The National Cancer Policy Board concluded in its July 2001 report, Improving Palliative Care for Cancer (IOM, 2001), that there is currently insufficient information to assess or improve the quality of care provided to those who die from cancer in the United States. The Board noted that we have little understanding of the particular dying experiences of most patients with cancer—where they die, who cares for them as they are dying, what the quality of such care is, whether care guidelines are being followed, and whether these things are changing over time. This lack of information hampers our ability to develop a clear policy agenda and will, in the future, impede monitoring trends to determine whether interventions are having their intended effects of improving the quality of life for individuals at the end of life.

Knowing how well we are doing or whether things are getting better in end-of-life care requires some routinely collected information. It may be possible to make better use of data already being collected (including those collected for other purposes), but it also may be desirable or necessary to gather new types of data. The Board, therefore, decided to undertake an assessment of the information potential of current data sources to assess quality of life and quality of care at the end of life. Recognizing that the issue existed not only for deaths from cancer, but for all deaths, this report was undertaken in collaboration with the Board on Health Sciences Policy in this project that looks at deaths from all causes and at all ages, including childhood.

This report reviews the sources of information currently available that shed light on the quality of care and quality of life at the end of life. It has uncovered wide gaps between what we would like to know and what is actually known or knowable, if existing national-level data were fully explored and analyzed. The scope of the report is limited to examining large-scale data collection through vital statistics, ongoing national surveys, administrative data from the Medicare program, and some large periodic surveys. Data from these sources, if fully exploited, can provide a framework—a skeleton—for the complete story, which can be told only through the many types of hypothesis-driven epidemiologic and health services studies that are critical to filling in the details of quality of care and quality of life of real people who are dying. Often, it is the national-level data collection efforts described in this report that are used to generate hypotheses to be tested in more focused studies. And while this report delves into the types of data needed, it does not include an analysis of current funding levels, or of the funds that would be needed to carry out the recommendations. That said, however, there is a clear theme of striving for the best use of existing data, and where changes are required— either modifications of existing systems or new efforts—proposing how to accomplish them with the fewest perturbations.

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