By Sara Walsh
Vulnerability is part of being a patient, particularly a patient with pain.
The late neurosurgeon Paul Kalanithi, MD, reflected on the shift in perceived power he experienced after being diagnosed with stage IV lung cancer and abruptly shifting from doctor to patient. In his memoir When Breath Becomes Air, which he wrote in the year leading up to his death, he asked himself while awaiting care: “Why was I so authoritative in a surgeon’s coat but so meek in a patient’s gown?”
However, all patients’ vulnerability is not equal.
Research consistently shows vast disparity in the quality of health care based upon race and ethnicity, particularly in regard to treatment of pain. The differences are staggering, especially in the prescriptions of analgesics for fracture treatment, cancer pain, and postoperative pain. A 2020 study illustrated that despite physicians rating patients’ pain levels as similar, non-white patients were significantly less likely to receive analgesics for bone fractures than whites. These disparities persist even when patients have the same socioeconomic status and insurance. Another study in 2007 showed that Asian, Black, and Hispanic women were less likely to receive epidurals than white women despite holding identical insurance.
Courtney S. White, MD, a headache medicine fellow at the Jefferson Headache Center in Philadelphia, is actively working to spread awareness about inequities in pain care. White’s quest is personal, as she herself identifies as biracial, bilingual, and queer. Her peers are often ill-informed. “Even today a lot of medical professionals think that Black and Latinx patients do not feel pain the same way that white people do.”
In fact, a 2016 study revealed that half of white medical trainees believe myths including: “black people’s nerve endings are less sensitive than white people’s” and “black people’s skin is thicker than white people’s.”
“Pain is so subjective. Any time we are very subjective in our measures and in our medicine, there’s a higher chance of unconscious bias coming into play.”
While the inequality of treatment is the result of a complex constellation of influences, today researchers and doctors agree the nucleus of the problem in pain treatment of marginalized populations is implicit bias. Referring to the study of medical students who held the false beliefs that Blacks feel less pain, Aswita Tan-McGrory, MBA, MSPH, deputy director of the Disparities Solutions Center at Massachusetts General Hospital, reflects on the residual effects of such beliefs: “You can see how it plays out in that [the doctor] is not going to prescribe pain meds because of this unconscious bias that the patient a.) can tolerate pain and b.) is drug-seeking.”
Pain treatment, specifically, is a fertile space for bias to fester on account of its subjective nature. Tan-McGrory explains, “Pain is so subjective. Any time we are very subjective in our measures and in our medicine, there’s a higher chance of unconscious bias coming into play.”
While implicit bias is the most salient common denominator of substandard treatment for marginalized populations, there are distinct variations in the interplay of variables.
Below, we explore considerations in disparities in pain care as they relate to major racial and ethnic groups. This overview only provides a snapshot of the issues; the obstacles run much, much deeper and are more tangled underneath.
Black and African American
Black and African Americans have a long history of mistreatment in the American health care system. The legacy stems back to when slaves were used as test subjects by white physicians, or more recently to the infamous Tuskegee Syphilis experiments from 1932-1972. During those experiments, Black men were tested for syphilis but not informed that they had it, nor were they treated for it even after penicillin was discovered as its cure. Such history has sown widespread mistrust in Western medicine among the African American community.
Discrimination continues to manifest itself in specific ways when it comes to pain management. For example, studies show Black and African American are significantly less likely to be prescribed opioids for pain than white patients. A grave consequence of this reality is that Black and African American patients are frequently severely undertreated for their pain; and, the under-prescribing may have life-threatening consequences.
Recently, Susan Moore, MD, a Black physician, documented a white doctor’s dismissal of her pain from COVID-19 and his reluctance to prescribe pain medication. Although Dr. Moore described her experience from the vulnerable position of a patient in her hospital bed receiving oxygen, she recounted the story with a confidence that revealed her authority in her field and her indignation that anyone need prove the severity of pain. Communicating via social media, she asserted, “I put forward and I maintain, if I was white, I wouldn’t have to go through that. He [the doctor] made me feel like I was a drug addict.” Dr. Moore passed away from the virus two weeks later.
Hispanic and Latinx
A predominant obstacle for proper treatment of pain in the Latinx community is the language barrier and cultural misunderstanding. Tan-McGrory says, “We have a very Westernized medicine but also a white medicine, so we don’t take into account how a patient who is speaking Spanish through an interpreter might express pain differently. We look for very Westernized markers of what we think pain is and culturally people may express it differently, use different terms that they maybe literally translate from their own language.”
Whether because of language barriers or implicit bias, the effect on pain care is clear. For example, a 2015 study from Anesthesia and Analgesia indicated that Hispanic children from low income backgrounds did not receive effective pain management after surgery. A 2003 study found that Hispanic participants were more likely to be dissatisfied with how their physicians treated them compared with non-Hispanic whites, especially in regard to factors like “listening carefully.”
Asians are the most dissatisfied with U.S. health care when compared to other ethnicities, according to one study by the University of Missouri. Defined by the U.S. Census Bureau as people with origins in the Far East, Southeast Asian, and Indian subcontinent, the term includes 30 specific ethnic groups.
Asian American populations must navigate language barriers and all the challenges that come with them; for example, even within China, there are 10 different language groups and even more dialects.
