Authors: Alexis Cooke (aDepartment of Community Health Systems, School of Nursing, University of California - San Francisco, 2 Koret Way, N505, San Francisco, CA, 94143-0608, United States), Stacy Castellanos (th), Sedona Koenders (th), Neena Joshi (th), Celeste Enriquez (cCenter for Vulnerable Populations at Zuckerberg San Francisco General Hospital and Trauma Center, Department of Medicine, School of Medicine, University of California -San Francisco, UCSF Box 1339, San Francisco, CA, 94143-0608, United States), Pamela Olsen (cCenter for Vulnerable Populations at Zuckerberg San Francisco General Hospital and Trauma Center, Department of Medicine, School of Medicine, University of California -San Francisco, UCSF Box 1339, San Francisco, CA, 94143-0608, United States), Christine Miaskowski (dDepartment of Physiological Nursing, School of Nursing, University of California - San Francisco, 2 Koret Way, Rm 631, San Francisco, CA, 94143-0610, United States), Margot Kushel (cCenter for Vulnerable Populations at Zuckerberg San Francisco General Hospital and Trauma Center, Department of Medicine, School of Medicine, University of California -San Francisco, UCSF Box 1339, San Francisco, CA, 94143-0608, United States), Kelly R. Knight (th)
Categories: Article, chronic non-cancer pain, discrimination, opioids, primary care, race, safety-net, substance use
Source: Drug and alcohol dependence
Authors: Alexis Cooke, Stacy Castellanos, Sedona Koenders, Neena Joshi, Celeste Enriquez, Pamela Olsen, Christine Miaskowski, Margot Kushel, Kelly R. Knight
Clinicians’ bias related to patients’ race and substance use history play a role in pain management. However, patients’ or clinicians’ understandings about discriminatory practices and the structural factors that contribute to and exacerbate these practices are underexamined. We report on perceptions of discrimination from the perspectives of patients with chronic non-cancer pain (CNCP) and a history of substance use and their clinicians within the structural landscape of reductions in opioid prescribing in the United States.
We interviewed 46 clinicians and 94 patients, using semi-structured interview guides, from eight safety-net primary care clinics across the San Francisco Bay Area from 2013–2020. We used a modified grounded theory approach to code and analyze transcripts.
Clinicians discussed using opioid prescribing guidelines with the goals of increased opioid safety and reduced bias in patient monitoring. While patients acknowledged the validity of clinicians’ concerns about opioid safety, they indicated that clinicians made assumptions about opioid misuse towards Black patients and patients suspected of substance use. Clinicians discussed evidence of discrimination in opioid prescribing at the clinic-wide level; racialized stereotypes about patients likely to misuse opioids; and their own struggles to overcome discriminatory practices regarding CNCP management.
While clinicians and patients acknowledged opioid safety concerns, the practical application of opioid prescribing guidelines impacted how patients perceived and engaged with CNCP care particularly for patients who are Black and/or report a history of substance use. We recommend healthcare system and clinic-level interventions that may remediate discriminatory practices and associated disparities.
Escalating racialized disparities in United States (US) opioid overdose deaths led to calls for studies that examine the relationships between and among structural determinants (e.g., policies and regulations limiting access to opioid use disorder treatments; racialized mass incarceration) and substance use disorder (SUD)-related outcomes (Blanco et al., 2022b; Chatterjee et al., 2022). For patients with chronic non-cancer pain (CNCP) and a past or current history of substance use, healthcare systems have deployed opioid prescribing reductions to promote increased opioid safety. However, clinicians’ biases related to patients’ race (Haq et al., 2021; Sun et al., 2022) and substance use history (Hurstak et al., 2017) play significant roles in their prescribing and pain management practices. Patients’ and clinicians’ understandings about discriminatory practices and the structural factors that contribute to and/or exacerbate these practices are underexamined (Brown et al., 2019), especially in the context of reductions in opioid prescribing.
