A case study on language barriers, health literacy, and family interpretation: What is ethical communication?

Mr. Heng, a 55-year-old Cambodian man, was admitted through the emergency department (ED) with weight loss, jaundice, severe abdominal pain, and concern for pancreatic cancer. In the ED, Mr. Heng and his wife, Mrs. Heng, who spoke Khmer and some conversational English, relied on their two adult children to relay the medical history. However, neither child had fluency in Khmer. Clinicians suspected that all members of the family may have low health literacy due to difficulties with information gathering during the admission. Although the care team offered to use a professional interpreter, the family stated that they did not need one and family members served as interpreters during the admission process. While reviewing the electronic medical record (EMR), the admitting clinician noted that Mr. Heng had attended primary care with general malaise several times in the last few months and no documentation of professional interpreter utilization was noted. Several appointments for labs and imaging had been requested but never completed. Based on labs and ultrasound findings from the ED supporting a working diagnosis of pancreatic cancer, a computerized tomography (CT) scan was ordered. This confirmed pancreatic cancer with multiple metastases. After consulting with colleagues about the imaging, the clinician remained concerned that given the metastatic spread, treatment options would likely be limited. The clinician placed an order for an oncology consult for the next day and made plans to control the patient's pain and initiate fluids. The results of the CT were communicated to the patient's family who continued to serve as interpreters. They asked questions about when he could be discharged but did not appear to communicate the working diagnosis to Mr. Heng. The patient's pain symptoms were effectively controlled and the family continued to remain at the bedside and serve as interpreters but did not seem to understand the gravity of the situation. The clinician had difficulty evaluating their understanding of the likely diagnosis and what information had been relayed to Mr. Heng. The clinician felt uncomfortable with the situation and when she asked the family what had been shared with Mr. Heng, they were vague in their responses. As of 2022, there are over 25 million people over the age of 5 years, who have a non-English language preference (NELP) in the United States.1 Ortega recently suggested using the term NELP to replace the deficit-centering and ethnocentric label “limited English proficiency” to describe an individual who prefers a language other than English in daily life.2 As the population with NELP continues to grow, so does the likelihood that clinicians will encounter patients with language barriers and diverse cultural needs. In Mr. Heng's case, several factors magnified a situation in which key information failed to be communicated between the medical care team and patient. In addition to the language barrier, Mr. Heng and his family had low health literacy, posing additional barriers for understanding his diagnosis, prognosis, as well as the efficacy and impact of care options available. Professional interpreters can address language, health literacy, and cultural barriers, helping navigate misunderstandings that may arise, as well as supporting decision-making.3-5 Patients that use professional interpreters generally demonstrate a greater satisfaction with their clinical care, better clinical outcomes, and more effective communication.6 Professional interpreters can be certified or uncertified depending on the state and/or an institution's policies. Institutions that receive federal funding are required by law to provide language services.7 In 2000, Executive Order 13166 established guidelines for delivering effective language services to patients with NELP. In 2016, the Affordable Care Act clarified aspects of language service provision, including that language services must be free, provided by qualified interpreters, the availability of language services in diverse languages highlighted, and that neither minors nor family members should be used except during emergencies.7 However, it is acknowledged that there is a shortage of professional interpreters nationwide.8 Moreover, institutions must bear the cost of interpretation services. Although language services may be a cost effective way for institutions to enhance care for patients with NELP and can save money, there has been a call for insurance providers to cover the costs of professional interpretation.9 Unfortunately, ad hoc family interpretation is often used due to barriers at the individual, institutional, and policy levels, including overestimated English proficiency, patient preference, convenience, lack of professional interpreter availability, and time constraints, among other things.3, 10 In the case of Mr. Heng and the use of family interpretation, there are numerous ethical concerns.10 The use of family interpretation has been associated with increased medical errors and worse health outcomes for patients with NELP.11, 12 Family members, both intentionally and unintentionally, may omit crucial information, inaccurately relay pertinent medical details from both patient and clinician, and not understand the medical information from the healthcare team.12 Family members have also been found to act as a third-party in the conversations, communicating their own concerns and priorities as opposed to the patient's.13 Although entirely separate, low health literacy is more prevalent among patients with NELP.14 Consequently, low health literacy can compound issues with understanding health-related information due to language barriers.15 Using family interpreters introduces an additional intersection: the health literacy needs of the ad hoc interpreter, as well as the