Grass Roots Participation in Health Care Reform

Rationale

The desire of citizens for participation in policymaking has been pointed out by the President's Commission for the Study of Ethical Problems in Medicine and Behavioral Research: “Since the early 1960's there has been an extraordinary emphasis on the rights of citizens to direct the course of their own lives, from voters rights to consumer rights. This stress on the individual has been coupled with a skepticism towards the claims of specialized expertise and a suspicion of powerful institutions and the ‘establishment.’ Health care has not escaped its share of criticism in the process” [4]. Coupled with this desire for participation is a palpable, public angst about the cost and complexity of modern medicine. This surfaces as a deep concern of an aging population about personal health care choices associated with chronic rather than acute disease, not with life and death: a shift from factual questions of health and illness to value questions of quality of well-being in the face of competing needs.

These two forces seek voices in the public realm, a role formerly discharged by articulate political leaders. However, in these days of complex issues that do not yield to political rhetoric and traditional values, politics as usual too often ends up in legislative deadlock. The functional alternative is enabling the people to speak for themselves, the health decisions movement. The most powerful rationale for the health decisions movement lies with the certain fact that health reform will call for many sacrifices. If the government expects citizens to buy into sacrifices of services and money, they must buy into the reforms, an unlikely event unless the public has actively participated in determining the nature and extent of those sacrifices. The political science of the health decisions movement follows the work of Benjamin Barber [5] and his participatory politics of “Strong Democracy.” Where Thomas Jefferson saw independent farmers as the support of American democracy, the modern counterpart for this human potential now lies with concerned, independent citizens prepared to follow their beliefs in political freedom [5].

National Perspective of State Health Reform Processes

In examining the health decisions movement, the emphasis is on states that have used it. Minnesota, Florida, and Hawaii have initiated innovative state health reform, yet they have not followed the grass roots route as have Oregon and Vermont. Although Minnesota has been exposed to the health decisions movement, its reform program grew out of the “Gang of Seven.” Four Democratic and three Republican legislators were so frustrated by the powerful senate health committee blocking a single-payer bill that they quietly built a legislative consensus of their own for broad-based reform. They then went to special interest groups while developing a strong positive relationship about the issue with the press to develop public approval [6].

Florida, with its large population of elderly persons, has followed the commission route favored by top-down legislative leadership from a dedicated governor seeking change by comprehensive reform. Using the commission, task forces, and policy “clubs,” the citizen's prime involvement comes down to making a formal, one-time statement at a hearing. Consequently, the commission approach for grass roots input lacks group discussion, the forging of values through argument, which the health decisions movement considers imperative for uncovering community values. Florida has yet to see its reforms actually put in place [7].

Hawaii, a state with an enviable health record to begin with, had a health decisions organization founded in 1985, long after the passage in 1974 of their unique bill mandating employment-based health insurance that offered access to nearly all Hawaiians. Although Hawaii was first to grant broad access to its citizens, complex health issues occur because of the extremely diverse culture that receives widely disparate components of delivery. The Hawaii decisions process focused on workshops in neighborhood centers, churches, temples, senior clubs, union halls, and cultural centers seeking community consensus on the health values that the state's health system should pursue. The untimely death of the initiator of the Hawaii Health Care, Culture and Social Values Project precipitated the demise of this health decisions organization [8].

Health decisions organizations in Vermont and Oregon have pioneered the broad grass roots approach to health policy. California, the largest state organization with five chapters, and Georgia have developed focused variations of community meetings to fit their state needs in specific ways. The following is an overall perspective on the qualities offered by concerned citizens, including physicians, in establishing and maintaining a health decisions organization.

Stages of Development

Five stages of development accompany citizen-based, grass roots health care reform: initiation, mobilization, implementation, acceptance, and affirmation. Each stage appears to generate a seemingly unrelated configuration of thinking and leadership. How they interlink is a fascinating self-empowering process as yet dimly understood. The result is not a constituted team but a league of improvised or shadow teams made up of people from all walks of life. These improvised teams lack defined roles yet display an impressive flexibility for exchanging and using ideas and community power. The civic dynamo for creating political will stemming from improvised, grass roots teams seems applicable to other complex social issues that so often lead to legislative deadlock. Citizens in Oregon, for example, are presently exploring applying this interaction of team with team, accompanied by informal, fluid transfer of mission responsibilities and authority to the perplexing dilemma of allocation of water resources.