In the US, racialized histories of trauma are embedded in Black and Brown communities due to decades of War on Drugs policies that specifically targeted Black and Brown people who use drugs (PWUD). In recent years, opioid-related overdose deaths among racial and ethnic minority groups have increased and are associated with illicitly-manufactured fentanyl and polysubstance use (Friedman & Hansen, 2022; Substance Abuse and Mental Health Services Administration, 2020a; Substance Abuse and Mental Health Services Administration, 2020b; Townsend et al., 2022a). Safety-net clinics, defined by the Institute of Medicine (2000) as those that “…offer care to patients regardless of their ability to pay for services, and [for which] a substantial share of their patients are uninsured, Medicaid, or other vulnerable patients,” are healthcare settings that serve predominantly racial and ethnic minority people, as well as low-income people of all racial and ethnic identities in the context of racial and economic social hierarchies and lack of universal access to healthcare in the US (Chatterjee et al., 2020; Powell et al., 2022). Resource scarcity is common in these clinical settings, reflected in inadequate clinician-to-patient ratios, high turnover, clinicians lacking specialty training, and limited access to physical therapy and complementary treatments for CNCP (e.g., acupuncture, massage) (Cristobal, 2015; Rubin et al., 2018; Satterwhite et al., 2019).
To assist clinicians treating CNCP, governing bodies created guidelines for prescribing opioids for chronic pain and strategies to taper patients off prescription opioids which included opioid-risk assessments; prescription drug monitoring programs (PDMPs); and urine toxicology screening (American Medical Association, 2015; Dowell et al., 2016; Manchikanti et al., 2012; Volkow & McLellan, 2016). Mass reductions in opioid prescriptions resulting from guideline-driven practices have had unintended consequences, including uncontrolled pain, decreased quality of life, and suicide (Fenton et al., 2022; Suen et al., 2021). Research demonstrates that clinicians have applied some prescribing policies (such as PDMP check mandates) more to Black patients than to white patients (Townsend et al., 2022b). Documented biases exist in the treatment of CNCP (Hirsh et al., 2015; Mathur et al., 2014; Trawalter et al., 2012) and significant racial disparities occur in chronic pain management (Haq et al., 2021; Maly & Vallerand, 2018). As a corrective that acknowledges the unintentional consequences of their previous 2016 guidelines (Dowell et al., 2016), the Centers for Disease Control (CDC) updated guidance for opioid prescribing, re-emphasizing the use of nonpharmacologic and nonopioid medications for chronic pain; identifying concerns related to inequitable treatment; and highlighting the need for assessing risks and benefits when prescribing or tapering opioids (Dowell et al., 2022).
A variety of factors can impact care for PWUD and those who are also racial/ethnic minorities may face additional barriers that limit treatment access. Patients report feeling like they are being punished for larger societal issues (e.g., the opioid crisis), through various opioid monitoring initiatives while pain remains uncontrolled, contributing to patients’ mistrust of medical providers and disengagement in care (Benintendi et al., 2021). Internalized stigma related to substance use is a significant barrier for PWUD seeking treatment and enacted stigma remains persistent among the public and healthcare professionals (Kennedy-Hendricks et al., 2022; Krendl & Perry, 2022). Racial and ethnic minorities have poorer SUD outcomes, including access to care and care continuity, due to racialized differences between programs that serve minorities compared to those serving white individuals (Burlew et al., 2021; Melnick et al., 2011), hospitals are significantly less likely to offer opioid use disorder (OUD) treatment when located in communities that are predominantly Black or Hispanic (Chang et al., 2022).
Studies demonstrate how racism has a negative impact on healthcare and treatment of SUD and CNCP, as well as challenges PWUD face accessing treatment for these conditions (Burlew et al., 2021; FitzGerald & Hurst, 2017; Kosteniuk et al., 2022). However, no studies have examined the way these factors intersect to impact the care and autonomy of racialized minorities with SUD histories who seek CNCP management. In this paper, we describe how patients experienced drug use and racial discrimination, and how clinicians grappled with their biases in their interactions with patients with CNCP and with the impact of institutionalized racial and substance use-related disparities to contextualize the impacts of opioid prescription guidelines.
