Proxy, health, and personal care preferences: implications for end-of-life care

The Institute of Medicine's report, 'Approaching Death: Improving Care at the End of Life', the American Medical Association's 'Education for Physicians on End-of-Life Care' project, the Open Society Institute's 'Project on Death in America', and the 'Last Acts' initiative sponsored by the Robert Wood Johnson Foundation have focused attention on improving the care of dying patients. These efforts include advance care planning and the use of written advance directives (ADs). Although previous studies have provided quantitative descriptions of patient preferences for life-sustaining treatment, including those documented in written ADs, open-ended written preferences have not been studied. Studies of these open-ended preferences could highlight issues with respect to quality end-of-life care. The purpose of this study was to explore the open-ended proxy, health, and personal care preferences of people with HIV as expressed in a written AD form.