Nursing Issues in Dealing with Stigma and Disparities in Lung Cancer

Transcription

1 Nursing Issues in Dealing with Stigma and Disparities in Lung Cancer Tammy A. Allred, RN, OCN Multidisciplinary Thoracic Oncology Nurse Navigator UNC- North Carolina Cancer Hospital Disclosures: Board of Directors for NC Lung Cancer Partnership, Nurse Advisory Board Lily Oncology; Nurse Advisory Board Biodesix Oncology

2 Stigma of Lung Cancer They look at you with that look. I say, I never smoked. I always feel like I have to defend myself, but it s like people are looking at me and thinking that I did it to myself. Non smokers Suffer Cancer Stigma NPR, 6/29/09

3 I have lung cancer. Yes, I was a smoker until about 20 years ago, and I was weak and I smoked after 9/11. Peter Jennings ABC News, April, 2005

4 Famous African American s Who Fought Lung Cancer Ellington, Duke, 75; composer/band leader; lung cancer/pneumonia (May 24, 1974) Sophisticated Lady, It Don t Mean a Thing if It Ain t Got that Swing Hansberry, Lorraine, 34, playwright; lung cancer (1965) A Raisin in the Sun, To Be Young, Gifted, and Black Cole, Nat King, 45, singer, first African-American TV show host; died after surgery for lung cancer (February 15, 1965) The Christmas Song, Unforgettable Hobbs, Elsbeary, singer; throat and lung cancer (May 31, 1996) Bass singer with The Drifters Under the Boardwalk, On Broadway, There Goes My Baby Jones, Etta, 72; singer; lung cancer (Oct. 16, 2001) Oliver, Susan, 53, actress, author; lung cancer (May 10, 1990) Vina the slave girl in the first episode of Star Trek Owens, Jesse, 66, track star; lung cancer 1936 Gold Medal winner at the Berlin Olympics; first cigarette pitchman to target blacks (Lucky Strike) Rawls, Lou, 72, singer; lung cancer (January 6, 2006) WHO KNEW?????

5 Evidence Suggesting Shame, Blame, and Stigmatization of Patients with Lung Cancer Lung cancer patients report high levels of psychological distress Chapple et al, 2004 Under-utilization of psychosocial support services NSCLC patients reported higher levels of cancer related stigma than patients with breast or prostate cancer LoConte et al, 2008 PCP s reported important differences in oncology referral patterns, knowledge of chemotherapy benefits for lung vs. breast cancer patients. Wassenaar, et all 2007

6 "Black patients with early-stage lung cancer have lower five-year survival rates than white patients, and this difference in outcome has been attributed to lower rates of resection among black patients," the authors write. "Several potential factors underlying racial differences in the receipt of surgical therapy include differences in pulmonary function, access to care, refusal of surgery, beliefs about tumor spread on air exposure at the time of operation and the possibility of cure without surgery, distrust of the health care system and physicians, suboptimal patterns of patient and physician communication and health care system and provider biases." Of these, access to care is often considered the most important of factors underlying racial disparities. Racial Disparities In Survival Among Patients Diagnosed With Lung Cancer Examined ScienceDaily (Jan. 19, 2009)

7 Factors Associated with Stigmatization of Patients with Lung Cancer Provider self inflicted Community Perceived lack Media of effective treatments Unintended Consequences of Poor prognosis Anti-tobacco control and fear Policies other (lack of insurance and faith in healthcare)

8 Potential Consequences of Stigmatization of Patients with Lung Cancer Avoidance or delay in seeking medical care - Fear of the finger-wagging, I told you so lecture - Once you have symptoms, nothing can be done for lung cancer, so why bother seeking treatment. Increased illness-related distress/relationship conflict - I got what was coming to me. No one to blame but myself - Every time I see him smoking, I think why should I take care of him if he can t even take care of himself Lack of illness disclosure - Sometimes I wish I had breast or prostate cancer, these are much more acceptable dinnertime topics. POOR QUALITY OF CARE??

