accountability. Equally important are indicators for “quality improvement,” which takes in a range of purposes from institutional audits to identify opportunities to improve care, to indicators designed to examine the impact of small interventions tested through multiple “Plan, Do, Study, and Act” cycles. The measures used for different purposes differ, but are related, and fall along a continuum. Measures developed for quality improvement with the correct psychometric properties may evolve into accountability measures.
There are currently no quality indicators in national use that deal specifically with palliative care or other end-of-life issues. However, the degree to which indicators may be in use for QI or other institutional purposes is not known. The author contacted six NCI-designated Comprehensive Cancer Centers with strong palliative care interests to determine the extent of their current systematic efforts to examine quality of care of the dying. Only one of the centers is collecting any such information, using the NHO family satisfaction survey for people who died in an affiliated hospice program and ongoing satisfaction surveys to examine the quality of care for dying patients discharged home from its hospital. Two other centers did monitor symptoms as a “fifth vital sign.”
Comprehensive Cancer Centers should set the benchmarks for excellence in cancer care, and this includes validating and reporting on quality indicators.
In Ensuring Quality Cancer Care (IOM, 1999), the National Cancer Policy Board recommended development of a core set of quality measures for the continuum of cancer care, including care at the end of life. The elements of quality care identified were an “agreed upon care plan that outlines the goals of care, policies to ensure full disclosure of information with appropriate treatment options, a mechanism to coordinate services, psychosocial support services, and compassionate care.” There are gaps all along the continuum of care, but nowhere more severe than for end-of-life care, for which the following are needed: the development of new measurement tools; research to both validate measurement tools and examine their real-world application in terms of responsiveness and burden; and if these measurement tools are to be used for accountability, a consensus-building process between the public, the government, and the health care industry.
The importance of guidelines has also been recognized by the NCPB and is especially true for examining quality of end-of-life care. A key question for advance care planning to formulate end-of-life contingency plans