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A grassroots movement in bioethics.

A Grassroots Movement IN BIOETHICS

Preface

In th spring of 1984 news was moving eastward about an innovative program under way in Oregon known as Oregon Health Decisions. By organizing participatory forums at the grassroots level throughout the state, the Oregon project seemed to bridge the gap between health care providers and consumer groups, and between experts and "ordinary" citizens.

Oddly enough, ethical concerns like the rights of the terminally ill and fair access to health care rather than economic interests formed the terrain upon which common ground was being sought. Could an inclusive, democratic process of citizen education and involvement move beyond the politics of special interest group horse-trading and logrolling? Could such a process achieve a greater sense of civic responsibility concerning complex matters of ethical principle and professional practice? The news from Oregon was encouraging.

With benefit of hindsight, one can see that a new dimension was about to emerge in health planning and policymaking in the United States. An element of broader civic participation was about to join the ongoing quest for some measure of social consensus on the basic goals and priorities of the health care system. The Community Health Decisions movement was about to be born.

That movement has attracted the support of several foundations during the past four years. The Prudential Foundation and the Robert Wood johnson Foundation have been the two major sources of support for these projects.

The Prudential Foundation intiated the program with its first round of community bioethics grants spanning 1985-87. In 1984, the Board of Trustees of The Prudential Foundation approved a two-year, $250,000 program to support bioethics decisionmaking in the community. In 1985 The Prudential Foundation and The Hastings Center began collaborating to design, monitor, and evalute Prudential's first community bioethics grant initiative. In response to a nationally distributed Request-For-Proposals, we received some forty project proposals from nonprofit organizations in thirty states. Among the applicants were numerous Health Systems Agencies (HSAs), hospitals, university-based research institutes, and a few citizens' groups that had been organized expressly to undertake a community bioethics effort. Contributions were made to: California Health Decisions, Hawaii Health Care, Culture and Social Values Project, Idaho "No Easy Choices" Project, Iowa/Illinois Health Policy and Bioethics in the Community Project, Maine Health Care Decisions, and Washington Health Choices. The Robert Wood Johnson Foundation followed The Prudential Foundation's lead and is currently funding projects in Colorado, New Jersey, Oregon, and Vermont.

In 1987, the Board of Trustees of The Prudential Foundation approved continuing support of the Community Health Decisions program with a $400,000 pledge. This effort will assist the projects in California, New Jersey, Oregon, and Vermont. This report makes note of the subsequent involvement of the Robert Wood Johnson Foundation and the continuation of The Prudential Foundation program. But it is based primarily on the experience of the six projects funded in The Prudential Foundation's initial leadership effort, on interviews conducted during site visits and on a review of written documents growing out of the projects.

The Community Health Decisions movement has benefited greatly from the advice and support of many people. Daniel Callahan, Director of The Hastings Center and Arthur Caplan, formerly of The Hastings Center and now Director of the University of Minnesota Bioethics Center have worked closely with me on this project since the Center's consultative relationship with The Prudential Foundation began. I would also like to thank all those with whom I met during my site visits for giving so generously of their time and hospitality. Special thanks are due to the leaders and directors of the various projects, including Joan Chatfield (Hawaii), Ralph Crawshaw (Oregon), Susanne Dade (Washington), Brian hines (Oregon), Ruth Lee (Iowa/Illinois), Mary Anne Saunders (Idaho), Ellen Severoni (California), and Judith Swazey (Maine).

The research upon which this report is based was made possible by support from The Prudential Foundation. And "support" in this case means far more than dollars and cents. William Brooks, Vice President for Corporate Social Responsibility at The Prudential and Mary O'Malley of The Prudential Foundation have been constant sources of advice and encouragement to those engaged in the community bioethics process throughout the country. Without Mr. Brooks's leadership in particular, the Community Health Decisions movement would never have advanced as far and as fast as it has. It was his initial vision that spurred the development of the program.

Finally, we were all saddened by the death of Professor Frederick Elliston of the University of Hawaii, architect and director of the Health Care, Culture, and Social Values project. Fred was an energetic and effective leader in the effort to enhance public understanding of ethical issues in health care. We are diminished by his loss.

The Community

Health Decisions Movement

In 1983 a grassroots citizen education group in Oregon began a series of public meetings to discuss the social and personal choices imposed by the new powers of modern medicine and the rising costs of the health care system. This was the beginning of Orego Health Decisions, an organization that aims to make health care delivery more congruent with community values and that has inspired similar projects in no less than then other states. In 1987 the Oregon state legislature made an explicit policy decision to direct limited state Medicaid funds away from costly heart and liver transplants in favor of prenatal and other forms of preventive health care. Oregon Health Decisions played an instrumental role in assuring that citizen opinion and community preference shaped legislative opinion in the formulation of that decision.

