Pain, No Gain?

Abstract

Drawing from interviews conducted as part of a study of older African Americans with multimorbidity, we argue how various forms of racism work together to shape communication between doctors and patients. By focusing on what patients say about pain, we highlight patient descriptions of their relationships with pain management, their interactions with healthcare providers, and how they navigate understanding their chronic conditions. Our documentation of patient experience with stigmas and biases suggests what is needed for more empathetic and effective communication within the doctor and patient relationship. We conclude by using the interview data to propose addressing racial inequality in health care in the United States through educational reform and training initiatives grounded in rhetorical research.

Introduction

Our claim in this essay is that an adequate response to racial disparities in health care requires acknowledging how institutional racism, personally mediated racism, and internalized experiences of racism work together to shape communication between doctors and patients. To support this claim, we draw from interviews conducted with older Black people regarding self-management of chronic conditions. Pain emerged in the interviews as a major challenge alongside other major challenges to managing chronic conditions, including wanting doctors to give more time to the care relationship and wanting more opportunities to negotiate patient–provider power dynamics. We focus here on pain for two reasons.

First, racial disparities in pain management are well documented. One meta-analysis reviewing analgesic treatment disparities over a 20-year period found that Black patients were 22% less likely to receive pain medication compared to white patients (Meghani et al., 2012). An analysis of Medicare claims made in 2016 and 2017 documents racial disparities in treatment recommendations, finding the mean annual dose of opioids was 36% lower among Black patients than among white patients (Morden et al., 2021). Multiple studies have established that doctors are motivated to write fewer prescriptions for pain medication for Black patients due to fear those patients will become addicted to or sell their painkillers (James & Jordan, 2018, p. 408) and from racialized perception that their Black patients feel less pain (Hoffman et al., 2016, p. 4300). The problems of racism in pain management are compounded by health disparities that are the product of living in a racist society (Ifekwunigwe et al., 2017). Further, as John Hoberman (2012) observes, doctors are not educated to reflect on their own emotional “entanglement with America’s racial traumas” (p. 17). Compounding lack of personal reflection,

The recitation of endless statistics documenting the racial health gap can … have the effect of depersonalizing and obscuring the human reality of what is happening to people. Our attention is displaced from the behaviors of doctors and patients into an abstract dimension of enormous and hopelessly complicated social phenomena that can only be imagined or, at best, theorized. (Hoberman, 2012, pp. 19–20)

Second, racial bias in pain management emerges as a product of how we use language to narratively construct pain in specific contexts. S. Scott Graham (2015) characterizes attention to the “reciprocal relationships among words and things at sites of practical regimes of engagement” as “rhetorical-ontological” (p. 207). Graham does not include the impacts of racism in his description of rhetorical-ontological inquiry, but—as noted in the previous paragraph—racism does have material consequences for Black patients that impact the pain they experience, how their pain is discussed, and how it is understood. Drawing attention to the discursive behaviors of doctors and patients around pain and pain management and the entanglement of their discursive behaviors with the social predicament of racialization in America is a rhetorical problem without an empirical answer. Thus, scholars who study the rhetoric of health and medicine seek to provide analytic insight and productive frameworks regarding broad cultural and social influences on health care (Melonçon & Scott, 2017, p. 1).

In this essay, we draw from interviews with older Black people. As part of their discussion of the challenges of chronic condition self-management, respondents described their relationships with prescription drug use and their interactions with healthcare providers, particularly related to prescription practices for pain management. Those narratives underscored the need to focus attention simultaneously on the entangled dimensions of institutional racism, personally mediated racism, and internalized experiences of racism. Our documentation of participant experiences with stigmas and biases around prescription pain medication suggests that one way forward through institutionalized and internalized racism is for doctors to remove personal and institutional bias from their professional practice. Such efforts, while necessary, make the mistake of aspiring to solve the problem of racial disparities in healthcare by only removing institutional racism and personal bias from medical science and clinical practice, however. Efforts to remove the impact of racism from medical care is challenging because patients, like doctors, live in a racialized society and bring with them racialized identities. For this reason, in addition to removing racial bias from the structure and practice of medicine, we propose doctors must also adopt a deliberate, anti-racist rhetorical stance from which to listen with greater attention to how patient experiences of racism motivate their use of health care.