This paper leveraged data from two qualitative studies conducted in eight safety-net primary care clinics in the San Francisco Bay Area over a seven-year period. Longitudinal qualitative and ethnographic studies conducted with similar participant populations in the same geographic location are methodologically advantageous because they help ensure a comprehensive understanding of complex, historically unfolding social phenomena (e.g., the impact of growing concerns about opioid prescribing for CNCP) that one-time studies conducted during a single time period can lack (Saldaña, 2003). These “long durée” studies are also particularly useful at identifying persistent social and structural challenges that endure even as other aspects of clinical culture evolve (Carduff et al., 2015; Lawton et al., 2009; Pettigrew, 1990). To benefit from this approach, we intentionally designed both studies reported here to share similar understanding the impacts of concerns about opioid prescribing for CNCP on patients’ experiences, clinical care practices, and patient provider relationships.
We conducted the first study between October 2013 and March 2015 and used convenience sampling to recruit and interview 23 clinicians and 46 patients from six safety-net primary care clinics in the San Francisco Bay Area. Using the same sampling method, our second study recruited and interviewed 23 clinicians and 48 patients from five safety-net primary care clinics from February 2018 to August 2020. Three clinics participated in both studies. The eligibility criteria were also the same; clinicians were defined as a physician, nurse practitioner (NP), or physician assistant (PA) who provided longitudinal primary care, and patients were eligible based on having both CNCP (pain lasting three months or more) and a history of substance use (past or current). In the first study (2013–2015), the first wave of the opioid epidemic had produced an environment of increased opioid pharmacovigilance (Knight et al., 2017) with multiple professional associations, including the American Pain Society and the American Society of Pain Physicians having already published guidelines that encouraged dose limitations of morphine milligram equivalents (Chou et al., 2009; Manchikanti et al., 2012; US Centers for Disease Control, 2013). These guidelines were then codified by the CDC in 2016 and saw widespread application during the second study period (2018–2020). Thus, the two studies were able to assess the impact of the evolving opioid prescription policy environment, and for the purposes of this analysis, this longitudinal engagement documented how experiences of discrimination based on racialization and substance use persisted and worsened over time in the context of the changing federal climate of opioid surveillance.
Combining participants from both studies, most clinicians were physicians (n=40; 87%), five were NPs, and one was a PA, all of whom prescribed opioids. Seventy percent of clinicians identified as women. We recruited patients based on their clinicians’ diagnoses of CNCP with a history of substance use (including illicit drugs and alcohol). Overall, patient participants were predominantly 55+ years-old, and the majority identified as male and Black/African American (See Table 1). Interviews were conducted predominantly in person at a location of the participant’s choosing, however some that took place in 2020 were completed virtually on Zoom^™^ (for clinicians) and via telephone (for patients) to prevent COVID-19 exposure for researchers and participants. There was no overlap in participation across studies among patients, five clinicians participated in both studies. Participants received a 25 gift card for follow-up interviews. One clinic did not allow clinicians to accept compensation. All participants provided written informed consent. The Institutional Review Board at the University of California, San Francisco (UCSF) approved these studies.
Data collection and analysis processes were consistent between studies, with the studies intentionally sharing a codebook for cross-study analyses. Each interviewer had training and experience conducting qualitative interviews. We audio-recorded interviews (on average, thirty to ninety minutes) and transcribed them verbatim. Recruitment and interviews continued until we reached thematic saturation (Patton, 2002). Interviewers conducted interviews in English or Spanish.