Many residents of Orange County, California, an affluent, politically conservative suburb of Los Angeles, were dismayed to learnin 1986 that an estimated 360,000 people, 16 percent of the county's population, were without health insurance and lacked access to needed medical care. This had been documented and called to public attention in meetings sponsored by California Health Decisions, one of the first organizations to pursue the experiment in citizen participation begun in Oregon. A few months later, in the wake of efforts by a special task force of California Health Decisions to call attention to the issue, the Orange County government decided to increase funds for prenatal care.

In 1986 the community health decisions project in Maine played a key role in helping to coordinate the programs of various state and private groups serving the health care needs of the elderly. . . In Hawaii a community health decisions group reached out across cultural and religious differences to inform citizens about their rights and responsibilities under the new state law governing the use of advance directives for terminal health care. . . In the Quad Cities region of Iowa and Illinois the community health decisions project sought to bring labor and corporate groups together to strike a balance between the conflicting values of health care cost containment and the right of individuals to select their own personal physician. In Idaho. . . in Washington state. . . in Colorado and Vermont and New Jersey--the same basic story repeats itself.

The foregoing vignettes are scenes from a drama that is now unfolding across America. This is the drama of the Community Health Decisions movement--an ongoing experiment in grassroots citizen participation, conducted with the pragmatic objective of reaching social consensus on basic principles that should govern the future of the health care system. In this growing movement, the American (small "d") democratic tradition is encountering the ethically difficult health decisions that lie ahead for each of us as individuals and for society as a whole.

Not surprisingly, community health decisions projects have sprung up at a time of widespread public concern about the future of the health care system. All Americans are affected by advances in medical technology, by institutional changes that alter access to health care services, and by rising medical costs. As science and technology expand medicine's power to save and to prolong life, they also open a Pandora's box of complex ethical issues for patients and their families, health care providers, insurers, the courts, and government policymakers.

Who should decide when the use of life-sustaining medical treatment should be forgone? On what basis should that decision be made? What balance should be struck between preventive medicine, acute care, and chronic, long-term care in what we as a nation spend on health? Does each person have a right to health care, and how can fair access to health care be guaranteed? How should scarce medical resources, like organs donated for transplantation, be rationed? Should age play a role in limiting the health care a person receives?

Such questions have become daily fare in the media and in discussions among health care providers, health insurers, consumer groups, and public officials. Even so, we are still far from reaching a public agreement on most of these issues. Profound religious and moral disagreements on these topics persist. And the march of modern medicine continues to raise exquisitely hard questions about justice and freedom, rights and duties, benefits and harms.

How can society move toward a reasonable consensus on bioethical issues? How can health care professionals and public officials faced with difficult choices and decisions obtain guidance? How can ordinary citizens make their voices heard and participate more effectively in setting health care priorities?

Across the country, the Community Health Decisions movement has been shaping and will shape the answers we as a society give to these questions. This movement brings discussion of bioethical issues out of the medical schools, the hospitals, the think tanks, and the government agencies, and into the broader community. It brings a cross-section of the citizenry together with health care professionals, state and local officials, consumer activists, and members of the academic world in neighborhood, regional, and statewide forums to grapple with the hard choices facing health care.

Activities and Objectives

Each of the projects in the Community Health Decisions movement has followed a similar pattern of programs and activities, often consciously modeled on the Oregon experience but also adapted to the particular social, cultural, and political circumstances of the host state or locality. Some projects view themselves primarily as vehicles for informing and educating the public on ethical issues in health care. Others combine their educational mission with activities designed to represent citizen opinion.

At the risk of glossing over some significant local differences, one can identify the common program and activities of the community health decisions projects. Each project has sponsored scores, if not hundreds of open community meetings in churches, community centers, service clubs--wherever the active civic life of urban neighborhoods and small town America still flourishes. Volunteer organizers and discussion leaders have helped to arrange, publicize, and guide these meetings. The projects have relied to a great extent on the cooperation of preexisting networks of health planners or voluntary health organizations in the state. Information collected from those who attend the meetings and minutes taken during the course of the discussions record the main concerns and value priorities that participants in the community health decisions process bring to bear on selected bioethical issues. Project organizers usually set the topics for those meetings so that a few issues can be discussed in depth over the course of two or three hours, aided by videotapes, hypothetical cases, and other printed handouts. Volunteer discussion group leaders are specially trained in bioethics and in group discussion techniques.

Typically, after about a year of small group meetings the project convenes a statewide citizens' health care parliament where delegates adopt numerous resolutions. They are then widely disseminated in a final project report. At this stage the project may hold another round of local meetings and forums, convene specialized citizens' task forces to study selected issues in more depth, and begin working toward another statewide parliament.

