This article is a review of Health Literacy, Communication, and Treatment Decision-Making in Older Cancer Patients
The review of health literacy and its impact on older adults by Amalraj and colleagues in this issue of ONCOLOGY brings much-needed attention to this very critical issue. The impact of limited health literacy is made even more critical given the increasing number of older adults in the United States, estimated to be 20% of the US population by the year 2030, and the fact that limited health literacy disproportionately affects them.[1,2] The authors nicely summarize research that clearly demonstrates the deleterious effect limited health literacy has on patients and health outcomes. This applies to both cancer and chronic diseases such as diabetes.[3,4]
Clear Communication Crucial
Amalraj and coauthors correctly point out the challenges older adults face in making decisions regarding treatment for cancer, which is becoming increasingly complex. These are some of the most challenging decisions that patients face, whether they are older or not. Previous research in breast cancer care has demonstrated that older women are at risk for undertreatment of their cancer, and death as a result.[5,6] Research has also demonstrated that women undergoing treatment for breast cancer rely heavily on their cancer care physicians for information about their cancer and treatment options.
Given the risks, it is crucial for information to be communicated clearly and in easily understood language, empowering patients to participate in their care and to make well informed decisions. Older patients are already at high risk for inadequate care and worse outcomes, and may be even more so if they have limited health literacy. Nevertheless, research has shown that improved physician-patient communication in breast cancer care is associated with a sense of choice, improved actual treatment, and patient satisfaction with care. Central to this improved communication is the primary care physician, who can play an important role in patient communication and support.
The concept of risk/benefit and survival differences based on varying cancer therapies is particularly important. Thus, numeracy is a critical corollary to and important component of health literacy in the context of cancer care. As the authors note, patients with advanced cancer in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) tended to overestimate their survival rates, compared with physician estimates. Might this lead to patients pursuing overly aggressive therapies at the end of life, when a palliative approach may be more appropriate? This is a much needed area of investigation.
The authors also highlight the fact that caregivers and companions may influence patients’ understanding and decisions. They provide a conceptual framework in Figure 1, which demonstrates how challenging this interaction can be, given the number of people involved and the complexity of the medical information discussed. In these situations, it is important to ensure that communication is focused on the patient, with attention to their health literacy skills using the communication techniques discussed below. This should be followed by ensuring that comprehension has been achieved, for both the patient and companion.
Tools and Measures
The authors discuss tools for assessing a patient’s health literacy level. While the Rapid Estimate for Adult Literacy in Medicine (REALM) and Test of Functional Health Literacy in Adults (TOFHLA) are well validated research tools, they generally have not been applied in routine clinical settings. Experts in the field of health literacy argue against “screening” for limited health literacy, as all patients benefit from improved communication techniques and increased clarity. Routinely screening for limited literacy may contribute to shame and embarrassment, causing more harm than help.
However, health-care providers can implement measures to address limited health literacy and improve patient comprehension and outcomes. Through low-cost, high-impact behavioral changes, they can help overcome the communication barriers in the medical encounter.[10,11] These universal strategies—which include using simple lay language, eliminating the use of medical jargon during the encounter, limiting the amount of information conveyed at any one encounter to no more than three key concepts, and conducting a “teach back” to assess for patient comprehension—are important techniques that can improve patient comprehension.
The “teach back” is a key step in improving comprehension, as it confirms for the provider whether or not the patient has grasped the information presented during the encounter. In completing this step it is important to frame the question in terms such as “Tell me what we have talked about today, as you understand it?” or “What are you going to tell your family about what we spoke about today?”—this gives patients the opportunity to verbalize what they understand from the encounter. One should not ask, “So, do you understand what we talked about?”, as this question is framed to get “yes” as the answer, whether the patient truly understands or not.
If comprehension is not achieved, providers must then consider different methods for patient education, rather than repeating what did not work well the first time. It is challenging to change long practiced and ingrained behaviors, and it requires practice and feedback from patients to achieve success. We must begin to incorporate health literacy training into all levels of medical education, including fellowship training.
It is encouraging to see health literacy highlighted in such a prominent manner. Excellent research has focused on the detrimental impact that limited health literacy and numeracy have on patient outcomes, as nicely summarized by Amalraj and colleagues. As practitioners, educators, and researchers, we must now focus on developing communication techniques to help patients overcome these barriers and demonstrate that these techniques do indeed improve patient outcomes.