Improving the Quality of Long-Term Care

Gooloo S. Wunderlich and Peter O. Kohler, Editors

Committee on Improving Quality in Long-Term Care

Division of Health Care Services

INSTITUTE OF MEDICINE

NATIONAL ACADEMY PRESS
Washington, D.C.



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Improving the Quality of Long-Term Care Improving the Quality of Long-Term Care Gooloo S. Wunderlich and Peter O. Kohler, Editors Committee on Improving Quality in Long-Term Care Division of Health Care Services INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C.

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Improving the Quality of Long-Term Care NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, DC 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. Support for this project was provided by the Robert Wood Johnson Foundation, the Archstone Fund, Irvine Health Foundation, Department of Veterans Affairs, and Health Care Financing Administration. The views presented in this report are those of the Institute of Medicine Committee on Improving Quality in Long-Term Care and are not necessarily those of the funding agencies. Library of Congress Cataloging-in-Publication Data Institute of Medicine (U.S.). Committee on Improving Quality in Long-Term Care, Improving the quality of long-term care / Gooloo S. Wunderlich and Peter Kohler, editors ; Committee on Improving Quality in Long-Term Care, Division of Health Care Services, Institute of Medicine. p. ; cm. Includes bibliographical references and index. ISBN 0-309-06498-8 1. Long-term care facilites—Quality control. 2. Long-term care of the sick—Quality control. 3. Quality assurance. 4. Nursing homes—Quality control. I. Wunderlich, Gooloo S. II. Kohler, Peter O., 1938-III. Title [DNLM: 1. Long-Term Care—United States. 2. Outcome and Process Assessment (Health Care)—United States. 3. Quality Assurance, Health Care—United States. W 84.7 I587 20001] RA997 .I57 2001 362.1′6′0685—dc21 00-067864 Additional copies of this report are available for sale from the National Academy Press , 2101 Constitution Avenue, N.W., Box 285, Washington, D.C. 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP's home page at www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at www.iom.edu. Copyright 2001 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

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Improving the Quality of Long-Term Care “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE Shaping the Future for Health

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Improving the Quality of Long-Term Care THE NATIONAL ACADEMIES National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. William A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy's purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. William A. Wulf are chairman and vice chairman, respectively, of the National Research Council.

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Improving the Quality of Long-Term Care COMMITTEE ON IMPROVING QUALITY IN LONG-TERM CARE PETER O. KOHLER (Chair), President, Oregon Health Sciences University RICHARD DELLA PENNA, Regional Elder Care Coordinator, Southern California Permanente Group, Kaiser Permanente PENNY HOLLANDER FELDMAN, Director, Center for Home Care Policy and Research, Vice President, Research and Evaluation, Visiting Nurse Service of New York JANET GEORGE, Former Vice President, Quality Improvement, Manor Care, Inc., Gaithersburg, Maryland CHARLENE A. HARRINGTON, Department of Social and Behavior Sciences, University of California ROSALIE A. KANE, Director, National LTC Resource Center, University of Minnesota VINCE MOR, Director, Center for Gerontology and Health Care Research, Brown University VIVIAN OMAGBEMI, Program Manager, Health and Human Services, Aging and Disability Services, Montgomery County, Maryland JAMES PERRIN, Associate Professor of Pediatrics, Harvard Medical School, Director, Division of General Pediatrics, and Director, MGH Center for Child and Adolescent Health Policy, Massachusetts General Hospital for Children, Boston LAURIE E. POWERS, Associate Professor and Co-Director of the Center on Self-Determination, Oregon Health Sciences University ELLEN REAP, Vice President, Senior Living Services, Adventist Health Care, Rockville, Maryland JOHN F. SCHNELLE, UCLA/Jewish Home Borun Center, Sepulvada VA Hospital, Reseda, California PAUL M. SCHYVE, Senior Vice President, Joint Commission on Accreditation of Healthcare Organizations, Oakbrook Terrace, Illinois ERIC TANGALOS, Professor of Medicine and Chair, Division of Community Internal Medicine, Mayo Clinic, Rochester, Minnesota ARTHUR Y. WEBB, President and CEO, Village Care of New York/Village Center for Care, Inc. JOSHUA M. WIENER, Principle Research Associate, The Urban Institute, Washington, D.C. KEREN BROWN WILSON, Former President and CEO, Assisted Living Concepts, Inc., Portland, Oregon

