It’s More Complicated Than Interpreter Use: Improving Care for Non–English-Speaking Families

Mateo^* is a 2-week-old male whose parents speak Spanish and who presented to the pediatric emergency department (ED) for evaluation of 1 day of fever and fussiness. He was born term with uncomplicated prenatal and birth history and had no known medical history, allergies, surgeries, or pertinent family history. He lived with his parents and 7 siblings, 90 minutes from the nearest children’s hospital. On initial presentation, physical examination was remarkable for a fussy but consolable, uncircumcised male neonate. A neonatal sepsis evaluation including blood, urine, and cerebrospinal fluid cultures revealed elevated inflammatory markers, leukocytosis, and urinalysis consistent with urinary tract infection. Mateo was admitted to the hospital on empirical antimicrobial agents. A renal ultrasound showed echogenic debris consistent with pyelonephritis, with a questionable left duplex collecting system. Urology recommended prophylactic amoxicillin until a voiding cystourethrogram (VCUG) was obtained. The primary team obtained the VCUG on the day of discharge to reduce the burden of additional return trips to the children’s hospital. Urine culture grew Enterococcus spp. sensitive to amoxicillin. Mateo was discharged from the hospital on a treatment course of amoxicillin, and the team planned to call the family once the VCUG results were available and continue prophylactic antibiotics if indicated. The VCUG was read the following day, revealing bilateral grade IV vesicoureteral reflux (VUR). A telephone encounter documented by a urology nurse states the family was notified of results by phone with a Spanish interpreter. Mateo’s mother was instructed to start prophylactic antibiotics after the completion of treatment dosing. A prescription for prophylactic amoxicillin was called into the family’s preferred pharmacy by the primary urologist and subsequently confirmed to be received.

Two months later, Mateo presented to a local ED with a fever, and his urinalysis was consistent with a urinary tract infection. He was discharged with oral cephalexin but returned to our children’s hospital the following day for evaluation of sepsis secondary to Escherichia coli pyelonephritis complicated by bacteremia. On further history, Mateo’s mom reported she did not know to pick up or administer additional antibiotics after the treatment course. During further discussion with Mateo’s primary care provider (PCP), the inpatient team discovered that the discharge summary had never been received by the office, despite being faxed by the electronic medical record team after discharge. Lack of communication between the 2 systems’ electronic medical records prevented records from being directly visible, so Mateo’s pediatrician was unaware of his admission or VUR diagnosis despite multiple evaluations for both well and sick visits between hospitalizations. The PCP also emphasized that their office had variable success in acquiring professional medical interpreters without significant advanced notice, presenting a barrier to Mateo’s mother communicating this history directly. Spanish interpreter use was consistent throughout all inpatient encounters.

Initially used in a civil rights case, the term “limited English proficiency” has been perpetuated in clinical care and research for decades.¹  However, this terminology has been critiqued at length because of its focus on individual patient deficits and assumption that English is the preferred health care language.²  There has been significant debate regarding the preferred terminology, with suggestions including “non-English language preference” or LOE.^1,2  Many patients lack language preference, instead requiring the spoken use of a single language for effective communication of health information. Therefore, throughout this discussion, we will use the most inclusive and patient-centered term, LOE.

The population speaking LOE in the United States tripled between 1980 and 2019, with Spanish being the most common non-English language.³  Individuals living in Spanish-speaking households have lower rates of educational attainment and increased rates of poverty compared with English-speaking households, barriers that increase the risk of poor health outcomes in this marginalized population.^3,4  Overall, 22% of the US population over age 5 years speaks an LOE at home, which has significant implications for pediatric health care delivery.⁴ 

Having parents who prefer using LOE in health care settings is a risk factor for worse health outcomes across settings and diagnoses in the United States, independent of ethnicity and socioeconomic status.^5,6  In the outpatient setting, children with autism in Latino families speaking LOE had delayed diagnosis and more unmet therapy needs than English-speaking families.⁷  When controlling for race, ethnicity, and clinical complexity, pediatric patients with a parent speaking LOE were significantly more likely to have an ED revisit leading to admission within 72 hours of initial presentation.⁸ 