The mission of community health decisions projects is to stimulate a well-informed conversation where many voices are heard and all reasonable perspectives are given due consideration. It is important to note that the projects remain neutral on the controversial topics they bring before the public through community forums and other activities. Some may be skeptical about the possibility of achieving this kind of fairness and neutrality. The Community Health Decisions movement is proving the skeptics wrong. These projects are demonstrating that it is possible to provide forums for citizen education and dialogue without imposing hidden agendas on the participants, and withut trying to manipulate the outcome of the process. They are also demonstrating that it is possible for an organization to serve as a catalyst bringing together a coalition of diverse groups that are willing to search for some common ground. Without the neutrality and balance the projects have achieved they would not be able to provide this crucial--and otherwise largely neglected--mediating function.

In this sense community health decisions projects are indirect, rather than direct, agents of change in health decisions at all levels. At the most intimate, personal level individuals who participate in project forums may come to think about their own health decisions, beliefs, and values in new ways. They may come away with a better understanding of both their health care rights and responsibilities. Similarly, at the institutional level hospitals, nursing homes, and other health care facilities may find their own community outreach efforts enhanced by the effects of local health decisions projects in their area. (They may even undertake a series of community forums themselves, as the Goshen General Hospital in Indiana did with its Just Caring project.) Better informed health care consumers provide impetus for the review and improvement of institutional policies affecting quality of care and patients' rights. Finally, at the level of public policy community health decisions projects serve to ensure that the values and priorities of ordinary citizens are articulated, so that later they can be raised and considered in the democratic policy-making process.

In sum, community health decisions projects are educational undertakings in the broadest sense and on many levels. They not only inform but also enable responsible civic participation and thoughtful health care decisionmaking. They mediate among diverse perspectives, searching for accommodation and cooperation rather than advocating a particular set of policy proposals. This stance of neutrality and commitment to fair civic dialogue inform the mission statement and the operational philosophy of each of the community health decisions projects. These orientations also serve as the basis for several other, more specific objectives:

* Building a base of community support. These projects make concerted efforts to enlist the support and involvement of a broad cross-section of existing community organizations, health care providers, and concerned citizens. They attempt to coordinate their activities with organizations and officials currently responsible for health policy planning and health care delivery.

* Creating open forums for community discussion. The hallmark of the community health decisions projects is an ongoing series of public meetings where a range of bioethical and health policy decisions are discussed. These meetings are carefully planned and organized. Holding many meetings in many different locations usually ensures that a representative cross-section of the community takes part in the project.

One of the most noteworthy achievements of these projects is their ability to create forums where differing points of view can be heard in an atmosphere of constructive dialogue and mutual respect. Careful records of these deliberations have been maintained by project staff. In most cases, questionnaires have been used to gauge participants' opinions and preferences. Such surveys cannot claim rigorous scientific validity. But unlike most polls, they tend to reflect opinions that have been informed and shaped by participation in a prolonged and serious discussion of the issues. These results may indicate more reflective and deliberative views than those growing out of broader, randomly selected, but less participatory opinion surveys.

* Moving from enhanced understanding to constructive action. As these projects gain momentum they tend to move from building public awareness and consciousness raising to identifying widely held values and health care priorities. Ultimately, the participant opinion generated in public forums can be used to guide the content and agenda of the health policy debate in state legislatures and the broader political arena. (It should be noted, however, that legislation has been viewed by the projects as a remedy of last resort, to be turned to only when other forms of compromise and accommodation are not possible or cannot provide an adequate solution to the given problem.)

Most of the community health decisions projects have been active for no longer than three or four years--barely time enough for them to have begun the catalytic process of directing public opinion into health choices or legislative influence. Only a handful of public decisions (like those noted at the beginning of this report) can be linked directly to the actions of community health decisions projects. But these projects do look toward tangible change in health policy or health care delivery as a result of organized and increased citizen participation.

Community health decisions projects cut across the many boundaries and divisions of our diverse, pluralistic society. Every state, and many subareas within states, has its own special ethos, its own sense of how its needs and the character of its civic life are distinctive. Grassroots projects of this kind tend to bring these differences to the fore, and are naturally disposed to focus on local solutions to local problems. Yet, as those taking part in these projects are well aware, the economic and social forces now shaping our health care system are national, if not international in scope. Health care institutions and state and local policymakers increasingly respond to these broader forces and trends. Moreover, the ethical quandaries posed by health care are rooted in our common humanity and mortality; these know no geographical or cultural boundaries.

The challenge, and much of the fascination of these projects lies in their attempt to articulate community-based perspectives on moral and systemic issues that affect all communities. The pluralism of our society is often seen as an obstacle to creating a viable ethical and political consensus on health care. Taken as a whole, the basic, objective of the Community Health Decisions movement as it seems to be emerging in the 1980s is to make that pluralism a source of englightenment rather than confusion, an enabling rather than a disabling feature of our democratic way of life.

