Community-Engaged Research: Language Barriers That Influence Advance Directive Education in Rural Southern New Mexico

Language barriers influence the timing and quality of advance care planning (ACP) education and limits communication between seriously ill individuals, their families and healthcare providers.   Communication gaps negatively affect the ways in which individuals make informed decisions about medical care. Lack of knowledge about ACP and misinformation about the use of advance directive documentation affects the mismanagement of individuals’ care, influencing the over- or under-use of medical treatment. This is especially important for older Latinos who experience limited English proficiency or low health literacy which leads to complex communication and challenging circumstances when attempting to access information in a language that they can understand.

Additionally, Latinos experiencing lower socio-economic status or gaps in health insurance tend to use safety-net medical settings for their care. In these settings, healthcare providers often lack time to engage patients in effective ACP discussions and both providers and individuals avoid the topic of illness and death, leading to aggressive medical treatment. While overuse of treatment is linked to gaps in ACP education, Latinos tend to accept more aggressive treatment at the end of life than non-Hispanic whites; and, many Latinos have not documented or communicated their end-of-life care preferences to anyone,  relying on surrogate decision-making when seriously ill.  Consequently, limited knowledge of ACP, communication gaps and language barriers contribute to misinformation, confusion, and frustration which can trigger hastened decision making and unplanned health outcomes.

Objective

Using community-engaged research to connect with rural communities in Southern New Mexico, this study explores language barriers influencing ACP education with older Latinos diagnosed with various chronic illnesses such as cancer, cardiovascular heart failure (CHF) or disease (stroke), chronic obstructive pulmonary disease (COPD), liver failure, diabetes, and/or renal/liver failure.

Methods

Using open-ended, in-depth interviews, we explored older Latinos’ experiences with language barriers (n=75).  Among participants enrolled in a pilot intervention that provided ACP education were asked to explore their experiences with understanding information which revealed various language limitations. Thematic analysis, a constant comparison method, was used to analyze all transcripts, memos, and field notes.

Results

While participants stated they understood ACP education provided in the intervention, they also expressed language barriers influencing communication and documentation of advance directives.  Emergent themes involve: 1) difficulty understanding information in Spanish or English due to issues of limited literacy and low education levels; 2) complex language issues such as the use of technical language that does not easily translate into Spanish; 3) use of complex language that is difficult to understand, especially when providers use different language to explain similar concepts about ACP; and 4) because the topic of death and dying is a difficult topic to discuss openly.

Interpretation

Findings have implications for educating older Latinos with and without language limitations regarding ACP.  Social workers working with older Latinos in medical settings need awareness about the impact of language for ACP education to assist individuals and their families to access and understand the information needed to improve decision making, especially for older Latinos with chronic illness facing the end of life.