Pergamon Titles of Related Interest Fagence CITIZEN PARTICIPATION IN PLANNING Gartner et al. CONSUMER EDUCATION IN THE HUMAN SERVICES: A Social Policy Book Mushkin/Dunlop HEALTH: WHAT IS IT WORTH? Measures of Health Benefits Weinstein HEALTH IN THE CITY: Environmental and Behavioral Influences Related Journals* CHILDREN & YOUTH SERVICES REVIEW EVALUATION AND PROGRAM PLANNING INTERNATIONAL JOURNAL OF BEHAVIORAL SOCIAL WORK AND ABSTRACTS JOURNAL OF PSYCHIATRIC TREATMENT & EVALUATION SOCIO-ECONOMIC PLANNING SERVICES *Free specimen copies available upon request. PERGAMON ON SOCIAL POLICY POLICY STUDIES Citizens and Health Care Participation and Planning for Social Change Edited by Barry Checkoway Pergamon Press NEW YORK · OXFORD · TORONTO · SYDNEY · PARIS · FRANKFURT Pergamon Press Offices: U.S.A. Pergamon Press Inc.. Maxwell House. Fairview Park. Elmsford. New York 10523. U.S.A. U.K. Pergamon Press Ltd.. Headington Hill Hall. Oxford 0X3 OBW. England CANADA Pergamon Press Canada Ltd.. Suite 104. 150 Consumers Road. Willowdale, Ontario M2J 1P9. Canada AUSTRALIA Pergamon Press (Aust.) Pty. Ltd.. P.O. Box 544. Potts Point. NSW 2011. Australia FRANCE Pergamon Press SARL. 24 rue des Ecoles. 75240 Paris. Cedex 05. France FEDERAL REPUBLIC Pergamon Press GmbH. Hammerweg 6. Postfach 1305. OF GERMANY 6242 Kronberg/Taunus. Federal Republic of Germany Copyright © 1981 Pergamon Press Inc. Library of Congress Cataloging in Publication Data Main entry under title: Citizens and health care. (Pergamon policy studies on social policy) Bibliography: p. Includes index. 1. Health planning-United States-citizen participation. 2. Medical policy-United States-Citizen participation. I. Checkoway, Barry. II,. Series. [DNLM: 1. Consumer participation. 2. Health planning-United States. 3. Delivery of health care-United States. WA 540 AA1 C68] RA395.A3C57 1981 362.1 81.7326 ISBN 0-08-027192-8 AACR2 All Rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means: electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or otherwise, without permission in writing from the publishers. Printed in the United States of America Preface Recent years have witnessed a rising public demand for more participation in planning and political affairs. The movement is said to have originated in the 1960s with the organized protests of minorities, and then to have spread throughout society. As a result, the once-held image of Americans as being unconcerned and passive has given way under a virtual stampede of public interest groups, consumer coalitions, neighborhood associations, and other citizen organizations independent of government. Scarcely a day passes that the media fails to report some organized action by citizens to strengthen their active participation in the decisions that affect their lives. Growing from a widely shared belief that government is overly influenced by corporate or private interests, rather than those of the broader public, citizen groups of all types have increased in number and strength. Legislative bodies and government agencies have re- sponded with official citizen participation programs. In the last decade alone there have been dozens of hearings in Congress focusing on the need for greater public participation, and participation has become part of every major federal program. State and local governments have developed and put into practice a wide range of participation structures, and the outpouring of citizen advisory councils, information programs, and public hearings has been impressive. Although some analysts contend that these programs can also be used to contain citizen demands and to channel citizens in ways ac- ceptable to officials, the common belief is that these programs aim to provide a means for citizens to exercise power in public decisions. Federal legislation has also provided an opportunity for health care to "catch up" with these expanding participation movements. Recognizing the serious health care problems IX X PREFACE facing the nation, Congress in 1974 enacted a law which created a network of health planning agencies to ensure equal access to quality health care at a reasonable cost· The law emphasized citizen participation by requiring representative consumer majorities on agency governing boards, and pre- scribed a range of methods to assure participatory democracy in a field long dominated by medical providers· Despite serious obstacles and organized opposition, some agencies have sought citizen participation with fervor. Health planning has also provided an organizing vehicle for some citizens and citizen groups to apply skills to increase public awareness, form alliances and support networks, and mobilize resources for change. These planning agencies and citizen groups signal new directions and raise questions for health planning and participation in the 1980s: What are the problems facing citizens seeking change in the health care system? What initiatives are needed to increase participation in planning, increase the knowledge of citizens, and increase the capacity of citizen organizations? What are the prospects for the future? This book addresses these questions and some of the important issues they raise. The focus is on health care, but the aim is to use health care as a basis to understand broader problems and prospects and to define issues in terms of their wider significance. The book thus seeks to provide understanding of the factors influencing health care at the same time as it sheds light on planning and participation elsewhere in American society. It is a pleasure to acknowledge some of those who have contributed to this book. The Western Massachusetts Health Planning Council provided a site for a symposium for several authors and other scholars and practitioners to share ideas, learn from one another, and build a sense of mutual support. Many of our minds are still rushing to catch up with ideas left circling the room in Massachusetts. The Center for Health Studies at Yale University was a source of assistance throughout the work. Theodore Marmor, perhaps more than he realized, gave