This presentation will report the results of population-based cross-sectional telephone research in Southwest Georgia with surviving family members of decedents in 2002. The study was performed for a community group of stakeholders organized to improve health system end-of-life care for citizens as a part of their strategic planning process.
The methodology replicated and extended the work of Tolle, S., Tilden, V., Rosenfeld, A., and Hickman, S. (2000)at the Oregon Health Sciences University Center for Ethics in Health Care using their survey instrument modified to include race, income, and education for both decedents and survivors.
Survey content focused on modifiable dimensions of the patient/family experiences, i.e. communication, advance care planning, decision-making, management of pain, and comfort care. Independent variables included were race, education, and income, and dependent variables included barriers, pain, support, advance planning and preferences, place of death, and communication.
Major findings suggest no significant relationship between race and perceived barriers to preferences for EOL care, as well as satisfaction with support and pain management. African Americans and non-Hispanic whites died as hospital in-patients at the same rate, and there was no statistical association found between intensity of life-sustaining treatments and race. African Americans did not expect death when it occurred at the same rate as their counterparts unless they were enrolled in hospice. Differences between African Americans and non-Hispanic whites related to the role of family "as advocates" and trust of health system providers are suggested, as well as differences in provider-patient/family communication effectiveness.
Implications for clinical practice in all settings (acute care, long-term care, hospice, and home), education of practitioners, students, and citizens, and further research on communication between providers and patients/families are described.
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