Improving the physical comfort and emotional and spiritual well-being of dying patients has become a national concern to individual patients, health professionals and family members who provide care, and policy makers who must decide how to allocate resources for end of life care. Data show that patients' preferences regarding type and site of terminal care often differ from what actually happens. Research on this discrepancy has focused primarily on structural factors such as access to hospital beds and funds for home care. Little is known about patient and caregiver characteristics that contribute to the degree of congruence between preferences and outcomes, or that diminishes or sustains patient and caregiver well being during terminal care. This revised application, submitted as an Investigator-initiated Interactive Research Project Grant, proposes a preliminary study to determine the feasibility of conducting a full-scale study to explain discrepancies between preferences and outcomes in type and site of end of life care, and patient and caregiver well-being. The full-scale study will be proposed subsequently. The research focuses on patients with AIDS and cancer, living at home at study entry, and their primary family caregivers. This preliminary study will determine the feasibility of: a) identifying terminally ill patients with approximately 3 to 6 months to live, b) recruiting terminally ill patients and their primary family caregiver, and c) retaining terminally ill patient/caregiver dyads until the patient dies or through six months. The preliminary study will also be used to refine the assessment protocol, including measures of structural variables added since the original submission. This preliminary study will follow 44 dyads (88 dyads total) of terminally ill patients and their primary family caregiver at Columbia/NY Psychiatric Institute and the University of California San Francisco. The data collected in the preliminary study will be used in the full-scale study.
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| Wrubel, Judith; Acree, Michael; Goodman, Steffanie et al. (2009) End of living: maintaining a lifeworld during terminal illness. Psychol Health 24:1229-43 |