the encouragement, advice, and support needed to produce the final manuscript. The Western Center for Health Planning was a principal sponsor of the project. The center was created to assist health planning agency staff and board members in the areas of plan development, plan implementation, legal services, and consumer education. The center has established an educational clearinghouse to provide information and ideas about consumer involvement. It was highly fortunate that the center would view this book as consistent with its mission, and would provide the funding support needed to complete the work. Several individuals provided valuable and appreciated assistance to help make this book a reality. Erna Olaf son PREFACE xi Hellerstein and Lotte Gottschlich, whose Health Law Project Library Bulletin served as an original forum for many of the ideas developed here, both provided excellent editorial as- sistance under time constraints. Among others who commented on earlier drafts, or who otherwise deserve special mention, are Helen Darling, Judith Lieberman, Michael Doyle, Henry Foley, Mark Kleiman, Steven Meister, Thomas O'Rourke, Carl Patton, Iris Schneider, and Herbert Semmel· Margie, Amy, and Laura Checkoway gave patience, understanding, and love while this book was being completed. The authors of this book represent a remarkable range of individuals, each highly experienced, deeply committed, and anxious to communicate. They have written this book on a moving train, fueled by the fire of social concern. They know that change is needed, and they write as if it were possible. 1 Citizens and Health Care in Perspective: An Introduction Barry Checkoway During the years that physicians, hospitals, and other medical providers have controlled health care policy and planning, medical costs have skyrocketed, but problems of quality and accessibility have remained. In recent years, national health expenditures have risen at alarming rates, and prices of medical services have increased faster than those of most other consumer services. Total national health expenditures rose from $12 billion in 1950 to over $225 billion in 1980, at a rate that surpassed the increase in the Gross National Product, the growth of expenditures for education and defense, and even the total federal, state, and local government increase in expenditures for all nonhealth purposes. Medical fees are increasing faster than at any time in history, at a rate con- sistently higher than that of other components of the Consumer Price Index (Council on Wage and Price Stability 1978; Free- land, Calat, and Schendler 1980; Gibson 1980). Health expenses consume ever larger shares of income, so that people are forced to spend a significant part of their income to obtain health care. The average expenditure on health care was $943 per person in 1979, representing more than ten times the level for 1950. Most people do not realize how much they are paying for health care because their payments are indirect or hidden in health insurance premiums, salary deductions for group health plans, and taxes for federal health programs. Despite these payments, the savings of a middle-income family could still be wiped out by a single serious illness. Some of the increase in medical costs can be attributed to expansive medical technology. The progress of medical science is often measured by advances in technology, such as kidney machines, new surgical procedures to replace arteries, organ transplants, heart valves, and other innovations. Some 1 2 CITIZENS AND HEALTH CARE modern techniques and equipment do effect changes in general health, although to a lesser degree than environmental, occupational, nutritional, and sociopolitical conditions do (Dubos 1959; Freymann 1977; Knowles 1977; McKeown 1965, 1976; McKinlay & McKinlay 1977; Sigerist 1941). In spite of these limited benefits, hospitals tend to compete with each other for expensive high technology equipment in order to treat patients, and attract and keep medical staff. Much of this equipment may be unnecessary, already available nearby, or easily shared with other hospitals. For example, although there may be five other CAT scanners within a few miles, four more than already needed, hospital trustees may still decide to spend half a million dollars to buy the equipment, and then pass the costs along to consumers (Judd & McEwen 1977). Excess hospital capacity also increases medical costs. The Institute of Medicine (1976) estimated that about ten percent of the hospital beds in the United States are unneces- sary. The Public Citizen Health Research Group calculated that excess beds cost about $5 billion to build and another $2 billion annually to maintain (Ensminger 1975). It costs one- half to two-thirds as much to maintain an empty bed as it does to maintain an occupied one. It is now several years since Roemer (1961; and Shain & Roemer 1959) concluded that "hos- pital beds that are built tend to be used." The oversupply of beds can create pressures that lead to unnecessary admissions and needlessly prolonged stays in hospitals. Indeed, un- necessary or inappropriate use of services is itself yet another factor in the increased costs to consumers (McClure 1976). While increased spending on medical technology and hospital capacity has made some American medicine among the best in the world, these expenditures have not always im- proved the general health of the population. On the contrary, American health status is not nearly as good as it could or should be. Federal government statistics indicate that the total health status of Americans ranks lower than that of citizens in many other nations. Fourteen nations have lower infant mortality rates than American, and in 17 countries life expectancy at birth is longer than in the United States (De- partment of Health, Education and Welfare 1979a, 1980). Amer- ica is the richest of the industrialized nations, but these vast resources are misapplied to buy expensive medical equipment rather than to develop programs that would ensure improved health status for