a desire to understand more about the dying experiences of the young people who die and their survivors. The recommendations in Chapter 5 include ways that this can be accomplished.
This report by the National Cancer Policy Board addresses four key questions:
What data would ideally inform end-of-life care?
What data are currently available to describe dying in America?
What methodological issues must be considered in the collection and use of data about dying?
What steps can be taken to enhance data collection efforts so that they can be used to monitor and improve the quality of end-of-life care?
To prepare this report, the Board contracted with staff at the RAND Center to Improve Care of the Dying to compile a catalog of nationally representative surveys, disease registries, administrative and billing data, and vital statistics files which could be used to describe the experience of dying in America. These datasets address the full range of ages and potential causes of death. A panel of experts critically reviewed the resulting catalog to (1) assess the extent to which existing data could be used to describe care at the end of life; (2) identify the limitations of current data collection efforts; and (3) develop strategies to improve the data available to monitor the quality of end-of-life care.
Chapter 2 describes proposed domains of quality of life and quality of care at the end of life and identifies data elements that might be available in current datasets to permit monitoring care.
Chapter 3 summarizes administrative information about the large publicly available datasets that track decedents and describes the data elements that capture information relevant to end-of-life care.
Chapter 4 outlines methodological issues, such as the generalizability of existing samples, limitations of survey methods, use of proxy data, confidentiality and linking datasets, and other issues uniquely associated with collecting information about the end of life.
Chapter 5 summarizes the report findings and presents the National Cancer Policy Board’s recommendations.