Background: Health-related stigma can contribute to health inequities and poor outcomes. To address stigma-related issues in clinical oncology care, healthcare providers can identify stigma in clinical practice and apply strategies that reduce stigma.
Objectives: The aim is to identify stigma-related issues experienced by patients with cancer and to present strategies that address stigma-associated barriers to quality clinical oncology care.
Methods: This article presents three case studies that illustrate stigma-associated issues and strategies to address those issues in clinical oncology care.
Findings: Identifying intersectional stigmas in clinical care, each case study includes the patient’s background information, a social assessment, and a clinical update, as well as an example of dialogue between the nurse and patient. Each case study ends with commentary and questions to further illustrate stigma-related issues in clinical oncology care. Finally, supporting the case studies, the toolbox includes inclusive language; principles of universal precautions to apply to stigma in clinical oncology care; and communication components, strategies, and resources to reduce stigma in clinical oncology care.
Stigma can significantly affect the clinical care of patients with cancer. It can appear and be manifested in many ways—among them, discriminations associated with gender, race, ethnicity, culture, and sexual orientation and identification; socioeconomic status and accompanying barriers to health care; and individual clinician behaviors and attitudes that are insensitive at best and abusive at worst to patients and their caregivers (Fogarty International Center at the National Institutes of Health, 2021; Williams et al., 1997).
For patients with cancer, stigma also can be associated with their cancer diagnosis and plan of care. Therefore, to better address stigma that affects patients with cancer and their accompanying healthcare challenges, oncology nurses can practice from a knowledge base about stigma and use effective strategies to address stigma in clinical care (Weiss et al., 2006).
The most beneficial stigma-addressing strategy in clinical oncology practice is effective, consistent use of appropriate and sensitive language. This masterful use of language is prompted by listening to the patient and being aware of the patient’s experience (Volkow et al., 2021). Applying communication competencies along the continuum of care is one area in which oncology nurses excel. These competencies are a foundation of clinical oncology practice along with the core competencies of clinical assessment, technical clinical skills, side effect management, patient education, and psychosocial support of patients and their caregivers (Oncology Nursing Society, 2016, 2017; Young et al., 2020).
To educate and equip the oncology nurse in practice, this article presents the following three case studies to illustrate communication issues and challenges in the context of stigma in clinical oncology care delivery.
The first case study focuses on Max, who is living with HIV, in recovery from a substance use disorder (SUD), and diagnosed with Hodgkin lymphoma. Next is Manuel, who is newly diagnosed with lung cancer; English is not his first language. Manuel quit smoking 5 years ago, after smoking a pack of cigarettes per day for 20 years. The last case study profiles Rosa, a patient diagnosed with cervical cancer and affected by barriers associated with social determinants of health (SDOH).
To address stigma in the clinical care of these patients, verbal communication involves words in written and spoken formats; communication includes internal thoughts and occurs formally and informally. Each case study identifies intersectional stigmas that people diagnosed with cancer may experience in clinical encounters.
The structure of each patient case study includes background, a brief verbal patient–nurse exchange, social assessment, and clinical update. Each case study ends with a debriefing commentary and critical thinking questions about the case study. Finally, contributing to a toolbox about stigma in clinical oncology care, the article includes a variety of stigma-addressing strategies and resources (see Toolbox Figure 1, Toolbox Table 1, and Toolbox Figure 2).
Max is a 35-year-old Black transgender female who was diagnosed with HIV in 2017. They started antiretroviral therapy and were adherent before being lost to follow-up two years later. In the spring of 2020, Max reluctantly presented to the emergency department with a cough, dyspnea, and bruising, afraid of how they would be treated by healthcare personnel. In the past, providers had called them names and asked inappropriate and embarrassing questions. They were admitted for further workup after a physical examination revealed enlarged lymph nodes. A left axillary lymph node biopsy confirmed nodular sclerosing Hodgkin lymphoma. Following discharge, Max presented to the outpatient oncology clinic to start treatment with doxorubicin hydrochloride, bleomycin sulfate, vinblastine sulfate, and dacarbazine (ABVD).