To effect real, long-term change around how racism is discussed and experienced within the current medical system, doctors must be trained to listen to patient counternarratives around racial identity and racial bias. Our proposal for listening to patients is an adjunct to, rather than a replacement for, the need for institutional change. Widespread improvements can only occur within a new system that embraces both approaches to anti-racist medical practices. What we want to emphasize is people who are suffering now need approaches that can be put into action quickly.

Methods

The analysis presented here was part of a larger mixed-methods study aiming to identify and understand the most salient challenges to chronic condition self-management (CCSM) faced by Black people 65 years and older. The findings served as the basis for digitized stories (i.e., videos), which will be evaluated in the last phase of the study to identify what health professions students learn and do not learn from stories about CCSM challenges. This manuscript reports on a secondary analysis of interview data collected during phase one of the study. We describe phase one data collection and secondary data analysis below.

Sample and Recruitment

Qualitative data were collected between August 2020 and December 2020. All study procedures were approved by the [redacted for review] IRB. Eligible participants were African Americans aged 65 years or older who were living within the [redacted for review] metropolitan area and who reported having a minimum of two chronic conditions. Participants were recruited from the Participant Resource Pool (PRP). The PRP is a volunteer registry of 1,700+ African American individuals aged 55 years and older. A list of PRP members was randomly generated and sent to the study team. A trained research assistant (RA) conducted telephone-based participant screening (inclusion was assessed via self-report), consent, and enrollment.

Data Collection and Analysis

A dual degree anthropology and social work PhD candidate with prior expertise and training conducted the in-depth, semi-structured interviews. Semi-structured interviews were chosen since they are an appropriate approach when the study aim is to understand and compare experiences of a situation (Fritz & Lysack, 2020). The interviews averaged 69 minutes (range: 34–107 min). All interviews were audio recorded (with participant permission) and transcribed. Due to COVID-19 restrictions, interviews were conducted either using Zoom teleconferencing software or over-the-telephone based on participant choice. The semi-structured interview guide consisted of open-ended questions about participants’ chronic conditions, their past and current self-management behaviors, and their experiences of collaborating with providers to manage their conditions (see Table 1).

Table 1.

Example questions.

Examples of Questions from Semi-Structured Interview Guide

Tell me about the chronic conditions that you have. When were you diagnosed with those? What was the process of learning to manage your condition(s) like?  • What kind of resources or supports did you have along the way?  • What things made it more difficult for you to manage your conditions?  • How did you experience your interactions with healthcare providers who tried to advise you on how to manage your conditions? What is self-management like for you now? What makes it that way (probe for positive/negative influences)? Where would you like to see your self-management in the future? How do you think your situation compares to other older African Americans that you know with chronic conditions? How do you think your life circumstances shaped how you managed or currently manage your conditions? How do you think your life circumstances shaped how others have gone about advising you on how to manage your conditions?

Data generated from interviews consisted of 543 pages of transcribed text (229,791 words). For the purposes of this brief, we focused on both explicit and implicit references to race and racism in the transcripts of interviews with 21 participants who talked about pain and the challenges of managing their pain. We also brought awareness of the impact of racism on health disparities to our analysis of the transcripts, not reductively treating the challenge of communication as a problem of race or racial identity.

Our rhetorical analysis follows the recommendation of Kelly E. Happe (2017), who cautions against placing appeals to race at the center of evidence-based arguments aimed at reducing racism in health care. She proposes instead we “think critically about the terms used in communication about health” (p. 80). Building on the work of Reed and Chowkwanyum (2012), Happe (2017) cautions that a lack of critical reflection on terms like “race” in epidemiological research often turns “historical specificity” into “trans-historical biological evidence, and a racialized form of biological evidence at that” (p. 83). For our purposes, engaging critically with terms used in health communication—particularly the doctor-patient encounter—involves listening to interview participants to hear the ways personally mediated, institutionalized, and internalized racism influence their experiences of communication with doctors. The goal was to more wholistically interpret how these doctor-patient interactions emerge in spaces charged with racialization.

Findings

Thirty older Black individuals (participants self-identified as “Black”) participated in the study, the majority of whom were female (n = 22). The average participant age was 74 years (SD: 6.30), and the average number of reported chronic conditions was four (range: 2–6). The most commonly self-reported chronic conditions were hypertension (n = 17), arthritis (n = 13), and diabetes (includes type 1 and type 2; n = 12). Table 2 presents additional demographic data for the sample.

Table 2.

Sample demographic characteristics table.

