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Democracy and justice in health policy.

Democracy and Justice in Health Policy

On July 23, 1990 Dr. Louis Sullivan, Secretary of Health and Human Services, gave the first of a series of planned speeches on the Bush administration's view of U.S. health policy. Saying that he was beginning "a conversation with the American people on what they want from our health-care system and what we're willing to pay," Dr. Sullivan asserted that Americans would reject a radical revamping of the system,. and would not hold still for the "de facto rationing" that supposedly occurs in "nationalized" systems like Canada.

As the articles comprising this update on the community health decisions movement indicate, the conversation that Dr. Sullivan seeks has already begun in earnest, if not in Washington, DC, then certainly at the grassroots level in many states. De facto rationing is not something peculiar to national or universal health care systems, it is a grim fact of life in American health care, too. And it is a nice question whether our quiet, de facto rationing (based on ability to pay) is better or worse, from a moral and a political poilt of view, than the best achievable policy of explicit, de jure rationing would be.

Reform at the State Level. Whether Dr. Sullivan is right in thinking that Americans will tolerate, at best, incremental change in the health care system remains to be seen. What is clear is that the health care system will change and is changing presently, will nilly. The important questions now involve matters of ends and means: What basic values do we want our health care system to serve" And how should we arrive at public policy decisions that do set limits and do have the painful effect of redistributing finite beneficial resources?

It is interesting to note that the most innovative ideas for reform and redistribution are coming from the state level rather than from federal policymakers or national opinion leaders. The basic lesson in social policy since the 1960s has been that marginalized and disenfranchised constituencies can get a fairer, more effective hearing in Washington than in the state capitals where they live, and that welfare problems can't be tackled at the state level anyway. However valid these lessons may still be in other policy areas, it is not obvious that thinking at the federal level about health care access and cost containment is more progressive and responsive to the needs of the least well-off than thinking at the state level.

National proposals for reform have continued the traditional call for vastly expanded access for the underserved--primary care for poor women and children, long-term care for the elderly--but without specifying where the additional money would come from. Debates at the state level, by and large, have been more prone to link the problem of expanding access with the problem of setting priorities among health care services.

The situation today seems to be that the philosophical argument about the justice or rightness of equitable access to basic health care for all has pretty much been won. It is no longer enough, then, only to assert the right to a "basic package of care," or a "decent minimum." Now it is necessary to define specifically the components of the health care floor below which no one will be allowed to fall. In several states it is precisely this debate that the community health decisions grouns now find themselves caught up in.

Moving beyond Individualism. Is this a healthy place for them to be? In one sense they have no choice but to respond to the sitution, for if they were unable to rise to the occasion of this debate, they could hardly claim much credibility among their constituents or the public-at-large. In addition, the sheer politics of health policy reform requires some kind of end-run around the stalemate created by the existing lobbying and interest group process. This situation lends itself very well to the identity that community health decisions groups have fashioned for themselves. Their favored mission is precisely this style of consensus-building politics, operating outside the normal channels of special interest and inside influence.

On the other hand, the priority-setting or rationing issues will catch these community health decisions groups up in political winds that they may be too fragile to navigate. I do not simply mean that powerful interests and big money are at stake in these policy decisions. That is of course quite true. But more than that, the rationing issue will pit the community health decisions groups against the powerful cultural ethos of individualism in a way that the issues of termination of treatment and care of the dying--heretofore their forte--have not.

In the past these groups have been effective sounding boards for the expression of the community health values in the idiom of individual autonomy, negative rights and liberties, and the claims of equality that do not involve the redistribution of scarce goods--i.e., the requal right to refuse treatment. I believe that a large part of the challenge these groups face when they become involved as forums for citizen education on health care access and rationing is precisely to move beyond this moral language and to introduce into the conversation values and claims of a less individualistic, more communitarian character.

When they do this, the sources of support they have enjoyed on the right to die issue may very well be less forthcoming. More importantly, their task of civic education and leadership will become necessarily more creative and demanding. It will not be that of simply receiving and passing alont the messages they collect from the public. Rather, their task will be to provide some structure for public discourse that transforms, and does not simply transmit, moral reflection and civic delibration on the ends of health care in our communities.

In a long tradition of argument stretching from Aristotle through Rousseau to John Dewey, the promise of participatory democracy has always been that it can provide a space for transforming private perspectives into public vision, from the voice of "I want" into the voice of "We should have." If the rationing discussion fostered by the community health decisions forums cannot engage this kind of democratic transformation, there is a real danger that the discussion, mainly health among middle class citizens, will be about what "they [the poor] should be given," instead of being about what "we [all of us] owe to and should provide for one another." If that happens an important opportunity will be lost, and the health care priorities that will be set and the due jure rationing established will probably not be very equitable. nor for that matter will they be a true expression of democracy.

The conventional wisdom about American politics and society at the present time would certainly have us be pessimistic in this regard. But the community health decisions projects may yet prove the conventional wisdom wrong, and they may discover that the transformation from a private to a civic outlook is easier, and more urgently desired, among the American people than we thought.

Bruce Jennings is associate for policy studies at The Hastings Center.
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Title Annotation:Grassroots Bioethics Revisited: Health Care Priorities and Community Values
Author:Jennings, Bruce
Publication:The Hastings Center Report
Date:Sep 1, 1990
Previous Article:A vision of the health decisions movement.
Next Article:Noncompliance in AIDS research.

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