“Hi, I’m Sam—my pronouns are they, them, theirs, and I am a nurse navigator, here to help guide you through your cancer journey. How would you like me to address you?”
“People call me Max,” mumbled Max.
“Max, it is nice to meet you. I realize a cancer diagnosis is very scary by itself, and you may have had negative healthcare experiences in the past. I always like to share my son’s journey—they are also transgender, and so I understand how difficult encountering the healthcare system can be.”
During the intake assessment, Sam learns Max’s father was not involved and their mother had a history of depression and an SUD. Max spent most of their childhood in the foster care system, stopped attending school in the eighth grade, and is currently unemployed. Sam asks about Max’s previous and current substance use, including nonmedical medication use. Max reveals they have been in recovery for the past five months; they previously snorted cocaine and heroin. Sam seizes the opportunity to have an honest and caring conversation with Max about the increased risk of substance use relapse related to the increased stress, anxiety, and depression from the new cancer diagnosis. Sam recognizes several identities that may be contributing to intersectional stigma as follows: race (Black), gender identity (transgender female), low socioeconomic status, low education, health illiteracy, SUD, and disease (HIV and cancer).
Treatment with ABVD was uneventful until the third cycle, which was complicated by prolonged hospitalization with Clostridium difficile. Persistent diarrhea with abdominal distention and painful cramping required IV hydromorphone and oral oxycodone for pain management. The inpatient nurse practitioner was aware of Max’s SUD history and had a serious discussion regarding the risk of relapse with them. Max was discharged with a short oxycodone taper.
Following hospital discharge, Max missed several appointments, mostly because of transportation difficulties. The primary medical team stressed that missing treatments would result in a suboptimal response. Two months later, Max returned for a follow-up visit. They were tearful; recently, their relationship had ended, and they were now homeless. Max denied recent substance use, although they admitted to taking a “pill for pain” from a friend a few days before. Urine toxicology was performed; however, the nurse suspected the sample may have been tap water. Therapy was changed to ifosfamide, carboplatin, and etoposide, with the intent to minimize missed treatments because it was administered every 21 days during an inpatient stay. During the hospital stay, the night shift nurse discovered a plastic bag with an unknown substance in the toilet; this was concerning for substance use. Urine toxicology later demonstrated opiates, fentanyl, and cocaine metabolites.
About 10 years ago, Sam began noticing more patients with substance use and was uncomfortable talking about their concerns directly with patients, worried about conflict and harm to the therapeutic relationship. Sam quickly realized these discussions were necessary to improve outcomes and has since integrated open, nonjudgmental conversations about substance use into their routine assessments. Sam visits Max in the hospital, stating that the urine toxicology results are concerning for relapse, and asks directly about substances used, method of administration, and frequency. Sam expresses worry about possible opioid overdose and arranges for intranasal naloxone and fentanyl test strips to be provided at discharge. The social worker provides additional information regarding local drug and alcohol treatment centers, including residential programs, as well as information on shelters for unhoused individuals.
The positron-emission tomography scan after four cycles of ifosfamide, carboplatin, and etoposide continued to show persistent disease. The treatment was changed to brentuximab. After the third brentuximab treatment, Max was lost to follow-up.
Ten months later, Max contacts the team. They report using IV heroin daily in addition to cocaine and marijuana. They are off their medication for HIV. They are unhoused. They are worried about their lymphoma and are interested in treatment for their SUD. The clinic nurse schedules an appointment for later that week. They present in distress, diaphoretic, and with visible cervical lymphadenopathy. Max reported last using heroin the night before; however, this likely was immediately before the appointment. Max is admitted to the hospital from the clinic. Buprenorphine is started by the palliative team to manage their cancer-related pain and opioid use disorder. Sam visits Max a couple of days later, and they are feeling much better.