	Total: n = 30 N (%)		Total: n = 30 N (%)
Age (years)	74 (6.30)	Number of People in Household
Sex	Female: 21 (70)	Live alone	14 (46.7)
Years in Current Residence	22 (16.8)	1 person	12 (40)
Relationship Status		2 people	4 (13.3)
Never Married	4 (13.3)	Current Employment Status
Married	7 (23.3)	Working full-time, 35 hours or more a week	2 (6.7)
In a relationship but not cohabitating	3 (10)	Unemployed or laid off and looking for work	2 (6.7)
Separated	8 (26.7)	Unemployed and not looking for work	1 (3.3)
Widowed	8 (26.7)	Retired	22 (73.3)
Education		Something else	3 (10)
Some high school	2 (6.7)	Household Income
High school graduate or GED	2 (6.7)	$5,000 to $9,999	2 (6.7)
Some college or technical school	9 (30)	$10,000 to $14,999	4 (13.3)
College graduate (bachelor’s degree)	7 (23.3)	$15,000 to $19,999	2 (6.7)
Graduate degree	10 (33.3)	$20,000 to $29,999	1 (3.3)
Place of Residence		$30,000 to $39,999	3 (10)
Own home, apartment, or condo	28 (93.3)	$40,000 to $49,999	4 (13.3)
Home of a relative/friend	2 (6.7)	$50,000 to $59,999	5 (16.7)
		$60,000 to $69,999	1 (3.3)
		$70,000 and over	6 (20)

We present our findings in three parts: experiences with pain and prescription hesitancy, health literacy/noncompliance and silencing, and chronic conditions as a function of family history. Each subsection begins with a reference to current research. We then quote from the interviews to introduce what listening to participants adds. Taken together, these findings show the persistence of racism in individual communication.

Experiences with Pain and Prescription Hesitancy

Twenty-one interview participants discussed experiences of pain associated with their chronic conditions. Most of these interview participants commented on the severity of their pain while noting they decided to “suffer” or “live with” pain despite seeking or receiving medical treatment for their conditions. The following is a selection of passages highlighting the extent, intensity, or duration of their pain:

The gout, when it flares up, there’s like I said, when I measure pain, I only measure it in two ways. It’s either a moan or a holler, and when it’s time for a holler, it is I can hardly bend my big toe, can hardly walk. (Angela)

I don’t like to take prescription drugs, so I try not to take it but it’s here if I need it really bad. When I’m almost in tears, that’s the time for me to take it. The pain, it’ll never stop. I’m in pain 24/7. Sometimes it just gets to the point where it wants to hurt more than it did the day before or something like that. It’s been a while since I took the pills. (Patricia)

It finally went away and got better but at that moment, I was in excruciating pain for about a week and it’s driving me crazy.

I thought maybe there’s something going on with my bones or my spine or something. I didn’t know. I think it was a muscle spasm. (Fannie)

I always have a pain in my back, always, almost, even as we speak. It’s like I know what it is, and what they can do about it is literally nothing at this point, I don’t think. I wouldn’t want to have to go through that kind of surgery again if I could avoid it. (Barbara)

Here interview participants give vivid testimony about how they experience pain, describing it in a variety of ways: “24/7,” “excruciating,” “driving me crazy,” “a moan or a holler,” and “I’m almost in tears.”

Despite their experiences of pain, these interview participants also said they hesitate to treat their pain with prescription painkillers. In addition to frustration that the pain persists, some want to explore other options:

Until this day, I still would like to find out what am I doing wrong? Is there something that I should be doing or not be doing to stop this pain or to lessen the pain? Are there things that I should not be eating or are there things that I should be eating? Go sitting down with me, giving me instructions and tips instead of writing out a prescription for pain, which I’ll probably get filled and I’ll take once in a blue moon. It’s still not doing me any good, because the pain is still there. (Shirley)

Another participant, Patricia, more explicitly invoked race and medical research, saying, “You know how you have people been in our group that they may take some medication, they don’t know if they are taking the real stuff or placebo, I’m not going to do that.” Several others said they “don’t want to get hooked.” Interview participants who expressed concern about potential addiction said:

Too many people right now are addicts because of pain medication, and I refused that, I’m not going to be one of those, I’m not going to be a statistic, I don’t even take a medicine … Oh, I told them that. I wrote it on the form, “You will not treat my pain with narcotics.” (Shirley)

Well, I just have this thing about some medications and especially you hear so many people that get addicted to different things. In my family, we do have a problem with addictions. Some of my brothers. I advocate not doing it for myself at all because you never know what can take your mind. I don’t take any chances on that. I just opted for just the regular pain medication, but it was not addictive drugs, and I would take the Tylenol. That’s my main reason. (Coretta)

