same time, 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 guidelines are in fact 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.

Knowing how well we’re doing or whether things are getting better in end-of-life care requires some routinely collected information, as well as specific studies. New data collection efforts might be necessary, but it may be possible to make better use of data already being collected, including those collected for other purposes. HCFA’s claims for Medicare reimbursement constitute a major resource on their own, and because it is becoming increasingly feasible to link these “claims data” to those from other systems and surveys, they may prove an even more powerful data source.

The needs for an in-depth assessment of the information potential of current data sources and for an assessment of future needs are identified in this report but are not within the scope of work. The NCPB plans a comprehensive follow-on report to delve into this topic and will defer recommendations related to data collection until that report is complete.

Low Level of Public Investment in Palliative and End-of-Life Care Research

Despite billions of dollars spent on research in cancer biology and cancer therapeutics, there has been little investment in research that might significantly alleviate the physical and psychological distress of patients at the end of life. Cleeland (Chapter 8) reports that compared to the rest of the cancer research establishment, research directed at cancer-related symptom management is poorly organized, poorly conceptualized, underfunded, and dependent on an insufficient number of well-trained researchers.

The feasibility of symptom control research has been demonstrated. Studies of the epidemiology of symptoms, behavioral research, health services research, and basic research, as well as clinical trials, have already produced benefits that have been translated into better care. Although the amount of improvement has not been well studied, it is very possible that patients now experience less distress related to medical procedures, that pain is somewhat better managed, and that there is wider recognition of and attention to end-of-life issues such as patient preference for end-of-life decisionmaking. Research has also documented the gaps between current care and optimal care and has identified very specific obstacles that could be addressed to improve care.

Perhaps less obvious has been a maturation of research methods that

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