A doctor doubted a Black woman’s pain

Editor's note: This story has been updated to include information from IU Health shared post-publication.

At sunset Henry Moore sits down on his bed at Willkie South. After a long day of classes, the gym and his church group, he needs quiet.

Then he remembers. It’s Oct. 2. Today would’ve been his mom’s 56th birthday.

The 23-year-old IU senior closes his eyes. He sits in silence for two minutes. Behind him, the air conditioning drones.

Henry’s mom used to bake cakes for her friends and family. Some years she made vanilla or chocolate cake. Other years she made lemon merengue pie. Sometimes, Henry and his mom worked together in their kitchen to make Jamaican rum cake. An involved process, yes — the recipe took two days — but the feeling of getting coconut, cherry and cinnamon all in one bite was worth it.

He opens his eyes. He can still taste the coconut and the cherry and the cinnamon.

“Happy birthday, mom,” he whispered.

•••

Henry Moore’s mother, Dr. Susan Moore, died from COVID-19 five days before Christmas in 2020. She was only 52 years old.

In a Facebook video and subsequent posts throughout the month of December, Moore said she received inadequate healthcare from her doctor at Indiana University Health North Hospital in Carmel. Even though she was a physician, she said the doctor didn’t believe her when she told him she was in pain and needed medication to treat COVID-19.

“He made me feel like I was a drug addict,” Moore said from her hospital bed in the video.

In her account, she blamed her poor care on the fact she was Black.

“I put forward and I maintain that if I was white, I wouldn’t have to go through that,” she said.

Racial disparities in American health care have been extensively chronicled, dating back to slavery; doctors rarely visited enslaved people, and when they did, they provided little to no information about the patients’ condition. The outbreak of COVID-19 further exposed the prevalence of these racial disparities. Infection and mortality rates during the pandemic were significantly higher for Black people than for white people.

Black people often receive poorer care compared to other patients. Doctors sometimes don’t believe a patient when they say they’re in pain and make inaccurate assumptions about Black patients. Black women are even more likely than Black men to receive unfair treatment from a healthcare provider.

Doctors also didn’t believe Henry’s mom when she said she was in pain.

Now, sitting in his dorm room, Henry suddenly finds himself without his mother there to lean on.

•••

Before contracting COVID-19, Moore worked as a primary care physician at a women’s prison in Indianapolis. It was there she may have encountered an agent, like dust or a virus, that triggered sarcoidosis, an autoimmune disease that attacks the lungs, causing fatigue and shortness of breath, Henry said. At one point, she was taking 14 different pills. She was stressed. Her immune system became compromised. She became increasingly isolated and didn’t want to leave her room.

Her dad tested positive for COVID-19 on Thanksgiving in 2020. She then tested positive for COVID-19 three days later. That's when things got worse.

Her neck became stiff, and she couldn’t breathe enough to sleep well. She felt very weak; she could barely walk. So she decided to go to the hospital closest to her house at the time, IU Health North. In her Facebook video, Moore said when she asked for Remdesivir, a medication commonly used to treat COVID-19, the doctor was hesitant to give it to her.

“It wasn't enough,” Henry said. “My mom said it was like giving a Tic Tac to a whale. That was her exact analogy; it was so small, so miniscule for the amount she needed, and she just didn't feel like her authority as a physician was noted.”

Dr. Moore’s heart rate sometimes broke 150. She had a fever of 101.5 degrees Fahrenheit. She would call Henry late at night crying.

“I can't sleep, I can't do this,” Henry recalled her saying.

He encouraged his mom to document her poor care in the hospital. So, she posted a 7-minute Facebook video.

“(The doctor) wanted to send me home,” she said in the video. “At that time, I’d only received two treatments of the Remdesivir. He said, ‘ah you don’t need it, you’re not even short of breath.’”

Moore's eyes widened.

“I said, yes I am.”

Moore started tearing up in the video.

“I was in so much pain from my neck. My neck hurt so bad,” she said. “I was crushed. He made me feel like I was a drug addict, and he knew I was a physician.”

She asked to be sent to another hospital for better care. But soon after, she got her results back from a scan of her neck. They found something wrong: the lymph nodes in her lungs were inflamed, and there was excess fluid.

Suddenly, she said, the doctor was ready to treat her pain.

•••

Henry and his mom moved 21 times before high school: Michigan, Indiana, Ohio, Florida. Minnesota, Colorado, Texas. The one constant throughout it all was his mom.

“We were two peas in a pod,” he said.

When Henry was in elementary school, he and his mom would read books together after school to help him catch up with his classmates’ reading levels, such as “The Time Machine,” by H.G. Wells or “Gulliver’s Travels,” by Jonathan Swift. After reading the books, they’d also watch the movies and compare.

