 | Topics: Health Community Meetings Shape Oregon Health Plan, continued Index Story: Citizens Create Dialogue on Values in the Oregon Health Plan Case Study Plus: Common Purpose in Health Policy. Report of Focus Group Meetings, March 1994: a 33-page report by OHD that includes an account of focus groups conducted by OHD to aid the Health Services Commision in determining how citizens feel about 2 issues: a) whether practice guidelines will be useful within the priorities list established by the Oregon Plan; and b) whether availability and access to some medical technologies should be regulated and managed in a way that reduces cost and redundancy, or for other reasons.
Case Study Plus: A 10-page overview of Oregon Health Decisions from its origins in the early 1980s through the community meetings in 1990. Contents Case Study Plus: A History of Oregon Health Decisions Case Study Plus: A History of Oregon Health Decisions Written by Richard Conviser, Ph.D.
© Copyright 1990, by Richard Convisser Oregon Health Decisions (OHD) is a private, nonprofit organization dedicated to citizen education and action on ethical issues in health care. OHD seeks broad citizen participation—from both experts and laypersons, both the well-heeled and the poor—in the process of clarifying values on bioethical (health) issues. To date, three OHD projects have been completed; each has drawn citizens together in community meetings to deliberate about health policy issues. On each occasion, OHD has issued a report on citizens' ethical values, making specific recommendations concerning access to health care services and their funding. Reflecting OHD's dedication to action on bioethical issues, the reports sometimes also stipulate who should act and how. In the three projects completed to date, Oregon citizens have consistently indicated that disease prevention and health promotion should have the highest priority in decisions about access to health care. It is for this reason that Oregon Health Decisions has chosen to focus its next initiative upon health promotion and disease prevention. The seed for Oregon Health Decisions was planted early in the 1980s and was nurtured for several years before the organization emerged in its present form. Four individuals responsible for the early growth of OHD each left a distinctive mark upon its focus and method. Ralph Crawshaw sought public debate on bioethical issues. Michael Garland felt that such debate should involve not only experts—the usual course of events—but also grassroots input from Oregon citizens. Betty Lobitz had a particular interest in the issue of death with dignity. And Brian Hines contributed the view that there should be an organization with a continuing membership to consider bioethical issues. In 1981 Crawshaw was chair of Oregon's Statewide Health Coordinating Council (later renamed the Oregon Health Council), responsible for creating a State Health Plan with participation from the state's three health systems agencies (Northwestern, Western, and Eastern). The economic downturn in the state at that time had left many people unemployed and, consequently, without private health insurance coverage. Crawshaw proposed that there be a study of the state's medically poor, and in 1982, the Oregon Health Council convened a Governor's Conference on Health Care for the Medically Poor, with staffing provided by the State Health Planning and Development Agency. The conference heightened participants' concerns about two major questions: (1) What are the relative values society places on curative and preventive services? (2) Given that an implicit rationing of health care already exists, what is the possibility of making such rationing explicit and congruent with community values? The conference resulted in "a recommendation ... to form a task force to develop public awareness and consensus on bioethical issues" (Crawshaw et al., 1985) and in the formation of a Coalition for the Medically Needy. The latter successfully persuaded the state legislature that Oregon should "participate in Medicaid's optional `medically needy' program—thus adding over $10,000,000 [to the state's coffers] for the care of pregnant women and children" (Hines, 1985). In addition, the recommended task force was formed by the independent, nonprofit educational foundation that had been created to sponsor and fund the 1982 Governor's Conference. This foundation, which became Oregon Bioethics Conference, Inc., initially paralleled the Oregon Health Council and had the same board. Several board members were reluctant to undertake the bioethics project because of its possible financial risks and the foundation's somewhat vague mission, which consisted of a process rather than a specific program. First Project Nevertheless, a volunteer steering committee was appointed to raise funds and coordinate activities for the bioethics project, and an operating budget was set and raised for 18 months of activity (Crawshaw et al., 1985). The project was carried out largely by volunteers, but there were both paid and unpaid organizational staff members as well (Hines, 1985). One of the organization's founders has observed that "[m]anaging [such a] project should be viewed less as a well-structured process in which community knowledge of bioethics is manufactured, and more as an artistic venture that will create wisdom" (Hines, 1985). The project was conceived of as a general exploration of public values about ethical dilemmas in health care. The