and health care providers. These instruments must be developed and adapted for different cultures and ethnicities.
Measurement tools should be consistent with professional guidelines and the best available research. For many cancers, there is a strong evidence base to inform treatment decisions. However, research on the risks and benefits of cancer treatment, especially in those cases where chemotherapy, radiation treatment, and other treatment modalities are labeled palliative, is sorely lacking.
Ongoing national data collection efforts include little information to describe the quality of care of dying persons and their families. An occasional survey, the U.S. National Mortality Followback Survey (NMFBS), has collected information on access to care and functional status but not on important domains that are central to the quality of care of the dying. A redesigned NMFBS could collect information on key domains to describe the quality of care for cancer patients who died based on the perspective of the bereaved family member. Currently, there are no plans for further iterations of the NMFBS, however.
Quality indicators are needed for two main purposes: accountability (external use by regulators, health care purchasers, or consumers) and quality improvement (internal use for the purpose of monitoring or continuous quality improvement). The same types of indicators may serve both purposes, but the indicators may also be different. At this early stage in development, there is a strong evidence base to support the development of quality indicators for pain management for the purpose of accountability. However, demonstration programs will be needed before pain management indicators can be implemented nationally, and more basic research is needed to develop indicators for managing other common symptoms (e.g., emotional distress and depression, fatigue, gastrointestinal symptoms). An important aspect of demonstration and validation is monitoring for potential unintended consequences (e.g., patients are sedated contrary to their preferences to improve accountability statistics).
Besides the domain of symptom management, four other domains should be considered for early development and implementation of accountability measures: (1) patient satisfaction, (2) shared decisionmaking, (3) coordination, and (4) continuity of care. In each of these domains, indicators must validly represent the perceptions of the dying person and family members. This means investing in new survey methods that are patient centered and include questions that get at unmet needs, which has not always been the norm.
Shared decisionmaking has been increasingly recognized as a key aspect throughout the continuum of care. While the focus of research has been on resuscitation decisions, the most important decision for the majority of