Qualitative Interviews Exploring Palliative Care Perspectives of Latinos on Dialysis

Abstract

Background and objectives: Compared with non-Latino whites with advanced illness, Latinos are less likely to have an advance directive or to die with hospice services. To improve palliative care disparities, international ESRD guidelines call for increased research on culturally responsive communication of advance care planning (ACP). The objective of our study was to explore the preferences of Latino patients receiving dialysis regarding symptom management and ACP.

Design, setting, participants, & measurements: Qualitative study design using semistructured face-to-face interviews of 20 Latinos on hemodialysis between February and July of 2015. Data were analyzed using thematic analysis.

Results: Four themes were identified: Avoiding harms of medication (fear of addiction and damage to bodies, effective distractions, reliance on traditional remedies, fatalism: the sense that one's illness is deserved punishment); barriers and facilitators to ACP: faith, family, and home (family group decision-making, family reluctance to have ACP conversations, flexible decision-making conversations at home with family, ACP conversations incorporating trust and linguistic congruency, family-first and faith-driven decisions); enhancing wellbeing day-to-day (supportive relationships, improved understanding of illness leads to adherence, recognizing new self-value, maintaining a positive outlook); and distressing aspects of living with their illness (dietary restriction is culturally isolating and challenging for families, logistic challenges and socioeconomic disadvantage compounded by health literacy and language barriers, required rapid adjustments to chronic illness, demanding dialysis schedule).

Conclusions: Latinos described unique cultural preferences such as avoidance of medications for symptom alleviation and a preference to have family group decision-making and ACP conversations at home. Understanding and integrating cultural values and preferences into palliative care offers the potential to improve disparities and achieve quality patient-centered care for Latinos with advanced illness.

Keywords: Advance Care Planning; Advance Directives; Chronic Disease; Communication Barriers; Fear; Health Literacy; Hemodialysis; Hispanic Americans; Hospice Care; Hospices; Humans; Kidney Failure, Chronic; Linguistics; Palliative Care; Patient Preference; Patient-Centered Care; Punishment; Qualitative Research; end-stage renal disease; ethnicity; quality of life; renal dialysis.

Copyright © 2017 by the American Society of Nephrology.

Figures

Figure 1.

Thematic schema.