Project Snapshots

California Health Decisions. Based in suburban Orange County near Los Angeles, California Health Decisions has held over 250 community meetings involving some 6,000 Orange County residents since October 1985. These meetings have focused on such questions as the meaning of a right to health care, the allocation of scarce health care resources, and the use of life-prolonging medical treatment.

In September 1986 the project held the first of several health care parliaments, bringing together delegates who had taken part in the local meetings, community and business leaders, health professionals, and elected officials. Thirty-five recommendations were adopted by the parliament. These recommendations called for more equitable access to health care, bettery quality and more efficient allocation of health resources, protection of individual rights and autonomy, and health promotion and disease prevention. Several volunteer task forces are currently at work attempting to implement these recommendations.

California Health Decisions is rapidly becoming a statewide effort as spin-off projects get underway in Los Angeles, Sacramento, San Diego, and the San Francisco Bay area.

Hawaii Health Care, Culture, and Social Values Project. Health decisions pose special challenges in Hawaii, where an extremely diverse culture encompasses strong traditions among Hawaiians, Samoans, Japanese, Chinese, Koreans, and Filipinos. Based in Honolulu and sponsored by the Institute for Religion and Social Change, this project is particularly concerned with the ways in which bioethical issues present themselves in varying cultural and religious perspectives. Reaching each ethnic community poses different kinds of challenges and requires distinct outreach strategies.

From 1985 to 1987 the activities of the project centered around workshops held in neighborhood centers, churches, temples, seniors clubs, union halls, and cultural centers. Preworkshop consultation and planning with local community and religious leaders proved to be the key to a successful session. If the project remains active, selected issues will be identified for further study by volunteer task forces.

Idaho "No Easy Choices" Project. Base in Boise and sponsored by the Idaho Health Systems Agency, this project has had to reach a relatively small population (approximately 1 million) spread out over a large area (84,000 square miles). It has done so by placing volunteer project coordinators in each of the state's forty-four counties to set up local meetings and by holding a series of countywide and regional conferences. All told, 2,500 Idaho residents have taken part in 150 meetings throughout the state. Over 100 volunteer discussion leaders have been trained by project staff and by philosophers and other scholars from the University of Idaho.

In April 1987 the activities of the project culminated with a statewide citizens' health care parliament attended by seventy-two delegates. Several recommendations grew out of the parliament, with top priority given to the passage of state law authorizing the use of advance directives (living wills and durable powers of attorney) for health care. The Idaho project is not active at the present time, but a portion of its work has been taken up by other community groups and civic coalitions.

Iowa/Illinois Health Policy and Bioethics in the Community Project. Spanning the Quad City region of the Iowa-Illinois border and sponsored by the Iowa/Illinois Health Care Alliance, this project stresses community discussion and education through a series of local forums, regional meetings, and ublic conferences.

The allocation of resources and access to health care were the focal points of community meetings during the first year of the project, while during the second year attention turned to issues of personal health decisionmaking and patient autonomy. Project sessions were well attended in the urban areas, but outreach to more rural areas was not as successful. Unlike most other projects, the Iowa/Illinois project did not hold a large scale parliament. The project is not active at the present time.

Maine Health Care Decisions. sponsored by the Acadia Institute in Bar Harbor, this project focuses on health care needs and services for the elderly. Maine has a large proportion of elderly residents in its population, and health care delivery in rural areas is a significant problem in the state. Through community forums held at local public libraries and other locations, and through special workshops cosponsored by professional and consumer groups, the project surveyed community views on patients' rights and the quality and adequacy of health care services provided to the elderly.

One of the unique aspects of Maine Health Care Decisions is the informal role it has played in forging cooperation and interchange of resources among the many public and private organizations devoted to the health care and social needs of the elderly.

Washington Health Choices. Based in Seattle and sponsored by the Puget Sound Health Systems Agency, this project, which officially concluded operations in 1987, focused on allocation, access, and individual rights and responsibilities in making health care decisions. The project began in 1985 with a leadership training conference attended by volunteers who later served as meeting organizers and discussion leaders. Like programs in California, Idaho, and Iowa/Illinois, Washington Health Choices produced an informational videotape that was used to initiate discussion at the local meetings and to provide some background on the ethical questions to be discussed. Two hundred eleven meetings, involving over 3,000 participants, were held in conjuction with Washington Health Choices.

A statewide conference was held in November 1986 as the culminating event of the project. Delegates reviewed the record of the local meetings--in this as in the other projects, a questionaire completed by meeting participants provides the data base--and discussed strategies for addressing the concerns most often raised by their fellow citizens. These strategies together with the summary of the community meeting results are included in the project's final report. A brief executive summary of the final report was proactively distributed to over 1,000 community leaders throughout the state.