Their concerns about addiction are not the same racist concerns about addiction which motivate doctors to underprescribe painkillers to Black patients. At the same time, individual concerns of Black patients about potential addiction should not be regarded as strictly personal and free from the consequences of living in a racialized society. One interview participant stated it explicitly:

I never forget my back doctor, he was so comical. He said—at least it was comical to me—he said, “What?” He said, “Did you sit behind the desk?” I thought that is what I was supposed to do. He said, “That wasn’t good for you.” I said, “What?” [laughter] I said, “So, let me get this straight … picking cotton, wasn’t good for us either?” I said, “I should have done a combination of the two?” He looked at me and he just shook his head and I’m going, “You can shake your head all you want to, but I don’t know nothing about picking cotton.” I said, “I do know how to sit behind that desk.” I said, “That’s all I can do.” I said, “You all can’t come up with a thing that’s going to be good for us.” (Ella)

Here, invoking the physical traumas of slavery to express frustration should caution us to consider that racialization is part of awareness/experience even when race is not explicitly discussed.

When Black patients say they want to avoid addiction or explore dietary options for minimizing pain, they are speaking both from their experiences and out of knowledge about a long history of medical racism. As Hoberman (2012) explains:

A larger set of fears about black vulnerability to assorted dangers … can appear paranoid to most whites. Yet the fact is that what blacks believe about African American health and illness is often associated with ostensibly bizarre urban rumors that draw upon deeply entrenched memories of medical abuse and other traumas. (p. 19)

Black individuals’ hesitancy to seek medical treatment for pain, whether out of fear of being vulnerable or collective memoires of medical abuse, has led to misconceptions of Black patients as “non-compliant” or “too proud” to accept professional treatment recommendations (Grumbach et al., 2016; Hoberman, 2012; Hoffman et al., 2016; Staton et al., 2007). However, in the context of commonly racialized pain treatment practices which result in the undertreatment of pain, the hesitancy expressed by interview participants becomes less indicative of patient noncompliance or pride and more indicative of adaptation to medical practices that fail to recognize their experience of their pain, their willingness to “live with” pain out of suspicions of their interactions with doctors.

Health Literacy, Noncompliance, and Silencing

Interview participants who said they would rather “endure” or “live with” their pain than rely on prescription medication—whether from concern about addiction or interest in other treatment options—express reasonable hesitation considering the history of medical racism and the systemic inequalities in prescription practices for pain medication. Efforts by doctors to persuade Black patients to take pain medication as prescribed rather than to suffer in pain must overcome the hurdle of Black mistrust of a medical authority which presents itself as inviolable. Two interview participants described doctors as unquestionable authorities:

African Americans, we respect the doctor. I don’t want to say fear them, but we hold them in some reverence that we don’t challenge them. (Ida)

Again, I didn’t question doctors. It’s like, you don’t question God. (Phillis)

Doctors may be unquestionable, but they do not seem entirely trustworthy. The language of hierarchy—“reverence” and “God”—puts the interview participants in a diminished role where opportunities for “challenging” and “questioning” are taken away. As other interview participants put it, “I had experienced some doctors, ‘Hey, you take my word for it, you don’t question me or anything’” (Marian) and “They don’t want you to ask them too many questions.” (Miles)

In addition to being discouraged from asking questions, 17 participants interviewed in this study expressed feeling like they were silenced or not listened to by their doctors:

She [the doctor] get an attitude. She can get an attitude about the situation because it ain’t going like she want it to go. When the conversation ain’t going how she wants it to go, she gets an attitude real quick. I think that comes from her background … (Angela)

I feel like they should give you the truth about the long-range thing, if you don’t do this, this is going to happen or it could turn into this. More of that kind of conversation rather than just what it is and these are the handouts, read this. (Clinton)

Now, my back doctor he sent me or he told me what was wrong and I can’t say that word. Words, there’s two of them there, and they’re big. I think they do that for us lay, so that us lay people can’t say it. (Ella)

In these accounts, interview participants express being silenced by doctors using medical vocabulary, by doctors ending a conversation through appeal to medical handouts, and by the apparent frustration of miscommunication. Here, silencing is more a product of domination through expertise. Leah T. Rosen (2021) describes patients being silenced or having their own accounts of their pain disregarded or dismissed as a form of “epistemic injustice,” a privileging of ways of knowing that align with institutionalized power and have the effect of marginalizing or excluding others. Epistemic injustice is subtle—using words such as “us lay people can’t understand” or cutting off conversation by offering a pamphlet and saying “read this.” The accumulated experiences of being told not to question authority, being dismissed, and being left confused by uses of medical vocabulary do have an impact. Those experiences become a lived pattern. They are recalled, and they can burden patients with anticipations of bias, an internalization of expectations of being marginalized.

