In 2018, I developed postpartum preeclampsia after giving birth to my daughter. It was one of the scariest experiences of my life. By now, everyone knows that Black birthing people and their babies have a higher mortality rate than our non-Black peers. But I’d never come so close to becoming a statistic.
At my first postpartum check-up, my nurse took my blood pressure. We talked about new-mom life, the weather, etc. But after she saw the reading, she told me to be still, laughed nervously, and took my blood pressure again. Then she gestured for me to hold on, left the room, and returned with another blood pressure cuff. She took my blood pressure a third time. Her face dropped and she left the room again to get the doctor. After he took my blood pressure himself, I was told to go to the nearest emergency room.
I was admitted right away for monitoring and treatment. My nurse asked how I was feeling, so I took a deep breath and told her the truth: that I’d had a really positive birth experience, but still I felt nervous being a postpartum Black woman in a hospital because of known racial bias that occurs. The nurse smiled, patted my hand, and let me know that she was well aware of the disparities. Then, she did her job – which is always the expectation, but isn’t always the reality. She offered me reassurance and helped me feel safe. My blood pressure returned to normal levels, and after a few more hours of monitoring, I was sent home with a blood pressure machine and strict orders to go to the nearest emergency room if my blood pressure climbed over 150.
A few days into my routine monitoring, I saw that my systolic blood pressure (the top number) was very high, around 180. My legs and feet were almost unrecognizable; they had swelled to quadruple their normal size. I sent a message to my primary-care doctor, who instructed me to go straight to the emergency department. He told me he would call ahead so that I wouldn’t have to wait in triage. My partner was unable to go inside with me because we had my then toddler and a newborn at home. I had no advocate but myself.
My doctor had called ahead, as promised, but although they had me pee in a cup right away, I wasn’t admitted. When I asked why, hospital staff said that they had to “wait for my drug test results before administering treatment.” No one explained why that was necessary. But one of my initial nurses was Black and confirmed verbally that no, a drug test was not best practice before beginning treatment when a patient presents with symptoms of preeclampsia, like I was at the time. (Research has shown that pregnant people who are Black are significantly more likely than others to be subjected to random drug screenings. One Journal of Women’s Health study of 8,487 live births, for instance, found that Black women and their newborns were 1.5 times more likely to be tested for illicit drug use than non-Black peers.)
I sat in triage for at least four hours before I was admitted and staff started treatment. While I waited, the attending on call (a white woman) came into the room and attempted to give me “dap” during her introduction. She spoke in a “blaccent” the entire time. I intentionally dissociated at that point. I closed my eyes and concentrated on my breath to calm myself down.
My blood pressure had climbed to over 200 by the time I was admitted and it was confirmed that I was suffering from preeclampsia. I was finally moved to a room, and nurses began magnesium-sulfate therapy, which is used to prevent seizures.
Once I recovered and was eventually discharged, I reached out to the Office of Institutional Equity and sent a recap of the entire experience. It took them almost a year to respond, and when they did, they just said they would use my experience as an “opportunity for development.”
So many patients don’t report the racial bias they experience because the consequences are eerily similar to when someone reports sexual assault. People are often questioned, not believed, or downright ignored.
I spent the next few years avoiding hospitals and doctors because of my experience. Fast forward to 2021, a “Home Edit” Netflix marathon watch session inspired me to reorganize my living room. I fell off my makeshift ladder, hit my head, and ended up in the same hospital, as it was nearest to me. I felt scared, and said as much, but it didn’t go well.
Immediately upon arrival, I attempted to tell my nurse about my previous experience. I stated that I believed racial bias played a role in the poor treatment I’d received. Then I asked if a Black provider was available to be on my care team. After all, studies suggest our chances of equitable treatment are increased when the provider is Black.
My nurse interrupted me several times to state that “color doesn’t matter” and that her “great-great grandfather was Black” so I would have to “make do” with her. She became visibly agitated after I asked her what training was required for staff around implicit bias.
Her change in mood made me feel so unsafe that I asked for a different nurse – I said I would take a new nurse of any race – and explained to the charge nurse why I wanted one. But my request was denied.
At this point, I’d started recording the conversation, but when I told the nurse I was doing so, security was called. This, too, falls into a dangerous and all-to-common pattern: Black hospital patients are more likely to face a security emergency response than their white counterparts, according to a new study published in The Journal of General Internal Medicine.
All told, I was denied an alternative care team and wound up being discharged from the hospital instead. I made an official complaint to the US Department of Health and Human Services shortly after.
Hospitals need to not only acknowledge disparity exists, they also need to track it and develop interventions that reduce those disparities to negligible numbers.
Unfortunately, my experience is far from unusual. Even when we do everything “right,” 56 percent of Black Americans say they’ve had a negative healthcare experience, including having to advocate for proper care and being treated with less respect than other patients, Pew Research Center reports. For that reason and more, 31 percent say they would prefer to see a Black healthcare provider.
There’s clearly disconnect and distrust between the healthcare system and the people it’s supposed to serve. In recent years, requests for DEI racial-bias trainings at large-scale institutions exploded after the murder of George Floyd, signaling an acknowledgment of the systemic problems in our country.
But this also highlights the system’s propensity for Band-Aid solutions. As a social worker, it’s my professional and personal opinion that education alone is not enough. DEI doesn’t always use restorative-justice interventions to support victims. Hospitals use a DEI team to manage risk so that hospitals will not be sued. If the mindset is risk centered versus person centered, progress will never be made. Hospitals need to not only acknowledge disparity exists, they also need to track it and develop interventions that reduce those disparities to negligible numbers.
