Friday, 14 January 2005 - 8:00 AM

This presentation is part of: End-of-Life Perspectives: Family and Elders

End-of life challenges, fears, and care preferences: Congruence in reports of low-income elders and their family members

Purpose: Practice standards and quality care indicators at the end of life (EOL) have been developed primarily from the perspective of professionals. Little attention has been given to the experiences and care preferences of elders dying with advanced chronic disease and their family caregivers. Incongruence in the perceived challenges, fears and preferences of dying elders and their family caregivers may contribute to unmet needs and family conflict near the time of death. The purpose of this qualitative study is to enhance understanding of shared and incongruent EOL perceptions and care preferences of low-income elders with advanced chronic disease and their family members. This research was funded by the John A. Hartford Foundation, Geriatric Social Work Faculty Scholars Program.

Methods: Results reported here are drawn from a larger longitudinal, multi-method study that used an embedded case study design to understand how EOL care is provided to diverse frail elders in an innovative, fully “integrated” managed care program. Sources of data analyzed for the current study include qualitative in-depth interviews with 10 low-income elders (age range 64-101) and 10 of their family caregivers. Interviews were transcribed and coded independently by two researchers. Themes were compared within and across interviews, using the constant comparative method.

Results: A thematic conceptual matrix was developed to detail the congruence in elder and family caregiver reported challenges and fears, and care preferences. Shared concerns of elders and family caregivers were related to physical discomfort and functional decline, and the desire to maintain control over the process of dying. Incongruence was found in fear of death, communication needs, challenges and preferences for care in EOL.

Implications: Findings from this study have important implications for practice, suggesting care preferences and sources of unmet needs and conflict among elders and family members near the EOL. The incongruence reported by respondents suggest domains in which social work interventions could be further developed and targeted to enhance the dying experience and minimize family conflict.

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