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DATASETS TRADITIONALLY USED TO DESCRIBE DYING
The most immediate information gathered about a death is found on the state-required death certificate. National vital statistics rely heavily on information from death certificates, although federal tracking of death registration was not complete across the entire United States until 1933 (Lilienfeld and Lilienfield, 1980). The U.S. Standard Certificate of Death (Figure 3-1) was developed through a collaborative effort between the National Center for Health Statistics and the states. Although there is no formal agreement to use this standard certificate, the National Center for Health Statistics has an agreement with the states through the Vital Statistics Cooperative Program to provide data in specified formats consistent with the standard certificate.
The death certificate assigns physicians, medical examiners, and coroners the responsibility for documenting the cause of death through a system that acknowledges the possibility of multiple causes. The disease, injury or complication that caused death (not the mode of dying such as a cardiac arrest) is noted on line “a” as the immediate cause of death. Then diseases or injuries that initiated the events resulting in death are recorded, beginning with the condition that gave rise to the immediate cause of death (line b), which in turn resulted from a further condition (line c). Additional lines may be added as necessary such that the underlying cause of death is on the lowest line used in Part I. Part II of the death certificate is used to list other significant conditions contributing to death but not resulting in the underlying cause of death. Demographic data (such as age, race, place of residence and marital status) and crude measures of socioeconomic status (SES) (such as educational attainment, usual occupation, kind of business) are recorded by the funeral director on the death certificate.
The National Center for Health Statistics will recommend a revised version of the standard death certificate in 2003, which will include the expansion of the question on Place of Death to include “Hospice Facility.” Although problems with improper completion of death certificates and inaccuracy in reporting the cause of death continue (Lloyd-Jones et al., 1998; Maudsley and Williams, 1996; Smith Sehdev and Hutchins, 2001), the National Center for Health Statistics continues to develop and advance standardized coding, training workshops and other quality improvement efforts. Part of the problem is the lack of formal training in many medical schools or residency programs. Further, there is considerable variation among states in the sophistication of record keeping, in