Sampling challenges in end-of-life research: Case-finding for family informants

Background: Research on end-of-life care is hampered by challenges in accessing appropriate subjects for data collection. Although families of decedents are rich sources of research data, they are underutilized, most likely due to the access difficulties they present to investigators. Objectives: To describe case-finding strategies that can achieve a large and representative sample of family informants for research studies about end-of-life care. Methods: Case-finding strategies were developed and honed over the course of three epidemiological studies on end-of-life care. Family location information was culled from death certificates and a combination of public and commercial sources. Results: The researchers generated large random samples of study-eligible decedents and, using the case-finding strategies described, recruited family members of decedents as informants. By the third study, two-thirds of family members were located and interviewed within the narrow time frame of 2-5 months following the death of their loved one. Discussion: Epidemiological studies on end-of-life, using large random samples of decedents and their family members, are feasible when armed with an array of effective case finding strategies.