Cultural Relevancy of Palliative and End-of-Life Care: Conversations with Indigenous Elders

Purpose: Access to palliative and end-of-life (EOL) care is severely limited for South Dakota (SD) Native American/American Indians [NA/AI] (Isaacson et al., 2014), which is of significant concern given their high morbidity and mortality rates (SD Vital Statistics Report, 2012). Palliative care professionals and NA/AI healthcare providers identify funding, infrastructure, and misperceptions specific to the NA/AI population and palliative/EOL care as barriers to access (Isaacson et al., 2014). Addressing these barriers and feasibility concerns must occur by bringing together key individuals and include persons receptive to the voices and concerns of NA/AIs residing in reservation communities (Isaacson et al., 2014). The purpose of this presentation is to share findings from a collaborative study conducted with NA/AI elders and health educators regarding palliative/EOL care and the preliminary framework of a culturally relevant palliative care program founded on the Clinical Practice Guidelines for Quality Palliative Care (National Consensus Project, 2013) for this SD reservation community.

Design: This community-based participatory research (CBPR) design incorporates ecological systems theory’s (EST) key ideas of relatedness and a person’s ecological environment (Caballero et al., 2003). The ecological environment comprises numerous systems which intentionally and unintentionally impact individuals during their lifespan (Kumpfer, 1999). The microsystem is the individual and considers the interplay between family, friends, or community; the affiliations and bonds with these groups make up the mesosystem (Caballero et al., 2003; Bronfenbrenner, 1979). The exosystem’s impact on the individual can either be ambiguous or straightforward, often tied to work or administrative decisions. Cultural values, beliefs, and traditions are the macrosystem, and shape the micro-, the meso-, and the exosystem (Bronfenbrenner, 1979). EST in combination with CBPR provides a solid framework toward discovering a tribal community’s assets and vulnerabilities.

The principal investigator (PI), in conjunction with Tribal Health Administration, organized, convened, and facilitated six focus groups over five months. Members of the focus groups comprised one Community Advisory Group (CAG), which included NA/AI elders and NA/AI healthcare professionals from the tribal community. The research questions guiding this study were:  What is palliative/EOL care?, and What are the advantages/disadvantages, including cultural considerations, needed to establish palliative/EOL care on the reservation?

Initial meetings centered on defining palliative/EOL care specific to this tribal community and included boisterous discussions related to the challenges of working with the Tribal Council. As the meetings progressed the CAG reviewed the clinical practice guidelines, adding culturally specific recommendations. The PI digitally recorded and transcribed verbatim each CAG meeting. Subsequent analyses of narratives were conducted using thematic content analysis per Sandelowski (2000). The transcribed narratives were returned to CAG members prior to each meeting. The PI, following the tradition of tribal communities, orally reviewed the major themes identified; following the oral presentation, the CAG would negate or validate the themes.

Findings: Cultural applications to EOL clinical practice guidelines were made by the CAG. During this time identification occurred related to opportunities and challenges for growth in caring for NA/AIs, not only in reservation communities, but beyond reservation borders within the state and Indian Health Service (IHS). Opportunities included: 1) Mandatory cultural awareness training for all IHS employees; 2) Exploration of tele-health capabilities; 3) Establishment of a homecare program; 4) Palliative/EOL training for IHS personnel; and 5) Advance directive education for elders. Challenges centered on the poor economic conditions and the many small, dispersed, and geographically isolated communities on the reservation.

Discussion: This study demonstrates the effectiveness of the CBPR/EST design. The PI, as facilitator, assisted the CAG by reviewing the philosophical underpinnings of palliative/EOL care. The CAG determined congruency of palliative/EOL care principles with their cultural lifeways, dispelling the misperceptions barrier. The CAG concurred that barriers specific to infrastructure and funding are present, and after assessing each reservation district’s resources and needs, remained hopeful that delivery of palliative/EOL care could be feasible through ingenuity and collaboration. From the focus group dialogue and continued conversations, the CAG has applied for and received additional funding to begin an advance directive elder education program where elders will become trained advance directive coaches. These new advance directive coaches will provide education to other elders in 12 reservation communities. Additionally, meetings are planned with IHS to share the study results and to initiate discussion regarding the need for a culturally congruent palliative/EOL program in this community.