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Improving the Quality of Long-Term Care BOARD ON HEALTH CARE SERVICES INSTITUTE OF MEDICINE DON E. DETMER (Chair), Professor of Medical Education in Health Evaluation Sciences, University of Virginia BARBARA J. McNEIL (Vice Chair), Ridley Watts Professor, Department of Health Care Policy, Harvard Medical School LINDA AIKEN, The Claire Mo Fagin Leadership Professor of Nursing and Professor of Sociology, and Director of the Center for Health Outcomes and Policy Research, University of Pennsylvania STUART H. ALTMAN, Sol C. Chaikin Professor of National Health Policy, The Florence Heller Graduate School for Social Policy, Brandeis University HARRIS BERMAN, Chairman and Chief Executive Officer, Tufts Health Plan, Waltham, Massachusetts BRIAN BILES, Chair and Professor, Department of Health Services Management and Policy, The George Washington University, Washington, D.C. CHRISTINE CASSEL, Chairman, Henry L. Schwarz Department of Geriatrics and Adult Development, Mount Sinai Medical Center, New York City PAUL D. CLAYTON, Medical Informaticist, Intermountain Health Care, Salt Lake City, Utah PAUL F. GRINER, Vice President and Director, Center for the Assessment and Management of Change in Academic Medicine, Association of American Medical Colleges, Washington, D.C. RUBY P. HEARN, Senior Vice President, Robert Wood Johnson Foundation, Princeton, New Jersey PETER BARTON HUTT, Partner, Covington and Burling, Washington, D.C. ROBERT L. JOHNSON, Professor of Pediatrics and Clinical Psychiatry and Director of Adolescent and Young Adult Medicine, University of Medicine and Dentistry of New Jersey, New Jersey Medical School JACQUELINE KOSECOFF, President and Co-Chief Executive Officer, Protocare, Santa Monica, California SHEILA T. LEATHERMAN, Founder, The Center for Health Care Policy and Evaluation and Executive Vice President, United Health Group, Minneapolis, Minnesota UWE E. REINHARDT, James Madison Professor of Political Economy and Professor of Economics and Public Affairs, Princeton University SHOSHANNA SOFAER, Robert P. Luciano Professor of Health Care Policy, School of Public Affairs, Baruch College GAIL L. WARDEN, President and Chief Executive Officer, Henry Ford Health System, Detroit, Michigan JANET M. CORRIGAN, Director, Board on Health Care Services, IOM

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Improving the Quality of Long-Term Care Acknowledgments The Institute of Medicine (IOM) Committee on Improving Quality in Long-Term Care acknowledges with appreciation the many persons and organizations, not all of whom can be individually listed, who contributed to the success of the study. The primary support for this study was provided by the Robert Wood Johnson Foundation. Generous support was also provided by the Archstone Foundation, Irvine Health Foundation, Department of Veterans Affairs, and Health Care Financing Administration. Many individuals shared unselfishly with the committee the results of their work and background information from their organizations. The committee appreciates the organizations and individuals that presented testimony at a public hearing. These individuals are listed in Appendix A. During the course of the study the committee held meetings at which experts made thoughtful presentations on various aspects of the committee 's mandate. The presenters are listed in Appendix A; their contribution of time and knowledge is appreciated. We are grateful to the authors of the commissioned papers prepared for the study. Their names and the subjects of their papers are listed in Chapter 1. The papers were used by staff and committee to guide them in drafting the report. A number of people within IOM provided support and assistance to the study committee. The committee acknowledges with gratitude their contributions. Marilyn Field served as study director until May 1999. Many other staff assisted her and the committee at various times and in

