Improving Health for Limited-­Literacy Patients

It is estimated that more than 80 million Americans will have multiple chronic diseases by 2020 while chronic illness management accounts for nearly 80 percent of total health spending.(1) Increasingly, addressing and understanding the social determinants of health — the conditions in which people are born, grow, work, live and age, and the wider set of forces and systems shaping the conditions of daily life(2) — has been recognized as a “pressing” issue for physicians and medical professionals.(3)

Understanding an individual’s social determinants might assist him or her in more-effectively managing their chronic illnesses themselves and further contribute to practicing patient-centered care. As a result, both the patient-clinician relationship and patients’ trust in their health care professional are increased, which can lead to improved health outcomes.(4,5)

One of the most challenging social determinants of health to address is limited health literacy, which is estimated to affect more than one-third of U.S. adults who receive Medicaid or Medicare.(6) Limited health literacy leads to poorer ability to take medications and poorer interpretation of prescription labels, leading to an increased risk of emergency care, hospitalization and higher all-cause mortality rates.(7)

The author of this paper became interested in limited health literacy after watching his high school-educated father age and execute medical instructions while sick.(8)

A recent systemic review of chronic management interventions in primary care examined such elements as decision support, delivery system design, clinical information systems, self-management support, health care organizations and community resources, and concluded that self-management support was the most frequently examined intervention and was associated with statistically significant improvement in health care outcomes, particularly in diabetes and hypertension.(9) Therefore, solutions that address self-management strategies in patients with complex life circumstances are needed.

This paper will examine a framework that examines how using empathy and understanding the cognitive burden patients with chronic disease and limited health literacy encounter can inform the development of self-management programs that are not just disease-specific but can be used for any chronic disease.

Review of the Literature

Physician empathy has been associated with improved clinical outcomes in patients with diabetes, such as lower metabolic complications,(10) hemoglobin A1C and low-density lipoprotein cholesterol levels.(11) Additionally, higher levels of physician empathy led to higher medication self-efficacy in HIV patients.(12) A recent study in patients with advanced prostate cancer reported that physician empathy could improve a patient’s psychology by reducing anxiety and improving self-efficacy, leading to improvements in cellular immunity.(13) A patient’s self-reported quality of the patient-physician relationship is enhanced in providers with higher levels of empathy leading to feelings of satisfaction, relief and trust.(14) In one study, patients who resided in a lower socioeconomic area reported a lower degree of physician empathy and experienced worse outcomes compared to a more affluent area in Scotland.(15) Additionally, provider empathy can help motivate patient behavior change and medication adherence.(16)

Empathy is felt to motivate prosocial behavior, which is an action that benefits another individual or improves his or her welfare, by alleviating the person’s distress. It physiologically affects multiple biological, neurological and endocrine processes.(17) Even though there is a “distance” between a health care provider and a patient, social experiments have demonstrated people are more creative when solving problems for others than they are for themselves, which is important in generating innovative approaches to solving complex social problems that patients with chronic disease must overcome to be successful.(18)

When individuals are confronted with a cognitive burden, such as needing to focus attention on a new task while currently occupied by a concurrent task, it is less likely they will make behavioral choices that require deliberative judgments and rely on more automatic processes to make decisions.(19) Economic research has highlighted how judgment and decision-making are imperiled when people with limited economic means have cognitive burdens they must simultaneously address.(20)

One of the dangers of not recognizing how challenging social determinants can cognitively overload individuals occurs when patients are not adherent to medical treatment plans and are labeled “noncompliant.” This label may irreparably rupture any opportunity toward improving adherence and health outcomes, because once this label is affixed to the patient, any creative endeavor to approach patient barriers toward adherence can be lost. After all, the thinking goes: If there is only so much one can do in educating patients, why should precious resources and time be devoted to noncompliant patients? Additionally, if we are not careful, we might assume that the reason for nonadherence to a healthy lifestyle is a lack of personal fortitude without fully understanding how the rest of an individual’s life contributes to the difficulty in executing sometimes complex medical treatment recommendations. For example, an elderly individual with diabetes, hypertension and high cholesterol may have to attend to over 3,000 behaviors in a year to be fully compliant with a provider’s recommendations.(21)

This complexity challenges individuals with limited health literacy — particularly the elderly, because cognitive skills like memory, processing speed and reasoning are important, to help facilitate medication adherence and ultimately influence health outcomes. In one study of community-dwelling seniors, those who had impaired performance on memory tests were three to five times more likely to have limited health literacy.(22) In addition to having to “remember” information and be able to successfully execute sometimes-complex multistep treatment interventions, new information might need to be periodically added to ensure optimal self-management. Both the ability to remember how to perform current tasks and subsequently learn new skills are impaired in patients with limited health literacy.(23)

