Pioneer Programs in Palliative Care: Nine Case Studies October 2000 ( To see a complete list of Milbank reports, click here). Table of Contents Foreword The Authors Introduction Christine K. Cassel Balm of Gilead Center, Cooper Green Hospital F. Amos Bailey Palliative Care Program, Beth Israel Deaconess Medical Center/CareGroup Lachlan Forrow The Harry R. Horvitz Center for Palliative Medicine, The Cleveland Clinic Foundation Declan Walsh Massachusetts General Hospital Palliative Care Service J. Andrew Billings Palliative Care Program, Medical College of Virginia Campus of Virginia Commonwealth University Laurel J. Lyckholm, Patrick Coyne, and Thomas J. Smith Pain and Palliative Care Service, Memorial Sloan-Kettering Cancer Center Richard Payne and Kathleen M. Foley The Lilian and Benjamin Hertzberg Palliative Care Institute, Mount Sinai School of Medicine Diane E. Meier, Jane Morris, and R. Sean Morrison Palliative Care and Home Hospice Program, Northwestern Memorial Hospital Charles F. von Gunten Comprehensive Palliative Care Service, University of Pittsburgh–UPMC Robert Arnold Foreword In this report clinicians at nine hospitals describe how they and their colleagues established formal programs of palliative care. Clinicians and managers at each of these institutions negotiated innovative clinical and institutional arrangements and made effective use of the reimbursement policies of public and private payers. Each of these programs of palliative care is a product of the organizational culture of the institution in which it operates. The nine stories also have common themes. Christine K. Cassel, Professor and Chair of the Henry L. Schwartz Department of Geriatrics and Adult Development at Mount Sinai School of Medicine, who helped to initiate and lead the process that produced this report, describes lessons from the short history of these programs in her introduction. We share her opinion that the success of this report depends on whether it "encourages clinicians who are starting, or who hope to start, palliative care programs in their own institutions." The report is one result of an ongoing collaboration between two foundations that have similar missions and complementary operating styles. The Milbank Memorial Fund works with decision makers in the public and private sectors to develop better policy for the care of patients, the health of populations, and the organization, financing, and governance of health services. The Robert Wood Johnson Foundation (RWJF) has as its mission improving the health and health care of all Americans through funding for demonstration projects, training, educational and communications activities, policy analysis, and research. One of its goals is to improve care at the end of life; to that end, RWJF has funded the Center to Advance Palliative Care at the Mount Sinai School of Medicine in New York. The Center's purpose is to serve hospitals and health systems interested in developing palliative care programs at their institutions. The authors of the studies are identified below. G. Robert D'Antuono, Deputy Director of the Center to Advance Palliative Care, and Beth Demel and Grace Moon, both health policy analysts in the Henry L. Schwartz Department of Geriatrics and Adult Development, Mount Sinai School of Medicine, assisted in the preparation of these stories and in compiling the data that follows each of them. Daniel M. Fox President Milbank Memorial Fund Rosemary Gibson Senior Program Officer Robert Wood Johnson Foundation The Authors Robert Arnold, M.D. Leo H. Criep Professor of Patient Care Chief, Section of Medical Ethics and Palliative Care Division of General Internal Medicine University of Pittsburgh Pittsburgh, Pennsylvania F. Amos Bailey, M.D., F.A.C.P. Medical Director The Balm of Gilead Center Cooper Green Hospital Birmingham, Alabama J. Andrew Billings, M.D. Director Palliative Care Service Massachusetts General Hospital Boston, Massachusetts Patrick J. Coyne, R.N., M.S. Acting Director for Nursing Massey Cancer Center Medical College of Virginia Campus of Virginia Commonwealth University Richmond, Virginia Kathleen M. Foley, M.D. Member and Attending Neurologist Pain and Palliative Care Service Department of Neurology Memorial Sloan-Kettering Cancer Center New York, New York Lachlan Forrow, M.D. Director Palliative Care Programs Beth Israel Deaconess Medical Center Boston, Massachusetts Laurel J. Lyckholm, M.D. Director Fellowship Program and Palliative Care Education Medical College of Virginia Campus of Virginia Commonwealth University Richmond, Virginia Diane E. Meier, M.D. Director The Lilian and Benjamin Hertzberg Palliative Care Institute Mount Sinai School of Medicine New York, New York Jane Morris, R.N., M.S. Clinical Director The Lilian and Benjamin