Communication Gaps in Advance Care Planning with Older Latinos Living in Rural Southern New Mexico

Purpose: Multiple factors contribute to low participation rates for advance care planning (ACP), especially among older Latinos with chronic illnesses. Individuals with serious illnesses need individualized care to ensure that they are well-informed, to voice their concerns, and to reduce fear of the unknown when engaging in discussions about the possibility of dying.  Within the Latino community innovative methods are needed in order to engage in a dialogue   about the purpose, the benefits and utility of ACP. Given the diversity among Latinos communication barriers influence the delivery of important ACP information, especially about advance directives (AD) and end-of-life (EOL) care decision making.  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.

Methods: This descriptive study explores barriers to ACP communication using community-engaged intervention research to provide ACP education for older Latinos with advanced chronic illnesses living in rural Southern New Mexico. We conducted a pilot intervention providing ACP education to improve communication with family members and health care providers, as well as to influence AD documentation. Recruitment criteria included older Latinos age 50 and older with cancers and non-cancer chronic illnesses.

Analysis used descriptive methods and thematic analysis from 75 participants to identify concerns related to ACP communication from data including: survey questions, transcripts from in-depth interviews, notes and summary memos from the field, and analytical memos identifying emergent patterns.  Data are reported for 75 older Latinos with various chronic conditions.

Results: Interviews were conducted in Spanish (48%) and/or in English (52%). The majority of participants (75% female) were immigrants from Mexico (55%) living in the United States on average more than 36 years.  The majority of participants indicated a number of concerns influencing ACP communication: 72% were afraid to hear bad news, 62% worried about making EOL decisions, 62% worried that their illness was getting worse, 55% were concerned about hospitalization, 49% indicated difficulty because of language, and 46% indicated difficulty understanding their doctor.  The emerging themes were the following: 1) Many participants felt that it was important to have a good relationship with their doctor; however, most had not talked with them about ACP. Instead, most had talked with a family member, yet had not documented an AD.  2) For both Spanish- and English-speaking participants language barriers influenced the ACP dialogue because the words pertaining to ACP are hard to understand and they are not translate into English correctly. 3) The myth and erroneous belief that many “Latino people don’t want to talk about it” and that “Mexicans live day-by-day” contributes to the delay in communication regarding ACP.

Implications:  Regardless of the Social Work profession’s advancements in cultural competent practice pertaining to ACP with Latinos, few older Latinos engage in end-of-life (EOL) care communication and document ADs.  Multiple structural, cultural and economic factors contribute to low participation. The findings of the study highlight numerous implications for social workers providing care in medical settings with older Latinos in rural communities.