9 Potential Racial Based Barriers 1. Access to care no local MD s to provide the care and having to travel extensively 2. Refusal of surgery or treatment due to fear or religious belief 3. Beliefs about tumor spread on air exposure at the time of operation 4. Distrust of the health care system and physicians (some base on the Tuskegee Syphilis Experiment famous clinical study that was to study the natural progression of untreated syphilis in poor, rural black men who thought they were receiving free health care from the government.)

10 Potential Racial Based Barriers 5. Suboptimal patterns of patient and physician communication (judgement by either) -HCP pressured to fit more pt visits in shorter times providers spend less time Make snap judgements providers judge based on first impression of person quick Glance at chart or personal appearance. Influences providers judgement about whatpt wants and doesn t want and how reliable the pt will be. 6. Health care system and provider biases Patients may also assume, based on a snap judgment, that the provider will not respond well to being asked questions, that the provider does not care about the patient, or that the provider is not going to be helpful.

11 Potential Racial Based Barriers 7. Lack of insurance and fear of costs and burden - 13% of white American adults under 65 are uninsured, 21% of African Americans same age without. Decide not to get tx because they can t afford it or difficult time finding hospital that is willing to provide treatment without insurance. 8. Provider is of a different race or culture than the patient, these breakdowns in communication are more severe and have more negative results in terms of the quality of care a patient 9. LANGUAGE BARRIERS!

12 Stigma of Lung Cancer FACT OR FICTION? Lung Cancer is a smokers disease. FICTION... Although the major risk factor of lung cancer is smoking, approximately 1 in 5 people with lung cancer have never smoked.

13 Stigma of Lung Cancer FACT OR FICTION? Only old people get Lung Cancer. FICTION... Whether you are in your 20 s or in your 80 s, ANYONE can get Lung Cancer.

14 Stigma of Lung Cancer FACT OR FICTION? Lung Cancer is a death sentence. FICTION... It does not have to be. New treatments are being developed all the time. If caught in the early stages, it may be curable (67% of Stage I or 40-50% of Stage II).

15 No one deserves Lung Cancer 15% of 200,000 men and women who develop cancer have no history of smoking. 50% of patients diagnosed have had a past history of smoking but had given up smoking years or decades earlier. Regardless of someone s smoking habits or history, NOBODY DESERVES CANCER!

16 Lung Cancer Facts Did you know... 50% of Lung Cancers occur in people who have quit smoking Radon exposure is 2 nd leading cause, and the leading cause in never-smokers More never-smokers die of lung cancer, than from AIDS, liver, or ovarian cancer. Finds are now showing that estrogen plays a part in causing lung cancer in young females

17 Lung Cancer Facts Did you know... Will claim 163,000 lives this year. Smokers and non-smokers Approximately 213,000 (98,000 women/114,700 men) in the US will be diagnosed this year. Quitting smoking reduces chance of developing cancer, however a significant risk can remain for 20+ years after stopping. From: North Carolinians Against Lung Cancer Website

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19 How can we start the change and rid the stigma? Education to communities, primary care physicians, nurse meetings, schools, community groups, At Health fairs- community groups, schools, churches Outreach -provide patients with tools to learn how to become self advocates - how to recognize symptoms and how to make changes in own health.

20 Acceptance Encourage your patients to learn everything they can about their disease. Encourage them to be advocates for their treatments and their health! The best prescription is knowledge. C. Everett Koop, MD, Former US Surgeon General

21 Resources UNC Lineberger Cancer Center American Lung Association American Cancer Society National Cancer Institute Cancer Care National Lung Cancer Partnership Never Smokers with Lung Cancer Lung Cancer Alliance I CAN COPE American Cancer Society ACS-2345 NC Radiation Protection Felix Fong (State Radon Contact) felix.fong@ncmail.net

22 What Cancer Cannot Do Cancer is so limited... It cannot cripple love. It cannot shatter hope. It cannot corrode faith. It cannot eat away peace. It cannot destroy confidence. It cannot kill friendship. It cannot shut out memories. It cannot silence courage. It cannot reduce eternal life. It cannot quench the spirit. Author unknown