TABLE 1-2 Status of Quality Indicator Development for End-of-Life Care


Proposed Indicators



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

Shared Decisionmaking

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.

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