Describing Death in America

National expenditures for medical care in the months and days preceding death are enormous. But we do not know whether that money is buying good quality care or optimizing the quality of life of those dying, or whether the situation is getting better or worse over time. The information that exists "describing death" at a national level though some of it is very informative is fragmentary. This report recommends ways to fill the information gaps by better use of existing nationally-representative data, and through some new measures, in particular, a new, ongoing National Mortality Followback Survey. The aim is to allow us to benchmark where we are today as a society, and what goals we can set to minimize pain and suffering and maximize the quality of life of all of us who will die in the years to come. Table of Contents Front Matter Executive Summary 1. Introduction and Overview 2. Key Data Elements Pertaining to the End of Life 3. Currently Available Datasets 4. Methodological Issues in the Collection and Use of Data About Dying 5. Conclusions and Recommendations References Appendix A: Administrative Information for Relevant Datasets Appendix B: Information on Selected Variables Appendix C: Workshop Agenda and Participants