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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 competencies and with regard for appropriate balance.
This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.
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.
Support for this project was provided by the Administration on Aging, U.S. Department of Health and Human Services, under Grant No. 90-AR-0129. The views presented are those of the Institute of Medicine Committee on the Quality of Long-Term-Care Services in Home and Community-Based Settings: Defining the Issues and are not necessarily those of the funding organization.
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Copyright 1996 by the National Academy of Sciences. All rights reserved.
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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 image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held in the Staatlichemuseen in Berlin.
COMMITTEE ON THE QUALITY OF LONG-TERM-CARE SERVICES IN HOME AND COMMUNITY-BASED SETTINGS: DEFINING THE ISSUES
ALAN R. NELSON,* Chair, Executive Vice President,
American Society of Internal Medicine, Washington, D.C.
MICHAEL J. DEMMER,
Executive Vice President,
Kensington Management Group, Inc., Golden Valley, Minnesota
CARROLL L. ESTES, * Professor and Director,
Institute for Health and Aging, University of California at San Francisco, San Francisco, California
CHRISTINE GIANOPOULOS, Director,
Maine Bureau of Elder and Adult Services, Augusta, Maine
ROSALIE A. KANE, Professor,
School of Public Health, University of Minnesota, Minneapolis, Minnesota
DENNIS S. O'LEARY, * President,
Joint Commission on Accreditation of Healthcare Organizations, Oakbrook Terrace, Illinois
JAMES M. PERRIN, Associate Professor of Pediatrics,
Director of Ambulatory Care Programs and General Pediatrics,
Massachusetts General Hospital, Boston, Massachusetts
RUBY VAN CROFT, Director of Community Relations,
Visiting Nurses Association, and President,
Capital Home Health Association, Washington, D.C.
KATHLEEN LOHR, Director,
Division of Health Care Services
JILL FEASLEY, Program Officer
Member, Institute of Medicine
Most people want to live in places where they are comfortable and where they can be surrounded by familiar objects, friends, and family. Older and disabled individuals are certainly no different. Now, thanks to advances in medical care and innovative service delivery systems, this preference to remain in our own homes and residences is often a real possibility.
Concerns exist, however, about the quality of the care that is provided in these settings. Countless allegations are heard about home care workers who steal from the frail, elderly clients for whom they are working. Newspaper stories detail accounts of negligence in residential care facilities geared toward serving individuals with Alzheimer 's disease or of managed care organizations that refuse to cover the medical services needed for a disabled child to remain at home. At the same time, we know that an estimated 10 million Americans of all ages currently need some type of home and community-based long-term care (LTC) and that they—and we—can fairly safely assume that not all of the care being provided is of substandard quality.
Complicating this picture is the rapid transformation of how such services are paid for and delivered. As this report is being written, Congress is considering major changes to Medicare and Medicaid—the two largest payers of home and community-based LTC. State programs, which have traditionally been the most innovative in their use of home and community-based services, are being reexamined and redesigned to address concerns about rising costs and growing populations. Private industry is expanding rapidly to meet the increasing demand for both home and residential care. What efforts should and can be taken to assure that this evolving world of LTC continues to improve the quality of the services it provides?
One thing is clear: Achieving quality care cannot be considered without also taking costs into account. Regulating and enforcing quality standards have financial implications for both providers and purchasers. At a time when budgets are being slashed, there is a temptation to divert money from quality assurance and improvement activities in order to underwrite basic services. At some level, it may not matter whether services are of high quality if one cannot afford them in the first place. The challenge for policymakers and the public will be to support both activities—cost containment and quality assurance —because this committee believes that poor quality care affects everyone: consumers, their families, care providers, and the communities in which they live.
This report briefly examines the ways in which consumers and their families, payers, and providers try to ensure that the care received in home and community-based settings is of the highest quality possible. It sets out the conceptual framework and provisional design for a much larger Institute of Medicine study, which would explore these issues in greater detail and recommend ways to enhance current quality assurance and improvement systems.
The motivation behind this proposed study is a desire to help inform both the public and its designated policymakers about the nature of the problems this nation is confronting in providing quality care to its older and disabled citizens, and, in so doing, to provide objective assessments of the feasibility of a range of possible responses. This committee hopes that the recommendations that emerge from the larger study will be of practical use to a wide range of audiences — consumers, caregivers, regulators, providers, and purchasers—and that the strategies developed or refined as a result of the study will encourage all parties to continue to be as innovative as possible in their quest for quality.
Alan R. Nelson, M.D.
Special words of thanks are due to several individuals to whom the committee and staff are particularly indebted. Jo Harris-Wehling, formerly of the Institute of Medicine (IOM) and now with the Johns Hopkins Geriatric Center, began working on this project in 1990; she was responsible for successfully shepherding the initial study proposal through the IOM's internal approval procedures and the Administration on Aging's funding process. Karl Yordy, former director of the IOM 's Division of Health Care Services, also worked on this project in the early 1990s and has continued to provide sage guidance and historical perspective to the study staff. Don Tiller and Richard Julian have provided unswerving support to the project, often despite having to juggle numerous other responsibilities. Michael Anderson, of the National Academy of Sciences' Meetings Office, went above and beyond his assigned duty to help produce the video shown at the committee 's workshop. Finally, Kathy Lohr, current director of the Division of Health Care Services, provided a great deal of leadership and support during this planning activity.
The committee is especially grateful to the following individuals who agreed to share their personal experiences and thoughts about the quality of home and community-based long-term care through video interviews: Lynne Aktar, June Brown, Warren Hardy, Erica Nash, Lenora Pennypacker, William Stokoe, and Etelka Wade. The video provided moving testimony to these consumers' courage, persistence, and delightful senses of humor.