As I listened intently to a resident physician presenting the case of a little girl with asthma, I could hear the young doctor’s frustration.
Her 7-year-old patient “was hospitalized once again,” she said with an audible sigh, probably because of the mother’s “noncompliance” with her daughter’s medication regimen.
“What does the word ‘comply’ mean?” I asked the resident and could see her squirm in her chair.
In December 1993, at the Nobel Prize ceremony, Toni Morrison discussed the power of language. “Words,” she said, “have the capacity to liberate, empower, imagine, and heal, but cruelly employed, they can render the suffering of millions mute.”
In our clinic, and in a majority of practices I have worked in or have been a patient in, you’ll hear about patients who are “noncompliant” or “no-shows” or are just “difficult.”
On one level, these seem like simple descriptions: Patients who don’t follow instructions, or don’t show up for appointments, or who present some other kind of problem to their care team.
But take a closer look and their potential harm becomes clear.
More examples make their way into academia and public policy. Phrases such as “at-risk” populations or “social determinants of health” or “health inequalities” can be heard in classrooms and board rooms around the country and found inscribed in top journals.
Some of these utterances are paternalistic (noncompliant) and accusatory (a no-show). Some are misunderstood (health inequalities), while others may seem foreboding (at-risk populations, social determinants of health). Most show a simplification and misunderstanding of the struggles that patients, families, and communities sustain while trying to navigate our extremely complex medical system. Access to medications and transportation, as well as broader issues such as poverty and its effects on decision making, plus health literacy are just a few examples of factors that complicate patients’ lives and care.
Studies have shown, for instance, that almost 80 million adults have low health literacy, defined as trouble obtaining, processing, and understanding basic health information and services. Another study in the journal Pediatrics revealed that 80% of parents who left a pediatricians office could not recall what their child was diagnosed with and what they were supposed to do about it.
And we call that noncompliance?
A 9-month-old had a checkup scheduled with me last month. I first met his mother at a local domestic violence shelter, where I learned of the daily physical and emotional terror she endured (and her son witnessed) from her husband. When they didn’t make it to their appointment, I was concerned and called her. She told me she had at last been approved for transitional safe housing and had to move out of the shelter the same day of her appointment and had no time to call to reschedule.
And we call her a no-show?
Many of us who have dedicated our careers to the underserved are fond of the term “at risk.” At-risk youth. At-risk school. At-risk populations. I’m sure it was coined in an effort to be kind or at least clinical. But it focuses on deficits rather than the incredible resiliency and promise inherent to each individual, school, community. What about, “at-promise youth, school, community?”
The U.S. Centers for Disease Control and Prevention, and most health-care institutions, have focused on the vital importance of social determinants of health. These are the conditions in which people live, work, play, and learn, which have a large impact on health trajectories. But these “determinants” are not destiny. What about using “social influences on health?”
Across the nation, gaps in health are large, persistent, and increasing. “Health inequalities” refers to uneven distribution of health care. That’s a serious issue, but a very different concept from “health inequities,” potentially avoidable, unfair differences resulting from disadvantages such as poverty, living in an unsafe neighborhood, or attending a low-performing school. We must first achieve equity before we can celebrate equality.
I rescheduled my 9-month-old patient for the following week, and we celebrated his mother’s new living situation and how healthy and advanced her son is. We never talked about him being “at risk” or her being “noncompliant.” They have their whole lives ahead. Let’s all support their health trajectory, as Toni Morrison said, “with words to empower and heal.”