnosed with or are living with lung cancer.15
In conclusion, it is imperative for oncology nurses to help patients with lung cancer overcome the stigma of this disease. As mentioned previously, patients with lung cancer often believe they caused their own cancers, leading to a negative self-image and psychosocial difficulties. It is therefore essential for oncology nurses to foster an environment of open communication among themselves and with patients and to discuss issues such as cancer causation as well as the patient’s feelings of guilt, shame, depression, and anxiety.16 Addressing the stigma of lung cancer is essential for those living with the disease. Through communication, education, and strategic campaigns, public opinion can be molded. Changes in public perception and the psychosocial burden placed on the individual begin in the hospital room with the oncology nurse.
1. American Cancer Society. Cancer Facts & Figures 2014. Atlanta, GA: American Cancer Society; 2014.
2. Conlon A, Gilbert D, Aldredge P. Stacked stigma: oncology social workers’ perceptions of the lung cancer experience. J Psychosoc Oncol. 2010;28(1):98-115.
3. Else-Quest NM, LoConte NK, Schiller JH, et al. Perceived stigma, self-blame and adjustment among lung, breast and prostate cancer patients. Psychol Health. 2009;24(8):949-964.
4. Huber B. Stigma of ‘smoker’s disease’ stifles fight against No. 1 killer, lung cancer. FairWarning. www.fairwarning.org/2012/11/stigma-of-smokers-disease-stifles-fight-against-no-1-killer-lung-cancer/. Published November 1, 2012. Accessed December 29, 2014.
5. Thomas S. Huffman couple fights lung cancer stigma, pushes for awareness. Atascocita Observer. www.yourhoustonnews.com/atascocita/news/huffman-couple-fights-lung-cancer-stigma-pushes-for-awareness/article_3ebfbe2a-ea13- 55a0-a08d-b6e28330f494.html. Published November 3, 2012. Updated November 7, 2012. Accessed December 29, 2014.
6. Schiller J, Goodman A. The stigma of lung cancer: never-smokers: a growing trend. Medscape Oncology. www.medscape.com/viewarticle/807904_4. Published July 18, 2013. Accessed December 29, 2014.
7. Schiller J, Goodman A. Are lung cancer patients to blame for their disease? Medscape Oncology. www.medscape.com/viewarticle/807904_1. Published July 18, 2013. Accessed December 29, 2014.
8. Cessation. American Legacy Foundation. www.legacyforhealth.org/our-issues/cessation. Accessed December 29, 2014.
9. Fingeret MC, Teo I, Epner DE. Managing body image difficulties of adult patients: lessons from available research. Cancer. 2014;120(5):633-641.
10. Eldridge L. Lung cancer: the bias, the stigma, the shame, blame and guilt. www.lungcancerfoundation.org/2013/06/lung-cancer-the-bias-the-stigma-the-shame-blame-and-guilt/. Published June 24, 2013. Accessed December 29, 2014.
11. Cooley ME, Lynch J, Fox K, et al. Lung cancer. In: Holland JC, Breitbart WS, Jacobsen PB, et al, eds. Psycho-Oncology. New York, NY: Oxford University Press; 2010:chapter 20.
12. Berger M, Wagner TH, Baker LC. Internet use and stigmatized illness. Soc Sci Med. 2005;61(8):1821-1827.
13. Devitt B, Hatton A, Baravelli C, et al. What should a support program for people with lung cancer look like? Differing attitudes of patients and support group facilitators. J Thorac Oncol. 2010;5(8):1227-1232.
14. Cooley ME, Sipples RL, Murphy M, et al. Smoking cessation and lung cancer: oncology nurses can make a difference. Semin Oncol Nurs. 2008;24(1):16-26.
15. Vondrasek J, Cody J. Nurses Key in Helping New Cancer Patients Overcome Fears. Michigan State University Today. http://msutoday.msu.edu/news/2012/nurses-key-in-helping-new-cancer-patients-overcome-fears/. Published February 28, 2012. Accessed December 29, 2014.
16. LoConte NK, Else-Quest NM, Eickhoff J, et al. Assessment of guilt and shame in patients with non-small-cell lung cancer compared with patients with breast and prostate cancer. Clin Lung Cancer. 2008;9(3):171-178.
The Journal of Oncology Navigation & Survivorship (JONS) recently conducted the following interview with Lillie D. Shockney, RN, BS, MAS, Administrative Director, The Johns Hopkins Breast Center; Director, Cancer Survivorship [ Read More ]