Judith McClellan, a social worker who
lives in
Salisbury,
North Carolina, knows what it is 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”.
اضافة اعلان
During times of distress, 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 90 minutes away from Kyarra’s primary
hematologist, they often find themselves at emergency departments with medical
staff who do not know them and who often doubt Kyarra’s pain.
“If she says she has a pain level of eight — because
she is not screaming and hollering — they question, ‘Are you sure it is an
eight? Or are you making it an eight to get more pain medication?’” McClellan
said. “Sometimes I think they think she is seeking drugs.”
Dr Andrew Campbell, director of the Comprehensive
Sickle Cell Disease Program at
Children’s National Hospital in Washington, DC,
said that health care providers who do not 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.
like a butcher’s knife stabbing me 1,000 times in the same spot
Last year, at a University of North Carolina
hospital emergency department in Chapel Hill, a doctor reported McClellan to
Child Protective Services because he was concerned about the fact that Kyarra
had received 30 opioid prescriptions from nine different doctors in North
Carolina in the past year. That was too many, in his opinion. 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, McClellan said, because “it did not meet the qualifications for abuse
and neglect”.
A theme 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, 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 jives 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, like opioids. 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.”
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 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.
If you’re not hiding anything, this will all work out
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,” Cooper 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 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. 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 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.
We know that parents’ distress about their child’s pain in the ED (emergency department) really impacts how their child experiences pain and how they respond to treatment
— 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 favorite 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 ED
(emergency department) 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 has not 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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