Improving health literacy: Lessons from clinical ethics

“If you were in my position, what would you do?”

I still remember the first time I witnessed a patient ask this question. I was working with a physician at a local primary care clinic. We had given the patient a new diagnosis of a heart condition, and followed the diagnosis with a series of options for medications, referrals, imaging, and further diagnostics.

A silence filled the clinic room as we waited for the patient to voice his decisions, the physician’s fingers poised on his keyboard ready to document what was chosen. Eventually, medications were ordered, follow-up was arranged, and within minutes we were directing the patient out of the room and towards the clinic exit.

As we moved on to the next individual waiting to be seen at the clinic, my mind still lingered in the previous patient’s room. Had we performed our duty in explaining the diagnosis and giving the patient the tools he needed to make the best health decisions for himself? With only 20-minute appointment slots per patient and already keeping the next patient waiting for nearly 45 minutes, could we have done more even if we wanted?

For me, this experience was only the first of many to follow that highlighted the importance of promoting health literacy, the degree to which a patient can obtain, communicate, and understand health information to make decisions. More than 80 million people in the U.S. general population demonstrate low health literacy. To these individuals, new medical diagnoses and treatments represent new languages that must be learned – terminology, regimens, statistics, and specialists.

Understandably, with such an intensely complex medical world, limited health literacy skills are strongly correlated with higher medical costs and poorer health outcomes. As such, improving health literacy among patients needs to be at the forefront of clinician’s minds.

But it often isn’t. With packed clinic schedules, most primary care physicians are not able to spend more than 16 minutes per patient. When patients have multiple concerns that must be addressed, discussing topics in depth to develop health literacy can easily be swept aside. To further complicate matters, training in health literacy among healthcare professionals is largely lacking.

I recently attended the American Society for Bioethics and Humanities (ASBH) virtual conference and listened to a workshop where clinical ethicists described how to augment health literacy among their patients. Strategies included speaking to patients in simple and short sentences, eliciting questions through a “patient-centered” approach, employing a “universal precautions” style to communicating with patients, and practicing teach-back to assess understanding and correct misconceptions from patients.

While some of these were self-evident, examining these strategies from the lens of clinical ethics revealed nuances. For example, what information can clinicians justify leaving out in order to shorten and simplify communication with patients? Does this influence the framing of how decisions are presented to patients, even subconsciously? Are we ever doing our patients a disservice by discussing all treatment options when the clinician knows of an “ideal” choice for the patient, based on his or her knowledge and experience? After all, our first obligation as clinicians is to “Do no harm.”

As I expected, the solution to these dilemmas is frequently physician, patient, and situation-dependent. Nonetheless, the discussion highlighted the importance of keeping ethical considerations in mind when trying to promote health literacy.

Working towards this goal may look different for each clinician and patient. However, we can take steps towards empowering patients ethically, including being deliberate about accuracy in bioethical language, improving clinician knowledge, and thinking about health literacy with each patient.

In this sense, a conscious effort must be made in order to empower patients to make autonomous decisions. I know there is much work to be done, but I embrace that the change will happen one patient at a time.

–By Rohit Gupta, an M.D. candidate enrolled in the Medical Ethics Pathway and Health Policy Pathway at Baylor College of Medicine and recipient of the Laurence McCullough Travel Award