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with variations in the quality of existing data; (3) coping with the difficulties in collecting data from dying people and their loved ones; (4) characterizing the quality of end-of-life care; and (5) defining the period to be considered the “end of life.” A more general issue is the lack of standardized terminology in this field. The various conceptual models described in Chapter 2 of this report (which use the original terms, as reported by authors) begin to suggest the variety of language used. The relatively small community of researchers working in this field do interact closely, but should be encouraged to begin converging on a set of defined terms that can then be used in surveys and other types of research to improve comparability among data sets.
Obtaining information from varying perspectives. A full evaluation of the quality of life and quality of care at the end of life requires information from several perspectives: (1) that of the person dying, (2) that of dying person’s loved ones who are intimately involved in the person’s death, and (3) that of health care providers who are in a unique position to judge the quality of care with respect to current science and professional standards and to report the services used. Most clinicians and researchers acknowledge the importance of the patient’s perspective in understanding quality of care, as well as the importance of recognizing the family as the target of care (Donaldson and Field, 1998; Stewart et al., 1999; Teno et al., 1999). Gathering data in a systematic way that captures the perspectives of patients, their loved ones, and health providers is challenging, though—and at present, it is basically not done.
Coping with variations in the quality of existing data. A second challenge is dealing with the variation in quality—i.e., completeness, reliability, and validity—of available data. Information about quality of life and quality of care at the end of life is important to clinicians and to researchers, to individuals and organizations interested in internal quality improvement efforts, and to agencies concerned with external inspections. As this field of inquiry grows and develops, there will be variations in the precision of the data collection and in acceptable standards for reliability and validity. Clearly, some early pilot studies will have to use tools that are not validated, but one aim of that type of research will be to learn about the tools and determine whether they can be used widely. Similarly, as we look to large datasets for information, we must weigh the advantages of developing a portrait using the relatively crude tools that exist, with the risk of being misled by the use of data originally designed for a wholly different purpose.
Coping with the difficulties in collecting data from dying people and their loved ones. A third important challenge is coping with the difficulties of collecting data from dying people and their loved ones.