Regional Study of Care for the Dying: methods and sample characteristics

Abstract

The Regional Study of Care for the Dying (RSCD) was established in 1990 with the dual aims of providing district health authorities with an audit of local services for the dying, and of addressing questions about experiences of people dying from cancer, effectiveness of hospice care, and needs of, and appropriate service provision for, people dying from causes other than cancer. The survey methods are described in this paper, together with the characteristics and representativeness of the sample. An interview survey was conducted of family or others who knew about the last year of life of a random sample of people who died in 1990. It was based upon methods used in nationally representative surveys by Cartwright in 1969, and Cartwright and Seale in 1987. The setting was 20 district health authorities, who paid for local data collection. Approximately 270 deaths were randomly sampled in each district: 5375 deaths were sampled in total. As cancer patients are the focus of most services for the dying, cancer deaths were sampled disproportionately (54%). Interviews were obtained for 69% (3696) of the sample. The response rate varied significantly by cause of death, age and social class of deceased, and the degree of deprivation of the district. There were small, but statistically significant, differences in cause of death and age between those deaths for whom interviews were obtained and national figures for deaths occurring in 1990. The discussion addresses key issues in the study, including responses from ethical committees, response rate and quality of data. The survey has been successful, both in providing districts with information on local services, and in obtaining a large, broadly representative, sample of deaths, thus enabling many outstanding questions about the needs of dying patients and their families, and about appropriate service provision, to be addressed.