. "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
prominent in any national set of quality measures, since such a high proportion of care occurs in patients with life-threatening illness and since deficiencies in quality may cause particular harm in patients with little time or reserve remaining to recover from adverse effects. A national measurement set must consider the unique priorities and challenges of palliative care patients, as many measures associated with improved outcomes in a healthy population may be inappropriate or even harmful in patients with serious illness and limited prognoses.
For the purposes of this paper, we will use the World Health Organization definition of palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (World Health Organization, 2002).
For our conceptual model, we will use the domains of the framework of the Toolkit of Instruments to Measure End of Life Care (Teno, 2000):
Pain and other symptoms
Emotional and cognitive symptoms
Survival time and aggressiveness of care
Advance care planning
Continuity of care
Grief and bereavement
Patient-centered reports and rankings (aka satisfaction) with the quality of care
Quality of life
For each domain, where appropriate, we have also organized measures into those applicable to assessment, management, and outcome. We have listed topics in this order in the text and Table J-1, and compared the results of our searches to these categories to determine where there are particular gaps in performance measurement for palliative care.
METHODS AND SOURCES
We limited our review to measurement sets particularly relevant to palliative care, as more general sets are under review in other parts of this project. We considered information from recent systematic reviews and consensus statements in palliative care, as well as previous reviews of quality indicators