. "3 Quality of Care and Quality Indicators for End-of-Life Cancer Care: Hope for the Best, Yet Prepare for the Worst." Improving Palliative Care for Cancer. Washington, DC: The National Academies Press, 2001.
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Improving Palliative Care for Cancer
that promotes informed patient involvement in decisionmaking and attends to physical comfort and emotional support.
In the past century, the United States has seen a striking transformation in how people die. In contrast to the late 1800s, people now die of chronic, progressive, and eventually fatal illness such as cancer, which they may live with for years or decades. Faced with caring for an older and chronically ill population, public policy and research efforts have focused on examining not only survival but also quality of life and health care costs.
In a New England Journal of Medicine editorial, accountability was identified as the “third revolution in medical care,” following on the heels of health care expansion and cost containment (Relman, 1988). Yet, to date, little attention has been given to how best we can measure the quality of end-of-life care. Despite the universality of death, few generalizable research studies (Addington Hall and McCarthy, 1995; Emanuel et al., 2000; Greer et al., 1986; Lynn et al., 1997; Seale et al., 1997; Wolfe et al., 2000) have examined the experiences of dying persons. At this early stage, cancer represents an ideal disease trajectory on which to initiate work measuring quality of care of the dying for the purposes of accountability (i.e., external release of data to the purchaser, regulator, or consumer in order to compare and contrast quality between health care institutions), quality improvement, and research.
Cancer, in contrast to other leading causes of death (e.g., congestive heart failure, chronic obstructive lung disease, stroke), has a more predictable functional trajectory prior to death with less uncertainty in prognosis (Fox et al., 1999; Teno et al., 2001). Some cancers have an authoritative scientific evidence base to guide treatment decisions. Health care providers now have access to evidence-based treatment algorithms, including some for palliative treatment (ASCO, 1997). For these reasons, cancer is a good place to start designing and implementing a national system to measure the quality of end-of-life care.
What Is an Ideal System for Monitoring Quality of Care for Cancer?
The NCPB has outlined the characteristics of an ideal system for measuring quality of care for cancer patients. In order to meet these goals, we will need appropriate measurement tools for research to develop the scientific evidence base, for quality improvement, and for public accountability (Table 3-1), all of which may be different.
The areas of emphasis and desired characteristics vary for measurement tools intended for different purposes (Table 3-2). For example, the intended audience for quality improvement (QI) measures is the institutional and QI staff, whereas the intended audience for public accountability is the health care purchaser and consumer. Given the intended audiences and implica-