Equity360: Gender, Race, and Ethnicity: Why Don’t We Believe Our Patients?

In late November 2020, Dr. Susan Moore, an internist, was admitted to Indiana University Health North Hospital in Carmel, IN, USA for tachycardia, tachypnea, and fever due to COVID-19 [2]. In her December 4 Facebook post, Dr. Moore wrote that even though she was still in pain, specifically in her neck area, and short of breath, her doctor wanted to send her home after she had received two doses of remdesivir. According to Dr. Moore’s post, her doctor told her that she did not need additional doses, he didn’t know why she had pain in her neck, and in his view, she didn’t have trouble breathing. In her post, Dr. Moore wrote that she was in “so much pain” but her physician told her he was “uncomfortable giving her more narcotics” [18].

“My neck hurt so bad,” she said in a video posted to Facebook from her hospital bed. “I was crushed. He made me feel like a drug addict, and he knows I’m a physician. I don’t take narcotics” [18].

After speaking with a patient advocate, Dr. Moore wrote on her Facebook page that the hospital ordered a CT angiogram, which showed “new infiltrates in my lungs superiorly and new pleural effusion since December 1 in addition to new mediastinal lymphadenopathy” [18]. After the imaging, doctors asked her what they could do for her pain. “Why do I have to prove that there’s something wrong with me in order for my pain to be treated?,” Dr. Moore asked on her Facebook page [18].

According to reports [2, 4, 14], Dr. Moore was discharged to her home on December 7. But just 12 hours later, she was admitted to another hospital after her temperature spiked and blood pressure plummeted. At the new hospital, she wrote that she was receiving compassionate care as well as pain medicine [18]. Tragically, Dr. Moore’s condition deteriorated. She died on December 20 [14].

After her death, Dr. Dennis Murphy, Chief Executive Officer of Indiana University Health, issued a statement that he was “deeply saddened by her death and the loss her family is feeling.” He wrote that he saw several human perspectives in the story Dr. Moore told, “that of physicians who were trying to manage the care of a complex patient in the midst of a pandemic crisis where the medical evidence on specific treatments continues to be debated in medical journals and the lay press. And the perspective of a nursing team trying to manage a set of critically ill patients in need of care who may have been intimidated by a knowledgeable patient who was using social media to voice her concerns and critique the care they were delivering” [11].

There is a lot to unpack here. I share this story not to question whether Dr. Moore received evidence-based medical treatment for COVID-19 or to be insensitive to the enormous stressors facing her medical team and hospital during the pandemic. Nor do I share it to discuss Dr. Murphy’s implication that Dr. Moore influenced her experience (and possibly her outcome) by potentially “intimidating” the nursing staff by her medical knowledge and use of social media. Rather, I share this story to ask, why don’t we believe our patients?

Maybe we don’t believe our patients because they are not always completely truthful with us. Research confirms that patients don’t always tell us important information. In a large study [13] in which two different surveys were administered, 81.1% and 61.4% of participants avoided disclosing at least one type of information to their clinicians. Commonly, participants did not disclose that they disagreed with their clinician’s recommendation or that they did not understand their clinician’s instructions [13]. Why did these participants not share this important information with their clinicians? The most common reasons were not wanting to be judged or lectured, not wanting to hear how harmful their behavior is, and being embarrassed. In both surveys, participants who were women, younger, and with worse self-rated health were more likely to report withholding information [13].

Our suspicions that a patient is not completely truthful could prompt us to uncover more accurate information or adjust the information the patient provides us based on our assumptions. Such adjustments may lead to better treatment and outcomes. In medical school, I was taught to assume that a patient always underreported their alcohol consumption and to double the amount they tell us. To this day, I cannot listen to a patient reporting their alcohol intake and not, in the back of my mind, question the veracity of their response. Has my skepticism regarding alcohol intake allowed me to help my patients avoid alcohol withdrawal? Possibly. But there is the alternative scenario: what if the patient is telling the truth? Not believing the patient could have negative consequences. In my opinion, this occurred with Dr. Moore.

While patients may not tell us everything, or offer inaccurate information, patients want us to know why they are seeing us. Sometimes we do not give them much of an opportunity to do so. Dr. Moore is not the first patient, or woman, to have her concerns either unheard or not acted upon by her care team. In one study analyzing recorded clinical encounters [17], the patient’s concerns and expectations were elicited in only 30 of 61 (49%) encounters in primary care and 10 of 51 (20%) encounters in specialty care. In 67% of the encounters in which the clinician elicited patient concerns, the clinician interrupted the patient after a median of 11 seconds [17]. In earlier research [16], patients spoke for 12 seconds before being interrupted by a resident physician. Women residents interrupted patients less often than men, and all residents interrupted women patients more than men.

