Obtaining death certificate

INTRODUCTION

Data from vital records such as death certificates provide critical information for use in monitoring the health of the population, conducting research, implementing prevention programs, and formulating health policies. In the United States, state laws require that demographic information on death certificates be recorded by funeral directors, who are asked to report the decedent's characteristics on the basis of information from the next of kin. Despite the importance of this data source for public health, demography, and other fields, information collection practices actually used by funeral directors have not been studied.

Discrepancies between death certificates and other data sources with regard to the demographic characteristics of individuals may originate in recording practices. Several studies have shown inconsistencies for some racial and ethnic groups between death certificates and other sources. (1-7) For example, in an analysis of a sample of U.S. adults, "race"/ethnicity information on death certificates for most racial/ethnic populations was found to be generally consistent with the information reported by decedents before they died--the standard for death certificate reporting of race/ ethnicity. However, many individuals who had identified themselves as American Indian were reported as white or black on death certificates. (4) In another study, a comparison of racial information on a sample of U.S. death certificates with information reported by next of kin indicated that certificates are highly consistent with next-of-kin reports determining racial identification for whites and blacks, but less so for Asians and Pacific Islanders and for American Indians. (3)

Similar problems of categorization apply to the determination of the occupation and industry of decedents. Despite the demonstrated utility of death certificate data in occupational epidemiology for exploring the etiology of specific diseases such as tuberculosis, (8) cancers, (9) and neurological diseases, (10) the quality of occupation and industry data reported on death certificates varies widely. Schade and Swanson cite numerous studies in which "misclassification or over-reporting of occupation and industry data on the death certificates ranged from 30% to 50%," suggesting that the "utility of death certificate data for studies of occupationally induced diseases, especially those such as cancer, which require usual employment as the minimum level of accuracy," is limited. (11)

Evidence of inconsistency was found between death certificate and next of kin information on other variables as well, including age, in a study using 1986 data. (3) An educational attainment item was added to the U.S. Standard Certificate of Death in 1989 in response to the need for a simple measure of socioeconomic Status. (12-14) Anecdotal reports to CDC's National Center for Health Statistics (NCHS) indicate that in some states funeral directors have difficulty in either eliciting or obtaining accurate responses for educational attainment.

The death registration system in the United States is decentralized; responsibility for registration is vested in the registration areas: the states, New York City, Washington, DC, and territories of the United States. NCHS has promoted the degree of uniformity necessary for national statistics by periodically issuing recommended standards, which take the form of recommended laws and regulations (Model State Vital Statistics Act and Regulations), definitions, and reporting forms (U.S. Standard Certificates and Reports). These standards are developed through a cooperative process that involves the federal government, the states, and groups such as associations of funeral directors, medical personnel, and researchers, who either complete the various records or use the data.

Information collected through state registration systems is obtained and compiled by NCHS to produce national vital statistics data through the Vital Statistics Cooperative Program.

As early as the 1600s, a few political jurisdictions or large cities began registering deaths, although most states did not enact laws mandating the registration of deaths until after 1900. By 1933, all states had achieved at least 90% registration completeness and were included in the national vital statistics data system. The registration system that developed in the United States after 1900 placed most of the responsibility for registration of deaths on funeral directors.

By law, funeral directors are responsible for completing and filing death certificates. In most states, the funeral director who first assumes custody of the body is responsible, while in other states, responsibility lies with the funeral director handling the body's disposition. The funeral director obtains personal information from the best source available (usually next of kin) and obtains cause-of-death information from the attending physician, medical examiner, or coroner. The funeral director then files the death certificate with the appropriate registration authority in the state where the death occurred. The federal government and many states provide handbooks for funeral directors on completing death certificates. (15-16) Certificates filed by funeral directors are reviewed by local and state registrars, who may query blank or inappropriate responses on certificates. In national mortality statistics, information on "race," marital status, and Hispanic origin is missing for [less than or equal to] 0.4% of deaths; occupation is missing for 1.5%; industry is missing for 1.4%; and information on education is missing for 4.4% (NCHS, Division of Vital Statistics, unpublished data; 1997). Although deaths of American Indians on reservations are also reported on state death certificate forms, the reservations are legally autonomous and reporting processes on reservations can differ, affecting the completeness of death information on American Indians.

Little has been written about the process by which demographic information is obtained by the estimated 35,000 licensed funeral directors in the United States on more than 2.3 million U.S. decedents per year. (17) This study assessed the methods used by funeral directors to complete death certificates. More specifically, we analyzed the processes for obtaining and recording demographic information, the training in procedures for collecting demographic information received by the funeral directors, and potential obstacles to the collection of required information.

METHODS

The study was conducted in two phases. We began in 1993 by holding focus groups with funeral directors in three locations--Birmingham, San Francisco, and Albuquerque--to develop a survey questionnaire and to assess the feasibility of collecting information using a telephone survey. Second, using information from the focus groups, we designed a questionnaire for a survey of funeral directors. Based on the focus groups, we decided that valid information could be better collected through in-person interviews than through telephone interviews.

To standardize observations of the demographic data collection process, we described a series of fictitious decedents and asked funeral directors to assume that the interviewer was the fictitious decedent's next of kin and to role-play collecting demographic information on the decedent. However, because we did not collect detailed, contextual information on what the funeral director was thinking and why, we could not fully interpret these data and thus do not include them in this analysis.

We selected five urban sites for study interviews on the basis of varied ethnic distributions, known differences in the use of information on occupation and industry that may result in differences in data collection, a mixture of urban and rural populations, and travel costs. Five sites were selected: Albuquerque, Seattle, Philadelphia, the Washington, DC, area (including parts of Virginia and Maryland), and the Memphis area (including parts of Mississippi and Arkansas).