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Improving the Quality of Long-Term Care various capacities. Kay Harris and later Jennifer Cangco (since March 2000) helped keep our budget in order. Claudia Carl managed the logistics of the report review process, and Mike Edington shepherded the report through the editing and production process. Sally Stanfield at the National Academy Press was supportive as always. We also acknowledge Janet Corrigan, Director, Division of Health Care Services, for her support in a difficult time by providing staff from her division to complete the study. We are grateful to Nicole Amado and Kathleen Nolan for their enormous efforts in staffing the study through its completion. They cheerfully labored over 30 pages of references correcting them and making the citations and references consistent and the text accurate, developing the charts and tables in the report, and reviewing and editing the report drafts for accuracy and style under very tight deadlines. We appreciate Nicole's meticulous work formatting the manuscript for prepublication release. Finally we would like to thank Gooloo Wunderlich for the enormous contribution she made to this study. Gooloo's professionalism, knowledge, and extraordinary commitment were critical to resolving many policy and technical issues and completing the study.

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Improving the Quality of Long-Term Care Reviewers The report was reviewed by individuals chosen for their diverse perspectives and technical expertise in accordance with procedures approved by the National Research Council's Report Review Committee. The purpose of this independent review is to provide candid and critical comments to assist the authors and the Institute of Medicine in making the published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The content of the review comments and the draft manuscript remain confidential to protect the integrity of the deliberative process. The committee wishes to thank the following individuals for their participation in the report review process: Floyd Bloom, Chairman, Department of Neuropharmacology, The Scripps Research Institute, La Jolla, California Robert Butler, President and Chief Executive Officer, International Longevity Center-USA, Ltd., New York City Karen Davis, President, The Commonwealth Fund, New York City Toby Edelman, Attorney, National Senior Citizens Law Center, Washington, D.C. Catherine Hawes, Senior Research Scientist, Myers Research Institute, Menorah Park Center for the Aging, Beachwood, Ohio Susan Hughes, Professor, Health Research and Policy Centers, University of Illinois at Chicago

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Improving the Quality of Long-Term Care Mathey Mezey, Director, The John A. Hartford Foundation Institute for the Advancement of Geriatric Nursing Practice, New York University Robert J. Newcomer, Professor and Chair, Department of Social and Behavioral Sciences, University of California at San Francisco Joe Ouslander, Co-Director, The Southeast Center for Excellence in Geriatric Medicine, Emory Clinic at Wesley Woods, Atlanta, Georgia David R. Zimmerman, Director, Center for Health Systems Research and Analysis, University of Wisconsin Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Frank Sloan, Professor, Duke University, appointed by the Institute of Medicine, and Mary Jane Osborn, Professor and Head, Department of Microbiology, University of Connecticut Health Center, appointed by the NRC's Report Review committee, who were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Improving the Quality of Long-Term Care Contents     EXECUTIVE SUMMARY   1  1   INTRODUCTION   21      Long-Term Care Needs,   22      The IOM Study,   25      Basic Concepts and Definitions,   27      Scope and Limitations,   34  2   PROFILE OF LONG-TERM CARE   36      Characteristics of Long-Term Care Users,   38      Providers of Long-Term Care,   41      Financing Long-Term Care,   62      Coordination of Long-Term Care Services,   69      Conclusion,   72  3   STATE OF QUALITY OF LONG-TERM CARE   73      Measurement of Quality of Care,   74      Current State of Quality of Care,   76      Conclusion,   108  4   INFORMATION SYSTEMS FOR MONITORING QUALITY   110      On-Line Survey and Certification Assessment Reporting System,   112

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Improving the Quality of Long-Term Care      The Resident Assessment Instrument and the Minimum Data Set for Nursing Homes,   115      Outcome and Assessment Information Set for Home Health Care,   120      Challenges in Using Assessment Data,   122      Assessment and Quality Monitoring Instruments for Other Settings,   124      Incorporating Consumer Perspectives in Measurement of Quality,   127      Measurement Considerations for Children and Young Adults,   132      Conclusion,   134  5   IMPROVING QUALITY THROUGH EXTERNAL OVERSIGHT   135      Central Role of Government,   136      Basic Standards of Quality,   140      Residential Care Facilities,   163      Home Health Agencies,   169      Home Care and Related Services,   173      The Role of Advocacy,   174      Accreditation,   178      Conclusion,   179  6   STRENGTHENING THE CAREGIVING WORK FORCE   180      Nursing Homes,   182      Education and Training of Staff in Nursing Homes,   196      Residential Care Settings,   202      Home Health Agency Staff,   205      Home Care,   209      Education and Training Recommendations,   210      Labor Force Issues,   211      Conclusion,   218  7   BUILDING ORGANIZATIONAL CAPACITY   220      Recent Initiatives to Improve Caregiving Capacity in Long-Term Care,   220      From Rules, Data, and Guidelines to Effective Practice,   221      Quality Management Systems,   222      Organizational Capacity to Translate Knowledge into Practice,   223      Identifying Effective Interventions,   227      Care Process Implementation and Improvement,   228

