Older patients, caregivers, and family members face growing challenges in understanding and navigating the nation's increasingly complex healthcare system. Consumer illiteracy, long applied to financial matters, also has become an enormous issue in healthcare.
Sophisticated drugs and dosages are more complicated. With many seniors being treated for multiple chronic diseases, there can be dangerous interactive effects of taking medications for these differing problems. Dealing with medical professionals is also often challenging. Consumers don't understand medical language and many healthcare professionals seem incapable of speaking in any other tongue.
"Tens of millions of Americans have limited health literacy," according to a recent article in the journal Health Affairs that was authored by half a dozen government health officials, including Donald Berwick, the former head of the Centers for Medicare and Medicaid Services. "Despite its importance," the experts said, "health literacy has until recently been relegated to the sidelines of healthcare improvement efforts."
Consumer difficulties in understanding healthcare communications can lead to a worsening cycle of health problems, including:
• The reduced ability to interpret medication labels and health messages
• Failure to select and enroll in the most appropriate health insurance plans
• Failure to understand and use the services provided by their health plans
• Problems taking medicines correctly
• Reduced use of a growing array of free preventive medical services
• More hospitalizations and readmissions
• Greater use of costly emergency room care
• Worse health outcomes and earlier deaths
The lack of knowledge is described as illiteracy, but that's an unfair knock on consumers. Healthcare is a complex and quickly changing field, and many experts and healthcare professionals are not very good communicators.
"Patients are regularly confronted with complicated, confusing forms and instructions," the article said. "As a result, too many people are hospitalized after being given ambiguous instructions about medications or failing to recognize the symptoms of a worsening condition. Effective practices have yet to be developed to assess whether patients properly use medications, complete tests, or receive referrals."
Recent laws, including provisions of the Affordable Care Act, have in the past two years spawned new government efforts and rules to make healthcare information clearer and easier to understand. There is even a "National Action Plan to Improve Health Literacy."
Some early test efforts show promise. For example, the article said, a pilot program to improve the clarity and amount of information to hospitalized patients reduced expensive and potentially unhealthy hospital readmissions by 30 percent.
Despite the added attention, most of the enhanced communications being provided by government agencies are on websites. Large percentages of older consumer do not use the Internet or use it sparingly, particularly lower-income seniors who are often the sickest group of healthcare users. Doctors and hospitals are still in the early stages of patient-centric treatment and communication programs.
The only general population survey of consumer healthcare literacy, the article said, was conducted in 2003. At that time, the experts said, more than a third of adults were in the "basic" or "below basic" health literacy groups, "which means they may fail to understand critically important warnings on the label of an over-the-counter medicine."
Another 53 percent of adults had "intermediate" literacy skills, but this still meant they faced problems in defining medical terms used in complicated healthcare documents that are unfamiliar to them.
Only 12 percent of adults surveyed in 2003 had "proficient" health literacy. "Adding to these challenges, twenty-four million Americans (8.7 percent) are not proficient in English," the article noted.