Stigma can be a significant barrier to seeking and receiving clinical care; Max delays medical care because of previously experienced health-related stigma and discrimination. The nurse navigator, Sam, recognizes that Max is at risk for experiencing discrimination related to intersectional stigmas from multiple characteristics and identities. A universal precautions approach to reducing stigma of all origins can improve health outcomes (Treloar et al., 2022).
Practices to reduce stigma can be implemented every day in routine care. Communication among clinicians, patients, and support systems is negatively affected by stigma, including cancer-related stigma (Akin-Odanye & Husman, 2021). Incorporating sensitive and respectful language into routine oncology care can eliminate or reduce communication barriers to improve interactions (see Case Study Figure 1). Language influences perceptions and judgments; providers can maintain clinical “judgment-free” terminology to maximize accuracy and reduce blame and fault. Oncology health team members may benefit from ongoing training to refresh and repeat, versus a single curricular experience.
Manuel is a 50-year-old male who presents with hemoptysis. He quit smoking 5 years ago after a 20 pack-year history. Imaging is concerning for a suspicious pulmonary nodule. Pathology confirms squamous cell carcinoma with programmed cell death–ligand 1 greater than 50%.
Further workup determines he has metastatic disease involving his right adrenal gland, two small lesions in his liver, and a bone lesion in his lumbar 2. He is asymptomatic other than the hemoptysis; he denies pain. The nurse/nurse practitioner provides Manuel with health information about his diagnosis and treatment using a Spanish interpreter. Nursing staff also provide educational handouts in Spanish. All his questions were answered to his satisfaction.
Because of hemoptysis, he received a short course of radiation to his lung followed by four cycles of carboplatin, paclitaxel, and pembrolizumab.
(As Manuel is called into the examination room for his clinic appointment, he is fidgety and appears distracted, focusing on a conversation he continues on his mobile telephone.)
Manuel (in Spanish): “Why do I have to repeatedly answer questions about how much I smoked each time I come to clinic? I need to get back to work. You guys are always late seeing me. How long will this appointment take?”
Nurse: “Manuel, I am the clinic nurse and have some questions for you. I want to hear what you have to say so we can give you good care and take care of your symptoms. I also want to ask if there are any feelings about your cancer or treatment that we need to talk about to help support you.”
(Despite the nurse’s assessment questions, Manuel is reluctant to discuss his feelings or relay any new or ongoing symptoms. From the assessment, the clinic nurse also confirms that Manuel has not reached out for support from friends, family, or the community.)
Manuel is divorced and shares custody of his two teenagers, ages 14 and 17 years, with his ex-wife. The children primarily live with their mother but stay with him on weekends at the townhouse he rents with another divorced father. Manuel works as a construction project manager, working from home and at on-the-job sites. Between work and his children, he does not have much time for seeing his two or three close male friends or dating women. Manuel has a large extended family; however, he has not disclosed his cancer diagnosis to many people because he does not want to be stigmatized as a “cancer patient.”
After two rounds of chemotherapy, Manuel calls in to the triage nurses complaining of chest pain and shortness of breath. They order a stat computed tomography (CT) scan of the chest and find multiple pulmonary embolisms. He starts apixaban daily.
After the four cycles of carboplatin, paclitaxel, and pembrolizumab, restaging CT scans demonstrate a good response. Maintenance pembrolizumab 200 mg is started every three weeks, with the goal to continue this for two years.
He starts maintenance 200 mg of pembrolizumab every three weeks for two years. After his fourth cycle of pembrolizumab maintenance, he complains of transportation issues and difficulty leaving work early for his appointment. Because he is tolerating treatment well, his dose of pembrolizumab is changed to 400 mg every six weeks.
After 10 months on maintenance, Manuel develops a dry cough and dyspnea on exertion. Pulse oximetry demonstrates oxygen saturation at 91% on room air, decreasing to 85% with activity. The chest CT appears to show pneumonitis, a frequent immune-related adverse event. Manuel was treated with steroids (prednisone 60 mg daily) while treatment was paused. Once symptoms improved, the prednisone was tapered by 10 mg per week. He resumed pembrolizumab after two months and completed the maintenance without any further complications.