Emerging Lessons

As the projects just described (and others now under way) have evolved, several common features have become clear. These emerging lessons from the Community Health Decisions movement tell us something about what it takes to organize a successful and effective process of citizen participation in a field as technical, complex, and controversial as bioethics and health policy.

The first important lesson from the common experience of the Community Health Decisions movement is that begin a project of this kind it is necessary to plug into an existing network of active volunteers and community leaders at the local level. Such networks are practically impossible to create from scratch, and more of these projects could hope to do so. Fortunately, these networks do exist, richly, everywhere, if one knows where to look and how to develop the trust and credibility needed to gain entry to them. For example, initial resistance from the state health planning system stymied Maine Health Care Decisions until it was able to coordinate its activities through a network of agencies and voluntary health organizations devoted to the problems of aging. These organizations proved receptive to the sorts of ethical and value questions the project intended to address.

Just as these projects rely on these networks, they also enrich them, generating interest that spills over into other activities and drawing in many people who had not been involved before. The Health Systems Agency has provided one important infrastructure for these projects, and its virtual demise due to the elimination of federal funding in 1986 has seriously crippled some promising community health decision projects.

A second lesson is that broad-based community support for these projects is essential, in part because one of their goals is to build bridges among groups that have not previously cooperated with one another, and in part because broad support is required to build community trust. Thus it is important for each project to have a diverse steering or advisory committee, made up of well-known and well-respected individuals from throughout the state. This helps to ensure that the projects maintain the neutrality and fairness so necessary to their special role in the community.

Finally, community health decisions projects are unusual organizations in--and make a unique contribution to--the health planning arena because they are not simply one more "special interest group" vying for influence. The projects have aimed to express a sense of common purposes in health decisions. The goal of transforming discussions of health care issues from "I want" to "We need" has been implicit in the organizational strategies and operating styles of these projects.

In pursuing this elusive and difficult goal the projects have taken pains to avoid polarizing the issues with which they deal. Their objective is to provide a new space for moral and political discourse. This is the space of the democratic forum, where groups that usually cofront one another in an adversarial fashion can bracket their differences, at least for a while, and search instead for common objectives and some common ground. The guiding metaphor of these projects is conversation, not confrontation; and their spirit of advocacy is tempered by one of open and tolerant inquiry.

Accomplishments And Problems

Turning from these general experiences and lessons of the Community Health Decisions movement as a whole, one can also point to some more specific accomplishments of many of the projects supported by The Prudential Foundation and particular problems that they encountered. Not all projects were equally successful in attaining these strengths; nor were all equally prone to the particular shortcomings singled out below. But the following points do fairly summarize the assessment offered by most careful observers of community health decisions activities from 1985 to 1987.

Projects Strengths

Public education and consciousness raising about bioethical and health policy issues are the most really achievable goals of the projects. Each project successfully organized and conducted a remarkable number of local forums during the course of a few months. These forums were spread over wide geographical areas, which made the logistics of organizing them difficult. Most important, these meetings involved thousands of citizens in a factually informed, extended, and carefully organized--but never merely orchestrated--dialogue about selected ethical and public policy issues in health care.

This was not the passive experience of answering preselected questions for a public opinion poll. Nor were they simply occasions to complain about bad experiences in the health care system, although many complaints were aired at these meetings, to be sure. The community health decisions forums created a setting in which contrasting views were given a respectful hearing, but where good reasons for one's point of view had to be expressed and tested in the company of one fellow citizens.

That kind of civic discourse does not happen by accident; it requires careful planning, good leadership support and training, as well as elaborate background preparation and publicity. Operating on shoe-string budgets, with few professional staff and many dedicated volunteers, these projects collectively achieved a remarkable degree of success with their community forums.

The projects successfully assembled and mobilized a critical mass of volunteers and community leaders to advise project staff and to implement programs. Projects of this type inherently rely on networks of professional and civic organizations and on the efforts of unpaid project personnel. However, most of the projects have done more than simply graft themselves onto preexisting community networks. They have become vehicles for forging new connections and coalitions between groups, connections that would probably not have been made without the special impetus provided by the project. This is a particularly encouraging development. It means that even those projects that do not continue active programs after 1987 have made some tangible, and probably lasting mark on their communities. In evaluating these projects, particularly those like Washington, Idaho, Hawaii, and Iowa/Illinois that have closed down their operations, it is important to assess not only what they accomplished while active, but also their after-image, so to speak. This will have its continuing effect in the workings of subsequent coalitions, and in the new ways those involved in the project have come to think about health decisions issues.

For the most part, the projects successfully established themselves as well-balanced, "honest brokers" in an area marked by political and ideological controversy. They were able to take advantage of the widely perceived need to achieve a greater consensus on the issues; and they have been able, at least partially, to defuse some of the adversarial tensions that exist among disparate interest groups. The projects have offered an alternative to the normal channels of interest group politics, and have provided more open, inclusive forums for public discussion and debate.