Too often, however, Black patients are silenced out of racist judgments about their health literacy. Many medical studies cite African Americans/Black people as having disproportionately lower health literacy (Muvuka et al., 2020), which in turn “is considered a cause of health disparities, and disparities by both race and educational status when health literacy are taken into account” (Noonan et al., 2016, p. 86). Susan Eggly et al. (2015) found that doctors recruiting Black patients for cancer clinical trials engaged those patients for 20 minutes less than white patients and used a third fewer words during recruitment.

Not an arbitrary act of defiance or necessarily a lack of health literacy, apprehension toward taking prescription medication is a form of participation in the dynamics of racism, which in turn disproportionately exposes Blacks to greater health risks and less adequate health care. It is a display of patient agency that speaks to the well-documented and lived racialized experiences of Black people navigating the U.S. medical system. As interview participants expressed, they feel they have lived long enough with their chronic conditions that what they know about their own bodies should not be dismissed, as described in the following interview quotes:

When you see something happening, you need to react to it. You get to know yourself. You don’t overly medicate yourself with pain pills. I don’t do that. I think I manage myself pretty good. (Louis) I had had experiences with the treadmill and they weren’t that good. I knew that this other machine, I had always done better on that machine than on the treadmill. That’s when she said, “Well, I think I know”—You might know, but I know my body and I had not had a good experience on the treadmill. (Marian)

I believe that doctors at the age that we are now and at the age that I am now, to take into consideration that we have gotten this age not overnight, that we do know a little bit about our own body. Everyone should and you should listen to your body. When your body tells you something, you pass it on to your doctor, but then your doctor should listen to you because you know how your body works. The only problem I have with my doctor right now is that, “You know what I’m telling you is happening with my body. Why can’t you tell me what I can do to try to curb it?” (Shirley)

Doctor stuff is cool but when you see something in your body that you know that isn’t right, I don’t care if the doctor tells you [unintelligible 00:11:37], he knows it’s not right. (Angela)

In these quotes, interview participants advocating for knowing their own bodies is not explicitly about the racism of American medicine. But with a history of Black bodies being maligned and mistreated—a history that includes medical experimentation on Black bodies—overlooking the effects that the social construct of race, even when unspoken, have not only on medical interactions but on medical practices, is a form of silencing. Though aversion to pain medication might be an indication of noncompliance catalyzed by a lack of health literacy particular to the benefits of taking medication as pain treatment, what is seen as patient noncompliance is again representative of the need for a much deeper conversation regarding racism and how it inevitably permeates the doctor-patient relationship.

Chronic Conditions as a Function of Family History

The pain experienced by interview participants is associated with the chronic conditions they must manage. Though participants attributed their chronic conditions to heredity, this attribution does not account for racism as a factor in producing the conditions they developed and the impact of medical racism on the care they received. As Hoberman (2012) explains, “Physicians should also be prepared to face the medical consequences of what racial segregation and poverty have done to some black patients” (p. 183). Seen through this lens, it is important to account for structural forces that have historically shaped patterns of disease and care without reducing those merely to ancestry.

In the interviews, participants suggested they viewed their chronic conditions as something that was an inevitable part of their family history:

I don’t think it frightened me. First, it’s not unusual for blacks to have high blood pressure, I knew that. My mother had high blood pressure. (Louis)

I’m 13 years older than my only sibling. She has been on high blood pressure in her 30s. My oldest daughter has been on high blood pressure too. When I got high blood pressure, when they put me on the medication, I said, “It was time.” (Ella)

I think I felt it was inevitable because both of my parents had it and my mother’s father also had it, and a lot of cousins. It’s like what the family does. (Lerone)

Because again, in my family, it was like, “Oh yeah, you’re going to get it,” like you’re gonna get gray hair, you’re gonna get that. So it’s like, that’s what you expected to happen. Finding out of course, that there is that component of ancestry. (Phillis)

