Black cancer patients navigating a health-care system of racial discrimination

Abstract

Background

Exposure to racial discrimination may exacerbate disparities throughout the cancer care continuum. Therefore, we explored how experiences of racial discrimination in the health-care setting manifest for Black cancer patients and how it contributes to racial disparities in cancer care.

Methods

This qualitative analysis used semistructured in-depth interviews with Black cancer survivors not on active treatment from May 2019 to March 2020. All interviews were audio recorded, professionally transcribed, and uploaded into Dedoose software for analysis. We identified major themes and subthemes that highlight exposure to racial discrimination and its consequences for Black cancer patients when receiving cancer care.

Results

Participants included 18 Black cancer survivors, aged 29-88 years. Most patients experienced racial discrimination when seeking care. Participants experienced racial discrimination from their interactions with health-care staff, medical assistants, front desk staff, and health insurance administrators. Exposure to overt racial discrimination in the health-care setting was rooted in racial stereotypes and manifested through verbal insults such as physicians using phrases such as “you people.” These experiences impacted the ability of the health-care delivery system to demonstrate trustworthiness. Patients noted “walking out” of their visit and not having their health issues addressed. Despite experiences with racial discrimination, patients still sought care out of necessity believing it was an inevitable part of the Black individual experience.

Conclusion

We identified that exposure to racial discrimination in the health-care setting is pervasive, affects health-seeking behaviors, and degrades the patient–clinician relationship, which may likely contribute to racial disparities in cancer care.

Despite strides toward racial equity, exposure to racism and discrimination for many minoritized groups is still pervasive (1). Racism is often manifested through overt discrimination and microaggression incidents (2). Overt racial discrimination stems from explicit and intentional prejudice, while microaggression incidents are more subtle, often stemming from implicit bias or automatic and unintentional racism (2). Regardless, racial discrimination is associated with poorer mental and physical health outcomes (3) and reduced activity in health-promoting behaviors (4). Repeated exposure to racial discrimination is directly correlated with mental health conditions such as depression and anxiety and the development of detrimental coping mechanisms such as hazardous alcohol and drug use, whereas exposure to racial microaggressions are correlated with greater self-reported stress and depression symptoms and lower levels of well-being and self-esteem (2). The biopsychosocial model of stress posits that exposure to racism results in exacerbated psychological and physiological stress (5). Over time, these stress responses may influence health outcomes and contribute to existing health disparities for Black Americans (5).

More than one-third (36%) of Black adults reported they or household members experienced racial discrimination when they had seen a health-care professional (6). The most commonly reported types of racial discrimination included not being offered the best available treatment (Black respondents: 19%) and being denied or delayed access to health-care services and not being referred to specialists (Black respondents: 12%) because of being racialized as Black (6). It is estimated that 1 in 5 adults in the United States have experienced discrimination while receiving health care with racial discrimination the most commonly reported (1).

The prevalence of exposure to racial discrimination in cancer care is understudied. Black patients with cancer face considerable medical care disparities throughout the cancer care continuum. Although multilevel factors contribute to these disparities, exposure to racial discrimination while receiving cancer care may reduce the quality of care for this population. Despite existing literature, fundamental questions remain unanswered about how racial discrimination is related to health care and outcomes (7). Utilizing surveys or standardized methods to measure exposure to racial discrimination poses challenges such as ensuring adequate and comprehensive assessment of the key stressful components of discriminatory experiences (7). More qualitative work is needed to understand how exposure to racial discrimination is uniquely characterized in medical settings, particularly with cancer care (8). Therefore, the purpose of this study was to explore how experiences of racial discrimination within cancer care manifests for Black patients with cancer and how it might contribute to disparities in cancer care and outcomes.

Methods

We conducted semistructured in-depth interviews with Black cancer survivors. Our study was approved by the University of Southern California’s institutional review board. This study adhered to the Consolidated Criteria for Reporting Qualitative Research reporting guideline.

Self-identified Black or African American cancer survivors who were not on active cancer treatment were recruited from survivorship support groups and Facebook between May 2019 and March 2020. Social media and community recruitment allowed survivors from multiple treatment facilities and insurance plans in the Los Angeles region to enroll. Informational flyers containing the purpose of the study, eligibility criteria, and staff contact information were sent to survivorship support groups (Los Angeles Cancer Network, Cancer Connect Colon Cancer Community, and Colon Cancer Alliance) and via targeted advertising on Facebook to geographic locations in Los Angeles. After confirming eligibility via telephone, interviews were scheduled in a private office space at the University of Southern California or via phone. Verbal consent from all participants was obtained prior to the interview. All participants were interviewed in English and were given a $40 gift card. Interviews lasted 45-60 minutes. The interviews and analyses were conducted by 3 research assistants who self-identify as Black or Hispanic.