Hertzberg Palliative Care Institute Mount Sinai School of Medicine New York, New York R. Sean Morrison, M.D. Research Director The Lilian and Benjamin Hertzberg Palliative Care Institute Mount Sinai School of Medicine New York, New York Richard Payne, M.D. Member and Attending Neurologist Chief, Pain and Palliative Care Service Department of Neurology Memorial Sloan-Kettering Cancer Center New York, New York Thomas J. Smith, M.D. Medical Director Palliative Care Program Medical College of Virginia Campus of Virginia Commonwealth University Richmond, Virginia Charles F. von Gunten, M.D., Ph.D., F.A.C.P. Currently: Medical Director, Center for Palliative Studies, San Diego Hospice Associate Clinical Professor, School of Medicine, University of California, San Diego Formerly: Medical Director Palliative Care and Home Hospice Program Northwestern Memorial Hospital Northwestern University Medical School Chicago, Illinois Declan Walsh, M.Sc., F.A.C.P., F.R.C.P. (Edin) (1,2,3) Director Harry R. Horvitz Center for Palliative Medicine The Cleveland Clinic Foundation Cleveland, Ohio Introduction Christine K. Cassel These case studies are stories written by leaders, clinicians who became innovators when they saw the need for palliative care at their hospitals and devoted themselves to creating programs to meet that need. Committed to helping patients live and die without unnecessary suffering, these leaders sought to provide comprehensive care based on respect for patients' goals, preferences, and choices. Whether they were senior or junior faculty members, all the leaders overcame significant barriers to the development of palliative care within their hospitals. They found varied routes to success, reflecting diverse institutional cultures and differing levels of financial resources, including institutional support that ranged from small to moderate. These pioneers differ, as well, in clinical philosophies, personal styles, and methods of work. Sometimes their subspecialty or research prompted them to act; others were motivated by clinical work. Their personal experiences are an important part of these stories, and their distinctive voices have been preserved in editing the case studies for publication. The narratives exemplify the current debate that exists about the definition of "palliative care." Is it end-of-life care? Or is it broad and integrated physical, psychological, social, and spiritual care for patients with serious diseases that may be life-threatening? Most of the authors of these studies believe they should care for patients with advanced, incurable illnesses when aggressive treatment of pain and other symptoms may be needed. Several believe that palliation and cure are not mutually exclusive and that palliative care should be practiced during all stages of serious illness, even while aggressive curative treatment continues. The exact point at which a patient's palliative care should begin remains a subject of discussion. The authors' programs serve different groups of people and employ diverse clinical models appropriate for particular patient populations. Certain authors developed postacute care linked with hospice and home care. Others created palliative care units or consultation services within their hospitals or have combined both models to provide a continuum of care throughout serious illnesses. As the charts of financial information show, there is considerable variation in the financing of hospital-based palliative care programs and in institutions' methods of collecting and reporting data. Programs may be supported almost entirely by their clinical revenue or may rely heavily on philanthropy and foundation grants. The charts do not represent all financial activity. They may contain general revenue sources, including research funding, or may break down clinical revenue by payers, depending on a program's ability to report data in a given format. There is no consensus about how to measure the quality of palliative care. But essential characteristics of hospital-based programs do emerge. 1. Palliative care programs should be constructed around an interdisciplinary team, including at least a doctor, nurse, social worker, pharmacist, and chaplain. 2. Patients, families, and physicians should discuss goals and preferences and should plan the care together. 3. Palliative care should reach patients throughout the hospital, should encourage collaboration across clinical and administrative boundaries, and should foster respect for patients' and families' wishes. 4. Palliative care programs should provide bereavement services for families and staff members. The impetus for commissioning these case studies was the growing national concern about care at the end of life. There is evidence that acute care settings,