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

  • Functional status

  • Survival time and aggressiveness of care

  • Advance care planning

  • Continuity of care

  • Spirituality

  • Grief and bereavement

  • Patient-centered reports and rankings (aka satisfaction) with the quality of care

  • Caregiver well-being

  • 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



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