Meeting the preferences of terminally ill persons is essential to the provision of quality end-of-life care. Although many intervention studies have been based on the assumption that terminally ill patients desire less technologically intensive care, this assumption has not been well studied. As the first longitudinal study of the treatment preferences of older terminally ill persons, the overall objective of this study is to examine changes in the preferences of both patients and their families across a spectrum of diseases as the patient's illness progresses. The primary aim is to determine the effect of primary diagnosis, health status, and healthcare utilization on the preferences of patients and their families. The proposed study will involve 226 terminally ill older persons and a family member. They will be interviewed in their homes every four months if medically stable, and as frequently as every month if the illness is progressing. In contrast to previous studies, which have primarily measured preferences in terms of specific treatment preferences, this study will use patient-centered measures of preferences. Derived from qualitative research, these reliable and valid instruments measure preference in terms of treatment goals. The relationship between disease diagnosis, health status (functional status, symptoms, self-rated health), healthcare utilization (hospitalization, intensive care unit admissions, nursing home admissions), and understanding of the illness prognosis and preferences will be examined using longitudinal repeated measures analysis. The understanding of patients' and family members' treatment goals over the course of a terminal illness is essential to the development of new systems of care for terminally ill patients. Furthermore, the characterization of patients' preferences in terms of their treatment goals instead of their specific treatment preferences provides the basis for future interventions designed to improve physician-patient communication. This study utilizes a unique cohort of community-dwelling older persons identified as having a terminal illness by objective criteria.
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