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Family Surrogate Decision Making at the End of Life: Seeing them Through with Care and Respect

University of Buffalo, New York.

Family surrogate decision makers are pivotal in end-of-life decision-making processes. The author investigated decision-making experiences of 20 surrogates who assisted terminally ill family members for this grounded theory study. Findings describe a basic social process of Seeing Them Through With Care and Respect, during which surrogates continuously synthesized the core values of caring for their family member and respecting their family member’s autonomy. Surrogate narratives began with Learning the Diagnosis. The major categories of surrogate decision makers’ activities during the process were Standing With and Acting For the ill family member. Events reported in two gating categories, Brokering Information and Working With Family, facilitated or impeded decision making. A final category, Outcomes, reports consequences for the surrogate of having been a decision maker.

Key Words: terminal care • end-of-life decision making • family decision making

Qualitative Health Research, Vol. 14, No. 2, 204-225 (2004)
DOI: 10.1177/1049732303260501


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