Why 'Engagement' Is Better Than 'Compliance'

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People who are living with mental illness or substance misuse often have difficulty following through with the recommendations suggested by their health-care professionals. A frequent example is not taking medications as prescribed, which can mean missing doses or discontinuing the medicine altogether.

Other typical scenarios include not keeping follow-up appointments, not completing homework assigned in therapy sessions, and not being mindful of self-care practices such as exercising, eating a healthy diet, or getting enough sleep or rest.

There are several negative consequences when people don’t follow through with their recommended treatment plan. They are more likely to have increased symptoms, experience more frequent relapses, need additional hospitalizations, and have an overall poorer quality of life.

When these issues arise, health care providers are sometimes quick to label the person as being “noncompliant” with their treatment plan. This can imply a lack of ability or a deliberate or willful choice on the part of the person to not follow through with the therapeutic tasks prescribed by the professional. If this pattern continues, care providers may use more pejorative terms such as “resistant,” “difficult,” or “unmotivated” to describe the person and their less-than-optimal behaviors.

The “Noncompliance Quiz”

It’s important to step back for a moment and think about how difficult it is to follow through with health care recommendations even if you’re not dealing with a mental illness.

Here’s my unofficial “Noncompliance Quiz.” All of the questions have to do with behaviors that are generally recommended to promote overall health and wellness.

1. Do you get 7 to 8 hours of sleep most nights? YES NO
2. Do you eat 5 servings of fruits or vegetables most days? YES NO
3. Do you get 30 minutes of vigorous physical activity 3-4 times per week? YES NO
4. Do you always take your full 10-day supply of antibiotic medication? YES NO
5. Do you always wear a seat belt while riding in a car? YES NO
6. Do you always wear a helmet while riding a bicycle or motorcycle? YES NO
7. Do you and your romantic partner always practice “safe sex”? YES NO
8. Do you always get an annual physical exam and flu shot? YES NO

Chances are you answered "NO" to at least a few of these questions. If so, you are being “noncompliant” with standard health care recommendations. How do you feel hearing that term? Talked down to? Less than adequate? Like a failure?

Now, imagine for a moment that you also have a mental illness or substance use disorder which brings its own unique set of challenges to your daily life. Does being labeled “noncompliant” increase or decrease your motivation? Does it make you feel empowered or disillusioned? Hopeful or hopeless?

Lack of Insight

It’s widely known that a common symptom of serious mental illness, and schizophrenia in particular, is lack of insight. This means a person may have little or no awareness of their illness, and may flatly deny they are sick when given feedback about symptoms. This can occur in at least half of people who have schizophrenia.

We now know that this symptom, also called anosognosia (uh-no-sog-NOH-zee-uh), is similar to that found in individuals with brain damage or other neurological problems. It is not denial, nor is it a voluntary or willful attempt to be difficult or challenging. Anosognosia has been cited as the most frequent predictor of treatment “noncompliance.”

This does not mean that everyone with a mental illness has this severe lack of insight. In fact, many people are fully aware of their conditions and interested in learning how to manage them more effectively to have improved health and happiness.

Yet, despite having awareness of their illness, many may still have considerable difficulty completing the treatment recommendations suggested by their doctors and therapists. This can be due to fatigue, depression, anxiety, fear, guilt, shame, avoidance, lack of social support, inadequate access to health care, financial limitations, and a host of other reasons.

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Engagement, not Compliance

This leads to the conclusion that it is indeed a very common occurrence for people with mental illness to not follow through with treatment recommendations and other healthy lifestyle choices and behaviors. As we’ve discussed, this can be due to a chronic lack of insight, which is a symptom of severe mental illness, or to many other psychological and environmental factors.

Understanding this, we have to be careful not to discourage, blame, or demean people with mental illness for not being able to accept they have an illness or for not carrying out the behaviors that would help them get better.

Just as people with mental illness are stigmatized by our misuse of diagnostic terms (“he’s a schizophrenic;” “she’s borderline”), we create additional stigma, embarrassment, and shame when we say they are “noncompliant,” “resistant” or “lacking motivation.”

So, what do we say instead? Go for the positives. Use terms like “engagement,” “participation,” or “involvement” in the form of setting positive goals for the future. For example, say, “We want to help you get more engaged/involved/empowered/active in your recovery.”

If we absolutely have to have a synonym for noncompliance in official health care records, let’s use “nonadherence.” But why not just say, “Mr. Jones hasn’t completed his homework” or “Ms. Smith hasn’t fully met her treatment goals yet” or “Tom hasn’t fully maintained his medication schedule"?

It’s time to retire the term “noncompliance." Whether you live with mental illness or want to help someone who does, we can all be more positive and encouraging in our communications and motivate people to keep moving forward toward their recovery goals.

Copyright 2023 David Susman