We used a modified grounded theory approach to code and analyze transcripts (Charmaz, 2014; Corbin & Strauss, 2014). While data collection was ongoing, our team of ethnographers and study investigators completed memos on interview transcripts and discussed emerging thematic topics. After successive iterations of coding transcripts independently and discussing them as a group, we developed distinct codebooks for patient and clinician interviews. Different sets of researchers coded each interview and entered coded data into a qualitative data management software program. We analyzed data with codes that reflected data on bias and discrimination, such as demographics (e.g., race, ethnicity, age, gender), patient characteristics (e.g., insurance status, substance use history), and sociocultural factors (e.g., stigma and “drug seeking suspicion”).
Bailey and colleagues’ (2017) definition of structural racism as “the totality of ways in which societies foster racial discrimination through mutually reinforcing systems of housing, education, employment, earnings, benefits, credit, media, healthcare, and criminal justice” informed our coding through our development of a codebook that included both interpersonal dynamics (e.g., bias and enacted stigma), as well as structural factors (e.g., policies within clinics and the larger community that produce disparity). In our analysis, this definition of structural racism informed our recognition that both clinicians’ and patients’ understandings of racial and substance use discrimination are informed by social and healthcare histories and policies. Data analysis related to bias and discrimination for Study 1 was conducted in 2015–2016. Analysts examined similar codes from Study 2 and identified which themes were persistent across both study periods, as well as the specific impact of the 2016 CDC Guidelines for opioid prescribing.
Across both studies, patients and clinicians described how racism and discrimination against PWUD, or those suspected of drug use, interacted and impacted the management of CNCP, leading to frustration and anger among patients. Patients recognized the healthcare setting as one fraught with the potential for bias that could impact their pain management. Some clinicians unreflexively perpetuated racist and discriminatory stereotypes toward patients who used drugs, or were suspected to use drugs, while other clinicians reflexively questioned the ways in which medical training and clinical policies might contribute to racialized and substance use disparities in care at a structural level.
In interviews, patients described negative feelings due to clinicians labeling them as a “drug addict,” whether or not they were currently using illicit substances, and clinician’s hesitancy or refusal to provide care. One patient highlighted how notes in their medical record about substance use led to clinicians dismissing their pain symptoms. Patients expressed concern that the formal documentation of any substance use in the medical record created suspicion and negatively influenced their care.
Many Black patients felt that clinicians used their race to identify them as “drug seeking” (e.g., people assumed to seek prescription opioids only for the purposes of monetary diversion or intoxication).
Clinicians reported perceptions of substance use based on race and ethnicity, such as perceived higher prevalence of crack use in Black communities. One clinician connected the use of crack to disparities in the criminal-legal system. This clinician expressed a racialized understanding of who uses crack and how that impacts the lack of services available to address crack use among patients.
Another clinician expressed racialized beliefs about who uses crack and why, describing crack use as more prevalent in Black communities. This belief framed this clinician’s beliefs about opioid prescribing and the likelihood that Black patients were diverting medications. Further, this clinician reported their perception that Black patients were unaware of the ways in which crack use could impact their health.
Clinicians identified a relationship between medical training and racialized bias. One described how their training reflected biases toward Black patients, which contributed to inadequate and inequitable treatment of pain.
Clinicians’ internalization of negative racial and ethnic stereotypes influenced how they thought about patients’ use of prescription opioids. Some clinicians expressed that certain groups were more likely to use certain medications (e.g., opioid vs. non-opioid analgesics) and assigned cultural differences as motives for opioid use. One clinician described their perspective on Black and white patients as chronic opioid
Clinicians discussed their struggles in identifying and addressing their own intersecting biases related to patients’ drug use, race, and ethnicity when providing care.
One clinician analyzed clinic-level data and found evidence of bias towards Black patients with a history of substance use. They emphasized self-awareness as one remediation strategy, while acknowledging its limits in response to the potential impacts of bias on subsequent discriminatory care practices.
The 2016 CDC Guidelines codified and standardized opioid surveillance strategies that already had widespread adoption in our study clinical sites during the first study period. In the second study, clinicians felt increased pressure to identify and respond to suspected diversion or inappropriate dosing levels with opioid tapers.
