People Aren’t “Noncompliant”—They Are Struggling

The word “noncompliance” is thrown around often in healthcare. It can be used to label people with diabetes who have less than optimal blood sugar management or who don’t follow instructions exactly as their health care providers tell them. However, this term can have negative effects on patients and prevent them from receiving the care they need and deserve.

When a person with diabetes has a term such as “noncompliant” in their chart, it can lead to other providers making assumptions about their diabetes management. It can also strain the relationship a person has with their doctor.

Dr. Dean Schillinger, the director of the Center for Vulnerable Populations at San Francisco General Hospital and Trauma Center, says “‘In medicine, we tend to label people in derogatory ways when we don’t truly ‘see’ them—when we don’t know them or understand them. … The process of labeling provides a convenient shortcut that leads some physicians to blame the patient for their illnesses.’”

Who tends to be labeled in derogatory ways?

One study looked at over 40,000 health records representing 18,459 adult patients and discovered that Black patients were 2.5 times more likely than white patients to be labeled with at least one negative descriptor in their charts. The most common phrases were “refused,” “not adherent,” “not compliant” and “agitated.” However, only 29.7% of the study population was white, while 60.6% was Black, which could contribute to Black patients being more likely to have negative labels.

The authors state that future research could examine patients’ charts over a longer period of time to look for recurrent negative descriptors and how future health outcomes are affected.

Another study looked at the health records of almost 30,000 patients in order to identify “stigmatizing language.” Such language was used to describe patients from different racial and ethnic backgrounds and with one of three chronic conditions: diabetes, substance use disorders or chronic pain.

The results showed that patients with diabetes—most of whom had type 2—were the most likely to have negative descriptions in their charts. About 7% were labeled as noncompliant with a treatment plan, to have “uncontrolled” diabetes or to have “failed” in some way. In addition, 3.15% of Black patients had derogatory terms in their charts, while only 2.6% of white patients did.

What’s at the root of “noncompliance?”

Instead of automatically labeling people with diabetes as “noncompliant” or “not adherent,” it’s important to look at what the obstacles might be when following a management plan in the first place.

For example, Hispanic communities face many diabetes disparities, including language barriers, immigration status, access to affordable health insurance and food insecurity.

In regards to food insecurity in Arizona, 11% of white families are food secure. However, 25% of Latinx households face food insecurity. Additionally, 45% of undocumented immigrants in Arizona went without insurance in 2021, while less than one in ten U.S. citizens were uninsured.

Other health inequities in diabetes care include job discrimination among those that offer health benefits, lack of sidewalks and outdoor spaces, low access to affordable food and inadequate stable housing. When a provider tells a person with diabetes to just exercise and eat healthier, it is setting that person up to fail and be labeled as noncompliant when they don’t have access to food or safe spaces for daily movement.

What can be done to overcome barriers?

Unfortunately, many systemic changes need to be made in order to truly break down barriers to proper health care—including providing everyone with access to health insurance. David G. Marrero, director of the University of Arizona Center for Border Health Disparities, says that providing education which is tailored to different cultures is key. In doing so, we need to do more than just translate materials; we also need to address cultural beliefs.

Health care providers should make an effort to understand why a patient isn’t able to care for their health. For example, there might be issues with insulin access or health literacy. Providers should note such information in the chart so others are aware of what’s going on without making assumptions about their patients.

For people with diabetes, being aware of available resources for their diabetes management is crucial. Learn more about patient advocates and patient assistance programs. If you struggle to afford medications, another option is to request the generic versions. In addition, if physically getting to a health care facility is difficult, requesting telehealth visits when possible is one more measure that can make it easier to receive care.

Lean on Beyond Type 2 health insurance resources to strengthen your understanding of the health insurance marketplace, get answers to FAQs and learn more about how you can optimize your health insurance plan to thrive with diabetes.

Editor’s Note: This content was made possible with support from Lilly, an active partner of Beyond Type 2 at the time of publication.