. "Appendix J Commissioned Paper: Palliative Care/End-of-Life Measures--Sydney Dy and Joanne Lynn." Performance Measurement: Accelerating Improvement (Pathways to Quality Health Care Series). Washington, DC: The National Academies Press, 2006.
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Performance Measurement: Accelerating Improvement
decedents older than 15 years of age, as well as data on a number of measures in nursing homes, including 12 measures for pain, advance directive use, do not resuscitate orders, and feeding tubes. Several of these are summarized in Table J-1.
After-Death Bereaved Family Interview
This is a set of measures developed for an interview with a family member after a patient’s death (Teno et al., 2001; Teno, 2004). The measures arose from a review of professional guidelines and a series of focus groups of bereaved family members. Versions are available for different settings of care, and a national study has demonstrated feasibility and differences by the type of care provided. Growing evidence also provides a baseline for benchmarking. Unlike most other satisfaction measures, ceiling effects do not limit its utility. The instrument measures quality across various domains, reflecting the priorities of the patients’ family members. The response rate was acceptable (58 percent), the instruments are in the public domain, and various researchers are using them in a variety of settings. The developers require users to contribute to a database intended to aid organizations in benchmarking their data. Measures are summarized in Table J-1 under “satisfaction” and include: physical comfort and emotional support; shared decisionmaking; treating dying person with respect; attending to the emotional needs of the family; and coordinating care.
National Hospice and Palliative Care Organization National Hospice Data Set (NDS)
This industry wide, voluntary data collection includes five outcome categories: comfortable dying (comfort 48 hours after admission); self-determined life closure (unwanted hospitalizations and resuscitations); safe dying (caregiver confidence in providing safe care); effective grieving (emotional support); and family evaluation of hospice care (willingness to recommend hospice care). The last three categories are obtained from the NHPCO Family Satisfaction Survey (Connor et al., 2004). The NHPCO Web site includes a comprehensive summary of the numerators, denominators, and measures that were considered and pilot-tested in the development of these measures, as well as the protocols for the current measures (Ryndes et al., 2000). The final measures are in Table J-1.
Assessing Care of Vulnerable Elders (ACOVE) Quality of Care Assessment System
The ACOVE project developed quality indicators relevant to the comprehensive care of vulnerable elders, including outpatient, hospital, and