A Novel Program

Daniel Kahneman, a psychologist, economist and 2002 winner of the Nobel Memorial Prize for Economics Science, and Amos Tversky, his frequent collaborator, advanced the psychology of how we make judgments and decisions, by demonstrating the decisions we make are influenced by how we frame the problem at hand and the personal characteristics of the person making the decision.(24) So what would happen if we changed the problem from one of deliberate noncompliance to one of humble inquiry about why it seems difficult for a patient to adhere to specific recommendations?

This reframing of the question opens up an understanding as to whether there are mitigating circumstances affecting adherence as well as facilitating creativity in addressing a problem that might have a practical solution. This ability to better understand a patient’s life outside the specific medical problem for which he or she seeks care allows one to use empathy in an attempt to better create a solution jointly with the patient.

At OhioHealth Doctors Hospital, we screen for limited health literacy using Newest Vital Sign,(25) a validated screening tool, in patients admitted with chronic obstructive pulmonary disease and congestive heart failure because it requires only three minutes to administer and requires numeracy skills and the ability to comprehend a nutrition label.

Figure 1 lists three of the most commonly cited health literacy tests used in clinical research and practice.(25-27) If patients meet Medicare homebound criteria and are eligible for home health services, we ask patients if they are interested in receiving four, one-hour weekly home visits to provide a customized education plan to help manage their health condition.

Figure 1. Features of commonly used tests to examine health literacy

Patients, based on assessment, are assigned to one of four levels that instructs what and how they are taught. Once they demonstrate understanding and competency, they progress to the next level. To date, we have reduced 30-day readmissions in this cohort by 40 percent. Patients have increased their level of understanding and engagement in self-managing their health condition, according to unpublished data.

As part of our program, we ask patients, “What is the one thing that your illness prevents you from doing, and how would it feel to be able to do this again?” Once people can tie together how diet, exercise, adherence and self-management skills can influence their ability to more actively participate in family life and society, they become more motivated and excited to try to achieve their goal. We also instruct them that the purpose of our treatment is for them to able to achieve their goals rather than focusing on a data point, like the need to lower a hemoglobin A1C level in a diabetic patient, that can guide the provider in making appropriate treatment-related recommendations but doesn’t resonate with the patient because there is not an obvious connection between how a lower hemoglobin A1C level will make them feel better and potentially enable them to do things they once could do.

Applicability of the Approach

What can you do? These six steps (here and in Figure 2) can help health care professionals understand the problem to be solved in a collaborative, less-frustrating manner that helps patients achieve better outcomes and allows one to share a positive story with others to help spark his or her own creativity in solving challenging problems.

Figure 2. Managing patients with limited health literacy and chronic disease

1. Reframe the story you are telling. Are you describing facts, or telling a story? A fact would be, “The patient was not able to take his medications.” A story would be, “The patient doesn’t take his medications because he is noncompliant.” An individual telling a noncompliance story might not have all the facts before making his or her judgment. The question to ask instead is whether there might be more to the story that led to the patient’s nonadherence. Another question to ask is whether the individual telling the story would stick to it if he or she found out the reason why the patient did not fill a prescription was because she was helping her daughter pay for her own breast cancer treatment needs. Such a story turns the protagonist into a hero rather than a villain.

2. How certain are you the listener really understands? A thought experiment: How many providers have had the experience of a patient answering in the affirmative about whether he or she had any questions about the discharge instructions he or she got while getting ready to leave the hospital or the paperwork following an office visit? Practicing physicians rarely experience patients asking questions. Most patients want to get home and not spend another minute in the hospital or office, no matter how good the patient experience was. The author’s father, for example, received discharge instructions with errors that could have caused morbidity. The biology of aging, the degree of illness and an individual’s level of formal education all have an impact on the ability to understand and execute medically related plans.
   Effective transition of care has been recognized as a key aspect of ensuring a safe and high-quality experience so potentially adverse events are minimized. Therefore, an effective strategy would ask patients to “teach back” what was just told to them so both parties can be sure the information was heard correctly. A corollary to this would be to have a patient demonstrate a new skill they are expected to learn, like drawing up insulin in a syringe and self-administering it, or properly using an inhaler.

