Pediatric Bioethics: Communicating Serious News: The Added Challenge of Health Literacy Gaps in Difficult Conversations

Column Author: Stephanie K. Kukora, MD | Assistant Professor of Pediatrics, University of Missouri-Kansas City School of Medicine

Column Editor: Brian S. Carter, MD | Neonatal/Perinatal Medicine, Bioethics; Interim Director, Pediatric Bioethics, Professor of Pediatrics, University of Missouri-Kansas City School of Medicine

Sharing serious news, or information that may change a patient’s (or parent’s) perception of the future in a negative way, is among the most challenging tasks of being a clinician. Often in these conversations, physicians and parents must grapple with uncertainty and high-stakes decisions. Consequences of poor communication can decrease trust, create conflict, and even impact health outcomes. Studies have shown that physicians experience stress in these encounters,1 and fear both their patients’ and their own emotional reactions.2 Many clinicians are uncomfortable in serious news situations and feel they have not received training in how to communicate effectively in these circumstances. 

There are frameworks to guide conversations around serious news, such as the Setting, Perception/Perspective, Invitation, Knowledge, Empathy/Emotion and Summary/Strategy (SPIKES) protocol.3 But these tend to explain what should be done, not how to do it. For example, the “E” in SPIKES stands for “empathy,” and while most clinicians agree that being empathetic when a patient has just received serious news is important, what that means to them — and more importantly, to the patient — is harder to define.  

Another key component of delivering serious news endorsed by the SPIKES protocol is meeting the patient at their level of knowledge and communicating the information clearly, in a way that is easy for them to understand.3 This communication may be particularly challenging if the patients’ baseline understanding of the human body and its functions are limited. For example, in my practice, expectant patients come to the Fetal Health Center for counseling about antenatally identified diagnoses that may have severe implications for their child’s survival and quality of life. One such diagnosis is renal agenesis resulting in Potter’s sequence, in which lack of functional kidneys results in low amniotic fluid, which in turn leads to underdevelopment of the lungs. Even to other physicians, the concept of the kidneys and lungs being linked through fetal development is complex. But some expectant families struggle to grasp the basic functions of the kidneys and lungs and why these organs are vital to survival. To “meet them at their level,” explanations of typical renal and pulmonary physiology must precede discussions on fetal development, anticipated prognosis, and ultimately decision-making around what therapies, if any, seem appropriate to provide at delivery. However, these explanations drastically increase the quantity of information that often overwhelms expectant parents who struggle to make sense of what this all means for their child and their family. 

This problem is not unique to neonatology. In fact, it is estimated that nearly 9 out of 10 adult patients in the United States have a health literacy level insufficient to navigate the health care system and promote their wellbeing.4 Health literacy has been described as “the degree to which individuals have the capacity to find, understand, and use basic health information and services needed to make appropriate health decisions.” More recently, the responsibility of society and the health system in the process of facilitating patients’ understanding of health information has been increasingly underscored in its definition, noting that we should examine our practices, ensure availability of information that uses plain language, and use “teach back” and other health literacy approaches to enhance communication.5 

Poor health literacy is known to correlate with poor health outcomes and is a contributor to disparities in health outcomes between populations. Though younger patients are less likely to have below-basic health literacy than the > 65 years population, more than a quarter of patients in all age groups fall in the basic or below-basic category.6 Patients who are uninsured or have Medicaid, patients from historically minoritized backgrounds, and patients with low levels of education are also at higher risk of having lower health literacy.6 

So how can this problem be addressed? Ideally, health education should begin early, long before a conversation about serious news occurs. Pediatricians have the chance to discuss health and wellness at encounters throughout childhood. Likewise, because medical information is easily accessible online, our role is to direct patients on how to find informative resources, and to evaluate and at times interpret that information as it pertains to their child. Finally, we have a duty to advocate for better health education in schools as well as improved and more accessible public health resources. 

But how do we manage when the patient is in front of us, awaiting worrisome results from a test that they did not fully understand? The key rests in empathy. To “meet the patient [and parent] where they are,” we must first imagine what it is like to be them, in this moment. Empathic inquiry — founded on genuine humanistic and clinical curiosity — will lead the clinician to ask thoughtful open-ended questions and listen to the response. The focus at the moment may not be on jumping to fill in the gaps in their knowledge of physiology but on first listening to their understanding of their health and the current issue. What information would they find helpful? There will be more opportunities to get into the details of how the potential treatments work, even though these details might not be helpful to everyone’s decision-making. Think about it. As doctors, most of us would want to know all the medical details before deciding for ourselves, but how many of us need the equivalent level of detail when our car is at the mechanic? Using flexibility and adaptability to react to patients’ desire for information and individualizing our responses to their questions rather than automatically supplying complex explanations, we may avoid overwhelming patients and support better decision-making.  

References: 

1. Shaw JM, Brown RF, Dunn SM. A qualitative study of stress and coping responses in doctors breaking bad news. Patient Educ Couns. 2013;91:243-
2. Studer RK, Danuser B, Gomez P. Physicians’ psychophysiological stress reaction in medical communication of bad news: a critical literature review. Int J Psychophysiol. 2017;120:14-
3. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5:302-
4. Kutner M, Greenberg E, Jin Y, Paulsen The Health Literacy of America’s Adults: Results From the 2003 National Assessment of Adult Literacy (NCES 2006–483). U.S. Department of Education, National Center for Education Statistics; 2006
5. Healthy People 2030. History of health literacy definitions. S. Department of Health and Human Services. Accessed August 9, 2024. https://health.gov/healthypeople/priority-areas/health-literacy-healthy-people-2030/history-health-literacy-definitions
6. Lopez C, Kim B, Sacks K. Health literacy in the United States: enhancing assessments and reducing disparities. Milken Institute; 2022. https://milkeninstitute.org/report/health-literacy-us-assessments-disparities

At Children’s Mercy see information at: The Scope | Health Literacy Committee (cmh.edu).  

Outside Children’s Mercy use URL: 

https://www.childrensmercy.org/your-visit/before-you-arrive/participating-in-your-childs-health-care/