If we don’t listen to patients, how can we understand their concerns? Why do we interrupt women patients more than men? Do we unconsciously believe that women are less likely to provide accurate information? Society conditions us to believe that women exaggerate their symptoms, especially pain [8]. Is this the reason why we interrupt them with questions earlier than men? While we seek clarifying and more complete information with our queries, perhaps we are also seeking greater confidence in the accuracy of their history. Does our bias that patients are not always accurately disclosing information lead us to not believing their symptoms?

Now let us add in the issue of race. Dr. Moore was a Black woman. Her doctor was a white man. “I put forth, and I maintain, if I was white, I wouldn’t have to go through that,” Dr. Moore said in her video post [18]. Later in the same video, she said: “This is how Black people get killed, when you send them home and they don’t know how to fight for themselves” [18].

Are we more likely to distrust Black patients? Research suggests this is true. In patients with long bone fractures, inadequate pain management was more likely if the patient was Black as compared to white [15]. In a study published [1] and spotlighted in CORR [12], Ali et al. found racial disparities in the timing of radiographic assessment and surgical treatment of hip fractures. Such disparities even extend to pediatric patients. Black and Hispanic children with fractures are less likely to receive adequate analgesia compared with white children [6]. I think we all know a fracture is painful, so why would we treat a patient’s pain differently based on the color of his or her skin? And do we think children are not being truthful?

Perhaps we believe, either consciously or unconsciously, that there are biological differences in pain related to race and ethnicity. In a fascinating 2016 study of medical students and residents [9], about 50% reported that at least one of the false biological belief items regarding Blacks compared to whites was possibly, probably, or definitely true. When asked if Blacks’ skin is thicker than whites’, 40% of first-year medical students and 25% of residents believed this to be possibly, probably, or definitely true. The authors concluded that their results provide evidence that false beliefs about biological differences between Blacks and whites influence the way providers perceive and treat pain in Black patients [9].

If we are less likely to believe Black patients and to harbor unconscious bias related to their symptoms, are Black patients less likely to believe us? In a joint project between the Kaiser Family Foundation and ESPN’s The Undefeated, the Survey on Race and Health [7] reported that seven out of 10 Blacks believe the healthcare system “very often” or “somewhat often” treats people unfairly based on race, representing an increase from 56% when a similar question was asked in a 1999 poll. A shocking one in five Black adults reported that they or a family member were treated unfairly in the past year [7]. Given the legacy of mistreatment of Blacks by the healthcare system, we should not be surprised that Black patients do not believe that we are treating them as we would a white patient.

How can we learn to trust our patients and how do we get them to believe us? One conscious choice we can make right now is choosing to believe. We cannot eradicate all disease and pain, but we can tell our patients that we believe that they are in pain. We can recognize their suffering even if we cannot alleviate it. In the words often attributed to Dr. Edward Livingston Trudeau, our work is “to cure sometimes, to relieve often, to comfort always” [5].

But we also need to mitigate our unconscious biases by directly confronting them. Bias, both conscious and unconscious, is part of being human. As an individual, I would prefer to operate on a patient of normal weight instead of a morbidly obese patient. Many of us may have this bias. I try to mitigate this bias by focusing on the benefits of surgery for that patient. This is work we can all do as individuals regarding our personal biases. We can also look to structural processes to combat bias. In my experience, bias is rarely discussed in the clinical setting. What if we built into our care review processes the standard question of whether anyone on the team perceives bias in the care being provided? I propose that this would drive greater awareness of individual and systemic biases related to patient care.

We should also survey our patients to determine whether they believe we are providing equitable care to them without regard to their gender, race, ethnicity, sexual orientation, or financial status. While the current Hospital Consumer Assessment of Healthcare Providers and Systems patient satisfaction survey required by the Centers for Medicare & Medicaid Services (CMS) for all hospitals in the United States asks patients 29 questions about their experience, none of the questions ask whether they believe the care they receive was equitable. This is an opportunity for CMS to improve this survey tool. Such information needs to be obtained in a survey format, as it is unlikely that patients would honestly answer a direct question on equitable care posed to them by an individual member of their care team. Such survey data could identify the need for bias training and system improvements. Simply asking such a survey question will show patients that you or your system are sensitive to this issue, that you care about them as people, and that you are committed to equitable treatment.

Finally, if we don’t want patients to withhold information from us or feel like we are judging them, I recommend following the responsibility without blame approach [3] highlighted by Dr. Casey Humbyrd in her latest “Virtue Ethics in a Value-driven World” column in CORR® [10]. This approach begins outside the exam room, meaning that we need to avoid stigmatizing language when talking about our patients. As Dr. Humbyrd notes, “we should dissociate their behaviors from any type of moral calculation” [10]. Inside the exam room, we should have an open discussion, asking questions like “what plans can we put together to achieve your desired goal?” This approach gives the patient ownership of his or her recovery while showing that you, the physician, are invested in them achieving their recovery goals as well.

Dr. Susan Moore may have still succumbed to COVID-19 even if she felt her medical team believed her pain. But she would not have suffered as she did, nor would have her family. Let’s choose to believe.