Initiators

State health reform does not begin, although it may die, as an abstract concept created by experts who are interested in fine-tuning the existing system. Reform starts with real-life experiences of people injured by the system. For these people, the initiators, complaining is not enough because they resolve to correct a system that neglects or abuses patients. Efforts to improve states' delivery of health care uniformly appear as responses to calamities involving any of the three key elements of health delivery: equity in access, containment of cost, and maintenance of acceptable quality of care. Invariably some concerned individual becomes aware of an egregious failure of the health delivery system and reacts with the determination to “do something about it”

The initiator may be a state legislator whose belief in a reasonable civic basis for the delivery of health care is shattered by the arrogance of some importuning turf manager. The initiator may be a provider whose eyes are opened by the inhumane care received by a sick relative [9]. A pediatrician, treating a seriously ill child whose treatment is “disallowed” by a third-party payer, may turn his concern into action as an initiator. A small business owner with a sharp eye for cost accountability who carefully reviews the complete, itemized computer printout of the hospital bill for an injured son can go public in calling a halt to accounting nonsense.

The initiator may be a lay person whose experience of illness has left him or her seeking ways of avoiding unintended complications. Mary Strong, President of American Health Decisions, founder of the New Jersey chapter, the Citizens Committee on Biomedical Ethics, 69 years old, stated it this way. “My interest in this topic (personal choice in the use of advanced high technology) stems from an event in my life when I was 17. Three of my friends got polio. One died, one was crippled and one was put in an iron lung. Most troubling to me was, If I got polio and was put in an iron lung did I have a choice? It was the first mechanical technology that could change your way of life. My concern over this issue has grown as the technology has grown” [10].

Most initiators go without recognition, for what follows in the health reform process has a way of taking on a life of its own. The anonymous initiators prove the nascent source of grass roots reform. The critical point for the initiator is “reporting it as it is” clearly, repeatedly, emphatically. The initiator's message is generally presented as a specific case that reverberates for others as a shared concern for a breach of an essential community value. As a member of the North Carolina Bio Ethics Resource Group put it, “When I saw my father die the way he did (on unsolicited and unwanted high technology life support systems) I swore at his bedside this should never happen to another human being.” Undaunted, the initiators frequently confront profound public lethargy and possible intimidation for criticizing the “best health delivery system in the world.” Initiators are the first and most important heroes and heroines of a healthy and health-promoting democracy.

Mobilizers

The next step of grass roots health reform is the mobilization of others with similar points of view and experiences. The case must be made, and made repeatedly, that the dysfunction of the system is general and not a one-time happenstance. It is not enough to cry out in protest. To be heard, the voice for change must echo from many suffering souls. Mobilizers take the initial outrage and tune it for the public's ears with common appeal and civic relevance. Oregon Health Decisions offers an example of civic mobilization. It was founded by citizens in 1982 as a spin-off from a grass roots conference of concerned citizens, providers, and government officials who recognized that Oregon, as a state, had to decide some tough basic health care issues. “Society must decide” became the organizing motive for continuing efforts to “harmonize” issues to the public's ear [11]. The critical point for mobilizers is developing a constituency whose message is broader than the grim facts of system disease. Fact-oriented organizations quickly devolve into special interest groups. Worthy as the “Citizens for a Canadian Health Plan”- or “Help the Children”-type organizations may be, they do not aim at explicating the fundamental community values needed to support the spectrum of basic health care.

Mobilizers acting through community forums assist citizens in clarifying and ranking health issues. Mobilizers may respond to a community leader's call to change an unacceptable condition. At times the findings of a task force call for public reinforcement. These are paths open to mobilizers trying to help the public understand the issues. In any case, armed with relevant information, mobilizers bring the issues to public forums to refine citizen values in recognizing and prioritizing sentinel issues. The reason for this is obvious. Only as the mobilizers articulate and bring issues to the public will the public “own” the issues. Public ownership comes in different ways. Sometimes a dramatic case, such as that of Cobey Howard, an Oregon child needing an organ transplant that the state decided not to fund, arouses the media's interest, lending urgency to deciding tough issues about funding for expensive, high medical technology [12].

