Describing Death in America: What We Need to Know
The effort to better understand and to improve the care received by those at the end of life requires detailed information about dying in America—not just about the demographic characteristics and health conditions of those who die, but also about their quality of life as they cope with declining health and the quality of their death. The data that describe quality of life and quality of care, and the availability and consumption of health care resources at the end of life appear to be fragmentary, but have not been examined as a whole to determine what we know now (or could know if data were better used) and what the realistic possibilities are for improving on the status quo. In this project, we will evaluate existing data sources—nationally representative surveys, disease registries, health care billing data, and vital statistics—for key end-of-life information. The review of existing information will be undertaken by an outside consultant whose report will help the National Cancer Policy Board (NCPB) set the agenda for an invited workshop, to include policy and technical representatives of federal agencies that collect relevant data, and researchers who use them. In the final report, the NCPB will prioritize what we need to know, and what we would like to know, and recommend steps to move forward.
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