In interviews, some clinicians reported relying on the opioid prescribing guidelines to support their reasoning for tapering or discontinuing a patient’s opioid prescription, to make decisions less personal and to mitigate concerns about biased decision-making. As one clinician
However, clinicians were aware of how opioid tapering guidelines and general surveillance contributed to patients feeling that clinicians and clinic staff treated them unfairly and labeled them as an “addict.”
Patients discussed understanding the importance of clinic-level and procedural changes to prevent opioid misuse and its potential health consequences, especially overdose mortality and risk for OUD. However, they described perceptions of decreased autonomy over their health and pain management because of increased monitoring of opioids and related care practice changes, which were exacerbated after the release of the 2016 prescribing guidelines. When clinicians withheld or limited prescription opioids, some patients felt their clinician was dismissing their pain or viewed them as someone who was illegitimately seeking drugs. As one patient
Some opioid safety measures, such as tapers and the co-prescribing of naloxone with opioid prescriptions, felt stigmatizing to patients. Patients interpreted this approach as an indication that their clinician did not trust them with their medications and that they were being discriminated against. Pushing back on clinicians’ assessments, such as contesting an opioid taper, often placed patients in the awkward position of appearing more suspicious, thus reinforcing the impression of being “drug-seeking” that patients rejected.
In our research, safety-net primary care systems emerged as racialized sites of pain management in which intersecting concerns about drug use and racial discrimination were pervasive and consequential. Clinicians discussed viewing opioid surveillance and guideline-driven safety measures as a way to standardized opioid prescribing across patients; mitigate potential biases; support identification of opioid misuse; and promote safer opioid prescribing practices. However, patients who had histories of substance use, specifically Black patients, reported that clinicians engaged in racial and ethnic discrimination when making decisions about opioid prescribing and tapering. Consistent with existing literature, patients felt stigmatized and discriminated against due to their substance use history or suspected substance use (McKnight et al., 2017; Tsai et al., 2019). They additionally noted that clinicians minimized their pain symptoms. In practice, opioid guidelines and practices intended to enhance safety unintentionally upheld clinicians’ biases and highlighted challenges related to the effective management of CNCP within racialized healthcare environments.
This research has implications for opioid prescription practices and the application of universal precautions, that patients do not perceive as being universal. Patients reported that these biases affected clinicians’ assessments and management of CNCP. Researchers have highlighted the need for collective action to fully address systematic and interpersonal discrimination and eradicate disparities in pain management (Mathur et al., 2022). In interviews, clinicians used racialized language to associate crack use with Black patients and justified suspicion about diversion based on these racist stereotypes. Medical education may informally reinforce negative beliefs about patients, by including derogatory descriptors such as “frequent flyers” (a term used to describe patients who are perceived to “overuse” health services), “drug seeking,” and “non-complaint” (Higashi et al., 2013). The perceptions these descriptors engender, as well as bias produced through medical documentation of suspected substance use, hamper patients’ access to care and contribute to negative patient-clinician interactions. Systematic biases can be misrecognized and mischaracterized as individual, aberrant patient behaviors, leading to breakdowns in patient care continuity and reinforcing the structural violence and discrimination that contributes to a higher degree of healthcare services utilization (Fleming et al., 2019; Fleming et al., 2021).
Structural competency and anti-racist curricular efforts may help address these negative perceptions, as well as mitigate stigma and discrimination towards PWUD and those who need social assistance and complex care management (Metzl & Hansen, 2014). However, these efforts are inadequate without additional structural interventions that significantly increase the number of Black, Indigenous, and Latinx clinicians practicing in safety-net primary care settings (Green, 2023; Lett et al., 2019). Team-based and interprofessional approaches to CNCP management may hold promise as clinic-based strategies which could disrupt power imbalances between patients and providers and remediate the occurrence of discriminatory care practices (Hyland et al., 2021). Health systems should engage in mandatory self-audits to monitor systemic disparities in pain management that may occur among patients who are members of racial and ethnic minorities and/or past or current substance users to identify, track, and remediate disparities (Bohren et al., 2022; Kimmel et al., 2021). To address histories of discriminatory practices, lessons can be learned from harm reduction advocacy, through developing community-engaged approaches that engage community leaders and peers in community-based participatory research methodologies (Hughes et al., 2022). Black, Indigenous, and people of color leadership and patient advisory committees should be consulted and compensated to co-develop health system-wide pain management approaches that recognize patients’ experiences of discriminatory care; create space for reparatory dialogue in patient-clinician relations; and develop strategies that meet the needs of opioid safety without discrimination.
