By Kirsten Ballard
First, do no harm.
It’s an ancient phrase widely embraced as a basic standard for health care providers. And yet for so many, navigating the health care system is steeped in harmful institutional bias and discrimination on the basis of race, gender, sexual orientation, religion, disability status, and other factors. The result? Enormous disparities in health care and access.
Mara Youdelman, JD, managing attorney at the National Health Law Program, says disparities are prevalent in every aspect of health care. “Health disparities exist both in access to care and also, once someone has access, getting care,” she says. “It’s based on centuries of structural racism as well as ongoing disparities today. Often, health care providers don’t recognize how their own privilege and bias impacts the care they provide to people of color, people with disabilities, and other underserved individuals.”
Federal protections from discrimination
While the Hippocratic oath may not spell out that discrimination is wrong, our laws do.
A small fleet of laws passed—from the 1964 Civil Rights Act to the 2010 Affordable Care Act (ACA)—makes it illegal to discriminate on the basis of race, color, national origin, sex, age, or disability. But these protections may ebb and flow based on current politics; in 2020, for example, the Trump Administration rolled back several protections in the ACA.
While the nuances of federal protections may change to some extent, there are guard rails that have historically remained consistent. For example, federal regulations require hospitals participating in the Medicare and Medicaid programs to establish a grievance process that allows patients to address concerns without fear of retribution or discrimination.
Options for filing complaints
Isiah Lineberry has more than 20 years’ experience in the health policy realm, focusing his career on improving quality of life for children and families with a specialty in rural areas. He also has experienced discrimination firsthand as a Black man seeking medical treatment in the United States.
While he acknowledges he’s had plenty of marvelous, patient-centered care encounters where he’s been treated with dignity and respect, others have been adverse experiences.
“In one situation, I went to a major academic health center. I went to the ER and overheard the ER physician say, ‘There’s probably nothing wrong with him so we’ll modify that in the chart,’” he recalls. He lodged a formal complaint.
“There was a process; was the resolution to my satisfaction? No. But there was a medium for making a complaint. I’ve had several situations in an ER setting, some I’ve followed through on, some I didn’t. Part of that deals with the fact there’s such a level of frustration sometimes. It’s difficult to always follow through. Sometimes you get fed up.”
He also relies on Google reviews and sites like Vitals.com to research the available care team and what people say about them.
“I’ve had adverse experiences with a couple of physicians,” he says. “One said, ‘If you don’t like the way I’m providing care, you can find someone else.’ And that’s what I did.”
While some hospitals and health care facilities have patient satisfaction surveys, Lineberry recommends writing a letter directly to the practice manager, owner of the practice, or CEO.
“You have to document what happened in the letter, so they know it’s more than a flippant concern,” he says. Document what occurred, the dates, and names of people involved. State the facts about the interaction, why you felt it was discriminatory, and what bias was displayed. Mention any other types of disrespectful attitudes.
You can also file a complaint online with the Joint Commission (jointcomission.org), a private, nonprofit group that accredits around 80 percent of U.S. hospitals. The commission requires accredited organizations to protect the rights of individuals and prohibit discrimination. Their patient-centered communication standards guide providers to assure that people of all races, backgrounds, disabilities and income levels receive care that is free of prejudice.
Other venues for elevating complaints include your state’s health department, reaching out to advocacy groups that operate in your intersection, writing the board of the medical practice, seeing if the practice has a patient advisory council, and contacting the press.
“Certainly talking to members of the media and shining a spotlight on a particular facility or pattern of discrimination is also an effective way to push for change and may get a more immediate action than the time it takes to file a lawsuit or administrative complaint,” says Youdelman.
Options for taking legal action
Because of federal laws, you can file a civil rights complaint with Health and Human Services (HHS) if you believe that you have been discriminated against because of your race, color, national origin, disability, age, sex, or religion. Filing is free and can be done online, by email, by mail, or by fax. You have up to six months after the incident to file.
While the process can take some time, HHS is legally obligated to investigate the claim. If they have jurisdiction, HHS will interview participants, obtain documentation, and issue a ruling. If discrimination is found, they will take corrective action.
Lawsuits for health care discrimination can take time and money. Many nonprofits offer support, pro-bono work, or other resources. A law professional can help you assess your case and advise on how to move forward. Youdelman suggests looking into state laws and regulations as well when considering legal action.
Fortunately, patients have specific recourses when they face discrimination. Unfortunately, the actionable solutions put the responsibility and work on the patients.
Before battling discrimination in health care, be sure to focus on self-care. If you have access to mental health professionals you trust, they can be a good resource to mitigate the mental anguish of discrimination.
“Confronting [discrimination] does present some challenges,” says Lineberry. “But definitely if your care is being compromised, confront, and be prepared to leave. If that’s your absolutely only care option, get a pulse on the practice. What’s been overall experience with practice? Is what occurred something out of ordinary, something unusual, does the practice have a [sign] that says ‘let us know if you have concerns, we want to know?’”
It can be intimidating to complain while it’s happening, so many may feel compelled to do it later on. The important thing to remember is that there is no wrong way to deal with discrimination, even if that means you need to focus on self-care and not say anything at all.
But if you are able to make your concerns known, it can help create much-needed change. “If it happens to one person, it will likely happen again to others—which is why we should all speak up,” says Youdelman.