What Can We Measure with Current Nationally Collected Data? What Do We Want to Be Able to Measure in the Future?

The ultimate goal is a national system that measures the quality of care for people with cancer, from diagnosis through cure, long-term survival, or death. Good care (1) is based on scientifically sound evidence, (2) incorporates informed patients’ preferences, (3) provides access to appropriate services including high-quality clinical trials, (4) coordinates services across multiple segments of the health care “system,” and (5) is compassionate, attending to both the physical and the psychological needs of the patient and family.

Reliable indicators of quality can be powerful motivators for health care providers at all levels to improve the quality of their care. The development of quality indicators for end-of-life care remains at an early stage. At this point, there are two relevant questions: (1) for which domains is there either empirical or normative evidence to support quality indicators for the purpose of accountability; and (2) are there reliable and valid measures in existing data sets?

There is both normative and empirical evidence of the importance of pain management, something that is entirely under the control of health care systems. While the evidence is not as strong as for pain management, satisfaction also could be measured for purposes of public accountability. The evidence that health care institutions can improve satisfaction with hospice interventions is very strong (Greer and Mor, 1986; Hanson et al., 1997; Kane et al., 1984).

There is strong normative evidence based on both guidelines and court rulings that attest to the importance of shared decisionmaking (i.e., decisions regarding treatment choices that are based on informed patient preferences if the patient desires a role in decisionmaking). One last domain for which measures could be developed is coordination and continuity of medical care. Recurrent concerns in focus groups are that medical care is fragmented, that a physician often is not in charge, and that health care providers give conflicting information about treatment plans. Unlike pain and satisfaction, the conceptual framework and measurement tools for coordination and continuity of care are in need of further development.

Future Directions:

Measures of pain management, shared decisionmaking, coordination and continuity of care, and patient or family perspectives of the quality of care (i.e., satisfaction) must be developed, validated, and benchmarked. These measures have to be tested for validity and responsiveness in demonstration programs to assess the quality of care for persons dying from cancer.

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