The CDC’s updated clinical guidelines for prescribing opioids for pain explicitly identify the role of social determinants of health and the ways in which social, economic, and neighborhood-level factors create and perpetuate health disparities (Dowell et al., 2022). To address SUD outcomes and treatment, interventions need to focus on structural factors that influence patient-level outcomes and that increase the risk of SUDs (Blanco et al., 2022a). The work needed to end the opioid overdose crisis must explicitly include social determinants of health (Dasgupta et al., 2018), structural drivers of health inequities surrounding prescription opioids (Hansen et al., 2023), and anti-racist medicine informed by the living and lived experiences of PWUD (Green, 2023; Simon et al., 2021).
Healthcare settings can turn to existing initiatives as models and frameworks for implementing anti-racist medicine. Initiatives such as the REParations and Anti-Institutional Racism (REPAIR) project seeks to further anti-racist medicine through research, education, and practice that recognizes that long-standing racial inequities in health, healthcare institutions, and scholarship are a result of structural violence and systemic racism (REPAIR Project Steering Committee, 2022). Currently, REPAIR is collaborating with residents in San Francisco’s Tenderloin neighborhood and allied local service providers to develop a provider educational series, entitled “Community Grand Rounds,” which centers patient community members as experts and instructors in strategies to identify and repair iatrogenic harms in partnership with physician-learners. Community organizations such as Freedom Community Clinic seek to reimagine healthcare for communities of color by integrating the strengths of ancestral, Indigenous, and holistic healing with the strengths of Western medicine (Freedom Community Clinic, n.d.). These community-based organizations and community-academic medicine partnerships offer potential models for dialogue and co-development of clinical care approaches that are aligned with CDC’s 2022 guidelines, while not perpetuating bias and discrimination in pain management.
Our studies had several limitations. We conducted our data collection in safety-net settings serving patients with substance use histories, so our results may not generalize to patients in different care contexts. Clinicians in our study may have had more experience treating pain and addiction and may have perceived risks differently than clinicians without such expertise. The patients who clinicians identified for participation in our study may be different from other individuals with substance use and CNCP. Finally, both clinician and patient interviewees may have answered questions in ways that reflected a social desirability bias (i.e., a tendency to present reality to align with what one perceives to be socially acceptable) (Bergen & Labonté, 2020). The samples included in this analysis were unable to capture all dimensions of intersectionality that may have impacted perceptions of discrimination from the perspectives of patients with CNCP and their clinicians.
Structural racism and discrimination in healthcare settings are identified as social determinants of health that negatively impact substance use treatment, primary care, and pain specialty care access and utilization for patients with OUD (Volkow, 2021; Bluthenthal, 2021; El-Bassel et al., 2021). The 2022 CDC guidelines for opioid prescribing recognize the risk for biased and discriminatory pain management for racial and ethnic minority patients, as well as patients with a past or current history of substance use. However, concrete and actionable strategies to address and remediate these risks are lacking in these guidelines. Our findings, drawn from seven years of longitudinal research with safety-net clinicians and patients with CNCP, suggests that both groups recognize systemic forms of bias and discriminatory pain management practices that have significant negative consequences on patients’ CNCP management and continuity of care. As US opioid-associated overdose mortality is substantially rising among racial and ethnic minority groups, particularly among people who identify as Black, it is critical to respond to and remediate the potential harms generated from the intersection of drug use discrimination and racial discrimination in the management of CNCP.