3. What is the patient’s goal? Both providers and individual patients can recall a time when they weren’t included in something that was meaningful to them, whether it was intentional or not. Patients struggling with chronic disease and limited health literacy also might be struggling to pay their bills or procure reliable transportation, and have food insecurity. Ask them, “What has your illness prevented you from doing? How can we create a goal together so that we can see how to make sure your illness doesn’t prevent you from [say, missing your grandchild’s athletic events]?” This personalizes each individual’s struggle with their illness and opens a discussion toward building an optimistic future rather than a lamentation on what they are missing, or wondering if they are helpless to stop this slow decline.

4. Break down barriers. Ask what is preventing them from reaching their goals. In its program, OhioHealth has found almost every immediate patient goal was attainable. If a patient states an unrealistic goal, perhaps agreeing on an intermediate or a preliminary goal can assist in facilitating a positive patient change. By helping to break down a goal into its component tasks, it helps the provider and patient manage discreet chunks and not make it so daunting. For example, for a COPD patient who wants to attend his/her grandchild’s sporting event, the patient would have to be able to feel well enough to attend. This is accomplished by demonstrating how to use his/her inhaler appropriately, understanding what their rescuer inhaler does so that if he gets short of breath, he can self-manage his condition and can get to and from the event safely. If he can’t get a ride from his family, discussing what potential transportation options exist. By sequentially mapping out these tasks and having a plan to address any barriers, it makes it more likely the patient will be successful in reaching his/her goal.

5. You can’t do it alone. How you design and employ your team is critical for success. A physician leader understands the strength and opportunities for improvement within his or her team. By providing leadership, and empowering individuals to use their creativity and skills in helping patients achieve success in practicing at the limits of their ability, the leader allows a team to practice at the top of its abilities. This creates a powerful environment where people are entrusted to do their jobs, are constantly looking at innovative ways to succeed and might provide a working environment that builds hope and resilience, reducing frustration, burnout and turnover. Physicians shouldn’t be expected to be experts in financial assistance, transportation and community resources that are available to patients, but setting expectations, empowering staff to be problem-solvers, celebrating successes and advocating for help in an organization to be able to holistically address patient health and wellness would set a powerful agenda.

6. Reassess progress. This is much like the Plan-Do-Study-Act cycle, where you reassess your intervention and make iterative changes to the intervention. As you gain confidence in this approach, you will build a culture that looks at chronic disease management and patient adherence not as a deliberate patient choice and an intractable problem, but one that responds to empathy and the resultant creative mindset that develops. After all, if a patient doesn’t respond to one class of drugs for a particular condition, there’s often another class to choose from. Similarly, if nonadherence occurs for a particular class of patients, perhaps the above strategy can be thought of as another therapeutic class to employ so that patients with challenging social determinants and chronic health conditions can achieve more equitable outcomes compared to those who have more social and economic resources to draw from.

Conclusion and Future Research

Knowledge-intensive professions such as medicine not only require advanced knowledge and technical skills to diagnose and treat patients, but also must find a way to build effective relationships while understanding the broader social determinants of health that influence patients’ ability to manage their own chronic conditions. In particular, the ability to empathize with limited-health-literacy patients and the cognitive burden they face on a daily basis can lead to creative solutions that improves health outcomes.

The approach described above not only involves giving easier-to-understand information, but takes the time to ensure that patients can teach back what they have been taught to demonstrate understanding, builds a strong provider-patient partnership through the development of meaningful patient-derived goals, helps them break down system-related barriers that prevent them from being successful, builds team-based skills and competencies, and uses the PDSA cycle to improve the quality of the service offering.

Perhaps such an approach can lead to disruptive innovation in the delivery of high-value health care to patients with chronic diseases and challenging social determinants of health like limited health literacy.(28)

Future research should study whether disease-specific interventions, or a bigger approach like that described here, can improve both qualitative outcomes like measures of empathy, medical adherence and patient experience along with quantitative outcomes such as unscheduled emergency department visits, hospitalization rates and total cost of care.

Although most of the interventions in chronic disease management have centered on improving self-management skills, the opportunity exists to examine how clinical informatics and decision support tools can be leveraged to scale these types of interventions more broadly. Additionally, innovations in care delivery design, as well as using community resources, can leverage outside resources that can spread the cost associated with developing these type of interventions, particularly where hospitals with low operating margins are serving a heterogeneous patient population.

In conclusion, the challenge of managing chronic disease within a population health framework under a changing reimbursement environment calls for creative solutions. Although the office might become more crowded if more people are invited to listen to the doctor-patient conversation, an empathetic, creative health care provider still will be needed to ensure the promise of better health for all will become a reality.

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