Rural Appalachian Person and Family Decision Making at End of Life

The dynamics of delivering care to persons at end of life (EOL) have dramatically changed in the last twenty years. Improved management of chronic illness and provision of aggressive life sustaining measures for an illness once deemed fatal are more common, significantly increasing longevity. While it is estimated that more than 40 million persons with life-limiting illness worldwide are candidates for some form of palliative or end-of-life care (EOLC), less than 14% of them will receive it.

When coping with life-limiting illness, people and their families are asked to make many complex and difficult decisions about EOL, palliative, or hospice care. The role a family chooses to play at EOL is reflected in the cultural expressions, patterns, and practices they use to help make meaning from the life-limiting illness and subsequent death of the family member. The purpose of this qualitative ethnonursing study was to discover and describe the culture care expressions, patterns, and practices that influence rural Appalachian families when making decisions at EOL. The goal is to discover generic and professional care that supports rural Appalachian families to make decisions that help them receive culturally congruent EOLC. Interviews with 10 key and 15 general informants provided in-depth examination of the culture of rural Appalachians within the context of family decision making (FDM) at EOL. Guided by the theory of Culture Care Diversity and Universality and the ethnonursing research method, four themes were discovered:

• Theme 1 – Rural Appalachians make EOL decisions with family,

• Theme 2 – Communication encompassing EOL FDM is essential and complex,

• Theme 3 – Education and economics influence FDM at EOL, and

• Theme 4 – The need for comfort for living while dying.

The study provided important insight into the EOL decision making experience for rural Appalachians which may ultimately improve access to palliative and hospice care for this underserved population, thereby contributing to a dignified death for persons with life limiting illness and their families. Recommendations for nurses and other interdisciplinary team members may reduce health disparities for rural Appalachians and promote meaningful culturally congruent EOLC.