Measuring the quality of dying and death: methodological considerations and recent findings

While the need to improve the quality of dying and death in critical settings has been well accepted, there is less agreement on which measures and criteria are best used to assess it. In this article, we present methodological considerations and recent findings that pertain to the measurement of the quality of dying and death.

Research evaluating the quality of dying and death employs measures based on professionally determined criteria as well as measures relying on patient and family-centered standards. Professionally determined measures include assessments of resource consumption (e.g., length of stay, costs of care, technology utilization) and processes of care (e.g., do-not-resuscitate orders, family conferences). Studies of interventions designed to improve end-of-life care have shown positive changes in these outcomes. Patient and family-centered measures (e.g., quality of dying and death questionnaires, quality of end-of-life care questionnaires) have been used less often in intervention studies but, in descriptive studies, have shown important associations with factors related to a 'good death'.

These findings suggest a need to integrate both types of measures in research on the quality of end-of-life experiences. This integration, with attention to important methodological issues, may represent a significant step toward improving patients' experiences at the end-of-life.