Disparities are also prevalent during hospitalization. In 1 study, children of parents speaking LOE had significantly fewer pain assessments and experienced higher levels of pain before receiving opioid medications in the postoperative setting. This discrepancy was less pronounced in patients who had more frequent interactions with interpreters.⁹  Rojas et al showed that families speaking LOE were less likely to receive a resident update after rounds.¹⁰  A study examining differences in communication during family-centered rounds found that the medical team asked fewer questions to caregivers speaking LOE, with caregivers reporting fear and inadequate time as barriers to asking questions.¹¹  In pediatric patients requiring prolonged intravenous antibiotics, patients with parents speaking LOE were less likely to receive home health referrals and averaged 60% longer hospitalizations.¹²  A multicenter study in hospitals across North America found children of parents speaking LOE were twice as likely to experience an adverse event, regardless of interpreter availability, though more frequent language-concordant touch points have been associated with decreased transfer rates to intensive care.^5,13  Despite being disproportionately affected, voluntary event reporting systems underreport adverse events in hospitalized children with families speaking LOE.¹⁴ 

Inequity in communication leads to inequity in family experience and contributes to disparate outcomes. A scoping review of 60 qualitative and mixed-method studies in 2018 examined the patient experience of individuals speaking LOE and identified several themes related to communication.¹⁵  Despite there being mandated access to language services in the US health care system, family members were often used for interpretation, leading to concerns regarding confidentiality, medical terminology, or availability. Patients voiced feeling vulnerable, disempowered, and frustrated in health care settings. Communication barriers led to some patients accepting treatment despite feeling misdiagnosed. Others left health care encounters without understanding their diagnosis, medication management, or side effects of treatment.¹⁵  A systematic review examining outcomes for children with complex health care needs supported these findings, with families speaking LOE more likely to report poor knowledge and self-efficacy in managing their child’s chronic condition.⁶  They were also less likely to report having a medical home or receiving prescription medications for their child when compared with English-speaking parents.⁶ 

In Mateo’s case, there was incomplete understanding of the diagnosis of VUR and potential need for prophylactic antibiotics despite consistent interpreter use. It is possible that additional language concordant updates during hospitalization could have improved the family’s understanding before discharge.

Hospital discharge is a care transition that has been associated with preventable adverse events, often attributed to communication breakdown. Counseling of patients before discharge often is rushed, lacks standardization, and involves multiple providers discussing large volumes of information.¹⁶  Additionally, hospital discharge can be a period of high interpersonal stress for families as they transition toward the independent care of their ill child, which can impact processing and retention of communicated health information.¹⁷ 

Written materials are frequently provided in English at a high literacy level. Often, there is no process to assess comprehension of written information or verbal instructions.¹⁷  A systematic review assessing parental knowledge and execution of discharge instructions found parents frequently missed follow-up appointments, misunderstood return precautions, and made errors in medication administration. These errors were increased in patients with multiple medications or appointments, families speaking LOE, and those with public or no insurance.¹⁸  For families speaking LOE, professional interpreters are inconsistently used, with 1 urban study reporting that only one-third of families speaking LOE received discharge instructions from someone who spoke their language well or very well.¹⁹  Nurses were 44% more likely to discuss all components of safe discharge in families speaking English compared with those speaking LOE.²⁰  The use of family and friends for interpretation is associated with decreased understanding of medication regimens.¹⁹ 

Mateo’s discharge instructions were given verbally with an in-person Spanish interpreter and printed in written Spanish. Written instructions specified the duration of treatment antibiotics, and that the family would be called with an interpreter with additional follow-up instructions once the VCUG resulted, without specific mention that antibiotics may need to be continued or changed based on the results. The prophylactic antibiotic was the same medication as the treatment antibiotic with a different dose, adding to confusion for the family.