Participants were asked during the interviews to provide an overall rating on a scale of 1-10, with 1 being the worst and 10 being the best, for different aspects of their care (primary care clinician, specialist, pharmacy, and health plan) (9). Participants were then asked to elaborate on each rating focusing on the interactions with their clinicians. Interviews did not include questions that were specific to exposure to racial discrimination and experiences emerged naturally. Interviews were recorded using a digital audio device and professionally transcribed verbatim. The interview team met regularly to discuss impressions and general thoughts about the interviews. We concluded the interviews once we reached saturation, a point at which the study team felt that no new themes were emerging. All transcripts were uploaded into Dedoose version 4.12. Authors Garrett and Ma independently coded a set of transcripts and met to refine the codebook by revising definitions to capture emerging themes regarding exposure to racial discrimination. Interview transcripts were analyzed using a deductive constant comparison approach to establish and modify codes based on the type of racial discrimination that was occurring (microaggressions or overt), where the racial discrimination was coming from, and its subsequent consequences for the patient who was experiencing it. Initially, we based our analysis of the transcripts on the grounded theory of the biopsychosocial model that hypothesizes microaggressions and racism can be embodied and impact physical and mental health. We then used an inductive constant comparison approach by expanding on the theory to suggest that health-care discrimination and racism could also impact behaviors important to cancer treatment and care. We coded co-occurrences of racial discrimination and effects using Dedoose software analysis by identifying high occurrence of effects within the racial discrimination category. Linkages between exposure to the type of racial discrimination and its subsequent consequences were then explored across thematic categories, and exemplary quotes to represent each theme were selected.

Results

Participants included breast, colorectal, and prostate cancer survivors, 15 women and 3 men, aged 29-88 years. A total of 15 interviews were conducted in-person, and 3 were conducted over the phone or Zoom. A summary of racial discrimination experienced by Black cancer patients is shown in Table 1. Overall, most patients experienced some form of racial discrimination, and only 4 patients were not coded for any experience of racial discrimination. Microaggressions occurred the most, but there were instances of exposure to overt racial discrimination. Participants experienced racial discrimination from their interactions with physicians, health-care staff, medical assistants, and even health insurance administrators.

Table 1.

Summary of racial discrimination experienced by Black patients with cancer

Racial discrimination type	Definition	Examples
Microaggressions	Microinsults, microinvalidation, and microassaults that occur in personal interactions and the environment that often stem from automatic and unintentional racism	Patients expressed that they felt they were being treated differently from other patients, for example, “African Americans don’t get the highest standard of treatment.” Patients implied that because of their race they felt that the clinician was insensitive to their concerns and did not provide them all information about treatment and care options. Patients felt they were forgotten about in the waiting room, despite checking in first.
Overt	Behavioral manifestation of negative attitude, judgment, or unfair treatment toward members of a racial group; explicit and intentional prejudice	The clinician referenced the Black Community as “You People.” The clinician said “most of you” cannot afford a particular chemotherapy treatment.

Descriptions of microaggressions in the health-care setting

Microaggressions manifested through subtle behavioral actions that made patients feel like they were being treated differently because of their race

Black patients were left in the waiting room while other patients were seen first. Some clinicians dismissed patients’ health concerns when patients were communicating their symptoms or health problems, and patients likened their encounters with clinicians to a “business transaction.” These incidents with health-care staff made them feel dismissed and uncared for. For example, one patient shared that during their chemotherapy treatment, their ethnicity was wrong on all paperwork. The mistake kept occurring even as they let multiple health-care staff members know about the discrepancy. They stated when reflecting on the experience: “I don’t think you thought it was that important because you looked at me and knew I wasn’t White [.]”

Descriptions of exposure to overt racial discrimination in the health-care setting

Exposure to overt racial discrimination was rooted in racial stereotypes and manifested through verbal insults

One patient shared that her primary care clinician stated “you people” when referencing the Black community. Another patient described that her clinician told her “you should’ve known” when she was first diagnosed with diabetes. Another patient had a clinician tell her that “most of you” do not receive a particular treatment because “you cannot afford it.” All phrases were in reference to the Black community and subsequent racial stereotypes.

