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Care Preferences at End of Life

Improving the physical comfort and emotional and spiritual wellbeing of dying patients has become a national concern to individual patients, health professionals and family members. Data show that patients' preferences about care at the end of life often differ from what actually happens. Research in this area has focused primarily on structural factors (e.g. access to hospital beds, finances). Little is known about patient and caregiver characteristics that contribute to the degree of congruence between preferences and outcomes, or that diminish or sustain patient and caregiver wellbeing during terminal care. The specific aims of this preliminary study of terminally ill patients with AIDS or cancer and their primary family caregivers are to determine the feasibility of:

1. Identifying terminally ill patients with approximately 3 to 6 months to live, using a strategy that takes optimistic bias into account;

2. Recruiting terminally ill patients and their primary family caregivers;

3. Retaining terminally ill patient/caregiver dyads until the patient dies or through the completion of the study (a maximum of 2 years).

The goal of this preliminary study is to determine the feasibility of conducting a full-scale study to explain disparities between preferences and outcomes in type and site of end of life care, and patient and caregiver wellbeing.

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