cancer patients is the one to stop active treatment, but there is little research examining this decision.
There is strong support for the domains of pain (and other symptoms), shared decisionmaking, satisfaction, coordination, and continuity of care, but there is debate about which other domains are important in the care of the dying. Various conceptual models have been proposed to examine the quality of end-of-life care, emphasizing different domains. Research is now needed to examine the correlations among structures of the health care system, processes of care, and important outcomes to identify the most fruitful areas for developing new quality measures.
Two national data collection systems warrant consideration for the development of quality indicators: Medicare claims files and the Minimum Data Set (MDS). NCPB has recommended that hospice enrollment and length of stay be examined as quality indicators (IOM, 1999) From a national perspective, the only data set with that information is Medicare claims data. Other indicators based on administrative data have also been proposed (Wennberg, 1998). 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 (Teno, 2000a). In 1998, an estimated 10 percent of cancer patients died in a nursing home. The Health Care Financing Agency (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, the main concern is with applying quality indicators developed for populations where the goals of care are on restoring function to those who are dying. For example, the rates of dehydration and weight loss are now among the core quality indicators for nursing homes (HCFA, 2000). With increased scrutiny of these indicators, there is concern that unintended consequences for the dying include increased use of feeding tubes, which could be contrary to patient preferences.
At this time, health care providers usually apply the term “dying” to individuals in the last days of life, allowing little time for preparation or life closure. Given the inherent imprecision of predicting the day of death, we need to move back on the continuum and identify people with “life-limiting illness” or “serious, progressive illness,” which would imply a median survival of less than one year.
“Hope for the best, prepare for the worst” is not something we say to people dying of cancer. In one sense, it forces us to admit failure to a disease