Consequences of racial discrimination: microagressions and overt

Exposure to racial discrimination was closely associated with patients expressing they did not trust their clinician

A summary of the consequences is shown in Table 2. Patients experienced racial discrimination by having their concerns dismissed or not met with the same concern by clinicians. In some instances, racist behavior by the clinicians impacted the ability of the health-care system to demonstrate trustworthiness and limited the options available to patients to make informed decisions about care. Patients felt their clinician was not giving them all the necessary information. These experiences contributed to a lack of trust between patient and clinician as they felt they did not have their best interest in mind. One patient shared: “I guess maybe he thought I was Black and stupid […] that I’d just go with anything.”

Table 2.

Summary of consequences of racial discrimination for Black patients with cancer

Consequences of experiencing racial discrimination (microagressions or overt)	Examples
Mental health
Emotions	Patients utilizing emotionally charged words such as “degrading,” “frustrating,” or “disheartening” to describe their experiences within the health-care system
Stressors	Patients saying that they “dread” seeking care
Physical health	Not being screened for colorectal cancer, even after patient expresses symptoms and/or concerns to the clinician
Mistrust of clinicians	Refusing to follow medical recommendations
Healthcare utilization	Seeking care from the emergency room or urgent care to avoid the clinician “Putting off” seeing their clinician until it was “absolutely necessary” Leaving clinician’s office without receiving care because they felt they were forgotten because of their race
Behavior changes	Changing their appearance by wearing their “best clothes” and bringing a book to their appointment to gain respect of their clinician and health-care staff

Patients likened their exposure to racial discrimination to a “business transaction” that disregarded their values, opinions, or preferences. This led to patients refusing to select to recommended treatment or medical advice. One patient stated the following when referring to his interactions with his clinician about his treatment options: “But it was the way he said it that made me say, ‘No, […] I’m not doing the surgery even if that’s my only option […]’ because of the way he came at me with it.”

Exposure to racial discrimination served as a stressor affecting Black cancer patients’ mental well-being

Patients who experienced racial discrimination had negative feelings and emotions afterward. Patients used words such as “frustrating”, “disheartening,” and “angering” to describe their experience. Although the experience occurred in the past, describing the experience with racial discrimination evoked a response that suggested negative associations and feelings still lingered. Exposure to racial discrimination often centered on patients feeling there was not an established relationship with the clinician, the clinician did not pay attention to the patient, or they were not being treated or given the same options as others. One patient shared his experience being racialized as Black after being left in the exam room for some time during a visit with his oncologist: “I could have fallen out in that room and died right there because no one was checking. […] It makes you feel like they forgot about you almost.”

Exposure to racial discrimination affected patients’ health-care utilization and physical health

In general, patients who experienced racial discrimination by health-care staff or clinicians described the consequences as affecting whether they received care in that instance or whether they were likely to receive follow-up care. Patients shared they were forgotten about in the waiting or clinic rooms and being seen after others despite checking in first because they were racialized as Black. This led to frustration and, subsequently, patients “walking out” of the visit without their health issues addressed. As one patient stated: “So I just left […] A few of them looked up at me and didn’t say a word so I just walked out, because I thought that was teaching them a lesson.”

Black cancer patients also continually advocated for themselves and their needs to receive proper medical care. The dismissal of their voices had detrimental effects on patients’ physical health such as late-stage diagnosis and exacerbated health problems as described by the following: “I was in the emergency room [and] I had bowel problems, blood in the stool [and] could not digest anything. She kept saying, ‘Oh, it’s probably just this,’ and ‘you are too young.’ She did not give credence to what I was telling her, she did not listen and take me seriously. [I…] had all the classic symptoms of colorectal cancer and she ignored them all.”

Ultimately, patients expressed feeling a lack of respect that they reported as racial discrimination that led to some patients preferring to seek care from emergency departments instead of their established clinicians.

Patients internalized experiences of racial discrimination, which resulted in behavior changes to mitigate the effects

Occasionally, when patients experienced racial discrimination, it resulted in patients changing their behavior to mitigate the effects. For example, one patient focused on changing their outward appearance to gain the respect of the clinician. One patient shared: “Whenever I go to her, I have to make sure I smell fresh and she likes my outfit. I have a book in my hand […] just so she will treat me with a minuscule of respect.”

