Without digging any deeper, the clinician would never learn that this man has worked a construction job since he was 15, and doesn’t have the option to take time off because he has to put food on the table for his family.
“These are important things to consider for marginalized populations: the day they take work off because they’re in too much pain is the day they lose their job,” says Chuck Vega, MD, a family medicine physician who sees primarily Latinx patients under the poverty line at the largest safety-net clinic in Orange County, California.
But those considerations never see the light of day when the conversation starts and stops at “How is your pain on a scale of 1 to 10?” Clinicians, pain specialists, and individuals living with pain are finding that effective pain treatment plans can’t be achieved without exploring the circumstances surrounding the individual’s pain. What valued activities can’t they do anymore that often are even more meaningful than a numeric pain level?
And for Black, Indigenous, and people of color (BIPOC); LGBTQ+ individuals, including those who are transgender or nonbinary; and people who are low-income, have low health literacy, or are elderly or very young, how does the discrimination they experience affect their pain and the treatment they get for it?
Pain as a vital sign
Paul Arnstein, PhD, RN, FAAN, is a certified family nurse practitioner, clinical nurse specialist, and pain management nurse with Massachusetts General Hospital. He works to reduce fears and mistaken beliefs about pain—and to find more nuanced ways to assess and treat it.
Arnstein reflected on a decades-old study that examined children undergoing a painful bladder surgery—they were rarely given even acetaminophen, much less stronger pain relief. “It’s been said that no child experienced pain before 1970, because there was no medical literature acknowledging that children have pain,” he says.
One issue contributing to the lack of pain treatment for children at the time was a lack of concrete measures to assess their pain, Arnstein says. A child’s fever, for instance, is easily quantifiable.
“Physicians seem to be responsive to numbers,” Arnstein says. “We know if the treatment is working or not based on how these numbers change in response to therapies. But we need to have professionals stop ignoring pain and pay attention to it as they would if Johnny’s fever was 105, his blood pressure was 200/100—something that gets our attention and says, ‘Hey, you have to treat it.’”
But pain is subjective: Not only does a 10 on the pain scale mean something different to everyone, the actual definition of what each number “means” can vary depending on which pain scale is used. What patients consider a 1 can fluctuate, too—pain scales, when they’re used correctly, should actually start at 0, Arnstein says.
Examining function as a better measure of pain
For best outcomes, clinicians need to move beyond a numeric scale or their own observations of an individual’s demeanor—which can be misleading, if patients are trying to remain positive for the doctor or are brought up by their culture or community to act a certain way toward health care providers, Arnstein says.
“To distill the whole experience of pain down to a single number and to determine who gets treated based on the number” leads to inadequate and inequitable treatment plans, Arnstein says.
A comprehensive assessment of pain should also include functional tests to see how the person is able to move, what they are able to do, and how their pain changes when they are completing certain activities. Beyond that, Arnstein says, he also asks patients how much pain interferes with their general activities, and how strongly pain prevents them from enjoying life.
Assessing function as a measure of pain is different for every individual. Some people can’t get out of bed at all. If individuals like that can turn in bed, cough, and take a deep breath, “that’s the level of functioning I want to see,” Arnstein says. On the flip side, for someone who recently was running a marathon, the inability to run or complete a workout is an indication that pain is drastically affecting function.
From the very first visit, says Vega, it is important that clinicians look at the type of chronic pain and ask how it affects one’s daily life. “How is pain holding you back? How can we get to that place to reach your goals?” Vega says. “I need patients to partner with me in that—I can’t tell them what their goals are.”
Arnstein urges patients to make lists and determine prior to a meeting what exactly they want out of it, whether that’s information, analysis, advice, understanding, or reassurance—then vocalize that.
Assessing pain when disparities exist
When looking at underserved populations, one barrier to successful pain assessment is the history of health care in America and the distrust toward medical providers it has led to among BIPOC, LGBTQ+ individuals, or people with low incomes or low health literacy. A key ingredient to successful assessment and management of pain is trusting the health care provider and not feeling judged, Arnstein says.
“There has been a lot of research regarding women, people who are very young or very old, people of diverse cultural or racial backgrounds,” Arnstein notes. “Especially when their backgrounds are different than the health care provider who is providing care, they don’t get treated as quickly or as thoroughly in terms of follow-up as their counterparts who mirror the health care provider who’s evaluating and treating the pain.”
Vega urges health care providers to keep unconscious biases in mind.
“You have to understand the patient’s symptoms and their goals of care in the context of their social life, their family life, their work life,” Vega says. “And that’s going to be different for folks from different walks of life. If they have a different cultural background than you, a different race, different experiences or goals, the key is to put your own agenda aside, listen to the patients, and try to work toward their goals. Don’t impose your will on those important objectives.”
Does the individual want to be able to play with their grandkids, go to church on a regular basis, and comfortably make the walk from the parking lot to the building? Creating a patient-centered treatment plan can help reduce preconceived notions when a patient comes from a different background than a provider, Vega says.
For providers who may recognize that there is bias in their practice, take a step back and look at the standard guidelines for treating certain conditions, Vega says. If a provider is not treating a patient living with pain based on existing treatment guidelines, they should ask themselves, “Why aren’t I offering this treatment to this patient?”
“Think about it; be honest about why—is it because you think this person of color is going to be more likely to abuse the controlled substance you give them?” Vega says.
He adds, “We’re all guilty [of making snap judgments]. Be the best provider you can, work on it, work on your practice and policies. Take a hard look at that bias, so that you can see that pattern, hopefully before it manifests.”
Whether or not a medical provider shares their patient’s background, the best way to treat chronic pain begins by understanding how that pain is affecting the day-to-day life of a patient. The only way to effectively manage pain, especially for underserved populations, is to focus on the entirety of a person’s experience, not just a number on a pain scale.