patient must be considered. Appropriately assessing the patient and/or family interpreter's health literacy level and understanding may be very challenging for clinicians. Furthermore, the health literacy of the family interpreter may influence what information is relayed to the patient or clinician. For example, individuals with low health literacy levels may underestimate the importance of certain symptoms and signs, and not articulate them. Additionally, miscommunication may occur through difficulties with understanding medical terminology.16 As communication issues may arise between the family interpreter, patient, and clinician, so does ambiguity in decision-making. In some cultural contexts, patients may choose to defer decision-making to family members.17 Within limited contexts, it may be culturally appropriate to withhold information if the patient has specified a desire for deferred autonomy and if the family interpreter has proficient English, sufficient health literacy, as well as a good understanding of the patient's preferences. These situations may warrant decision-making to occur between the clinician and family member, if the family member can make informed decisions in the best interest of the patient. Conversely, if the family interpreter's language proficiency and health literacy are low, and patient preferences are not understood, then this raises concerns during decision-making. Should the patient prefer to play a more active role in decision-making, family interpretation may still be a barrier, as the patient may feel hesitant to ask clarifying questions, potentially impacting decision making and family interpretation may alter the communication dynamics.13 This case highlights several issues within the fundamental principles of bioethics. If the person acting as interpreter and decision-maker does not fully understand the clinical situation or treatments, their ability to act within the best interest of their loved one is jeopardized. Furthermore, the inherent bidirectional gatekeeping of information with use of family interpreters with potential intersecting health literacy and language proficiency barriers, raises several challenges when considering decision-making. Without complete understanding of the medical situation, the family interpreter will not be able to effectively communicate the prognosis and treatment options to the patient potentially infringing on patient autonomy, even in the case that autonomy is deferred to the family. This raises implications for beneficence, as the physician may be unable to act in the best interest of the patient if information is not being communicated bidirectionally. If misunderstandings occur, this can potentially lead to increased risk of harm, including misdiagnosis or inadequate treatment, eroded informed consent, a delay in care, and/or a negative emotional/psychological impact. The principle of justice underscores the need for an equitable distribution of healthcare resources and benefits, thus a lack of access to interpreters contributes to health inequities. As these intersecting language and health literacy needs are unmet, patients with NELP may be at a higher risk for receiving suboptimal care and experiencing adverse health outcomes. The team ultimately expressed their concerns about patient and family understanding of the situation, including their own discomfort with the use of family interpretation. Following a strong recommendation and a conversation where the family acknowledged challenges with understanding the care team, the family agreed to use a professional interpreter. Before meeting with the Heng family, the professional interpreter met with the team to share background information about decision-making approaches in the community and clarify the medical background and purpose of the discussion. Pre-encounter huddles like this are recommended to enhance complex discussions with patients and families.18 During the patient/family encounter the family asked several clarifying questions. Mr. Heng articulated through the interpreter that he deferred decision-making to his family. The team was satisfied that the language and health literacy requirements for understanding the medical situation had been met. There was consensus that decision-making based on the patient's cultural norms was informed and would be goal concordant. The use of professional interpreters can help address language, health literacy, and cultural barriers which is crucial in cases like Mr. Heng's that involve preference-sensitive decision-making.5, 18 To increase the use of professional interpreters, multilevel solutions must be leveraged. An individual level solution could be having clinicians introduce professional interpreters as a part of the care team, and interpreters emphasizing that confidentiality is a core component of their role. This may be particularly impactful for patients who are members of small communities that speak languages of lesser diffusion. Institutionally, hospitals can implement reminders to clinicians to use an interpreter for specific patients similar to decision support in the EMR.19 Hospitals with limited resources may need to seek more creative solutions to expand access. One such way could be establishing a shared network of remote interpreter services between different institutions to lessen the financial strain of providing these services.20 Even with these strategies, challenges remain for patients with NELP that speak languages of lesser diffusion. Resolving these issues will necessitate continued efforts, including legislative action and significant investment in expanding the interpreter workforce. We would like to thank Nicholas Nguyen, B.A., for his work on the preliminary literature review and case outline. Amelia Barwise's work is supported by the Agency for Healthcare Research and Quality Grant R21 HS028475. The authors declare no conflict of interest.