Nursing homes are often the final residence for many people. Studies have estimated that as many as 20 to 25 percent of deaths due to chronic illness in the U.S. occur in nursing homes. In recognition of the trend of increasing utilization of nursing homes as a setting for the end of life, and the opportunities and challenges for end-of-life care in nursing homes, in July 2004, Commonwealth Medicine (a division of the UMass Medical School) awarded an internal grant to the study team to develop a set of indicators that can be used to assess and evaluate the appropriateness of end-of-life care for residents of nursing homes in Massachusetts. The indicators and the results of the analysis are a basis from which future research can be conducted, and from which quality improvement programs can be initiated. This report presents the project’s results.

The project was guided by an advisory group of researchers, nursing home administrators, directors of nursing, geriatricians, advocates, and policy makers. First, a comprehensive literature review was conducted to inform the project. Second, a set of indicators were developed within seven domains of end of life care: 1) structure and processes of care; 2) physical and emotional aspects of care; 3) advanced care planning; 4) ethical and legal aspects of care; 5) aggressive care near death; 6) family satisfaction; and 7) provider continuity, skill, and satisfaction. Third, the indicators were prioritized by the advisory group using a structured prioritization process in order to determine which indicators had the most relevance to assessing end-of-life care in the nursing home setting. Fourth, baseline data were collected for a small set of indicators. Data were collected from Massachusetts Medicaid claims data and a family survey.

A total of 44 indicators were developed in the seven domains. The indicators within each domain were prioritized and the results of the structured prioritization process are provided in the body of the report. Baseline data were collected for five of the indicators: death in hospital; overall hospice use; length of stay on hospice; total Medicaid resource use at the end of life; and family satisfaction.

This project sets forth a slate of indicators that can be used by nursing homes, coalitions, community groups, state agencies, and researchers to evaluate the quality of end-of-life care in nursing homes. With long histories of providing care to this vulnerable population, nursing homes can be well-positioned in the future to provide symptom management, advance care planning support, appropriate care to the imminently dying, and emotional support to staff and other residents. However, nursing homes face many challenges to providing high-quality end-of-life care. With continuing attention on the strengths of nursing homes and the needs of dying residents, improvements in the processes of care and the policy environment to support high-quality end-of-life care are possible. Moreover, the indicators presented in this report can provide the critical tools in evaluating the success of future interventions to improve the end-of-life care for nursing home residents.