The projects have demonstrated a high degree of flexibility and an ability to adapt themselves to the special circumstances of their local environment without losing their original sense of mission and objectives. The experience of the past two years has demonstrated that there is no single, preestablished model or formula for conducting a successful community health decisions project. All of the projects began with much the same basic objectives: to increase public awareness and understanding of ethical and social issues associated with health care; to provide opportunities for interested citizens to become more directly involved in these issues; and to enhance the influence of grassroots opinion and perspectives on health policy planning. And all of them were influenced by the example of Oregon Health Decisions. But each project developed its own special means to move toward these goals, and each departed from the Oregon model in significant ways.

Project Weaknesses

Many of the projects were hampered by lack of a secure institutional base. Four of the six projects supported in the first phase of The Prudential Foundation's Community Bioethics Program were dependent, to some degree, upon a state Health Systems Agency. California Health Decisions was an autonomous organization but was housed in an HSA office, while the Idaho, Iowa/Illinois, and Washington projects were officially under the aegis and governance of an HSA, which supplied professional staff and in-kind assistance. The demise of these HSAs in 1986-87 was the single factor that most inhibited the successful completion of these projects. In some cases HSA professional staff who had been working on the health decisions project were transferred to other assignments. And funding cutbacks for project activities mainly occurred just at a time when the community meeting phase of the project was complete and the all-important phase of publicity, dissemination of findings, and follow-up was scheduled to begin. This hampered the project's transition from community education to policy reform. Public relations efforts and fundraising also suffered.

The projects remained too dependent on the commitment and energy of one or two key leaders. It is natural to expect that projects of this type will be heavily dependent on the founding organizers and the project director, at least in the initial stages. But, over time, additional staff leadership capabilities should have been developed more than they were in most of the projects. The failure to attend to this aspect of organizational development or maturation made the projects vulnerable to the loss of one or two key persons. The Hawaii project was seriously affected by the loss of its director, and several other projects virtually went into limbo when their directors and founders took new jobs or left to pursue new interests. On the other hand, strong leaders were always a necessary factor in the success of these projects. Where the project leader had strong public relations skills and where he or she was able to understand the linkage between visibility and results, the projects were particularly successful.

Most of the projects were unable to develop an effective fundraising component for long-term viability. Although the projects were able to use Prudential funds to leverage other sources of financial support, none of them (except California Health Decisions) demonstrated much progress toward eventual financial self-sufficiency. Despite their unique missions, the projects were no different from other fledgling nonprofit organizations in emphasizing programmatic efforts over administrative undertakings. Given the nature of the community health decisions process, moreover, successful fundraising for these projects depends upon the willingness of financial supporters to accept long-term gains in lieu of immediate results.

What Has Been Learned?

1. Community health decisions projects need to be perceived as broadly based and nonpartisan from the very beginning. In many communities some key segments of the health care arena, such as medical societies and hospital associations, some consumer groups, or government agencies, for example, may initially be suspicious of a health decisions project. Nonetheless, over time most projects will try to cultivate the cooperation, and ultimately the support, of all well-established forces in their community. Careful and factually accurate background research, substantive, balanced, high quality programs offered at project forums, and a steady commitment to search for reasonable, cooperative solutions for common problems--these are the factors that will build a solid reputation for each health decisions project in its state or local community.

2. The projects need to develop an independent public identity. They should not be seen as simply one more "program" of the sponsoring organization; nor should they be too closely identified with the personality of one of their founders. Both of these traps are easy to fall into, and it takes concerted, planned efforts to generate the publicity that will put the project "on the map" in its own right.

3. Projects should arrange their governance, staffing, and financial base so that they have functional independence from any single sponsoring organization. Separate incorporation as a nonprofit, tax-exempt organization may be a step that most community health decisions projects will take eventually. In 1985 HSAs seemed the natural home for these projects, given their community contacts and ready-made network of volunteers and health professionals. For projects beginning now and in the future, finding a home base from which to launch initial organizing efforts will be more difficult. But no matter how projects are sponsored, it is advisable to follow three rules of thumb. Projects should develop a broad-based coalition of community support outside the governing apparatus of the sponsoring organization. They should develop an independent fund-raising network. And they should develop an independent group of "stakeholders" in the project itself--those who will take steps to ensure that the project survives even if it needs to become sefl-incorporated and freestanding.

4. Steps must be taken to ensure continuity of project leadership and a secure professional staff component. Projects can't afford to be too dependent on any single individual.

5. There is no one best model for these projects. Many different approaches to the community bioethics process should be tried; flexibility and adaptability are essential. Local circumstances and the personalities of key project supporters and leaders will determine the specific style and approach a project adopts.

