Further development should include evaluating which elements of assessment are most associated with outcomes; consensus on defining the denominator; and evaluating evidence of applicability across settings. In addition, since few information systems can currently provide this data, the number of medical records to be reviewed will need to be defined.
Numerator: Patients who have a change in their pain management program, or the number with a change that is within defined quality parameters.
Denominator: Palliative care patients, as described above under assessment, or patients with certain diagnoses or severity of illness associated with particular diagnoses, with uncontrolled pain (e.g., patients with pain score of 5 or greater on a 10-point scale).
Settings: as above.
Further development, in addition to those mentioned for assessment, should include refining the definition of uncontrolled pain and the definition of a change in pain management. Ideally, future research and development of data assessment tools and systems would allow longitudinal measurement of patients’ experience, especially with new pain syndromes or worsening of chronic pain. Leaders in palliative care claim that rates of moderate and severe physical pain should diminish to a very small fraction of at-risk patients in systems offering good care; however, demonstrations of that claim in any sizable populations are remarkably rare or absent.
A number of measures deserve mention for potential inclusion in the future, including the After-Death Bereaved Family Interview and many other elements of pain management and care planning, including the preferred place of death. The After-Death Interview has been carefully developed and rigorously tested in a national population, shows differences by the type of care provided, is not limited by ceiling effects, and includes measures in a number of different domains. Although the Interview addresses surrogates’ perceptions of care, which may have variable correlation with patients’ perceptions, surrogates’ perspectives are valued independently in palliative care and their experience may affect the future bereavement and health. The Interview would require further development for use as a measure, including adaptation to a paper survey, short-