Table Of ContentPergamon 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
