Buzz words or principles: ethics & health-care reform.

In June 1990, when I was lining up the witness list for a Senate Finance Committee hearing on the Patient Self-Determination Act, a prominent medical ethicist declined to testify for fear of having his views distorted and manipulated by the political process. The bill, which became law that fall and which required medical facilities to distribute information about living wills and durable powers of attorney, was the first piece of federal legislation to deal explicitly with end-of-life decision making--a major ethical issue. Yet this respected ethicist expressed skepticism about the capacity of a political forum, such as a congressional hearing, to capture adequately the nuances and complexities of the issue. Only two years out of divinity school and convinced of the political relevance of ethics, I argued with him that ethicists have a responsibility to engage in the public dialogue about health-care issues to ensure that the human and ethical dimensions be addressed along with economic factors.

Three years later, watching the national health-care debate, I think this bioethicist may have made a salient point about the relationship between ethics and politics.

As the Clinton administration begins to unveil its plan for our ailing system, the feasibility of marrying ethics and politics remains an open question. Of the four hundred or so members of the President's Task Force on National Health Reform, a small number were engaged in the discussion of ethical matters. Although the ethics group did not convene until many of the other "clusters" and "subgroups" were well underway, one of its tasks was to articulate the principles underlying the effort to reform health care. Thus, the parameters of the new health-care system were set before the ethics group ever met, and participants in groups constructing basic aspects of the plan said they had little or no exposure at all to the "ethics people." In one sense, that isolation might have been positive because each group was free to function without outside pressures. But then, we have to ask, what contribution did the ethics group make? And what relevance did its deliberations have in the formation of the Clinton health-care policy?

There is no question that in the realm of health-care reform, critical ethical choices must be made. One of the most politically difficult--medical rationing--wasn't even touched. In the view of an aide to Hillary Rodham Clinton, the administration needs to prove its credibility in containing overall health-care costs before even discussing whether some forms of medical care are worth the limited benefits they provide. And although Mrs. Clinton's aide was under the impression that the ethics task force made thoughtful contributions and recommendations with respect to end-of-life decision making, participants in the ethics task force said these were not the kinds of issues they discussed. Even the volatile issue of including abortion in the basic benefits package was not on the group's agenda.

But as two participants admitted, they were under no illusions that their work was in any way intended to form the ethical foundation of the new system or that policy choices to be made turned on ethical considerations. Rather, their work would be used as justification for the plan. Thus, consultants working on the basic benefits package, the structure of the purchasing cooperatives, and other central components of the system, were not waiting for the ethics group to conclude their deliberations.

The ethics group did, however, articulate a broad range of principles that should motivate any new health-care system, and these contributions have apparently helped the Clintons frame a philosophical approach to the complex issue of health-care reform. When it comes time to sell the health-care program, the rhetoric will most likely be gleaned from the values and principles articulated by the ethics task force. The preamble to the bill will be loaded with words such as security, choice, quality, access, and efficiency that signal valued principles. A trial balloon raised by the administration in August used many of these buzz words.

Nonetheless, the ethics participants hope that as the program is put forward, their contribution will not only be part of a public relations campaign, but will also be used as a standard by which to measure the ultimate product. Arthur Caplan, who led the "values framework" subgroup of the ethics cluster, says he would be happy to see the health-care reform plan sold in terms of certain ethical standards, and told Ira Magaziner, head of the task force, as much. Caplan believes that these standards would serve to hold the plan accountable.

But remembering the words of my reluctant witness of three years ago, I worry that participation of the ethicists gives the appearance that the plan has an ethical stamp of approval, though none of the hard ethical questions has been addressed. Of course, these are not easy questions nor is the relationship between ethical deliberations and practical policy outcomes clear-cut. But it seems to me that the professional ethicists have missed the opportunity--a rare one--of contributing to the public debate without being used by the process.