Objective: The purpose was to investigate health care decision-making experiences and processes of family member surrogate decision-makers for terminally ill family members.
Design: Qualitative
Population, Sample, Setting: Purposeful sample of twenty persons who had functioned in the role of family surrogate decision-maker during the terminal cancer illness of a family member. Participants were recruited through bereavement support groups, networking, and snowball sampling.
Methods: Data were collected in individual semi-structured interviews and focus groups. Sixteen persons participated in individual interviews, and four persons participated in a focus group interview. Data were analyzed using the constant comparative method of grounded theory. Toward completion of the analysis, a verification focus group with two participants was conducted to aid in validating and refining the theoretical model.
Findings: Surrogate decision-makers engaged in a basic social process titled Seeing Them Through with Care and Respect. Major categories describing surrogates' activities in relationship to the ill person included Standing With and Acting For. Gating categories of Brokering Information and Working with Family facilitated or impeded surrogates’ movement through the process. The temporal boundaries of the basic social process were described in the categories of Learning the Diagnosis and Taking Leave. A final category, Outcomes, reported the lasting consequences for the surrogates of having been the decision-makers for their family members.
Conclusions: The family surrogates described decision-making as an ongoing process of helping to sustain the ill family member, rather than as a discrete event. Throughout this process, surrogates synthesized the sometimes conflicting core values of caring for their family member and respecting their family member’s autonomy and self-determination. Taking on this role had long-term effects for the surrogates. Family member surrogate decision-makers are pivotal in end of life (EOL) decision-making processes. Nursing interventions to address their needs should be developed and tested.
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