Previous research on health care transitions has focused on hospital transitions. In this study, we attempted to define patterns of transition among persons with advanced cognitive impairment who were in a nursing home 120 days before death. For patients with dementia, which is a progressive, fatal illness, health care providers and families are faced with making decisions about transitions that should reflect a weighing of the goals of care and the risks and benefits of a transition. A total of 96% of family members report that comfort is the primary goal of care for their relatives with advanced dementia.14
Yet as we found, the pattern of transitions among nursing home residents with advanced cognitive impairment is often inconsistent with that goal. From a societal perspective, these transitions are costly, and many are potentially avoidable through advance care planning or treatment of infections in the nursing home. In our study, 81% of the nursing home residents with advanced cognitive impairment did not have a burdensome transition. Yet nearly one in five residents had one or more such transitions, with rates in some states as high as 37.5%. High rates of burdensome transition were also associated with several markers of a poor quality of care.
Jencks and colleagues28
reported that one in five Medicare patients who were discharged from an acute care hospital in 2003–2004 were readmitted within 30 days. However, the investigators did not address the issue of whether the initial hospitalization was appropriate. We specifically focused on a cohort of functionally dependent persons with advanced cognitive impairment, representing a population of patients for whom hospitalization may be avoidable and, in the majority of instances, is inconsistent with a goal of comfort. Since pneumonia and other infections are expected in end-stage dementia, recurrent hospitalizations for these conditions are potentially avoidable. A randomized, controlled trial of pneumonia treatment among nursing home residents showed that the majority of residents with pneumonia can be treated in the nursing home without a significant effect on mortality, level of functioning, or health-related quality of life.9
These results are supported by observational studies.8,11
Treatment of dehydration with hypodermoclysis can be safely provided in the nursing home.29
Hospitalizations for both pneumonia and urinary tract infections are considered avoidable in the nursing home setting.30
The Evercare model of capitated payments and the assignment of a nurse practitioner to oversee the care of frail nursing home residents were shown to result in fewer hospitalizations and saved $103,000 per nurse practitioner in hospital costs.12,13
The savings with the Evercare model were achieved with survival and quality outcomes that were similar to those with conventional care.
It is reassuring that 81% of nursing home residents had no burdensome transitions, which suggests that generally appropriate decisions are being made to avoid such transitions. But there are opportunities for improvement. The rate of burdensome transition increased by 2 percentage points during the 8 years of observation (from 17.4% in 2000 to 19.6% in 2007), and there was striking variation among states in the rate of burdensome transition. A potential explanation is the current financial incentives under Medicare and Medicaid. Hospitalization generally qualifies a nursing home resident with Medicaid coverage to receive Medicare payments for skilled services, which reimburse the nursing home at a higher rate. In addition, states’ Medicaid payment rates and bed-holding policies that pay nursing homes to keep a bed open for hospitalized residents are associated with increased rates of hospitalization of nursing home residents.31–33
These financial incentives probably result in health care transitions that contribute not only to excessive costs but also to a poorer quality of end-of-life care, as reflected in increased rates of feeding-tube insertion, time in an ICU, late hospice referral, and a stage IV decubitus ulcer before death.
Our study has several limitations. With the exception of advance directives and orders to forgo life-sustaining treatment, as noted in the MDS, we have no information regarding patients’ preferences. However, two studies, by Barnato et. al.34
and Teno et. al.,35
showed that patients’ preferences explain little about the regional variation in health care utilization at the end of life. In addition, we can report the associations between nursing home residence in a region with an increased rate of burdensome transition and markers of a poor quality of care at the end of life, but we cannot make causal inferences. It is possible that attributes of these regions other than the rate of burdensome transition may explain the observed lower quality of end-of-life care received by nursing home residents with advanced cognitive impairment. Research is needed to understand the multiple factors that contribute to the observed regional variation in rates of burdensome transition. Finally, we relied on a retrospective design that identified a cohort of nursing home residents who had advanced cognitive impairment and substantial functional impairment before death. Important concerns about bias with the use of a retrospective study design have been noted.36
We attempted to minimize the bias by limiting the cohort to nursing home residents with a uniform diagnosis of advanced cognitive impairment and substantial functional impairment and by observing them for a short period of time before death. Despite these limitations, the patterns of transitions that we observed in a national sample of Medicare beneficiaries with advanced cognitive impairment suggest an important target for improvement.
For persons with advanced cognitive impairment, nursing homes are the predominant locus of care. Despite evidence that many infections can be treated in nursing homes without a significant effect on patient outcomes, the current financial incentives are aligned toward hospitalization. Evidence from demonstration programs suggests that rates of hospitalization can be reduced with improved survival and no diminution in the quality of care. Bundling of payment and development of integrated systems, as proposed by accountable care organizations,37,38
may improve the care of patients with advanced cognitive impairment by reducing avoidable hospitalizations and improving care planning. We suggest that the measurement of burdensome transitions can be used to monitor the quality of end-of-life care in health systems. However, it is unlikely that public reporting alone will solve the problem. Ultimately, a decline in burdensome transitions will come about through a combination of improved provider incentives and decision making that elicits and respects the choices of patients.