Health Literacy: How Good Communication May Lead to Better Health

A mother of two young children does not understand the instructions for applying for Medicaid and is subsequently denied benefits because she failed to return the requested information.

A middle-aged woman comes to an emergency room weak and tired from a Dilantin overdose because she did not understand the note her doctor gave her that said to take “100 mg 3x daily.”

A man walks around for one week without his medication because he did not realize that the “papers” he had were prescriptions.

What these three people have in common is marginal literacy skills. What is generally unrecognized is how widespread this problem is.

Marginal Health Literacy: A Hidden Epidemic

The 1992 National Adult Literacy Survey (NALS) indicated that 48 percent of U.S. adults were reading at marginal levels or below. This means that the issue of marginal literacy has affected far more people than is generally assumed and requires a response that reflects the magnitude of the problem.

 People with marginal skills do not comprise a small “special population” for whom a few specially designed materials should be kept on hand. They represent a significant segment of society and include people who head families, go to work every day, and manage a host of conditions ranging from teething to end-stage renal disease.

The Health Care System: A Potential Obstacle Course

The task of navigating one’s way through an increasingly complex and ever-changing system of health care comes with a significant literacy demand. Getting to a new location, finding an office within a large complex of buildings, going through a registration process and following treatment recommendations are all made easier if one can read. 

 Street signs and printed directions, insurance forms, medication labels, appointment slips and patient education materials can all be potential barriers along the way. Member handbooks from managed care companies and consent forms issued in hospitals often require some level of deciphering in order for them to be understood, even by stronger readers.

Suffering in Silence

When patients fail to follow through with treatment guidelines, providers often assume that this “noncompliance” is deliberate. Yet many people quietly struggle, yet fail, to understand the medical terms and concepts that others take for granted.

 People often feel a deep sense of failure and shame about their inability to understand what is being asked of them. Based on past experiences, they are afraid that someone will look down on them and maybe even blame them for their plight. This is a major concern. It keeps many people from asking questions and admitting that they do not understand.

Effect on Health

There is a growing body of evidence on the way in which inadequate literacy skills affect health outcomes. Researchers have documented a connection between marginal literacy skills of patients and an increased inability to understand things that may be vital to their care, such as:

•   Instructions for a common radiographic procedure, written at the fourth grade level;

•   Directions for taking medicine on an empty stomach;

•   An informed consent document;

•   Information about when their next appointment was scheduled;

•   Information important for managing their own hypertension, diabetes or asthma.

Risk and Cost

The implications for providers can be serious as well. Legislative, accrediting and regulatory bodies have taken steps to ensure that consumers are well informed. The Joint Commission for the Accreditation of Healthcare Organizations (JCAHO), the National Committee for Quality Assurance (NCQA), and the Food and Drug Administration (FDA) each have requirements that patients be informed in language that they understand. Providers are at risk for lawsuits as courts increasingly look for evidence of attempts to go beyond merely informing people about treatment procedures and medications, to ensuring actual understanding.

Finally, poor communication can be expensive. It is estimated that costs due to poor communication amount to $73 billion in 1998 health care dollars.