The group also experiences dissonance in care due, in part, to the schism between the holistic approach of Eastern medicine—such as traditional Chinese medicine or Ayurvedic medicine, which often incorporate mind-body strategies or herbal treatments—versus Western medicine’s pharmaceuticals-as-first-response to alleviate pain.
In her article “Pain Beliefs and Behaviors Among Asians,” Wei-Chen Tung, PhD, RN, professor emerita at the University of Nevada-Reno emphasizes the importance of understanding patients’ beliefs systems. For example, stoicism—the endurance of both pain and pleasure without emotion, is considered a positive trait in Chinese culture—while Buddhism, which holds suffering as an intrinsic part of living. Health care providers may misinterpret behaviors stemming from these values and wrongly assume the patient is not experiencing pain, therefore giving inadequate treatment.
American Indians and Alaskan Native
American Indian (AI) and Alaskan Native (AN) populations suffer from unique obstacles including limited access to pain care. For starters, the federally run Indian Health Service receives notoriously little funding. In addition, the majority of members of the AI and AN population now live outside of tribal lands—in fact, about four of every five AI and AN individual is now urban. Therefore, in order to receive care, patients must return to tribal facilities for treatment, which is often not possible financially, and appointment availability maybe limited.
AI and AN individuals also have highly unique cultural views of pain and health that emphasize focus placed on the community rather than the self, thereby only visiting a Western doctor when the pain becomes particularly unbearable. A 2015 study of 75 Native Americans representing 14 tribes found a disconnect between Western medicine and their own practices, beginning with what some considered lack of simple communication and listening. Some felt doctors were too busy looking at the clock rather than at the patient. Others believed that because they were visiting a Western doctor, their situation had become dire. Many relied on alternative remedies to reducing pain symptoms, including over-the-counter medications, massage, herbal remedies, prayer, exercise, or simply “toughening it out.”
Gerald Morris, MD, is a family practice physician in Michigan who currently maintains an outpatient practice with his tribe, the Pokagon Band of Potawatomi Indians. He points to the importance of improving cultural competency on the part of health care providers. When guiding residents, Dr. Morris emphasizes what he calls “cultural humility,” believing this ingredient will allow doctors and patients to collaborate to find the best treatment. Morris says, “It’s not possible for any one of us to know everything about every culture; however, we can all allow our patients to teach us.”
Native Hawaiian and Pacific Islander
Health statistics are either limited or nebulous for Native Hawaiian (NH) and Pacific Islander (PI) populations on account of insufficient research. Furthermore, until 1997, NHPI data was lumped together with those of Asian Americans, leading to a decrease in clarity about this specific population.
Nationwide, the population’s mortality matches the mortality rates found among the Black population of similar age-specific categories. After the age of 65, Native Hawaiians have higher expected death rates than Blacks or whites. The NHPI population suffer discrimination and socioeconomic circumstances that exacerbate their propensity for cardiometabolic-related disorders, according to some research.
Though these therapists are uncovered by most insurance companies, Hawaii has a high rate of complementary and alternative medicine for pain treatment. For example, energy therapies are used six times as much among adults in Hawaii than in the continental United States. Still, research shows NHPI patients frequently find Western medicine insensitive to cultural values. In a study regarding patient care satisfaction within the state, Martina Kamaka, MD, found NHPI participants called for improved cultural competency, including exposing medical students to treatments such as lă’au lapa’au, care which includes native plants, herbs, and spirituality. Currently, only one insurance provider, Aloha Care, covers some Native Hawaiian healing services.
Currently, medical schools across the country are implementing curriculum to address the issue of disparities in pain care. The Mayo Clinic Alix School of Medicine requires students to participate in an unconscious bias session. The University of Massachusetts Medical School requires all students take Harvard’s Implicit Association Test. And medical schools are requiring more courses focused on treatment of pain, such as Johns Hopkins’ Pain Care Medicine course created in 2010.
Dr. White, however, believes the best catalyst to empower patients is the presence of more physicians representing these specific groups. She calls for increased support for minority populations, so they can go into health care fields: “This is systemic, and we need to work from the top down. Doctors have the privilege to make these changes. However, you can have all these implicit bias trainings, but if the people aren’t there and we don’t have that diversity of the people in charge, then it doesn’t make a difference.”
Disparities in Clinical Trials
Minority populations are historically underrepresented in clinical trials, according to Owen Garrick, MD, MBA, president and CEO of Bridge Clinical Research in Oakland, California. While Dr. Garrick clarifies that a disproportionate representation of minorities is not always the case—such as in recent trials related to migraine and headache—he reflects on a stark example of underrepresentation: COVID-19 vaccine trials.
As early as April 2020, data suggested that minority populations were affected and died at a higher rate than the white population; therefore, accurate clinical trials for a vaccine would include a higher number of minorities than the general numbers in a population. Dr. Garrick believes research companies should have been planning early on to have an oversampling, knowing that certain populations were overburdened and underrepresented. He attributes this failing of misrepresentation to two main factors: the widespread mistrust minorities hold for the health care system, leading to an unwillingness to participate in trials; and a lack of ingenuity on the part of research companies to create connections that build the necessary conduits to ensure an accurate representation.
Dr. Garrick says that changing the structural inequalities that exist in this country are a bit beyond his reach, but as an individual, he can start chipping away in his own area. “I’m going to identify Black, Hispanic and Native American physicians, clinicians, and researchers that have the trusted relationships with these populations and they’re going to be part of my research study team.”