6. Projects can be effective in states with different demographic and social characteristics. The existence of networks of educational and civic groups seems to be a more important variable than other sociological factors. It remains to be seen whether these projects can work in large urban areas. The Hawaii project was supposed to test the community bioethics process in a setting of extreme ethnic and religious diversity, but unfortunately it is not possible to come to any specific conclusions about that from the Hawaii experience. Thus far, no project has produced any significant outreach into the black or Hispanic communities.

7. The coalition building and institution building associated with the community bioethics process takes time, patience, and persistence. It is unreasonable to expect that these projects could organize themselves, and fully develop and mature in only two years. It is also unreasonable to assume that they could do much to affect directly the health policy process in so short a time. Progress has certainly been made, but more in laying the groundwork for ongoing activities than in reaching closure on any of the issues or public policy initiatives considered by the projects.

Taking The Next Steps

1988 finds the Community Health Decisions movement less widespread than in 1985 in terms of the number of active projects, but more solidly based with secure footholds in several states. Currently dormant projects could be reactivated if local funding were available. A relatively new project is active in Arizona, and kindred efforts are under way in North Carolina and South Carolina. Interested groups in other states are no doubt watching the progress of the established community health decisions projects, looking for the right ways and the right moments to begin in their areas.

During the next two years they key projects to watch are: California Health Decisions, which is expanding its activities throughout the state; Colorado Speaks Out on Health, sponsored by the Center for Health Ethics and Policy at the University of Colorado, Denver; the New Jersey Citizens Committee on Biomedical Ethics; Oregon Health Decisions; and the Vermont Ethics Network, sponsored by the Vermont Health Policy Council.

Another important new development in the Community Health Decisions movement in Health Decisions USA, a community discussion project recently begun by the National Health Council with support from the Pew Charitable Trusts and the Ittleson Foundation. The National Health Council has close ties with the various voluntary health organizations around the country, and will use these networks as a basis for the community dialogues to be conducted under the aegis of Health Decisions USA.

This project differs from most of the other community bioethics projects in several important respects. It is specifically oriented to selected metropolitan areas rather than entire states. Demonstration project meetings are scheduled to be held in San Diego, Kansas City, and Philadelphia during 1988. Eventually the project planners hope to expand the program into at least forty more sites. Moreover, Health Decisions USA will offer programs consisting of a sustained and concentrated series of discussion forums. The plan is to hold two meetings per week for three consecutive weeks with the same group of participants. Each meeting will last for at least two hours. Clearly this approach demands a significant commitment of time and energy from participants, and its outreach will be much more limited than that of the other projects. Even so, it is likely to achieve one of the principal goals of the community health decisions process: namely, to create democratic forum opportunities for citizens, where opinions are not simply expressed, but reflected upon and shaped by dialogue with other perspectives and other values.

Finally, perhaps the most significant development in 1988 that will shape the future of the Community Health Decisions movement is the decision of The Prudential Foundation to continue its support of selected health decisions projects. One of the primary goals in this second phase of The Prudential Foundation's support of the Community Health Decisions movement is to strengthen and develop the strongest state projects as ongoing organizations. Having passed through an initial experimental and feeling-out process in their communities, a few of these projects are poised to become more stable organizations that will play a continuing, open-ended role in their states, and in the nation as a whole. In addition, The Prudential Foundation program will stimulate the further development of the Community Health Decisions movement by supporting networking among extant groups and by providing seed money to new organizations.

As this report has indicated, the Community Health Decisions movement thus far has been tentative and experimental in temperament, focusing more on tangible programmatic activities and outreach than on internal organization and development. Projects with various designs and strategies have attempted to record public values, to stimulate widespread public discussion of the ethical and social issues pertaining to health care decisionmaking and health policy, and to form new civic coalitions in an effort to reach some consensus on new directions for a rapidly changing health care system.

These ends have been achieved best when community health decisions projects have functioned as catalysts for new ideas and constructive change. Less beholden to vested interests and entrenched positions than some more well-established actors in the health care and health policy arenas, these projects have injected perspectives into ethical and policy debates, as well as increasing the number of voices heard in those debates. And, as previously noted, the projects at their best have served as honest brokers mediating among opposing groups in search of common ground and constructive compromise.

This is a portrait of organizations possessing extraordinary agility and flexibility. But it is also a portrait of organizations that are still quite fragile and vulnerable. They are not yet widely known and recognized by the general public, despite the remarkable success of their outreach efforts. Many community health decisions groups are membership organizations, and other are planning to start membership programs in the future. But constituent loyalty has not yet been firmly established, and membership dues are not a reliable source of significant income for the projects. Paid professional, and administrative staffs are small, and these groups rely very heavily on volunteers to organizae programs.

