Implicit Bias and Systemic Oppression
In 1999, Congress asked the Institute of Medicine to answer the question: Does quality of care differ based on a patient’s race or ethnicity? The answer was irrefutably affirmative—across every procedure, test, and diagnosis.
Medicine is far from the great equalizer. Race continues to impact healthcare delivery and grossly alter health outcomes. American Indians have a lower life expectancy than the US population at large by 5.5 years.1 Latino/Hispanic populations have a 50 percent higher death rate from diabetes.2 As discussed earlier, black women are three to four times more likely to die giving birth than white women.
The first source of institutional racism is racial variance in economic status, which impacts access to healthcare. Among full- and part-time workers in the United States, blacks in 2015 earned just 75 percent as much as whites in median hourly earnings. Hispanic men earned $12 for every $17 a white woman made. Among women across all races and ethnicities, hourly earnings trailed those of white men.3
The way money flows in and out of a household directly impacts access to healthcare services. Yet despite the United States having one of the largest income-based health disparities in the world, racial differences in health outcomes cannot be explained solely by socioeconomic status. The problem extends beyond societal barriers to care, or the residential segregation that still exists in every major US city to cause them. Racism not only prevents individuals from accessing care, it’s at play as they receive it.
If you’re black or Hispanic, you’re half as likely to receive pain medication in the ER for a broken bone than if you’re white.4 Black people are less likely to be admitted to the ICU than white people in critical situations. Black babies are 2.2 times more likely to die before their first birthday than white babies are. Out of the one million children diagnosed with appendicitis each year, 43 percent of white youth were prescribed opioids, relative to 21 percent of black youth.5
Something is happening to patients at appointments, in hospitals, and during procedures that indicates, in practice, care providers are devaluing the lives of non-white patients.
We’ve known this to be true for a long time. Research confirms repeatedly that medical racism is real and that the medical community’s gestures to acknowledge it have in no way eradicated the problem.
In practice, racial discrimination takes several shapes. First, as implicit bias. As dangerous and insidious as outright discrimination, this kind of bias impacts teachers, cops, doctors, nurses, and civilians alike. Humans like to categorize. It’s evolutionary, a mechanism of survival. From infancy, we use categories to assimilate information and navigate our surroundings. This means we’re prone to stereotyping. If someone is “other” (or different from us) and we haven’t had a dynamic variety of past encounters with this “other,” we fall back on the most basic stereotypes society has provided to us.
In the case of medicine, this means minority patients can be treated as dangerous, promiscuous, drug-seeking, delusional, dishonest, more resistant to pain, less educated, and less capable of thriving.
The problem of implicit bias in medicine is compounded by non-factual belief systems still held by the medical community. In a 2016 study examining why black patients are systematically undertreated for pain relative to white patients, researchers found that half of white medical students and residents endorsed the idiotic belief that black skin is thicker than white skin, and thus the population experiences pain less significantly.6 This egregious thinking, coupled with the considerable power these students and practitioners wield, is a disgrace.
Subconsciously or otherwise, these realities reflect a warped medical consciousness that has persisted in this country for decades. It’s also a cycle that reinforces itself. Discrimination in clinical settings contributes to treatment nonadherence, influencing patient outcomes. It impairs communication between patients and providers, with patients rightfully discounting feedback and avoiding the healthcare system, exhibiting the stereotyped behavior and clinical outcomes which, in turn, reinforce provider beliefs and decision-making.
Much of this book is prescriptive: what to know, what to do, where to turn when coming up against problems in the healthcare system that negatively impact your care. Because of the insidious nature of systemic racism, the answers on this topic are not straightforward. Those on the receiving end of medical racism are forced to make difficult decisions each time they seek out care. There’s information about what to do if you’re a provider and you encounter a racist patient, however there is a dearth of information about what to do when the roles are reversed, when the stakes and the costs are higher in every way. It’s a vacancy that demands the medical community’s sincere attention, and it’s past time patients are included in the discussion on a mass scale.
The reality until then is, unjustly, that the onus is on patients to address racism as it unfolds before them. The tools and skills laid out in this book are intended to empower all patients in the face of adversity in the healthcare system. Below are additional resources that can inform you in these circumstances.
Know your rights, and have a copy of them accessible to you whenever you enter a medical encounter.
As a patient, you have the right to:
Be informed about your care and options for treatment
Be treated considerately and respectfully
Be treated with privacy and confidentiality
Seek alternate opinions
Understand the legal reporting system
Know the cost of your care and options for paying for it
Leave your provider and seek treatment elsewhere
Per the Medical Code of Ethics, all patients have a right:
To courtesy, respect, dignity, and timely, responsive attention to his or her needs.
To receive information from their physicians and to have opportunity to discuss the benefits, risks, and costs of appropriate treatment alternatives, including the risks, benefits, and costs of forgoing treatment. Patients should be able to expect that their providers will provide guidance about what they consider the best course of action for the patient based on the provider’s objective professional judgment.
To ask questions about their health status or recommended treatment when they do not fully understand what has been described and to have their questions answered.
To make decisions about the care the provider recommends and to have those decisions respected. A patient who has decision-making capacity may accept or refuse any recommended medical intervention.
To have the providers and other staff respect the patient’s privacy and confidentiality.
