. "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
Some of these domains can be examined in part with two national databases: the Minimum Data Set of Nursing Home Residents and Medicare claims files. The MDS is federally mandated and reports data from the Resident Assessment Instrument, which collects information on the presence, severity, and frequency of pain for nursing home residents at admissions, quarterly, and with changes in health status (Hawes et al., 1995; Morris et al., 1990). With computerized drug data, quality indicators can be formulated to examine the frequency and severity of pain and the degree to which pain is treated. Based on an examination of the MDS database available from five states, nearly one in four cancer patients with daily pain was not prescribed any analgesic (Bernabei et al., 1998). Although only about 10 percent of cancer patients die in a nursing home, they are often the most frail and vulnerable patients.
The MDS is a potentially useful tool for public accountability, but it has limitations. For one thing, the data are recorded by staff members, not by the patient, so reports of pain and other symptoms depend on the accuracy of proxy staff reporting. An indication that reporting may not be accurate, or at least not uniform, is the range of values found in nursing homes from 10 different states, which Teno and colleagues found to vary between 8 and 49 percent of patients reported as having daily pain (Teno, 2000b). This variation could reflect inadequate pain assessment, inconsistent pain management, or the different types of people cared for by a facility. A likely explanation is inadequate assessment, given the challenges of evaluating pain in this frail population, more than half of whom have moderate to extensive cognitive impairment.
Since July 1999, HCFA has identified a series of performance indicators that are examined based on the MDS. Experience with the use of the MDS indicators has yet to be evaluated, but there are important concerns. Specifically, the experience of nursing homes is increasingly revealing the importance of unintended consequences of applying quality indicators to populations in which they are not applicable.
For example, two of the proposed nursing home indicators focus on dehydration and weight loss. A quality indicator is composed of a numerator (e.g., those persons with pain) and a denominator (e.g., conscious persons in that nursing facility). For the dehydration and weight loss indicators, the denominator is everyone in the health care facility, including those who are dying. The potential unintended consequence is that nursing homes will increase the use of nasogastric tube feeding, IV hydration, and hospitalizations of dying individuals. The obvious and simplistic solution is to eliminate the dying patients from the denominator. However, identifying patients who are dying—particularly those dying from illnesses other than cancer—can be quite difficult given the limitations of prognostication and