Attributing chronic conditions to familial history functions as a sort of self-silencing by some of the participants, diminishing their individual agency when it comes to understanding their illnesses and how to manage them separate from their familial experiences. This is not simply a matter of health literacy understood as a more accurate comprehension of health information. The development of preventable illnesses that have plagued generations of Black families can be linked to a long history of medical racism, which can be connected to social determinants of health and the demoralization of the Black body. For example, Hoberman (2012) historically contextualizes the concept of “Black hardiness,” the idea that Black people are physically and, by some accounts, mentally more tolerant than other racial groups. This idea of Black hardiness has worked to downplay the pain and suffering of Black people and has been used as a justification to refuse or underserve Black patients in medical encounters. However, racial hardiness has also been used to fuel the “African American doctrine of survival,” creating a counternarrative of the physical and mental fitness of the Black body as resilient and having the ability to overcome (Hoberman, 2012). This counternarrative reads as emblematic of empowerment, an opportunity to promote racial pride and restore dignity. Hoberman (2012) explains the harm that these “romantic and pseudoscientific claims about the superior vitality of the black organism” (p. 104) create when it comes to taking care of health and seeking health services:

… the “hardiness” doctrine has over many years caused many black patients to discount or disregard their own symptoms by endowing them with the belief that they are tough or resilient enough to manage without medical care—a kind of medically dysfunctional black pride that may also draw on religious beliefs to reject medical assistance. (p. 106)

Thus, minimization of serious chronic illnesses and explaining the onset and outcome as an expectation due to family history emerges as a form of internalized racism (this concept will be discussed further in the next section). On the surface, the participants’ ability to locate their diagnosis as something familiar to them and something they have accepted due to an understanding of family history may be regarded as taking control of the situation. Except this view constitutes the romanticization Hoberman discusses. Family history is being scapegoated as the cause for the development of chronic illnesses, when it is racism that has created the health disparities that are to blame for higher rates of chronic illnesses in Black communities. Resilience is a learned trauma response that has been passed down through generations, a coping mechanism used to deal with the effects of racism inside and outside of the medical institution. Once participant sums up the idea of resilience, “Tricky, tricky [chuckles]. I take a licking and keep on ticking …” (Lerone).

Discussion

From the interviews presented above, doctors must listen better to meet the needs of their patients. However, this alone is an oversimplified solution to a problem that presents multiple complexities. Returning to a quote from Hoberman (2012) presented earlier in this essay, “doctors are not professionalized to reflect on their own emotional ‘entanglement’ with America’s racial traumas” (p. 17). “Entanglement” is a thread that runs through each of the participant interviews and serves as an apt description of the issues that affect Black people’s experiences with seeking medical treatment. There is no way to untangle medical experiences from race within a context that is, itself, entangled in the construct of race. However, viewing medical experiences, such as those described by the interview participants, with an acknowledgment that they occurred in a racialized context can offer insight into just how complicated the relationship between medical treatment and experiences of Black people dealing with medical conditions truly is. This serves as a reminder that perceiving Black patients’ aversion to certain medical treatments as “noncompliance” or viewing their medical experiences as “not so bad” is a racially biased perspective towards the treatment of these patients.

By learning to acknowledge the racialized identities and experiences Black patients bring into the care encounter, doctors can begin shifting their abstract thinking of “treating a problem” to a much more personalized method of patient care that accounts for identities beyond just being a patient. By focusing on the experiences of interview participants and understanding how personally mediated, institutionalized, and personalized racism influence communication between doctors and patients, it becomes possible to use the information provided in the interview transcripts in conjunction with available research to more wholistically interpret how these doctor–patient interactions play out and, therefore, begin to combat that bias. However, the remedy of listening to patients fails to account for the reach of racial bias by not doing enough critical work to describe how the epistemic injustice of being silenced is both the injustice of being denied the opportunity to talk and the injustice of being given what to say when the opportunity to talk becomes available.

Improving communication and empathy within the doctor–patient relationship must attend both to participants to account for experiences of racism and to the larger context of a persistently racist society that patients bring with them to their clinical encounters. A better articulated account of historical patterns of disadvantage, associated patterns of personal bias, and institutionalized constructions of race can create opportunities for patients to get medical care that is free of racial bias. On the other hand, medical care, like any other human activity, takes place in a world where appeals to race, like those to mitigate racism, persist in less overt ways.

