Friday, 14 January 2005 - 8:00 AM

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

End-of-life care preferences of family members caring for an older relative: A longitudinal perspective

Purpose: The purpose of this study was to explore how experiences with giving care to an older relative and the subsequent death of the relative affect the family member’s own end-of-life care preferences. This research was funded, in part, by the John A. Hartford Foundation’s Geriatric Social Work Doctoral Fellowship and a National Institute on Aging Pre-doctoral Traineeship Award.

Methods: Results reported for this qualitative study utilized data from a mixed-methods longitudinal investigation of 307 family caregivers for older persons with a diagnosis of hip fracture or stroke in three metropolitan areas. Data came from a series of four in-depth semi-structured telephone interviews with 110 caregiving family members who experienced the death of an older relative between the one-year and five-year interviews. Family members were asked about the kinds of care they would like to receive if they ever needed personal care, at the one-year and five-year interviews, which enabled a comparison of the responses over time. At the five-year interview, open-ended questions also explored changes in family members’ situations, any care they had received, and circumstances surrounding their older relative’s death. Close-ended questions addressed specific types of advance care plans made. A final question invited comments about the effects of family caregiving on them and their own preferences for care.

Results: Almost all family members in this study expressed preferences for their own end-of-life care. By the final interview, many of them offered more details about their preferences and/or reported changes in preferences. The finding that more than ten percent of the caregiving family members died by the end of the study speaks to how fragile their own health was as they provided care to others in the family. Verbal discussions, which varied in terms of quality and quantity, occurred more often than completion of written plans. Qualitative results provide rich descriptions of family members’ preferences for care, the effect of caregiving on preferences, and changes in preferences over time.

Implications: Planning for care at the end of life is a dynamic multifaceted issue that affects the entire family constellation. Findings suggest that family members providing care, particularly those in frail health themselves, may benefit from social work interventions that encourage advance care planning and exploration of their own end-of-life preferences, as well as those of the individual receiving care.

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