Outside of school, they would cook together. The last Thanksgiving they spent together, they stayed up all night cooking. Occasionally, they’d watch Hell’s Kitchen and Master Chef together. Moore was passionate about cooking; she had wanted to go to culinary school after Henry moved out, but she was never able to.

One time for his birthday, she baked pineapple upside down cake. She would also tell him the story of the day he was born. Her water broke at 9 p.m. Oct. 17. He was born the next morning at 3:15 a.m., three weeks premature. It took him two days to start crying.

This year for his 23rd birthday, Henry stayed up until 3:15 a.m. to tell himself the story instead.

•••

In mid-December, doctors allowed Moore to go home with an oxygen tank. Henry thought she should’ve stayed in the hospital if she still needed oxygen, but she was happy to be home. She didn’t trust the doctors there anymore.

In her Facebook update post, Moore wrote, “I am home in my own bed❤️”

The next morning, she was still fatigued and short of breath and had a 103-degree fever. Henry sent her to a different hospital that day, Ascension St. Vincent Carmel Hospital, after the nurses called to check in.

On Facebook, she reported she was receiving compassionate care, but by now she’d been diagnosed with pneumonia.

A few days later, the hospital asked Henry for permission to put his mom on a ventilator. The last time he talked to her on the phone, he could hear her coughing. She was starting to cry.

“I want to see you make it to college. I want to see you choose your career,” Henry recalled his mom telling him. “I’m fighting for you.”

Even near the end, she was thinking about her son.

•••

The day after she died, he broke the news to his maternal grandparents.

His grandma started sobbing. His grandpa rubbed her back.

“She’s okay,” he told his grandma. “She’s in a good place now.”

Both grandparents have dementia. His grandma forgot 10 minutes later. His grandpa remembered for a few hours before he also forgot again. Every time they realized that their daughter was gone, they would react the same way as the first time. His grandpa would rub his grandma’s back as she cried.

Henry told them five different times. By the time Christmas came around five days later, he stopped trying to tell them.

•••

Four days after Dr. Moore died, Dennis Murphy, chief executive officer for IU Health, released a statement expressing his condolences. After a preliminary review, Murphy said he didn’t believe the medical team “failed the technical aspects of the delivery” of Dr. Moore’s care. He attributed the potential lack of proper care to the time constraints the pandemic presented.

IU commissioned a panel of healthcare and diversity experts to investigate her allegations of racial bias in her care. The panel went over the medical records, interviewed IU Health personnel and reviewed the hospital’s policies and procedures. Five months later, in May 2021, the panel returned with its findings. The treatment Dr. Moore received, the report found, did not contribute to her untimely death. However, her care was marked by an absence of understanding.

“There was a lack of empathy and compassion shown in the delivery of her care,” Murphy wrote in a press release. “Cultural competence was not practiced by all providers and several caregivers lacked empathy, compassion and awareness of implicit racial bias in the delivery and communication of Dr. Moore’s care.”

The panel recommended training sessions that teach staff how to improve communication between patients and staff, as well as diversity, equity and inclusion training that focuses on microaggressions, anti-racism and unconscious bias. Plans also included hiring a DEI expert to analyze the culture of IU Health hospitals.

After multiple requests, IU Health would not provide any further information on whether these recommendations were followed. After the story published, IU Health confirmed it did follow the panel's recommendations and linked to a DEI page.

According to Steven Langer, a medical malpractice lawyer that worked on Dr. Moore’s case, an internal negligence claim was filed and resolved. After multiple calls, emails and a public records request to IU, neither IU nor Langer offered any additional information on the case.

•••

Following Dr. Moore’s death, state Rep. Robin Shackleford, D-Indianapolis introduced a bill to require healthcare providers across the state to complete two hours of cultural competency training.

“We're trying not to be so intrusive and add on any extra regulations but at least make it a requirement as part of their continuing education,” she said. “With this education, we feel that providers will have a better connection with those patients as they're learning about their experiences.”

It did not pass. But Shackleford said these trainings are crucial for healthcare providers to understand how Black women tend to internalize pain until they can’t anymore and self-medicate more often. Research shows maternal health and COVID-19 death rates are significantly higher for Black people; the bill would aim to reduce these disparities.

“We've been taught to be strong. We've been taught to endure,” Shackleford said. “If you don't understand that as a culture, as their background, then you may perceive that an African American woman is not in pain.”

Studies show 6 in 10 Black adults prepare for providers to insult them, and they feel they need to be careful about their appearance to be treated fairly. Sometimes healthcare providers ignore their questions and concerns, refuse to prescribe pain medication, assume something or blame the patient for a health problem.

