In my first bioethics class, the components of health education (HE) were just being developed, and despite the passage of time, full understanding remains elusive as HE proved far more complex than originally conceived. We learned, simplistically, by present standards, that the provider (MD, DO, PA, NP) only needed to deliver information at a patient’s level of understanding, and the patient would provide a reasoned response. The constant over the years has been that it was the provider’s responsibility, given his/her inherent power, whether HE was successful or not. The foremost factor, the patient, the true holder-of-power in the dyad, in my opinion, seemed to be ignored.
Providing information at the patient’s level of literacy remained relevant, however, as literacy, measured by reading ability, also indicates comprehension and reasoning (separate from intelligence). Despite patients’ often indicating having graduated either high school or college, on average, U.S. adult literacy is between the 8th and 10th grade, making information at the high school or college levels above their understanding.
The government recommends that HE provided at the sixth-grade level is a solution, but this does not account for those who are fully or partially illiterate. These individuals hide their disability well: They will make eye contact, nod in assent, say “yes” if you question them, deny having questions, parrot back what you say, and will studiously examine written material as if they are reading it.
These patients are surprisingly more frequent than commonly believed or identified. Years ago, for example, I was reviewing a dissertation, but by page two, I found more errors in English and reasoning than usual, and I assayed the paper’s grade equivalency and found that it was composed on a fifth-sixth grade level! Somehow, this partially illiterate individual graduated high school and college, was hired as a teacher, promoted to principal, gained a master’s degree, and was accepted into a doctoral program!
Over 35 percent of the population is either fully or partially illiterate, reading below a sixth-grade level. In the Medicaid population, illiteracy can increase to 75 percent. Illiteracy is expensive, costing the health care system over $100 billion and the general economy over $250 billion annually.
It is also important to realize that information provided to patients is cognitively filtered and interpreted through a broad range of existing data from their immediate and extended families back to their grandparents; their spouses (or partners), and their families; friends, work colleagues, more distant acquaintances; strangers; unvetted internet sites; and TV dramas.
Thusly, patients are not, and cannot be, unbiased receptacles of information who will weigh data dispassionately and respond thoughtfully and reasonably! Early HE failed to take this into account, and modern versions fall short as well.
If the government suggestion of sixth grade is applied, millions of people would still be unable to take advantage of written or spoken information. Even at the sixth-grade level, many concepts are difficult to explain, and if language is further simplified, additional information is lost until the concept becomes meaningless.
Simple illustrations are commonly used with oral and written presentations. But as too simple language can be jejune, basic drawings can also limit the information transmitted.
Yet, the principles of HE and ethics require providers to present information at a patient’s level of understanding. Does this mean that a patient must complete a literacy test prior to examination and that the provider then uses the test results to present information? Simply presenting all patients with the same information would not be satisfactory, but it would be impossible to have appropriate material for each reading level and comprehension level. However, could the presentation of information based on different literacy levels, even if they are grouped (i.e., 0-4 grade, 5-6 grade, 7-9 grade, etc.), be construed as institutional discrimination, in that the less literate would receive fewer details?
Then too, there is the question of consent. Is an adult at the government level of sixth-grade literacy (and reasoning, 10-11 years old), considered competent to sign an informed consent statement, written on average, at the 10th-grade level? A recent judicial ruling contended that they do not. Some researchers reported having written consent forms on a third-grade level, but can such forms encompass all the necessary concepts to meet legal requirements? Does an illiterate individual lack the ability to consent and thus require a guardian, and if so, who? Can we then argue for the reimposition of paternalism for at least some individuals, and might this be applied in an unbalanced manner as illiteracy tends to be greater in people of color?
I have offered an overview of some factors that affect the provision of HE. I have not talked about intelligence, interpreters, family members, or professionals, racial or gender influences, provider history or familial influences, or time spent with providers. Too, I have not explored any of the issues above in any depth, although all the named factors contribute to quality HE. I do not believe that “perfect” HE will ever occur despite the emphasis placed on it, but is perfect even necessary? “Good enough,” presently undefined, may well be an appropriate, ethical, and more achievable goal.
M. Bennet Broner is a medical ethicist.
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