Unfortunately, 18 months after completing maintenance treatment, CT scans are concerning for progression of Manuel’s lung cancer, with an increase in his lung mass and new liver lesions. Based on a repeat biopsy, pathology results are consistent with his original diagnosis, squamous cell carcinoma with programmed cell death–ligand 1 greater than 50%. The nurse practitioner identifies that he is eligible for a clinical trial; however, Manuel declines. Because the study involves additional images and appointments, he will need to miss more work, and he does not want to be a “guinea pig.” Because Manuel is not experiencing symptoms, his oncology team prescribes docetaxel and ramucirumab every four weeks. After three cycles, reimaging demonstrates stable disease.
The oncology nurse practitioner recognizes that Manuel is a patient with lung cancer rather than a “lung cancer patient.” Stigma associated with a lung cancer diagnosis includes the patient perceiving judgment from providers, family, and friends (because of a smoking history), as well as issues of fear, anxiety, and guilt related to the diagnosis and treatment (Hamann et al., 2018).
In the case of Manuel, who is a Spanish speaker, providers note his behavior and nonresponses during his clinic visits. Therefore, to better communicate with Manuel, providers use a universal precautions approach; communication is person-first and inclusive. All providers use language that is supportive, respectful, and free of judgment. A universal precautions approach recognizes the multifactorial and intersecting stigmas, such as smoking history, lung cancer, English as a second language, and divorce, that may be negatively affecting Manuel’s clinical care (Carter-Harris et al., 2014) (see Case Study Figure 2).
Rosa is a 53-year-old widow, G3 P2 (gravidity = pregnancies; parity = pregnancies to a viable gestational age), who until recently has had stable health. From her most recent clinic visit, her vital signs are stable (weight: 175 pounds; height: 5'5"). Rosa’s recent laboratory results indicate that she is prediabetic. She takes a multivitamin and an antihypertensive daily. Rosa rarely exercises but walks three blocks to and from the bus each day (she takes the bus to work).
Of note, she has been followed intermittently by a primary care provider (PCP), but because of her employer changing insurance coverage, she has had three PCPs in the past five years.
She pursued an appointment with her PCP because of more than six months of spotting—some days heavy. She is postmenopausal, with her last regular period three years ago. She also reports that during the past year she has lost 10 pounds and has had increased fatigue; during the past three months, she has had two urinary tract infections, which resolved after she increased her water intake.
Rosa was widowed five years ago but has occasional sexual relations with a neighbor in her apartment building; she revealed during the PCP’s assessment that intercourse has been painful of late.
From the PCP’s evaluation, she completed laboratory tests, an in-office Papanicolaou test, and pelvic examination. The PCP also ordered a CT chest and pelvis scan with contrast based on the abnormal, high-grade Papanicolaou test results. An outpatient cervical biopsy revealed cervical cancer cells.
Her PCP then referred her to a gynecologic oncology surgeon. After evaluation by the surgeon, Rosa was scheduled for a radical hysterectomy and selected pelvic lymph node dissection.
(Rosa arrives for her initial referral appointment with the gynecology-oncology surgeon. The clinic nurse observes that Rosa is quiet and appears to be overwhelmed by the staff members, who are mostly White and wearing white coats in the clinic environment.)
Rosa (speaking in English with some French Creole terms): “Sorry I am late; I am here to see the surgeon. I hope my insurance will cover the surgery, but I’m not sure. If not, I cannot pay for the surgery so I will go home and die.”
Nurse: “Where do you live, Rosa? What time did you catch the first bus to get to this appointment?”
Rosa: “At 7 am, I caught the #43 and then the #33 bus to get here for a 10 am appointment, and I was still late. I don’t know if I can find a way to get to surgery on time. Maybe I cannot get my surgery with you.”