After advocating for justice on social media for over a year, the hospital finally agreed to a private “mediation” on their terms. I was the only nonlawyer in the room, and I left the meeting early, in tears. I wouldn’t wish my experience on anyone else.
That’s why we spoke with experts to help arm you with the tools and knowledge you need to create a safer and more inclusive care experience – and to hold hospitals accountable for the work that has yet be done.
Be aware of your rights.
If you ever end up in a situation where you don’t feel comfortable receiving care from the provider assigned to you, you don’t have to sit there and endure a negative experience. “Patients have the ethical right to refuse care from whomever they want to refuse care from,” explains Mary Crossley, John E. Murray faculty scholar and director of the health law program at University of Pittsburgh Law. “If there’s a specific clinician with whom you’ve had a bad experience, you could say, ‘I don’t want that person,'” says Kimani Paul-Emile, professor of law at Fordham University.
However, it’s more difficult to advocate that you would like care from a specific person or a type of person. “Hospitals aren’t obligated to give a patient the clinician of their choice with regard to race or gender,” Paul-Emile says. And “there’s very narrow situations where rejecting an entire group of people would be appropriate.”
An example where a hospital might accommodate the request? In instances of past trauma (e.g., you specifically asked not to be seen by a male nurse because you had a bad experience with one in the past or are a sexual-assault survivor whose attacker was a man). The same type of accommodation can be applied to race-based requests, she says. “An older Black person in the South could very reasonably have had traumatic experiences in the healthcare system,” says Paul-Emile, leading to their request for a Black provider. But making that accommodation is up the hospital (most don’t have hard-and-fast rules in place), and oftentimes it’ll want to unpack what is behind the request – whether it’s bias or truly past trauma – before accommodating it.
That being said, if you’re in need of immediate care, it can make these types of requests more difficult to accommodate. “In more emergent situations, that may not be feasible,” says Kenneth Poole, former medical director of patient experience at Mayo Clinic Arizona and current healthcare executive. And in some hospitals, a Black physician may not be present (only 5.2 percent of emergency-medicine physicians are Black, according to Zippia, a career-recruitment website).
But that’s a conversation that hospital staff (whether it be the provider, an ethicist, or ombudsman) can have with a patient in, ideally, a calm and empathetic manner, making sure to take the time to listen to the patient’s concerns and make them feel more comfortable with the available provider, Paul-Emile says.
Don’t advocate alone.
If you’re not sure how to bring up your discomfort, know that you don’t have to do it alone. “Most hospitals have an ombudsman who’s responsible for dealing with patients’ concerns about the quality of the care that they’re receiving,” Crossley tells POPSUGAR. Their role is to serve you as an “in-house patient advocate.”
Getting an ombudsman involved early on in your care journey, especially if you have specific concerns regarding who you’re being treated by, could improve your patient experience and help you to more strongly assert your rights. You can ask someone on staff to get you connected with one. Some hospitals also have hospital social workers available to you at your request. And if you’re worried about impartiality when it comes to using either resource, know that you can request your own medical records for accuracy. You can also hire your own private patient advocate, as well.
Know that it’s not all on you.
Remember, we live in a country where 56 percent of Black Americans say they’ve had a negative healthcare experience – and that has nothing to do with the patients themselves. Our healthcare system is broken, and it’s going to take a lot more than patient advocacy to turn things around. Of course, resources like racial-bias and DEI training is a start. But that is the bare minimum. If hospitals and providers really want to make an impact, they must overhaul the system.
According to the Commonwealth Fund, this includes examining institutional policies, establishing accountability frameworks, auditing medical-school curriculum, investing in scholarships for people of color interested in healthcare professions, training leadership and staff in antiracism principles, and creating real-time reporting initiatives to track and respond to racism and other discriminatory practices – just to name a few.
Some hospitals are already implementing these strategies, proving that large-scale change isn’t impossible. “Leaders at University of California Los Angeles (UCLA) Health, for example, have created equity dashboards to detect variation in patients’ health care quality or outcomes by race, ethnicity, gender identity, age, sexual orientation, and community-level social vulnerability,” the Commonwealth Fund reports. “The goal is to use the dashboards to identify inequities and find ways to mitigate them.”
Penn Medicine is also taking large steps to ensure a more inclusive patient experience, recently implementing a digital platform, Lift Every Voice, that will give emergency-department staff, “an easy way to make anonymous reports when, for example, managers treat Black employees unfairly or Black patients receive disparate treatment from staff,” according to the Commonwealth Fund.
These implementations and others like them have the power to hold people in power accountable and shine an undeniable light on the racial inequities that persist within US health systems.
Until these large-scale changes are made, it’s important to remember that when you’re dealing with your own personal health, you need to be concerned with your safety and well-being first and foremost. If that means speaking up or filing a complaint, fine – but if it means removing yourself from the situation as soon as possible and seeking alternative care altogether, that’s fine too. Your health and safety comes first, always.
Editor’s Note: POPSUGAR reached out to the hospital Megan Torres visited and received the following response: “We are unable to comment on any claims related to individual patient care due to federal privacy laws. However, [we] denounce racism in all forms and [are] firmly committed to improving health equity and reducing health disparities in our community. We’re dedicated to providing unbiased, high-quality care for everyone.”
– Additional reporting by Julia Craven and Alexis Jones
