How Healthcare Illiteracy Gets Mistaken for Non-Compliance

Kathy Quan RN BSN PHN - 05/21/19

The definition of healthcare illiteracy has evolved over the past two decades. The original definition was set by the Institute of Medicine,” The degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.” Through further studying of the problems that stem from health literacy issues, it was discovered that many complex factors combine to define the problem. Included are such things as cultural influences, and skills in reading, listening, analysis and decision-making to the skill sets needed to act on the information and decisions.

Over the past two decades, there has been significant research into the complexities of how and why patients do or don’t succeed in improving their health status by preventing or managing acute and chronic diseases and injuries.  With a move toward patient-centered care, the responsibility for the health status shifted to the patient and away from the physician and health care workers. This has opened a whole new world and discussion of patient education.

What has been one of the most remarkable discoveries about health care illiteracy is the effect of the health care system on the success of improved patient status. It’s not an individual’s deficit. It’s truly a systems issue involving how the information is presented as well as how to navigate the health care system to access all of the necessary parts to achieve wellness and prevent complications.

Indeed, there will always be a segment of people who are truly non-compliant. They don’t really care, aren’t interested in following instructions of any kind and don’t see the values in changing their ways. Their conditions will continue to worsen, and they require more and more expensive levels of care until they eventually die from their condition or complications.

Patient education is a huge part of nursing care now. Nurses need to be prepared to educate patients and one of the best ways is to utilize continuing education courses for nurses to update their knowledge base. Providing that education in a way that the lay person can easily understand is essential. Not everyone learns best from reading materials. Some need hands on and others will do best having access to videos or pictures. Taking the time to explain all aspects of the care needed such as refilling perceptions, making follow-up appointments, understanding actions and side effects of medications and treatments, filing insurance claims, what symptoms to report and how to access care after hours are all foreign to most lay people.

Time is at premium and it’s frustrating when a patient doesn’t catch on quickly, or when it becomes evident in a few days that the patient didn’t pay attention and isn’t following directions. But is that the real situation? Too often patients get lumped in to a category of being non-compliant, but is that really what’s happening?

When you don’t know what you don’t know that you don’t know, it’s very difficult to ask questions or to know what to even think about questioning. As a result, patients don’t understand complex instructions, don’t make follow up appointments or renew prescriptions because they don’t know how to use the system. And if their system is complicated by prior authorizations or restricted access to pharmacies, labs and medical facilities they may become so frustrated as to give up. They lack the skills to analyze risks and benefits. They lack the skills to evaluate information they hear on TV or read online or in a magazine to determine the truth and credibility. And they may not even be able to communicate and express signs and symptoms to be able to elicit the care they need. This may appear to be an issue of non-compliance but is likely mistaken.

As a result, patients with a limited knowledge base tend to seek the most expensive care by utilizing the Emergency Room, or not seeking medical care until their cancer, for instance, is a Stage IV even though they may have recognized something wasn’t quite right long ago. This raises the cost of health care tremendously. If patients don’t know that a prescription is to be taken long term and have no idea how to refill it or where to go and when, they get labeled non-compliant and their condition worsens.

Socioeconomic factors weigh in, but not all instances of health care illiteracy stems from low economic status or poorly educated persons. The wealthy, the well-educated, the elderly, the very young, and those with hearing, speech or language deficits can be affected by health care literacy issues just the same as the very poor or poorly educated. 

Technology plays a huge growing role in healthcare and those who lack technical skills or even fear it can get lost in the system as well and become part of the so-called non-compliant. It’s essential to assess carefully and ensure patients are not being lumped into a category where they don’t belong. And ensuring they get the education and information they need.

If patients don’t understand how to make a follow-up appointment or seek the care of a specialist, again their condition will worsen and become more difficult to manage. Not understanding the role diet and exercise plays in a healthy lifestyle or management of a chronic illness such as diabetes becomes an issue of the system as well. This doesn’t mean they are non-compliant; they need a different approach.

To combat the health care illiteracy issues, patients need more education and information in plain simple language with plenty of examples. The nurse who educates the patients and then calls the patient’s phone and leaves the same instructions on his voice mail to refer back to when he inevitably forgets a step is a hero. The nurse who asks the patient to return demonstrate and also educate the nurse in how to do a procedure will reinforce his learning and build his confidence. These take a few minutes more, but in the end the efforts can save even more time, money and lives.