To obtain copies or summaries of their medical records.
To obtain a second opinion.
To be advised of any conflicts of interest their provider may have in respect to their care.
To continuity of care. Patients should be able to expect that their provider will cooperate in coordinating medically indicated care with other healthcare professionals, and that the provider will not discontinue treating them when further treatment is medically indicated without giving them sufficient notice and reasonable assistance in making alternative arrangements for care.7
Law Help (https://www.lawhelp.org/resource/legal-aid-and-other-low-cost-legal-help) can help patients search for free legal aid programs by state and territory.
American Bar Association: Medical-Legal Partnerships Pro Bono Project, Washington, DC, Office
1050 Connecticut Ave. NW, Suite 400, Washington, DC 20036, 202-662-1000.
Disability Rights Legal Center (http://drlcenter.org/) is a nonprofit, public interest advocacy organization that champions the civil rights of people with disabilities as well as those affected by cancer and other serious illness. It includes the Cancer Legal Resource Center (http://cancer legalresources.org/).
Community Catalyst (https://www.communitycatalyst.org) is a place to start. Its mission is to organize and sustain a powerful consumer voice to ensure that all individuals and communities can influence the local, state, and national decisions that affect their health.
Black Women’s Health Imperative (https://www.bwhi.org/) is a national organization dedicated solely to improving the health and wellness of the nation’s twenty-one million black women and girls. It contains a number of resources on women’s health.
The U.S. Department of Health and Human Services Office of Minority Health (https://minorityhealth.hhs.gov/omh/content.aspx?ID=147&lvl=1&lvlID=3) provides information with a primary focus on communities of color within the United States and its territories.
If You Don’t Speak the Language
Every patient has the legal right to a professional interpreter. To understand, ask questions, and engage in conversation about their health is a patient’s fundamental right.
Providers can make the mistake of relaying health information in English to someone who doesn’t speak it fluently. I’ve witnessed it in both community and hospital settings. Research has demonstrated that untrained people who serve as interpreters on an ad hoc basis (like family or friends of the patient, or someone who took the language in college) are more likely to make clinically significant mistakes than qualified medical interpreters. With all the medical jargon and legalese, it’s often a challenge even for native English speakers to follow medical language in English.
It is a civil right to have access to an interpreter at a hospital, community clinic, or private practice. Clinicians are required by law to offer and facilitate this service up front. Medical interpreters are an essential part of the care team, and many hospitals have dedicated language service departments. When an interpreter is not available in person, there are phone-in services, as well as portable computerized devices that pull up a live interpreter.
Being denied an interpreter can result in longer hospital stays, greater risk of infections and falls, greater risk of readmission after being released, and ineffective management of chronic disease.
If English is not your first language, request that an interpreter is present at appointments and hospital stays, especially prior to surgery. If the situation is serious and no one delivers on this request, ask for a social worker.
If English is your first language and you witness someone else struggling to communicate in a medical setting, speak up.
Both my dad and my uncle served in Vietnam and were exposed to Agent Orange. They’ve had health problems as a result: my dad, diabetes, and his brother, Parkinson’s. I’ve had a glimpse into the Veterans Affairs (VA) system, both through my family and through the older gents who regaled me with war stories during my days in geriatric care. I’ve met vets with MS, chronic heart failure, post-traumatic stress disorder (PTSD), and cancer—and what they say about the care they receive through the VA ranges from “piss-poor” to “exceptional.”
Just like other hospitals, VA hospitals vary in quality, and some patients with serious health conditions even relocate to a region with a superior VA hospital. They can also seek out advocates well-versed in veterans’ medical coverage. My dad didn’t go out looking for an advocate when he was diagnosed years ago, but he got one, serendipitously, in the form of a secretary. When he was leaving one of his appointments, she looked at his paperwork and said, “Mr. Goldberg, you served in Vietnam in 1968, right? Well, it’s likely this is Agent Orange, sir, and that means you qualify for disability. I want you to go to that desk right over there and ask them if you qualify.”
Turns out—he did. He started receiving a check for $165 each month. A year later, it was bumped up to $1,500. This change was again due to luck—a friend of his who worked for the Veterans of Foreign Wars (VFW) told him that since he’d started taking medication for the disease, he qualified for 70 percent disability coverage instead of 10. Like all patients do, sometimes veterans will need to remind the VA system and its players how it is legally bound to help.
For veterans who have been diagnosed with a new condition or are struggling with coverage or benefits, the VFW (http://www.vfw.org) is an excellent resource. It consists of a nationwide roster of volunteers who serve as professional advocates to help veterans cut through bureaucratic red tape. As my dad says, “They’ll change the whisper of a veteran to the assertive roar of an advocate.”
If You Have a Substance-Abuse History
If you’ve ever had a substance-abuse problem or you take methadone or Suboxone, it is important that you find care providers who will respect and communicate with you. Patients struggling with addiction today often find themselves in hostile environments during medical encounters, both at appointments and during hospital treatment. The result can be inadequate pain treatment or general care disparities due to defensive prescribing practices as discussed (“Pain Management in an Opioid Epidemic”).
If you fall into this category, this is a message to make sure that you and your primary care provider can communicate effectively. This will help you create plans for managing pain and addiction in tandem.