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Improving the Quality of Long-Term Care      Measurement Issues,   231      Improving Organizational Capacity,   233      Conclusion,   234  8   REIMBURSING TO IMPROVE QUALITY OF CARE   235      Reimbursement and Quality,   236      Limited Nursing Home Bed Supply and Quality of Care,   244      Conclusion,   246  9   CLOSING REMARKS   248     REFERENCES   253     APPENDIXES    A   Committee Meetings and Presenters of Testimony,   283  B   Separate Dissenting Opinions,   287     ACRONYMS   295     BIOGRAPHICAL SKETCHES OF COMMITTEE MEMBERS   299     INDEX   307

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Improving the Quality of Long-Term Care Tables and Figures TABLES  2.1   Demographic Characteristics of Long-Term Care Users Aged 18–64 and Aged 65 and Older Living in the Community and in Nursing Homes: United States, 1994 and 1996,   39  2.2   Number of Long-Term Care Facilities and Beds: United States, 1992 and 1998,   43  2.3   Number and Percent Distribution of Nursing Homes, Beds, and Residents, by Facility Characteristics: United States, 1997,   44  2.4   Number and Percent Distribution of Certified Home Health Agencies and People Served, by Agency Characteristics: United States, 1996,   52  2.5   Total Medicaid Personal Care Services and 1915(c) Home and Community-Based Services Waivers: United States, 1997–1998,   56  2.6   Number and Percent of Selected Categories of Occupations Employed in Selected Long-Term Care Settings and in Hospitals: United States, 1998,   61  2.7   Expenditures and Source of Funds for Nursing Home and Home Health Care: United States, 1997,   64  2.8   Medicaid Payments, by Type of Service and Category of Beneficiary: United States, 1997,   66

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Improving the Quality of Long-Term Care  5.1   Average Number of Deficiencies per Certified Facility and Percent of Facilities with No Deficiencies, by State: United States, 1992 –1998,   146  5.2   Level of Deficiencies, Based on Scope and Severity of Substandard Care, and the Remedy Categories Available to States for Each Level of Deficiency,   155  6.1   Nursing Staff Levels per Resident Day, by Facility Type and Region for Nursing Homes: United States, 1998,   185  6.2   Distribution of Combined Nursing Hours per Resident Day in All Certified Nursing Facilities: United States, 1998,   186  6.3   Comparison of Average Nursing Hours per Resident Day for OSCAR Data, HCFA Time Studies, and Time Proposed by Experts,   187 FIGURES  2.1   Distribution of assisted living facilities by bed size: United States, 1998,   48  2.2   Percent distribution of ownership of home health and hospice agencies: United States, 1996,   53  2.3   Percent of patients receiving home health care services by type of service: United States, 1996,   53  2.4   Percent of patients receiving home health care services by service provider: United States, 1996,   54  3.1   Top 10 deficiencies of nursing facilities and percent of facilities with the deficiency cited: United States, 1998,   78  4.1   Proposed classification scheme for measuring a person's perspective about his/her quality of medical care,   129  5.1   Average number of deficiencies and percent of facilities without deficiencies: United States, 1991–1998,   145  5.2   Surveyor evaluations of the scope and severity of deficiencies, as a percentage of total deficiencies, cited in all nursing facilities: United States, 1996, 1997, and 1998,   157  6.1   Mean staffing hours per resident day for nursing facilities in the United States surveyed in calendar year 1998,   184  6.2   Average nursing hours per resident day in all certified nursing facilities: United States, 1991–1998,   188

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