If these groups are to continue to thrive, and if they are to make a lasting contribution, they will have to stabilize and solidify their own organizational capabilities, while at the same time continuing to offer creative and innovative programs serving the general public and community leaders. The time has come for the leading community health decisions projects to enter a new phase of their life-cycle--a phase that will bring advanced organizational maturity, development, and outreach. More specifically, the future of the Communi ty Health Decisions movement will hinge on the success that projects in key states have in achieving the following goals:

* Projects should broaden the base of their external support.

* The should strength their staff and develop the internal leadership resources of the organization.

* The should continue to increase the involvement of community leaders in the project. No significant actors of the health planning and policy arena should be alienated or excluded from the project.

* Successful projects should reach out to support projects in other states and should assume a leadership role in the national Community Health Decisions movement as a whole.

It is, of course, too early to predict with much confidence whether or not these goals will be achieved. One thing, however, is quite clear. The community health decisions projects have arisen in response to an important, largely unmet need in the American health care system. They respond to an abiding, widespread, and pent-up desire on the part of the public at large to make their voices heard in shaping the ends and future directions of medicine and health care. That is a solid foundation upon which the Community Health Decisions movement can surely build in the years ahead.

For Further Information

Andrew Burness, "Who Lives, Who Dies, Who Pays?" Foundation News 27:5 (September/October 1986), 35-39.

Ralph Crawshaw and Michael Garland, Society Must Decide: Ethics and Health Care Choices in Oregon (Salem, OR: Oregon Health Decisions, 1985).

Ralph Crawshaw, Michael Garland, Brian Hines, and Caroline Lobitz, "Oregon Health Decisions: An Experiment with Informed Community Consent," Journal of the American Medical Association 254: 22 (December 13, 1985), 3213-16.

Susanne Dade et al., Washington Health Choices Final Report (Seattle: Puget Sound Health Systems Agency, n.d.). Available from HealthSystems Resources, 601 Valley Street, Suite 201, Seattle, WA 98109.

Leonard M. Fleck, Just Caring: Justice Health Care, and the Good Society (Goshen, IN: Goshen General Hospital, n.d.).

Brian Hines, "Health Policy on the Town Meeting Agenda," Hastings Center Report 16: 2 (April 1986), 5-7.

Brian Hines, Oregon (and American) Health Decisions--A Guide for Community Action on Bioethical Issues (Washington, DC: Office of Health Planning, 1985). Available from Oregon Health Decisions.

Idaho Health Systems Agency, "No Easy Choices. . ." Ethical Dilemmas in Health Care Resource Allocation (Boise: Idaho Health Systems Agency, 1987). Available from Idaho Health Systems, PO Box 8868, Boise, ID 83707.

Bruce Jennings, "Community Bioethics: Notes on a New Movement," Federation Review 9:5 (September/October 1986), 18-21.

Judith P. Swazey, Many Shades of Gray: Health Care Needs and Services for Maine's Elderly (Bar Harbor, ME: Acadia Institute, 1987).

Vermont Health Policy Council, Taking Steps: Ethical Decisions for Living and Dying (Waterbury, VT: Vermont Health Policy Council, December 1987).

For additional information concerning specific projects contact:

Arizona Health Decisions P.O. Box 4401 Prescott, AZ 86302

California Health Decisions 505 South Main Street, Suite 200 Orange, CA 92668

The Carolinas Program on Medicine and Society 112 South Building University of North Carolina--Greensboro Greensboro, NC 27412

Citizens' Committee on Biomedical Ethics 24 Beechwood Road Summit, NJ 07901

Colorado Speaks Out on Health Center for Health Ethics and Policy University of Colorado at Denver 1200 Larimer Street, Campus Box 133 Denver, CO 80204

Hawaii Health Care, Culture and Social Wals Project Institute for Religion and Social Change 235 Queen Emma Square Honolulu, HI 96813

Health Decisions USA National Health Council, Inc. 622 Third Avenue New York, NY 10017

Just Caring Project Goshen General Hospital 200 High Park Avenue Goshen, IN 46526

Maine Health Care Decisions The Acadia Institute 118 West Street Bar Harbor, ME 04609

Oregon Health Decisions 1124 Madrona Avenue, South Salem, OR 97302

Vermont Ethics Network Vermont Health Policy Council 103 South Main Street Waterbury, VT 05676

A Hastings Center Report Special Supplement June/July 1988. The Special Supplement was edited by Bette-Jane Crigger and Mary O'Malley. Bruce Jennings is Associate for Policy Studies at The Hastings Center. Contents copyright 1988 by The Hastings Center. All right reserved.
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Title Annotation:Community Health Decisions; positive role citizen participation in shaping health care and health policy
Author:Jennings, Bruce
Publication:The Hastings Center Report
Date:Jun 1, 1988
Words:7888
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