A Demographic and Prognostic Approach to Defining the End of Life

Studies examining individuals' preferences reflect a broad consensus that the end of life is a period during which medical care should be different from that in other periods in patients' lives. More specifically, patients, families, and health care providers believe that medical care during this unique period should be home-based and focused on ameliorating patient symptoms through minimally invasive means rather than hospital-based acute care, and focused on extending life through invasive approaches. Of great concern is that other, empirical research shows that there is a large disparity between these preferred types of medical care at the end of life and the actual patterns of medical care that is observed before death, with most patients dying in acute-care hospitals while receiving invasive therapies. Without prospective recognition of this period, medical care cannot be appropriately changed. Existing research suggests that there are few clinical tools available to health care providers to aid in making prognostic estimates. Opportunities for future research include efforts to improve the prospective identification of the end of life and communication about the end of life. Specifically, development of valid and reliable predictive algorithms to help patients, families, and health care providers to identify the beginning of the end of life would be welcomed and should ideally be focused at the population level to ensure wide applicability. Similarly, research that works to improve communication between patients and health care providers on the matter of prognosis is also needed.