directions for taking pain medications does provide an important target for improving and enhancing the quality of care. Moreover, patient-centered reports and preference-based questions have strong face validity with health care providers. In the future, surveys have to rely on all three methodologies to capture the consumer perspective on quality of care at the end of life. (See Figure 3-5 for examples of questions from a bereaved family member survey to examine the quality of care for dying persons and their families.)

TABLE 3-4 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 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

New instruments include some questions relevant to people dying from cancer

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


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