Many Black patients report experiences similar to Dr. Moore's, including Rep. Shackleford, who is a Black woman herself. Sometimes, when meeting a new health provider to get her prescription refilled for her chronic migraines, she faces hesitation.

“There's kind of a stare or glance or some people feel that I shouldn't need that narcotic,” she said. "You already, probably get those glances when you're trying to refill or get more of a narcotic, you get kind of scared to even ask the provider once it runs out, because you don't want to feel the shame, but at the same time, also you don't want to continue to be in pain. And if you're taking a narcotic, then you're in deep pain. So there's usually, that's where the biases come from.”

When talking with constituents, Shackleford said many Black women say they feel they are not taken seriously by a doctor.

“Sometimes they feel like if they're trying to talk to their doctor, they're not going to relate to what they're saying,” she said. “So they may just not say anything, and then just talk among their girlfriends or their friends instead of talking to the provider.”

Because the majority of the Indiana General Assembly are white men, Shackleford said it’s been hard to pass this type of legislation on the state level.

“This is an issue, especially when we're talking about maternal health, we're talking about something that's affecting women, which are the minority in the General Assembly,” she said. “We're also talking about things that are affecting minorities, which is also the minority in the General Assembly. So, it's sometimes hard to get the majority to understand a minority major issue and to get it seen as a priority.”

Shackleford had some luck at the national level, but wants to see more done locally.

“We’re still struggling at the state level to get the legislation even to be heard and accepted,” she said. “But we'll continue to fight.”

•••

Henry eyes the deadlift bar. It sits on the ground, all 475 pounds.

He shakes out his arms as “Chatter” by Connor Price begins to play in his ears. He can’t hear anyone else around him; the beat drops in the song as Connor Price begins to rap.

He walks over to the bar. He adjusts his glasses. The earbuds stay in.

“Alright everyone,” Henry announces to the room.

Some of the powerlifters at the Rising Star Gymnastics’ Eclipse Gym watch as he inhales deeply and slowly pulls the bar from the ground. He braces his core as 475 pounds leave the ground.

Henry stands up straight, his body slightly shaking from the heavy weight. He holds the bar down in front of him, and then suddenly drops the bar back onto the ground. He exhales.

A personal deadlift record. All in a matter of 3.5 seconds.

He starts dancing around, flicking off the black belt he has on to support his back. Others congratulate him.

After his mom died, powerlifting was just one of the things Henry tried out at IU. He auditioned for a comedy club and a choir. He also joined Chi Alpha, a Christian group. Henry relied on his faith to piece his life back together after his mom died.

“When she passed, I was like, ‘Why? Why? Why? Why?’” Henry said.

He looked down at his lap.

“That's left us with so many questions I wanted answers to. I'm a STEM guy, I want answers to questions. You know, that's why I went into STEM,” he said. “So not having all those answers, that degree of uncertainty really kind of blocked me, ruled my life and gave me so much anxiety.”

Through Christianity, Henry found peace and was able to move on from his mom’s death. He recited his favorite proverb, Proverb 3:5-6, from memory.

“Lean not on thine own understanding and on all thy ways Acknowledge Him, for He shall straighten thy paths.”

Emma Walls | IDS

After his mom died, Henry had to get his mom cremated. Had his mom not died, they would’ve lived in a house together, along with his grandparents, while Henry took classes. 203 S. Clark St. His room would’ve been the one painted a baby blue color on the first floor.

“It’s the house!” he recalls thinking as he’d bike by on his way to the barbershop freshman year. “It’s Clark Street.”

His mom had already signed the lease a month before her passing. They’d submitted a deposit of $2,400.

“We can’t take this house now,” he said. “I can’t pay for that; I don’t have a job.”

Henry decided to live in the dorms instead. He’s studying biochemistry. His mom always got on him about studying more.

The last time Henry talked to his mom’s ashes in the summer, he asked her for advice about school. She doesn’t talk back, but he imagines what she’d say to him if she was still alive.

She’d tell him to stick with it.

•••

Henry sits in the blue car for five seconds before getting out. He closes the car door but his eyes never leave the beige-stone, ranch-style house. There are four carved pumpkins to the right of the front door and a red ‘Hoosiers’ sticker on the glass of a window.

He unlocks his phone and checks his mom’s email records to make sure he’s in the right place. Yes, it’s 203 S. Clark St.

He stands on an uneven rock in front of the house. He rocks back and forth. He thinks about how his mom would’ve grilled chicken in the backyard.

He wants to move out of the dorms and live in a house next school year. Henry still hasn’t signed a lease for next year. He wonders if he should live at 203 S. Clark St.

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