Patients felt that receiving poor care was inevitable as a part of a minoritized group

Patients still sought care when they experienced racial discrimination out of necessity. In some cases, receiving a referral to another clinician or care plan was the only positive outcome reported after being exposed to racial discrimination while interacting with health-care providers. However, many patients expressed that receiving poor care was “just the way it is” for Black patients. Patients framed this as an unavoidable element of being part of a minoritized group and something that is tolerated when seeking care. Patients did share they would have preferred a clinician who shared some aspects of their racial identity but could not find one within their care network or at all. The only options for patients were to continue to be exposed to racial discrimination while interacting with health-care professionals or have worse health outcomes. As one patient stated: “Because, […] for African Americans […] we don’t get the highest standard of treatment, we just don’t. And for those of us who want to get treated and be proactive about our health, it’s frustrating to have to go through these types of scenarios.”

Positive experiences with cancer care

Patients who had positive feelings toward their clinician or care expressed there was a personal and emotional connection with their clinician characterized by mutual respect and compassion

Patients who expressed high regard toward their clinician or health-care provider had experiences distinguished by themes of feeling seen, heard, and understood (Table 3). Clinicians took time to ask personal questions about their family and how they were feeling, explained diagnoses or treatments, and ensured the patient understood what they were being told. Patients also felt the clinician was easily accessible to make an appointment or check-in by phone.

Table 3.

Summary of positive care characteristics for Black patients with cancer

Positive care experiences themes	Clinician actions	Patient reactions
Empathetic clinicians	Asked personal questions about family and how patients were feeling Explained diagnosis and treatments in a way that they understood	Patients feeling seen, heard, and understood Spoke highly of clinicians
Easily accessible clinicians	Ability for patients to make appointments or check-in by phone Spent enough time with patients

Discussion

This qualitative analysis examined how experiences of racial discrimination manifest for Black cancer patients and how these experiences might contribute to disparities in receipt of cancer care. When instances of experiencing racial discrimination occurred, patients expressed these experiences were associated with negative emotions long after the experience concluded and impacted the ability of the health-care system to demonstrate trustworthiness and limited the options available to patients to make informed decisions about care. Instances of racial discrimination also resulted in patients feeling their voices were dismissed and increased the psychological burden and time toxicity with receiving care. The silencing of Black cancer patient voices impacted patients’ health-care utilization and had implications for their physical health.

The themes identified in this study are consistent with previous research regarding exposure to racial discrimination in health-care settings. Systematic reviews and meta-analyses have shown exposure to racial discrimination is associated with psychological distress (10) and more negative patient experiences of health services including lower levels of health-care–related trust, satisfaction, and communication (11). It is also associated with health service use outcomes such as delaying or not seeking health care and challenges with informed care decisions and receipt of guideline-concordant care (11). For Black cancer patients, exposure to racial discrimination is associated with challenges to cancer screening uptake guidelines and fewer physician office visits (12). Among Black cancer survivors, patient–clinician interactions could also lead to misinterpretation of symptoms and to delays in care (13). The underutilization and disengagement of health-care services exacerbated by exposure to racial discrimination creates a cyclical culture of mistrust between the Black patients, clinicians, and health-care system (14,15).

It is important to acknowledge that most medical interactions for Black patients, as seen in this study, occur in a “racially discordant” health-care setting: the patient is Black and the physician is not (16). Racially discordant patient and physician interactions have been shown to have less patient-centered communication and lower levels of positive affect (17). Physicians spend less time answering questions, presenting health education, and building relationships with Black cancer patients (18). Individuals reporting exposure to racial discrimination shared the experience was largely associated with not being involved in decision making or not having time with the physician (19). Implicit bias has been shown to be present among many health-care clinicians of different specialties, levels of training and experiences (20), where a patients’ race is shown to be associated with physician’s assessment of patients’ intelligence, likelihood of risk behavior, adherence to medical advice, and subconscious racial stereotypes about Blacks patients (21). This could further explain why verbal expressions of overt racial discrimination were rooted in racial stereotypes regarding socioeconomic status or health behaviors surrounding the community.

Quality of care characterized by the amount of time spent with clinicians, shared decision making, emotional support, and effective communication are strong predictors of Black cancer survivors’ self-reported health outcomes (22). Consistent with the themes that emerged from this study, positive experiences for Black cancer patients were characterized by emotional support and effective communication while instances of exposure to racial discrimination were defined by the opposite. This suggests exposure to racial discrimination may exacerbate health disparities by also degrading the patient–clinician relationship affecting subsequent physical health outcomes.