Health literacy describes the ability to obtain, process and use basic health information and services to make appropriate health decisions. Only 12% of adults in the United States are considered to have proficient health literacy skills, and speakers of LOE are disproportionately affected by limited health literacy.¹⁷  Lower literacy leads to challenges with comprehension of discharge instructions, including medication regimens, follow-up appointments, and return precautions, which is compounded by the fact that patients with limited health literacy are less likely to ask questions about therapeutic regimens.¹⁷  Lack of understanding or knowledge may functionally lead to limited ability for parents to advocate for their child, seek additional preventive or specialty services, or fill voids in communication during transitions of care.⁶ 

In our case, it is unknown whether Mateo’s mother was able to read and write in Spanish. This represents a gap in care that should be addressed on a patient-by-patient basis by providing patients with materials appropriate for their ability to read written language, regardless of specific details included or language used.

We propose four actionable areas to improve the health care of children and families speaking LOE (Table 1). Communicating effectively using interpreters and employing health-literacy informed strategies have the potential to improve outcomes by increasing patient and caregiver understanding of and engagement with their health conditions, improving autonomy and the potential for self-advocacy. Reducing barriers to care after hospitalization helps combat contextual factors that make adherence more challenging. Finally, closed-loop communication with the PCP ensures an additional layer of protection against loss to follow-up or miscomprehension of instructions at discharge. We promote this multifaceted approach to simultaneously target multiple areas where patients are at risk for adverse outcomes in everyday encounters in an inpatient setting and during transitions of care.

Although numerous complex factors influence the health outcomes of patients speaking LOE, the role of a professional medical interpreter cannot be underestimated. Language barriers affect patients across the care continuum, from limiting accurate history taking (which has implications for diagnostic error) to challenges in understanding or adhering to treatment plans. Beyond strict interpretation or translation of verbal or written materials, the role of the interpreter has been described as a cultural broker, patient advocate, or mediator.²¹  Use of virtual video-based medical interpreter services can improve access when compared with in-person services while still providing the ability to relay nonverbal body language and gestures that may be lost with phone interpretation.²² 

Despite these clear benefits, interpreters are underused in health care settings even when available.^23,24  There is inappropriate reliance on bilingual staff and physicians who do not receive additional compensation for their skills or time, yet are expected to interpret ad hoc. Additionally, health care providers do not routinely receive adequate training on appropriate communication with patients speaking LOE or medical interpreters.²⁵  Interpreter underuse is normalized in medical culture, and many clinicians consider interpreters to be detrimental to their efficiency, leading hospitalists to evaluate and update English-speaking families more frequently.^23,26,27  In the inpatient setting, identified barriers to communication when caring for children and families speaking LOE include difficulty accessing interpreter services, bidirectional cultural differences regarding engagement between family and provider, uncertainty in what families understand, and challenges related to role delineation on large health care teams with many layers of learners.²⁸  Parents who primarily speak LOE but have some familiarity with English report concerns of alteration of interpreted material, which can be reduced by the medical team avoiding jargon and pausing frequently for interpretation and clarification.²⁹  Some of these challenges may be mitigated by the incorporation of prebriefing sessions before patient interactions, used to clarify roles and set interdisciplinary expectations for the encounter.³⁰ 

Critical interventions must include health systems change such as improved reimbursement for interpreter services and bilingual providers, institutional efforts to improve interpreter accessibility, and cultural shifts toward one with little tolerance for failure to use interpreter services when available.²⁷  Formal training for how to communicate effectively using interpreters should be an institutional priority for hospitals across the United States and should be a mandated component of all residency training programs.

