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Meeting the Challenge: Twelve Recommendations for Improving End-of-Life Care in Managed CarePlease cite as: Download the complete pdf version. You will need to have the free Adobe Acrobat Reader installed to view this.) Prepared under a grant from The Robert Wood Johnson Foundation by the Center for Applied Ethics and Professional Practice Education Development Center, Inc., Newton, MA Principal Investigator:Mildred Z. Solomon, Ed.D. Senior Research Associates: Anna Romer, Ed.D. Task Force Members:
AcknowledgmentsOur thanks to Lewis Sandy, M.D., and Paul Jellinek of the Robert Wood Johnson Foundation for their early support of our vision, and to Rosemary Gibson, our program officer at the foundation, for her ongoing guidance. We are very grateful to many colleagues who read earlier versions of this report and willingly discussed the ideas with us, as well as those with whom we consulted on specific issues: Thomas A. Ault, M.S.A., Principal at Health Policy Alternatives in Washington, D.C., Carol Blackford, policy analyst at the Health Care Financing Administration, Susan Block, M.D., of the Dana Farber Cancer Institute, Brigham and Women's Hospital, and Harvard Medical School, Melinda Beeuwkes Buntin, Ph.D. candidate in Health Policy at Harvard University, Robert Buxbaum, M.D., from Harvard Vanguard Medical Associates, Sally Coberly, Ph.D., Director of Public Policy at the Washington Business Group on Health, Stephen R. Connor, Ph.D., Vice President of the National Hospice Organization, Alan Fleischman, M.D., Senior Vice President of the New York Academy of Medicine, Geoffrey Froner, formerly founder and Executive Director of the Health Outreach Team, San Francisco, California, Gail Gazelle, M.D., from Harvard Vanguard Medical Associates, Amber Jones, President and CEO of the New York State Hospice Association, Dorothea Musgrave and Tom Saltz, policy analysts at the Health Care Financing Administration, Stephen Connor, of the National Hospice Organization, Myrl Weinberg, President of the National Health Council and Convener, Workplace Task Force, Last Acts, and Connie Zuckerman, J.D., Associate Director for the Center for Ethics in Medicine at Beth Israel Medical Center, formerly Project Director of the United Hospital Fund's Hospital Palliative Care Initiative in New York City. We are also grateful to our colleagues at the Center for Applied Ethics and Professional Practice at Education Development Center, Inc., where this report was prepared, for their contributions to our thinking: Karen Heller, Ph.D., Molly Lynn Watt, M.A., and Judith A. Spross, Ph.D. (cand.), R.N., F.A.A.N. Stacy Piszcz and Tim McIntire provided helpful administrative support. Thanks to Jennifer Roscoe for production coordination, Kelly Ferguson and Elena Palanzi for copyediting and proofreading, and Emily Osman for graphic design. Carlene Raper (http://www.sover.net/~colorq/) graciously allowed us to adapt visual images from her quilt, "Home On a Hill," as artwork throughout the book. While the report was greatly enhanced by its many reviewers, the task force itself is responsible for the final recommendations and proposed action steps. Task force members reached consensus on these recommendations, and the views contained herein are those of the task force members, not of their affiliated organizations. About this ReportThis report presents recommendations of the National Task Force on End-of-Life Care in Managed Care, an interdisciplinary group of medical directors, nurses, and physicians from managed care organizations who have joined with national experts in palliative care, ethics, and quality improvement to consider the ways in which various features of managed care might be harnessed to improve the care of patients near the end of life and their families. Convened in June 1997, the task force met for a total of six days, surveyed all managed care organizations in the United States providing capitated services to Medicare enrollees in order to identify barriers and opportunities for improvement, and conducted interviews with those organizations that had already begun to experiment with new ways of delivering care to patients in the final phase of life. The recommendations and action steps presented in this report are primarily directed to:
It is the task force's hope that these recommendations will stimulate discussion, experimentation, and new palliative care policies and practices that can be implemented, both in managed care and in fee-for-service settings. In this report, an end-of-life condition is defined as a chronic, degenerative disease that will cause death, either imminently, or at some time in the foreseeable future. The end-of-life period is one in which medical and nursing care, psychological and social support for the patient and family, and adequate respite care can alter the quality of life, but can not reasonably be expected to cure the fundamental underlying disease or to arrest the progression toward death. We consider end-of-life care humane and effective when it supports the patientŐs interest in independence, alleviates pain, relieves suffering, counsels about advance directives, and provides specialized palliative services, such as respite care or special treatments necessary for specific diseases or conditions that arise near the end of life. Humane and effective end-of-life care also includes assessment of the psychological, social and financial needs of the patient and family, so that sensitive and appropriate plans for care can be developed. Such care is delivered through an individualized, multi-dimensional combination of health care, social services, and caregiver support. Humane and effective end-of-life care should at a minimum offer and fund a Medicare-equivalent hospice program but such financing is not in itself sufficient for insuring adequate end-of-life care. Humane and effective end-of-life care includes many services such as rehabilitation therapies or pain management, which are not unique to the care of persons near the end of life, but this report focuses specifically on the needs of patients close to death or living with a chronic, degenerative condition that will lead to death. Table of ContentsClick here for Executive Summary Chapter One: The Challenge and the Opportunity
Chapter Two: Task Force Recommendations
Chapter Three: Action Steps
Appendices
EndnotesFor free copies of this report, contact: Mildred Z. Solomon, Ed.D., Director |
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