Using the Surveillance, Epidemiology and End Results–Consumer Assessment of Healthcare Clinicians and System dataset, our prior studies found that poorer ratings of patient experiences with physician communication, customer service, and the ability to receive care quickly are associated with later-stage cancer diagnosis for Black patients but not for White patients (23-24). Findings from this study show that Black patients may view transient, brief interactions with their clinician or lack of respect within clinician communication as covert or overt racial discrimination. Our prior findings with this data suggest that for Black patients, Consumer Assessment of Healthcare Clinicians and System measures may capture aspects of covert or overt racial discrimination that can have real consequences on subsequent patient care engagement.

Ultimately, this study contributes to growing discussions surrounding health disparities for Black cancer patients and demonstrates the importance of patient–clinician relationships for this population. Future research on social determinants of health such as race and racial discrimination will require a biopsychosocial approach that examines interactions of determinants across multiple levels that may not be fully captured by quantitative work (25). For cancer care disparities, the unique factors that Black patients experience at the individual and health-care system level must be considered in each implementation and integration step when addressing the needs of the population (26). Continued progress toward equitable cancer outcomes will require partnerships with the community to expand access to research participation, high-quality cancer prevention, early detection, and treatment for all Americans (27,28). However, it will also require accountability. This involves developing routine methods for patients to provide feedback on personal experiences with racial discrimination, enhancing transparency so this information is made public to assist in identifying strategic improvements in health-care organizations, and using this information about patient experiences to develop educational practices and trainings that support health-care professionals in acknowledging their own discriminatory behavior and provide concrete next-action steps (6). Our next action steps include looking at how exposure to racial discrimination manifests in the cancer care setting for other racially minoritized groups like Hispanic survivors and developing methods to quantify the impact of racial discrimination on health-care experiences with care.

There are limitations of this study. Experiences described in this study are subjective and cannot be generalized to every Black patient who navigates the health-care system. However, the goal of this study was to explore how exposure to racial discrimination and racism might impact care and psychosocial well-being for future quantitative studies. To our knowledge, our qualitative analysis is one of the few studies that capture unique elements of cancer patients’ specific and personal experiences with racial discrimination during cancer care.

Overall, the results of this qualitative analysis provide insight into how exposure to racial discrimination unfolds for Black cancer patients and supports previous research regarding some of the effects in health-care settings. It is important to acknowledge these experiences so that research can continue to examine how implicit biases and preconceived notions can impact the interactions between patient and clinician. Ultimately, patient-centered communication and care does not exist without cultural competence and humility.

Data availability

The data underlying this article cannot be shared out of privacy for the individuals that participated in the study. The qualitative nature of the interviews and experiences of patients are personal and removing identifying information from individual transcripts may still breach confidentially.

Author contributions

Elleyse Garrett, MPH (Conceptualization; Formal analysis; Methodology; Software; Visualization; Writing—original draft; Writing—review & editing), Cindy Ma, PA (Formal analysis; Software; Writing—review & editing), Carol Ochoa-Dominguez, PhD, MPH (Conceptualization; Data curation; Investigation; Supervision; Writing—original draft; Writing—review & editing), Stephanie Navarro, PhD (Conceptualization; Formal analysis; Writing—original draft; Writing—review & editing), Paul Yoon, BS (Conceptualization; Investigation; Writing—review & editing), Chanita Hughes-Halbert, PhD (Conceptualization; Investigation; Validation; Writing—review & editing) and Albert John Farias, PhD, MPH (Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Resources; Software; Supervision; Writing—review & editing).

Funding

This research was supported by an institutional Zumberge Research award for Diversity and Inclusion awarded by the University of Southern California (AJF, Principal Investigator). Additionally, research was supported by the National Cancer Institute of the National Institutes of Health under Award Number K00CA264294 (PI: Ochoa-Dominguez, Carol).

Conflicts of interest

The authors do not have any conflicts of interests to disclose.

Acknowledgements

The authors would like to extend their gratitude to the men and women who provided insight and perspective and without whom this work would not be possible. Dr Farias (PI), EG, and CM had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. The funder had no role in the design of the study; the collection, analysis, or interpretation of the data; or the writing of the manuscript and decision to submit it for publication.