Measuring end-of-life care outcomes retrospectively

Fundamental to measuring both the processes and outcomes of end-of-life care is that one understand the context and distinct differences of that care. Measurement plays an important role in clinical assessment, research, quality improvement, and public accountability. Some of the unique challenges that confront investigators using prospective research designs to assess quality of end-of-life care can be addressed with retrospective approaches or follow-back designs. Retrospective research avoids reliance on the difficult task of prospectively identifying the terminally ill, avoids burdening very sick participants, minimizes missing data because of poor functional status, creates a clear time frame for the purpose of comparing settings of care, and is a cost-effective way to collect population-based data about individuals who have died. This paper reviews research using a retrospective design and analyzes the reliability and validity issues associated with a follow-back design. Although methodological challenges beset both prospective and retrospective data collection, use of both methods in combination or in sequence provides a clearer understanding of the complex, multidimensional issues involved in providing care to dying individuals.