Being aware of oneself as having a racial identity involves experiencing “personally mediated racism,” a term which “refers to the prejudice and discrimination experienced in daily encounters, ranging from overt racial slurs to the less explicit racism of the prejudicial judgments made by teachers, clinicians, shopkeepers, and other social contacts” (Grumbach et al., 2016, p. 9). Several efforts to minimize those prejudicial judgments in medicine have focused on educating doctors about their personal racism, suggesting professionalization to remove the personally mediated racism from medical encounters that stigmatize patients. The goal of professionalization is for doctors to recognize how their own biases might interfere with their clinical judgment. Ideally, such training would give doctors the skills to be more aware of their attitudes and actions and to listen more effectively to their patients. Here, too, while we agree providers should work to recognize and address their own biases, this is a focus on one person in the encounter—the doctor—to the exclusion of the other—the patient.

The variety of ways in which racism can present makes it hard to accurately identify but also analyze doctor–patient interactions. The task of identifying and analyzing racism in medical interactions is made even more difficult by the fact that most of the research available about prescription medication in relation to Black patients is reported from the perspective of medical practitioners, which increases the likelihood that trends identified through this research may show bias.

Additionally, findings from this research are not clear-cut answers to the issues facing Black people interacting with medical professionals. In each interview, one or more finding was represented, often repeatedly, which highlights the entangled nature of medical care and racism. The findings often seemed to contradict themselves in ways that require a great deal of active listening and care to unravel. Thus, the listening we are suggesting should not be mistaken for a single, simple solution to the issues facing Black people with medical conditions, but as a framework for a less-biased method for approaching interactions with these individuals to arrive at medical solutions that fit their needs within the context of a racist society.

Recommendations

The issue of racial bias in prescription drug practices is complex, and any attempt to intervene must account for this or else fail to achieve the desired outcome. Accounting for the complexity of the issue means acknowledging that racial bias cannot be relegated to the realm of only a systematic, personally mediated, or internalized issue. With this in mind, we recommend the following courses of action:

1. Implementing specialized training within medical schools rooted in research in rhetoric of health and medicine and based on narrative study research in rhetoric of health and medicine and medical education as they relate to patient experience.

2. Adjusting current medical practices at all levels to account for the effects of race on medical interactions and treatment in an actively anti-racist way. This approach accounts for addressing the shortcomings in current research about patient-centered care techniques.

We suggest the need not for one course or the other, but for both, to account for all the ways that medical professionals may go about forming their patient care practices. Below, we will expand on each suggestion.

Addressing bias in prescription drug practices at an educational level can account for personally mediated, institutionalized, and personalized racism, making this approach a practical step towards creating a more equitable doctor–patient experience. It is for this reason that patient-centered care is a part of medical education curriculum. However, what the medical field considers equitable or patient-centered varies from what a rhetorical approach might suggest. Combining these different perceptions of what patient centrality might mean allows for a medical curriculum designed by professionals in the field but guided by an expanded understanding of what patients need to feel more centered, namely through deep analysis of patient narrative. Introducing techniques for better listening to Black patients at an educational level addresses institutional racism by regulating the way that information about race is discussed while medical professionals are training to enter the field. This, in turn, can help medical students address the biases that they bring into their medical training, addressing personally mediated racism in two ways.

Secondly, looking as far back as the 1950s, there is information on the power dynamics between doctors and patients. There is a general consensus that doctors tend to hold the power in these situations, but there is also a great deal of literature on how to upset this balance to allow patient agency—a practice which is usually called patient-centered care (Vijn et al., 2018). This concept is communication-based, centered on how doctors communicate with patients and how this affects the patient or centers them in their interactions. There is also discussion as to how to go about making care truly patient-centered, which usually comes down to training—which echoed what we were seeing through the interviews we studied. But even with over 70 years of literature about patient-centered care, startlingly little of it is focused on antiracism. Moreover, the results of previous attempts to center patients in medical settings are inconsistent, ranging from very effective attempts to surface changes at best (Ho et al., 2010; Pilnick & Dingwall, 2011). Despite even the best results, the focus of available research is generally on patient experience, which ignores the larger stakes of doctor-patient interactions—stakes that are particularly higher for Black patients.

We recommend taking an active anti-racist approach to adjust current techniques for promoting patient-centered care that emphasizes patient experience. Alain Moreau et al. (2012), conducted a study to determine what decision-making model patients prefer regarding their medical care. The participants were asked to choose between decisions being made entirely by their healthcare professionals, decisions being made entirely by themselves, and decisions being the product of their healthcare professionals and themselves having an open and honest communication style and acting together. While this study did not discuss race in terms of the participant demographic, there was a consensus between the four groups who participated that having medical decisions made by both their healthcare providers and themselves, as the result of working together, was the preferred method of decision making. And yet, 10 years after this study was conducted, the transcripts that we analyzed suggest that there is still a great deal of work to do before we consider this kind of decision making to be the norm.