In each state, mobilizers face different problems with grass roots communication and funding. Mobilizers need a keen appreciation of local attitudes, resources, and possibilities for political will. Georgia Health Decisions is pioneering a focus group approach in which the issues are placed before a predetermined cross section of residents of Georgia who are representative of a substantial portion of the state's population; this organization can maintain a paid staff of mobilizers and can reimburse participating citizens for their time on the community meeting.

At the other end of the funding spectrum, New Mexico Health Decisions is largely volunteer with the mobilizer, an ordained minister, finding it expeditious to join 26 different ethnic community boards in order to place New Mexico Health Decisions in a position of community acceptance. Whatever the approach used by the mobilizer, validity for the mobilizer's work flows from public appreciation that a substantial portion of the public actually expresses personal health care values. Only then can the mobilizers' findings make a difference. There is no other way.

Implementors

Building on public momentum for reform, the implementors receive the amorphous value findings from the mobilizers to then make functional reform programs by blending citizen's values with informed expert opinion. In Oregon, Dr. John Kitzhaber (a respected emergency room physician and then President of the State Senate, working with staff, experts, and fellow legislators) “implemented” a health reform bill (Senate Bill 27) that became known as the Oregon Health Plan. The bill was strongly based on the work of initiators and mobilizers ensuring that every legislator knew of its value from his or her hometown constituency. Dr. Kitzhaber's legislative experience and critical contacts as an implementor ensured a fair hearing for the bill, which was enacted without major opposition. In fact, only 2 of the 60 members of the House voted against it.

The importance of mobilizers is seen in Oregon Senate Bill 27, which mandates that Oregon Health Decisions return the legislative findings related to the Health Plan to the public for their validation. A similar ongoing relationship of implementors to the public forms part of Vermont's health reform effort. Through an act of the Vermont legislature, the grass roots Vermont Ethics Network is mandated to conduct a series of public forums ensuring that Vermont's health reform laws remain in concordance with values held by residents of Vermont. To integrate the work of the mobilizers into legislative action, implementors must display a unique understanding of the complex relation among what is possible, desirable civic outcomes, and operant political power.

Acceptors

Next in effective health reform is official civic acceptance. Acceptance by substantial leaders signals to the people of the state that a workable consensus has been reached. Acceptors establish a statewide ambience of tolerance and hope. As leaders they must endorse that necessary costs for reform—social, economic, and possible human suffering—are worth the sacrifice.

Acceptance should be obtained from the titular heads of government and from pertinent private and public organizations throughout the state, including the governor, presidents of health associations (state medical, nursing, hospital, and ancillary), leaders of academic medicine, citizen groups, health insurance companies, and industry. As they express opinions that at least tolerate and at best strongly approve reform, programs of reform cease to be abstract wishes and become functioning reform programs. An example of endorsement is that from Oregon's congressional delegation, from the governor, and from nursing, hospital, and medical associations, with the latter taking the plan to the House of Delegates of the American Medical Association that endorsed the Oregon request for a federal Medicaid waiver.

Failure to link political leadership to the expressed values of the public, as when the President of the United States refused to grant Oregon a Medicaid waiver, results in more than a barrier to health reform. Governmental action counter to the expressed will of the people can only result in a loss of trust in government and can retard national efforts for health care reform. Subsequent rulings by the present administration have granted the Medicaid waiver, returning the issue to the people of Oregon to find a way of funding their reform efforts.

Dissenters and Affirmers

Experience teaches that health care reform is a never-ending enterprise in its quest to reasonably influence vast governmental and private bureaucracies. The quest has its dissenters. Dissatisfaction with the process takes several forms, ranging from “just another bull session,” a “civic textbook” approach, to failure to authentically represent the diverse public. The most repeated criticism is that health decisions organizations cannot speak for ethnic and disabled minorities. Of course, the question of representative membership is true for most democratic organizations (such as the U.S. Senate) that have problems finding members among those lacking the discretionary time, money, and political power prerequisite to membership.

