Intensive procedure preferences at the end of life (EOL) in older Latino adults with end stage renal disease (ESRD) on dialysis

Abstract

Background: Latinos in the U.S. are almost twice as likely to progress to End Stage Renal disease (ESRD) compared to non-Latino whites. Patients with ESRD on dialysis experience high morbidity, pre-mature mortality and receive intensive procedures at the end of life (EOL). This study explores intensive procedure preferences at the EOL in older Latino adults. Methods: Seventy-three community-dwelling Spanish- and English-Speaking Latinos over the age of 60 with and without ESRD participated in this study. Those without ESRD (n = 47) participated in one of five focus group sessions, and those with ESRD on dialysis (n = 26) participated in one-on-one semi-structured interviews. Focus group and individual participants answered questions regarding intensive procedures at the EOL. Recurring themes were identified using standard qualitative content-analysis methods. Participants also completed a brief survey that included demographics, language preference, health insurance coverage, co-morbidities, Emergency Department visits and functional limitations. Results: The majority of participants were of Mexican origin with mean age of 70, and there were more female participants in the non-ESRD group, compared to the ESRD dialysis dependent group. The dialysis group reported a higher number of co-morbidities and functional limitations. Nearly 69% of those in the dialysis group reported one or more emergency department visits in the past year, compared to 38% in the non-ESRD group. Primary themes centered on 1) The acceptability of a "natural" versus "invasive" procedure 2) Cultural traditions and family involvement 3) Level of trust in physicians and autonomy in decision-making. Conclusion: Our results highlight the need for improved patient- and family-centered approaches to better understand intensive procedure preferences at the EOL in this underserved population of older adults.