Combining deliberation and fair representation in community health decisions.

• Author: Nagel, Jack H.
• Position: The Law and Policy of Health Care Rationing: Models and Accountability

Among the many controversial innovations of Oregon's basic health services reform, perhaps the most favorably received was the state's effort to involve citizens in the prioritization process. Through public hearings, community meetings, and an opinion survey, the legislature and the Health Services Commission (HSC) sought to elicit directly from Oregonians the "public values" on which the ranking of health treatments would in part depend. Observers hailed the effort as "an open, public moral debate,"(1) "an experiment with health-care-by-democracy,"(2) and "a classic exercise of American democracy."(3) Despite these glowing notices, defects in design undercut Oregon's participatory process, and it fell short of achieving all the benefits for which its initiators hoped. This paper offers a sympathetic critique of Oregon's pioneering experiment in order to help improve future programs that similarly try to involve citizens in making vital decisions.

An orientation to the future is especially appropriate because the Oregon participatory planning process could be the first of many comparable efforts in bioethics and health policy. The Oregon Basic Health Care Act requires the HSC to update its priority listing of health services every two years, and the statutory mandate of public hearings and community meetings appears to apply to future HSC reports, not just the initial list approved by the legislature in 1991.(4) Oregon Health Decisions (OHD), the group that organized community meetings for the HSC, is the prototype for a nationwide Community Health Decisions (CHD) movement, which seeks to bring "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."(5) Supported by several foundations, the CHD movement has spawned projects in at least a dozen states.(6) If other jurisdictions uncritically adopt the Oregon process as a model, its shortcomings could be unfortunately replicated. Conversely, if attention focusses only on Oregon's mistakes without recognition that they are correctable, then the burgeoning CHD movement might be unnecessarily nipped in the bud.

Nor is the relevance of the Oregon experience limited just to health policy. In its reliance on widespread, small-scale community meetings, the Oregon project exemplifies the intensified participatory politics envisioned and vigorously advocated by communitarian theorists and reformers.(7) Resonating with archetypal images of New England town meetings and Jeffersonian grassroots democracy, this ideal has always had a strong appeal in the American psyche. Unfortunately, carried out in a relatively unstructured fashion, intensified voluntary participation can prove antithetical to the egalitarian values on which democracy ultimately rests.

The paper that follows is divided into three main sections: Part I is a general analysis built around four questions that shape evaluative judgements about citizen-participation programs; Part II is an account and critique of the participatory components of Oregon's prioritization process; and Part III suggests improvements for similar endeavors in the future. To emphasize that my critique of the Oregon process is not ad hoc, I begin with an analysis couched in general terms. The problems that Oregon's well-intentioned enterprise encountered were entirely predictable; any future community decision program, in Oregon or elsewhere, that is constructed along the same lines can be expected to exhibit similar shortcomings.

1. GENERAL ISSUES IN THE DESIGN AND EVALUATION OF CITIZEN-PARTICIPATION PROGRAMS

   Debate in this area often focuses on whether responsible governmental entities should or should not enlist ordinary citizens--unofficial, unelected, and unaccountable--to help shape public policy, especially in areas such as health care that involve complex choices dependent on arcane technical information and entailing life-or-death consequences. Devotees of direct democracy reflexively answer yes; conversely, admirers of guardian elites and strict defenders of electoral accountability issue automatic negatives. I take a more pragmatic position by proposing that the desirability of any particular instance of citizen participation depends on answers to four questions:

   (1) How conducive is the participatory process to informed deliberation and stable judgment?

   (2) How representative are participants, both of the citizenry in general and of groups especially affected by the policies at stake?

   (3) How binding are the recommendations that participants make?

   (4) For what purposes do officials seek to encourage citizen participation?

   The answers to these questions are strongly interdependent, whether viewed from the perspective of democratic philosophy or practical politics.

   1. Deliberation and Its Costs

      The alleged incompetence of ordinary citizens to deal with public questions, especially those dependent on technical knowledge, has always been a major argument in favor of reserving policy-making to bureaucratic, scientific, judicial, or other elites. Schumpeter expressed the usual doubts more frankly than most: "the typical citizen drops down to a lower level of mental performance as soon as he enters the political field."(8) For this reason, among others, "democratic elitists" like Schumpeter would confine mass political activity to the occasional, simple act of voting. In their view, citizens' judgments about more complex issues would be dangerously ill-founded and ill-considered.

      If participatory policymaking is not to merit such scorn, then those citizens who become involved must be atypically well-informed and willing to grapple with complexities. Either they must possess previously acquired expertise, or the public-involvement program must devote time and resources to educating them, or both. Ideal deliberative processes require people to talk with one another, speaking their own minds and listening to others so that all can understand how fellow citizens think and feel about the issue.(9) As a process of sequential interaction, deliberative discussion inherently demands more time than potentially simultaneous acts of preference-assertion, such as voting; and, as the number of active participants grows, the time needed for all to be heard rises at least proportionately.(10) Consequently, if citizens are to be involved in a satisfactorily deliberative process, then those who participate must be willing to pay substantial costs in time, mental effort, and social interaction.

   2. The Conflict Between Deliberation and Representativeness

      Other things being equal, the greater the costs of an activity, the smaller the number of people who will engage in it. Applied to political participation, this axiom produces a general rule: The more intensive (or costly) the activity a system asks its members voluntarily to perform, the less extensive their actual participation--i.e., the smaller the proportion who will act.(11) As an intensive form of participation, deliberation will be confined to relatively small numbers. Given the other virtues of deliberation, this prospect would not be troubling if we could count on the few who take part to resemble in policy-relevant characteristics the many who do not. Unfortunately, that hope is usually untenable.

      Because the deterrent to intense, deliberative participation is the high cost of such activity, those who take part must either find that cost easier to bear than their inactive fellow citizens or have stronger countervailing incentives to offset it, or both. Whether by design or inadvertence, unequal costs for different citizens are always built into the logistics of participation programs--for example, the time and place of a meeting may make it harder for some people to attend than for others. The effects of such details on differential costs of participation can be idiosyncratic, but it is possible to make one reliable generalization. Educated, well-informed persons usually have less difficulty participating, because they are more likely to know when and how to participate, they can more easily cope with or even enjoy the cognitive challenges of learning about complex issues, they are more confident about expressing themselves in discussion and debate, and their arguments tend to be more impressive and influential.

      If policymaking were always just a matter of finding neutral, technical solutions to common problems, then disproportionate involvement of educated persons would be desirable because of their superior competence. More often, however, policy choices depend on interests and values that are not universally shared. Education is statistically associated with higher income and occupational status, as well as with distinctive cultural tastes. Thus, policy decisions based on intensive, deliberative forms of citizen participation will usually neglect the needs and desires of more plebeian members of the population, unless the process is carefully structured to counteract the normal bias in favor of the well-educated.

      Just as education biases participation by reducing costs, atypical inducements and motivational patterns will also spur a fraction of citizens to pay the price of intensive participation. These patterns are of three types: (1) special interests, as when an individual has an unusual financial or other stake in a public decision; (2) "selective incentives," as when an organization (e.g., an employer) makes individual rewards or punishments contingent on participation;(12) and (3) zealous devotion to a particular policy, which can have any number of causes--ranging from ideological, religious or ethical conviction to mere eccentricity. All these motives will entail distinctive policy positions, and it is exceedingly unlikely that the persons they impel to act will...