Health literacy is dynamic in nature, impacted by factors such as stress or fatigue. Therefore, providers should follow the basic assumption that all patients are at risk for limited health literacy. This leads to the practice of “health literacy universal precautions,” recognizing that clear communication benefits all patients.^17,31 

Providers should offer instructions at a time when the patient is calm and without pain to improve information processing and comprehension.³²  The presence of written materials to supplement what is discussed can help the processing of information to improve understanding, but providers should always review materials together and avoid the assumption that patients will read materials independently.^17,18,33  Pictographs improve comprehension and recall of discharge instructions such as medication dosing or duration of therapy, particularly for those with low health literacy skills.^17,34  The teach-back method is a key component in the Institute for Healthcare Improvement’s recommended discharge process and has been shown to improve comprehension of post-ED medication and follow-up instructions.^35,36  Also referred to as teach-to-goal, the method involves providers teaching in small amounts. Parents are asked to reexplain the information given in their own words or demonstrate a task, such as how to administer an injection. Until the parent can do this correctly, the provider teaches the information in a different way and the process is repeated.^16,17  If the teach-back method had been used when Mateo’s mom was updated by phone to discuss VCUG results and the need for prophylactic antibiotics, it is possible that any misunderstanding could have been identified and clarified at that time.

Written and video-based discharge instructions for common conditions could be developed in multiple languages and shared collaboratively among institutions across the nation. This would help address health literacy concerns associated with providing written materials alone and would help address the gap in care that many institutions face when lacking access to interpreters for timely translation of written instructions.

Spanish-speaking caregivers have reported challenges navigating the health care system including difficulty making appointments and limited transportation as significant barriers to follow-up care.^37–39  Strategies to combat these barriers include scheduling follow-up appointments before the family leaving the hospital and filling prescriptions so they are available in-hand at the time of discharge. Social work services and support (ie, transportation resources, Women, Infants, and Children referral, or housing during hospitalization) should be used when available.^16,40  Diagnostic studies should be completed inpatient when possible if there are concerns for loss to follow-up or barriers to care in the outpatient setting. Although this strategy may raise concerns for increased costs associated with a longer duration of stay, this must be balanced with the potential for increased costs accrued through adverse events leading to unintended health care utilization via ED presentation or readmission.

In Mateo’s case, the team was cognizant that the family had limited childcare and lived far from the hospital, so they made a deliberate choice to complete the VCUG in the hospital before discharge rather than as an outpatient to reduce any burden on the family. Despite this decision, there was still ultimately a breakdown in communication leading to a potentially preventable hospitalization, although this risk may have been even higher for Mateo if the VCUG had been recommended after discharge.

There has been considerable effort in the inpatient pediatric setting to identify patients with social risk factors. Continued efforts are needed to ensure these identified families are effectively connected to needed resources.

Communication between hospitalists and primary care providers is not standardized. Discharge summaries often lack important information including pertinent test results, pending studies, or medication changes.⁴¹  Even when complete, they may not be sent in a timely manner or may not be received. Finally, a written discharge summary does not allow for the assignment of ownership of follow-up tasks after discharge or the opportunity for questions regarding care.

Direct conversation with bidirectional information exchange rather than 1-way transfer is a more effective method of communication and has the potential to reduce communication breakdown.^41,42  Mateo’s PCP might have recognized that he was not receiving antibiotic prophylaxis if they were aware of his recent admission or renal abnormalities. Hospitalists should consider a dedicated phone call to engage in direct, closed-loop communication with primary care providers, particularly if there are concerns about barriers to care or loss to follow-up. For patients speaking LOE, this additional communication could potentially impact disparities in care leading to adverse outcomes for this population.

The development of well-defined standard protocols could improve the coordination and safety of transitions in care. Reimbursement for time spent providing patient handoff has the potential to systematically improve care and offload cost of medical error incurred with poor transitions between the inpatient and outpatient settings.

The population of families speaking LOE is increasing in the United States, which has significant implications for the delivery of quality pediatric health care. Mateo’s story demonstrates that complex factors influence the health disparities in this population that extend beyond the presence or lack of a professional medical interpreter. This calls for focused and coordinated efforts from many dimensions along the spectrum of care to improve outcomes. By embracing the identified opportunities, pediatric hospitalists have the potential to positively impact the trajectory of care and improve outcomes for all pediatric patients and families, particularly those speaking LOE.