A Grassroots Movement in Bioethics

Article excerpt

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. …