all. In the local health area (population 783,000) where I live, for example, there are six CAT scan- ners (1:130,000 persons) with more being planned; in the entire nation of Sweden (9»320,000) there are only nine CAT scanners (1:924,000), and yet Sweden has higher health status by most major measures than the United States. AN INTRODUCTION 3 Increased expenditures have also done little to overcome the severe geographical and economic imbalances in the Amer- ican distribution of health and medical care. At a time when the population trend toward urbanization is reversing, and when those who move to nonmetropolitan areas tend to be older, unhealthier, and needier of medical care than those who move to the cities, nonmetropolitan health resources are often inadequate. There are more than twice the number of phy- sicians per population in metropolitan than in nonmetropolitan areas, and the ratio in rural areas is worsening annually. Some such areas are virtual medical wastelands, where phy- sician and medical facility shortages fail to meet even minimal subsistance needs (Cambridge Research Institute 1976; De- partment of Health, Education,and Welfare 1979a, 1980; Hadley 1980). Within metropolitan areas themselves, the best health institutions and services are often inaccessible to poor people and to those without insurance. Fully one-third of the na- tion^ population with income below the poverty line has no public or private medical insurance coverage, and this low- income, uninsured group includes a disproportionate number of minorities. One-third of the poor are not covered by Medi- caid, and it is increasingly difficult to qualify for this federal program. At the same time, fiscal cutbacks are forcing the closure of many public hospitals, which are often the only alternative source of care for the poor. Although hospitals built with federal funds are legally required to provide a certain amount of uncompensated care for Medicaid patients and the poor, these requirements have never been fully enforced. It is not news that low-income people in general have worse health care than people with higher incomes, that a large proportion of the poor are limited in their usual activity because of chronic, treatable conditions, and that black infant mortality is almost twice that of white infants. At its worst, the medical system operates as a form of triage, selecting quality care for those with insurance or money, and leaving high morbidity and mortality for those unable to pay the price (Department of Health, Education, and Welfare 1977, 1979a, 1980; de Vise 1973; Fuchs 1974). There is even evidence that some modern medicine itself threatens health. As J. Warren Salmon and Howard Berliner show in this volume, issues of high cost, poor quality, uneven access, depersonalization, and disease orientation have brought medical practice under increasing criticism in this country. Some analysts have documented the increase of iatrogenesis; that is, illness caused by doctors and medical institutions (Carlson 1975; Illich 1976). Unnecessary surgery has be- come increasingly common (Crile 1978; House Subcommittee on Oversight and Investigation 1978; Lewis 1969). Many medicines are addictive or have harmful side effects (Sartwell 4 CITIZENS AND HEALTH CARE 1974)· And yet the consumer has become more and more dependent on this often iatrogenic medical system as the sole source of health care. This has happened even though major improvements in modern health have not come about primarily from curative medicine but from other sources· At present, however, our society allots relatively few resources to health promotion, disease prevention, health education, nutrition, and alternative health movements (Department of Health, Education, and Welfare 1979b; Jonas 1978; Knowles 1977). The total clinical, social, and cultural costs of this neglect are incal- culable. Health consumers and their advocates were greatly en- couraged by the passage of P.L. 93-641, the National Health Planning and Resources Development Act of 1974· Here was an act aimed to improve the health of residents of local health areas; to increase accessibility, acceptability, continuity, and quality of services; to prevent unnecessary duplication of health resources; and to restrain increases in the cost of providing services. (1) The act set national health priorities beginning with "the provision of primary care services for medically underserved populations, especially those which are located in rural or economically depressed areas. "(2) Federal health planning presumably would provide a more compre- hensive, more rational approach, directed toward "equal access to quality care at a reasonable cost. "(3) P.L. 93-641 also created a network of health planning agencies at the foundation of which was the local community. A national council advises the U.S. Department of Health and Human Services (HHS); HHS designates state and local agen- cies; state agencies prepare and coordinate statewide plans; and Health Systems Agencies (HSA) are responsible for health planning and development in local areas. Each HSA is gov- erned by a board of consumers and providers and administered by a staff of professionals. Each is authorized to formulate local health plans and priorities, to review and approve or disapprove proposals for federal funding, to assess the ap- propriateness of services provided by hospitals and other health institutions, and to help develop neighborhood health centers, health maintenance organizations, and health education programs. The law promised "planning with teeth" to identify and meet community needs with more authority and more attention to consumer interests than was the case under earlier health planning (Bureau of Health Planning 1980). The program combined and redirected health planning and development efforts of the Hill-Burton Program of 1946, which aimed to utilize health facilities1 construction funds in such a way as to fill unmet needs; the Regional Medical Program of 1965, which placed a primary focus on health resources development; and