Ongoing national data collection efforts include little information to describe the quality of care of dying persons and their families. An occasional survey, the National Mortality Followback Survey (NMFBS), has collected information on access to care and functional status, but not on important domains that are central to the quality of care of the dying. A redesigned NMFBS could collect information on key domains to describe the quality of care for patients who died based on the perspective of the bereaved family member. There are no current plans for further iterations of the NMFBS, however.

Two national data collection systems warrant consideration for development of quality indicators: Medicare claims files and the Nursing Home Minimum Data Set (MDS). The NCPB has recommended previously that hospice enrollment and length of stay be examined as quality indicators (IOM, 1999). From a national perspective, the only source of that information is Medicare claims data. Other indicators based on administrative data have also been proposed. Work to develop and validate these indicators using claims data is still to be done.

The second national data collection effort is the MDS, which routinely collects extensive information on every nursing home resident in the United States. Nursing homes increasingly are providing end-of-life care for frail and older Americans. In 1998, an estimated 10 percent of cancer patients died in a nursing home. The Health Care Financing Administration (HCFA) is now embarking on a national program of examining nursing home quality performance. There are important lessons to be learned from the MDS, including concerns about the institutional response burden in implementing data collection and the potential for unintended consequences. In the nursing home setting, a concern is that quality indicators have been developed for the majority of nursing home residents (who are not dying imminently) where the main goals of care are to restore function, yet the same indicators will be applied to those who are dying. For example, the rates of dehydration and weight loss are now among the core quality indicators for nursing homes. With increased scrutiny of these indicators, there is concern that unintended consequences for the dying might include increased use of feeding tubes, which could be contrary to patient preferences.

Disparities in End-of-Life Care for Minority Groups

Cancer statistics for certain minority groups in the United States reveal substantial inequalities in health outcomes. African Americans represent the largest minority population, and the one for which there is the best documentation of unequal access to, and quality of, care. Cancer incidence and mortality rates are significantly higher, and survival rates significantly lower, for African Americans than for whites in the United States. African

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