Although it is true that 85% of the membership of health decisions organizations is made up of white, middle-class, professionally oriented citizens, the health decisions process makes active efforts to reach those who lack easy, or any, access to political power. Meetings are held in ethnic neighborhoods at times when working people can attend, with babysitting provided for working mothers. Meetings are held in the language of the neighborhood (for example, Spanish and Russian). In addition, American Health Decisions is conducting research in ethnic outreach in three states (California, New Mexico, and Georgia) to learn what people in targeted ethnic groups believe makes community meetings worth investing their limited time and resources.

The fact of pernicious, implicit rationing of health care throughout the nation does not lessen protest against the grass roots approach to health care allocation. To the critics, the explicit attempt to ration health care in Oregon is seen as burdening “the most vulnerable and defenseless patients” with the cost of reform [13]. The uproar has, however, gained a growing audience willing to acknowledge that the resulting basic package might well give Medicaid and the otherwise uninsured persons an improvement in actual health care compared with services presently available. Although it gained faint praise, the Oregon grass roots effort did bring the state, if not the nation, to openly recognize that “everyone cannot have everything” and that limits must be set on what health care is accessible to ensure equity in its allocation.

In contrast to dissenters, those who affirm steps to reform give back to the public the value of citizen participation in contributing values, trust, and political will. Citizens must hear, almost as a conditioned reflex, that their help made a constructive difference in reforming their social institutions. Affirmation is a requirement at all levels in grass roots reform. At each step in the grass roots process, the principal actors need to publicly witness that the final judgment rests with the public.

One counterproductive form of affirmation is the promotion of altruistic goals by paternalistic “do-gooders.” As latter day Ladies and Gentlemen Bountiful spread their doctrine of beneficent enlightenment for the disenfranchised, they sow distrust and dissatisfaction. American Health Decisions is deeply concerned about including the opinions of ethnic minorities to affirm all citizens as peers. The scars of past “invasions” of ethnic neighborhoods by experts with their polls, interviews, and surveys must be respected as sources of endemic wariness to any newcomer bearing promises of empowerment. To avoid such counterproductive behaviors, health decisions meetings are conducted in the local dialect (with the endorsement of ethnic leaders) at a point of entry into the community designated by the people of the neighborhood, often their churches. Then, despite good, bad, or indifferent results, candid feedback goes to any who involve themselves in health care reform.

The ultimate role for members of the extended grass roots reform team is as two-way communicators. Each player must communicate with and listen to the other team members playing different yet essential roles in the reform effort. Back and forth this patchwork communication net must buzz with belief in a shared trust of the worth, endowment, and dedication of the other participant.

Success and Failure

When presented with a clear goal and the resources to accomplish it, chapters of the health decisions movement prosper. The most vulnerable aspect of the health decisions movement is the episodic nature of the work, highs of activity followed by lows of inactivity. Health policy goals have abstract qualities that do not promote continuity. A continual need exists to educate the public about complex health care issues concerning high medical technology, legal alternatives in making personal and family health decisions, the ethical dilemmas of the genome project, health promotion, and access for ethnic minorities, to name but a few. However, each issue quickly takes on the coloring of a self-contained campaign with stages of development starting with planning and running through funding, education, public meetings, and political payout. The continual highs and lows of activity bring the possibility that protagonists for consensus may flounder in a low between projects.

Examples of organizational waning are not hard to find. In 1985 Colorado Speaks Out on Health, the Colorado health decisions chapter, moved ahead with pioneering community education under the leadership of Dr. Fred Abrams, a practicing obstetrics-gynecology specialist. With its immediate goal accomplished, the chapter became largely dormant, with only a volunteer secretary answering the mail. This also happened in Arizona and Hawaii where the follow-through petered out with the loss of the spark plug mobilizer. In these situations the conference was held, the consensus was forged, or the law was passed (or all of the above) without carryover to a renewed life-sustaining goal. Sustained success calls for the mobilizers to maintain a cadre of dedicated members willing to hold on through the lean periods between large community projects.

A window of opportunity has opened for physicians to participate in grass roots health care reform fostered from the bottom up. Physicians may help initiate, mobilize, implement, and affirm the political will necessary to reform health care by contributing to and sharing the civic talents of concerned citizens. Augmented by direct support of physicians, the evolving grass roots health decisions movement can substantially enhance standards of equitable, quality health care throughout the nation.