Abstract
Stacy Torres and Erica Torres on Healthcare Bias.
Keywords
As sisters, we share about 50 percent of our DNA and have faced similar challenges with obesity, autoimmune disease, and mental illness. We’ve also shared negative interactions with healthcare providers who have dismissed our pain and treated our symptoms with skepticism. No one should leave a medical office feeling humiliated, disrespected, or ignored. However, that happened to Erica recently. We know that this treatment is all too common for patients who belong to a racial, ethnic, or sexual minority, have a physical or psychological disability, low socioeconomic status, advanced age, and women.
Healthcare systems have sought to reduce costs by ensuring patients like us are ‘engaged’ and participate in treatment plans. Research has found improved health outcomes when patients ‘activate,’ which may translate to savings over time.
Despite overlaps in our health trajectories, Erica struggles more. A dislocated hip at birth delayed walking. While Stacy has maintained an 80-pound weight loss for two decades, Erica has twice lost and regained comparable weight. Our chronic conditions increase our cancer risk, but Erica already has thyroid cancer. While Stacy has had major depression, Erica received diagnoses of schizophrenia and schizoaffective disorder.
Through her own efforts, family, and program support, Erica has avoided inpatient psychiatric re-hospitalization. She never misses an appointment or a medication dose. Erica demonstrated her ‘engagement’ again as she considered gastric bypass surgery when her weight reached 336 lbs. She lost 66 pounds following a prescribed diet, attending support groups, and increasing physical activity. However, she regained the weight and received a referral to a medically-supervised weight loss program. The out-of-pocket cost posed a barrier for Erica, who receives SSI benefits and Medicaid, but we agreed to split the expense.
Staff informed orientation attendees that they screened applicants for sufficient time and commitment. Erica felt encouraged, but the co-director communicated other criteria. Afterward Erica said, “I felt stupid and like crying.”
The screening involved a detailed family history, which went fine. However, the interview turned sour during a series of questions about educational credentials. The co-director asked Erica if she had received a GED or a high school diploma. She shared details about her placement in special education classes and told him she had received an IEP diploma. “Oh, it’s not exactly a real diploma; It’s like a GED,” he said. She corrected him and explained that it was a ‘real’ diploma. He continued to challenge her intellectual ability to keep up with the work that the program required, such as following slides and taking notes. Erica explained that she kept pace with similar work in the monthly support groups she attended as a candidate for gastric bypass surgery. He continued to discourage her. She paid her $90 screening fee and never heard back again.
Unequal treatment in healthcare settings takes different forms. For example, Black women suffer higher maternal mortality rates, in part because of unconscious racial biases that lead providers to ignore life-threatening symptoms from strokes and heart attacks. Tina K. Sacks has researched how middle-class Black women combat racial stereotypes by dressing well, making a personal connection with providers, and conducting research to communicate their medical knowledge. The pressure to “perform” exerts an emotional toll that can worsen health.
We have different levels of “cultural health capital,” which Janet K. Shim defines as the “cultural skills, verbal and nonverbal competencies, attitudes and behaviors,” that patients and clinicians bring to medical visits. Erica does not convey high cultural health capital. She speaks simply, sometimes haltingly, asking for clarification. But no one should underestimate her. Erica has an amazing memory, a wicked sense of humor, and tremendous empathy.
We feel anger, pain, and frustration but see this incident as a window into the need for increased anti-bias training in healthcare professions. Ensuring responsive interventions for disadvantaged patients is not only a matter of decency but good economic policy. At 36, Erica has no diabetes, high cholesterol, or high blood pressure—yet. However, people with her mental illness diagnosis have 25 fewer years of life expectancy due to risks like cardiovascular disease, obesity, and smoking. Mitigating bias may reduce preventable complications. We’re proud of how Erica has advocated for herself, but patient engagement shouldn’t require building yourself up after the healthcare professionals who are supposed to heal, instead tear you down.