Attention to care for dying Americans is capturing the interest of policy-makers, health care professionals, patients and the general public.[1,2,3] In addition, demographic trends toward larger numbers of elderly with longer life expectancies are reinforcing a new national health policy concern with end-of-life care. Demonstration projects to improve care for dying Americans have produced many successes in recent years across the country. In response, new palliative care programs that complement traditional hospice care are emerging in a variety of settings, and changes in health policy are being proposed that will encourage the concurrent provision of palliative care and curative care.
While initiatives such as those funded by The Robert Wood Johnson Foundation and the United Hospital Fund's Hospital Palliative Care Initiative are contributing to a greater understanding of issues around quality of care and access to end-of-life care, there is less progress toward predicting and estimating the costs of new initiatives and interventions. At the same time, accurate cost data are critical to policy-makers, who are often faced with balancing trade-offs between access, quality and cost, and for health care administrators and providers who are frequently asked to justify programs to funding sources.
Understanding costs is imperative as costs may in part determine which interventions are widely disseminated and promoted. But the complexities of costs, different accounting systems and even different cost definitions have become obstacles to cost analysis of new projects and cost comparisons across programs. Few studies document the costs and cost effectiveness of palliative and end-of-life care programs[6,7] or the impact of serious illness on patients' families. Yet cost pressures in the current health care environment present a compelling reason for accounting for the costs of care during the last phase of life. Studies of Medicare data show that a large percentage of an individual's total lifetime cost of care is consumed within the last year or two of life.[9,10,11,12,13] And patients who are informed about the benefits of palliative care, including attention to pain and symptom management, comfort and quality of life, are asking for a higher standard of care that includes palliative care.
The lack of sound and consistent cost accounting methods has impeded attempts at answering fundamental questions, such as:
Recognizing the critical need for answers to these questions, for more accurate cost measures and consistent methods for evaluating innovative end-of-life programs, Promoting Excellence in End-of-Life Care, a national program of The Robert Wood Johnson Foundation, formed the Cost Accounting Peer Workgroup. Convened in the fall of 2000, the diverse group of economists, clinicians, health policy researchers and program managers was charged with identifying accurate and meaningful methods of measuring end-of-life health care resource use and costs. Workgroup members identified specific guidelines, cost methodologies and measurement tools for analyzing costs of end-of-life care, and developed the recommendations put forth in this report for resolving problems and issues in health care cost accounting through the end of life.
These recommendations are addressed to individuals and organizations involved with or providing end-of-life care: program developers who are designing cost-effective interventions; agencies and institutions developing new, innovative projects or modifying existing programs; foundations, professional associations, and state and local partnerships who are working to improve end-of-life care for dying Americans; and professionals involved with performing and providing support for cost analyses.
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.