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Improving Palliative Care for Cancer
TABLE 1-2 Status of Quality Indicator Development for End-of-Life Care
Frequency and severity of pain from Minimum Data Set
Proposed indicators require validation, but can be measured for all hospitalized cancer patients
Major limitation: captures only health care provider perspective
Patient and family perspective on pain management
Instruments available (e.g., from American Pain Society or Toolkit of Instruments to Measure End-of-Life Care)
Measures of patient satisfaction, based on patient or surrogate responses
New instruments include some questions relevant to people dying from cancer
New instruments have undergone reliability and validity testing. Additional questions are specific for cancer (e.g., whether patients are informed of recommended treatments, access to high-quality clinical trials) and incorporation into ongoing data collection efforts
Questions from Toolkit of Instruments to Measure End-of-Life Care
Reliability and validity testing completed
Examination of responsiveness not complete
Coordination and Continuity of Care
No indicators yet available
Shared decisionmaking has been increasingly recognized as a key aspect throughout the continuum of care. Although the focus of research has been on resuscitation decisions, the most important decision for the majority of cancer patients is the one to stop active treatment, but there is little research that examines this decision.
Beyond those mentioned, there is debate over which other domains are important in the care of the dying. Various conceptual models have been proposed to examine the quality of end-of-life care, with different emphases. Research is now needed to examine the correlations among structures of the health care system, processes of care, and important outcomes to identify the most fruitful areas for developing new quality measures.