Doctors often ignore kids’ pain
Research shows children of color are at a higher risk of being dismissed
Judith McClellan, a social worker who lives in Salisbury, North Carolina, knows what it’s like to see her child in pain. Her daughter Kyarra, 15, has sickle cell disease, an inherited red blood cell disorder that most commonly affects Black people and frequently causes pain so excruciating that emergency opioids are necessary. When she was younger, McClellan said, Kyarra would describe the pain — caused by blockages in blood vessels — as feeling “like a butcher’s knife stabbing me 1,000 times in the same spot.”
During times of distress, McClellan said, “the protocol is we go to the nearest hospital” to receive pain medications that will mitigate Kyarra’s discomfort until the crisis has passed. But because the McClellans, who are Black, live 90 minutes away from Kyarra’s primary hematologist, they often find themselves at emergency departments with medical staff who don’t know them and who often doubt Kyarra’s pain.
“If she says she has a pain level of eight — because she’s not screaming and hollering — they question, ‘Are you sure it’s an eight? Or are you making it an eight to get more pain medication?’ ” McClellan said. “Sometimes I think they think she’s seeking drugs.”
Dr. Andrew Campbell, director of the Comprehensive Sickle
Cell Disease Program at Children’s National Hospital in Washington,
D.C., said that health care providers who don’t understand a condition like sickle cell disease, in which pain is the hallmark feature, often mislabel Black children, particularly teenagers, as “drug seekers” or “opioid abusers.” There is also a “potential layer of racism” that can lead to that characterization, he added.
Dr. Emily Hartford, an assistant professor in pediatric emergency medicine at the University of Washington who studies how differences in care can affect children, said that Kyarra’s experience is part of “a theme we’re starting to see over and over in the literature.”
In June,Hartford and her colleagues published a study in the journal Academic Emergency Medicine that analyzed the medical records of 833
12- to 16-year-olds who visited the Seattle Children’s hospital emergency department for migraine treatment between 2016 and 2020. They found that the children who were Black, Asian, Hispanic or who preferred to speak in a language other than English were less likely than white children to receive strong intravenous pain-relieving medications, despite reporting similar pain levels.
This jibes with past research, Hartford said, which has found that when children of color visit emergency departments for issues like bone fractures or appendicitis, for example, they are less likely than white children to be given appropriate pain medications. Many studies have also found similar variations in pain treatment among adults of color.
“We would like there to be no differences by ethnicity and languages,” Hartford added. But “we have to uncover them as the first step to addressing them.”
Pain is subjective, hard to measure and often invisible. And in children — even more so than in adults — it is frequently misunderstood, undertreated and dismissed, research shows.
But in children of color, treatment can be worse. Dr. Ron Wyatt, a senior fellow at the Institute for Healthcare Improvement who is based in Madison, Alabama, noted that false beliefs about biological differences between Black people and white people — dating back to slavery — have had lasting effects on how people of color are treated in medical settings.
As part of an often-cited study published in 2016 in the Proceedings of the National Academy of Sciences, researchers from the University of Virginia surveyed 222 white medical residents and students and found that more than a third of them believed that Black people had physically thicker skin than white people did. And about 7% believed that Black people’s nerve endings were less sensitive than white people’s. The participants with such beliefs also made less accurate pain treatment recommendations.
Dr. Lisa Cooper, a professor of medicine at Johns Hopkins University and director of its Center for Health Equity, has found in her own research that the more implicit (or unconscious) bias white physicians have, the more poorly they communicate with Black patients.
One of her studies found that white doctors dominated conversations more with Black patients than they did with white patients, making it far more likely that Black patients’ concerns would go unheard and their conditions and pain would go undertreated. “It’s definitely a safety issue,” Cooper said.
Experts emphasized that the onus should not be on patients to improve their own care. In recent years, there has been a push by researchers, hospitals and lawmakers to help health care providers become more aware of their biases and to change their behavior accordingly. But “those are things that take time,” Wyatt said.
In the meantime, these strategies may help parents at the hospital:
Keep records. Write down your child’s medications, symptoms and pediatrician’s contact information. Give the staff this info, which will help them assess what type of care your child needs faster. This is particularly helpful if your child has a chronic condition and is taking medication regularly.
Get to know the hospital staff. Vanessa Finch, of Fort Lauderdale, Florida, whose son Kahleeb Beckett died at age 24 during a sickle cell crisis at the hospital, said that when Kahleeb was young, she found ways to connect with the hospital workers. “I volunteered. I kicked it with the social workers. I stayed in those doctors’ faces,” she said. “That makes a difference.” She discovered that when the medical staff felt a more personal connection to her son, who was Black, they were more empathetic to his pain.
Try to alleviate your child’s anxiety.
Studies show that anxiety and pain are interwoven, and some surprisingly simple tactics can help to reduce anxiety and lessen perceptions of pain. These may include having your child imagine a favorite place, listening to a guided imagery exercise or offering distractions, like music or a video.
Take deep breaths. “We know that parents’ distress about their child’s pain in the ED really impacts how their child experiences pain and how they respond to treatment,” said Emily Law, an author of a recent study on migraine treatment in adolescents and an associate professor of anesthesiology and pain medicine at the University of Washington. So do what you can to stay calm; take deep breaths or step out of the exam room to call a friend for support.
If necessary, file a complaint. If you feel that your child hasn’t been treated appropriately, ask to speak with a hospital social worker or write a complaint to the hospital to hold them accountable.