Racial differences in medical care are part of the theme experts are seeing “over and over” again.
Judith McClellan, a social worker who lives in Salisbury, N.C., 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, Ms 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, Ms McClellan said, “the protocol is we go to the nearest hospital” to receive powerful pain medications that will mitigate Kyarra’s discomfort until the crisis has passed. But because the McClellans, who are Black, live an hour and a half away from Kyarra’s primary haematologist, 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?’” Ms 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, where 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.
Last year, at a UNC hospital emergency department in Chapel Hill, N.C., a doctor reported Ms McClellan to Child Protective Services because he was concerned about the fact that Kyarra had received 30 opioid prescriptions from 9 different doctors in North Carolina in the past year. That was too many, in his opinion. Ms McClellan said that when she explained to the doctor that Kyarra’s prescriptions were necessary and in accordance with prescribing guidelines, he said, “If you’re not hiding anything, this will all work out.”
When asked about the incident, Alan Wolf, a spokesman for UNC Health, said that “hospital providers are obligated under North Carolina law to report suspected child neglect or abuse.”
In the end, the agency decided not to pursue the report, Ms McClellan said, because “it didn’t meet the qualifications for abuse and neglect.”
A theme was seen over and over again
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, for instance, Dr 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, Dr Hartford said, which has found that when children of colour 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, like opioids. Many studies have also found similar variations in pain treatment among adults of colour.
“We would like there to be no differences by ethnicity and languages,” Dr Hartford added. But “we have to uncover them as the first step to addressing them.”
Why racial differences in children’s pain care exist
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, as research has shown.
But in children of colour, treatment can be worse. Dr Ron Wyatt, a senior fellow at the Institute for Healthcare Improvement who is based in Madison, Ala., 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 colour are treated in medical settings.
As part of an often-cited study published in 2016 in the Proceedings of the National Academy of Sciences, for instance, 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 percent believed that Black people’s nerve endings were less sensitive than white people’s. The participants with such erroneous beliefs also made less accurate pain treatment recommendations, the study authors found.
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,” Dr Cooper said.
Dr Cristina Gonzalez, a professor of medicine at the Albert Einstein College of Medicine in New York City who teaches physicians how to recognize and manage their implicit biases, said she remembered one instance years ago when a young Hispanic patient came into the hospital complaining of severe pain. A staff member said, “I don’t think he is really in pain.” He was eventually diagnosed with a gallbladder infection, Dr Gonzalez said, but those doubts could have delayed his treatment and caused damage that could have been life-threatening.
“Delaying care has significant health downstream effects,” she said.
What can you do to improve your child’s pain management?
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 — which everyone has — and to change their behaviour accordingly. But “those are things that take time,” Dr Wyatt said. In the meantime, these strategies may help parents at the hospital:
- Keep records. Write down your child’s medications, symptoms and paediatrician’s contact information. Then, give the staff this information, 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 the medication regularly.
- Get to know the hospital staff. Vanessa Finch, of Fort Lauderdale, Fl., 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 intricately interwoven and some surprisingly simple tactics can help to reduce anxiety and lessen perceptions of pain. These may include having your child imagine a favourite place, listening to a guided imagery exercise or offering distractions, like music or a video. You can use these strategies while waiting for treatment.
- Take deep breaths. “We know that parents’ distress about their child’s pain in the E.D. really impacts how their child experiences pain and how they respond to treatment,” said Emily Law, an author of the 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, whether that involves taking deep breaths or stepping 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.
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