Conclusion

Medical practitioners cannot accurately account for many important factors in the treatment of their patients. Among these important factors are those such as, the patient’s past experiences that affect how they report their needs or levels of pain to their healthcare professionals, the patient’s interpersonal expectations that prevent them from following through with their self-management, and the affects that personalized racism play on how a patient determines when they will seek medical treatment. However, these factors are not the only ones that medical professionals may not be able to accurately report. A medical practitioner who has been trained in an inherently racist system will have difficulty in reporting their own racist behaviors, not necessarily deliberately. For example, they may have difficulty in conceptualizing their own microagressive biases that have been developed from being trained by and working in a system that perpetuates misinformation about the role that race plays in the development and treatment of medical conditions.

While the concept of patient-centered care is not a new one, available literature on patient-centered care rarely distinguishes between patients. This blanket approach to centering patient experience ignores the influence of bias, focusing on institutional reform for the ideal patient—one who is, again, considered to be the same as all other patients. Because of systemic bias, Black patients are not considered the ideal patient in these scenarios. Even research that seeks to improve patient care for vulnerated patients often takes a more general approach by addressing the needs of all vulnerated patients so that the amount of attention paid to each community is limited.

Analyzing the information gathered from research that centers the experiences of Black patients is vital to affect a change in the way that patients are treated based on their race. While there is merit in the idea of promoting training in medical environments, this approach must be combined with a reconception of the way that medical educational institutions train medical students. While neither of these approaches are exhaustive, this combined approach will help to limit the spread of racist ideology from current medical practices to future medical professionals. Furthermore, by reimagining medical education and training for students and existing practitioners, it becomes necessary for medical professionals who teach to be retrained in anti-racist techniques, which would act as a second level of training for current practitioners. Another benefit of this dual approach would be the direct impact that retraining at an educational level would have on academic medical centers, which “have historically neglected the health needs of their local communities of color” (Adams, 2020, p. 1).

By working to prevent medical students from assimilating misinformation about the way race affects medical treatments, the development of conditions, and the value assigned to the reliability of patients, we suggest that the impact of the change would self-perpetuate as these future medical professionals become trainers, experts, and educators in their field (Grumbach et al., 2016; Stein, 2019). The effects of the information that students receive during their education cannot be overstated. It is important to understand how ideas shape students, but do not define them. By suggesting action, we are not suggesting that medical professionals are responsible for their training, or even for all the racialized experiences their patients have under their care, but racism does permeate doctor/patient interactions:

such racism […] does not necessarily arise from a need or desire to protect white privilege, from ignorance of oppression, or from lack of exposure to difference. As long as the origins of racism are seen in these terms, curricular and pedagogical responses aimed at ameliorating racism—everything from multicultural exposure to difference to critical interrogations of whiteness and privilege—will be ineffective. (Trainor, 2008, p. 3)

It is our goal to affect the way that students are educated about racism so that they learn to challenge their own biases, the biases present in and beyond their field, and the biases that their patients have internalized in constructive ways.

Biographies

Carly Braxton IS A PHD candidate studying rhetoric and writing at Wayne State University. She recently presented on using multimodality to promote linguistic diversity in the classroom and on redesigning a medical writing-intensive course that engages health disparities research. Her research focuses on rhetoric of health and medicine and antiracism.

K.M. Begian-Lewis is a graduate student studying rhetoric and composition at Wayne State University. They have most recently presented on the relationship between time-poverty and socioeconomic status as it relates to experiences with higher education and on course design for medical writing-intensive courses that focus on acknowledging health disparities.

Richard Marback is Professor of English at Wayne State University. He has published on rhetorical theory and composition studies in CCC, Composition Studies, Rhetoric Review, and RSQ. With Marc Kruman, he most recently co-edited a special issue of Citizenship Studies on citizenship and the COVID pandemic.

Dr. Fritz, PHD, OTR/L, CHC, is an Associate Professor and Founding Director of the Pacific Northwest University of Health Sciences School of Occupational Therapy. Dr. Fritz’s research focuses on understanding how individuals may prevent or delay conditions of disability in later life and developing and testing preventative interventions.