From the nurse and social work assessment, Rosa is a U.S. citizen and a first-generation immigrant from the Dominican Republic. She states she speaks some English, but her primary language is Haitian Creole. She is single (widowed) and the mother of two sons aged in their 20s, who still live with her in a two-bedroom apartment.
For work for the past 12 years, she has been a quality control technician on assembly lines in medical device manufacturing. Her employer provides health insurance, but the insurance carrier has changed three times in the past five years.
She takes one bus to work, and her shift is 7 am to 4 pm Monday through Friday. She does not drive. She relays that she is concerned about missing work for her surgery and additional treatment because her employer only allows a maximum of three weeks of sick leave per year.
Based on pathologic review of specimens collected during surgery, Rosa was diagnosed with squamous cell cancer of the cervix. From pelvic lymph nodes harvested during surgery, three were positive for cervical cancer. Her presurgery CT chest and pelvis scan and positron-emission tomography scan were negative. Based on staging criteria from the FIGO (International Federation of Gynecology and Obstetrics) system, Rosa was diagnosed with stage IIB cervical cancer.
Because of the positive lymph node findings, Rosa was referred to a radiation and medical oncologist for further treatment decisions, which could include radiation to her pelvis and cisplatin-based chemotherapy. Further treatment decisions were paused until Rosa’s insurance coverage for referrals and further treatment could be established. Then, referral appointments were to be scheduled.
Addressing overt and subtle SDOH barriers that Rosa faces, the clinical nurse recognizes that these barriers can establish a stigmatized healthcare environment for Rosa. Therefore, to support Rosa’s access to care, rather than assigning her blame when she is faced with barriers, the oncology nurse communicates with Rosa with support from a tele-interpreter, who can translate in Rosa’s Haitian Creole language, which is familiar to Rosa. That communication includes first-person language in tone and emphasizes problem-solving (to resolution of the problem) and access to resources.
The nurse establishes a trusting relationship with Rosa and serves as her hub to access other resources in the healthcare system and community (see Case Study Figure 3). Among those contacts and resources, the nurse helps Rosa access the following:
Stigma-related barriers to clinical care can be prevalent in every patient exchange. In clinical oncology care, stigma-related barriers have many variations—among them, the patient’s diagnosis, past clinical or social history, cultural beliefs, family values, logistic challenges to receiving treatment, and one-on-one conversations between the nurse and patient.
To reduce stigma-related barriers in clinical care, oncology nurses can be aware of those barriers so that nurses can apply perceptive assessment to identify stigma in clinical practice. Then, nurses can implement strategies to reduce stigma in their care of patients with cancer, which can include sensitivity to patients’ perceptions of stigma, as well as effectively communicating with patients and their caregivers. One approach to reduce stigma-associated barriers in clinical care is to apply a universal precautions framework to care.
As presented in three case studies, this article provided examples of patients with cancer and stigma that affects their care. The article included commentary and questions about each case study to further illustrate stigma-related issues. Finally, in a clinical toolbox to address stigma-related issues, the article reviewed terminology, concepts, and inclusive language; principles of stigma-reducing universal precautions; and communication strategies and resources to reduce stigma in clinical oncology care.
Gretchen A. McNally, PhD, ANP-BC, AOCNP®, is a nurse practitioner in the Arthur G. James Cancer Hospital and Richard J. Solove Research Institute at the Ohio State University in Columbus; Megan Roy, MSN, RN, OCN®, is an oncology nurse navigator for thoracic malignancies in the Abramson Cancer Center at Penn Medicine in Philadelphia, PA; Caroline Etland, PhD, RN, CNS, ACHPN®, is an associate professor in the Hahn School of Nursing and Health Science at the University of San Diego in California; and Ellen Carr, PhD, RN, AOCN®, is a clinical oncology writer and past editor of the Clinical Journal of Oncology Nursing. The authors take full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. McNally can be reached at firstname.lastname@example.org, with copy to CJONEditor@ons.org. (Submitted August 2023. Accepted November 3, 2023.)
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