main vehicle for this exploration —and something that has become a hallmark of the Oregon Health Decisions process—was to be a series of community meetings throughout the state. Because Oregon's three health systems agencies were viable and had well-developed community-based networks, these agencies were made partners in the project; staff and about ten recruited community volunteers were involved from each agency. The volunteers were to be trained as group leaders for the project's community meetings. Four advisory committees were also formed, consisting of professionals in law, medicine, nursing, and religion; these committees reviewed written material intended for the public (Crawshaw et al., 1985). Training for the community meetings began in September 1983 with a two-day workshop involving 32 volunteers, organizational staff, and advisory committee members. Four national experts in bioethics spoke at the workshop, which was intended to introduce the future community meeting leaders to bioethical concepts and ideas and to planned community activities. Participants were also brought face-to-face with ethical problems through visits to facilities caring for children who were prematurely born or severely handicapped. The training sessions left some volunteers feeling ill-equipped for the community education task to follow, but detailed guidelines for the community meetings were issued by organizational staff several weeks later (Hines, 1985). Over the following six months, the volunteer group leaders facilitated 300 community meetings with over 5,000 participants. Each meeting began with a videotape filmed at the training workshop and a questionnaire meant to stimulate and focus discussion. Group leaders attempted to get each group to reach consensus on its top three concerns. Most groups were drawn from already existing community organizations—e.g., Rotary Clubs, Chambers of Commerce, senior centers, or church congregations. It proved more difficult to get broad citizen participation in the large metropolitan Portland area than in Oregon's rural areas and small towns. (In part, this accounts for the fact that minority groups, which are concentrated in Oregon's urban areas, were underrepresented among participants in the community meetings.) Findings from the community meetings were conveyed to the organizational staff, which put together a preliminary report that was returned to communities for further comment. The 17 town hall meetings at which comments were solicited, held during March 1984, drew relatively small numbers of attendees, ranging from 16 to 60 per session and averaging around 40. In retrospect, staff members felt that the breadth of the topic—a general exploration of ethical issues in health care—might have limited public interest (Hines, 1985). Still, a preliminary summary of citizens' views from the town hall and community meetings was released in July 1984. The final public meeting of the project, the first Citizens' Health Care Parliament, was held in October 1984. Thirty volunteer group leaders participated in the Parliament, along with 11 advisory panel members and 20 community representatives named by the boards of the health systems agencies (Crawshaw et al., 1985). Participants were given a list of potential resolutions for debate and voting; these had been sorted by organizational staff into five major content areas: (1) patient autonomy and dignity, (2) disease prevention, (3) access to services, (4) cost control, and (5) resource allocation. Resolutions in these areas were reviewed by delegates the evening before the Parliament to assure that they accurately represented the concerns that had been expressed at the community meetings. Delegates arranged the resolutions in order of importance; debate upon them at the Parliament was overseen by a skilled parliamentarian. The resolutions approved by the Parliament formed the basis for a report, Society Must Decide, that was released in January 1985. The report's preamble expresses basic societal values, including the following: "Since the health of a nation's people is a top priority, society is responsible for organizing and financing a system of services, education, research and technological development to prevent disease, promote health and provide care to the sick and injured" (Oregon Health Decisions, 1985). The following quotation is also taken from the report: Oregonians are convinced that, when it is possible to do so, preventing disease makes more economic and ethical sense than curing it. Disease prevention, however, often involves individual lifestyles not readily controlled by legislation. Thus, in addition to recognized public health measures, new ideas for discouraging unhealthy behavior and promoting health need to be implemented in the health care system. The first Parliament passed several resolutions concerning disease prevention. These include providing more support for the general education of the public and the school-age population; including prevention in any definition of "adequate" health care; increasing general access to health promotion and disease prevention programs; using economic incentives (such as taxes) to discourage injurious behavior and promote healthier lifestyles; increasing child abuse prevention efforts; and supporting research on environmental health hazards. Resolutions in several other content areas also touched on prevention; e.g., one resolution on resource allocation suggested increased funding for prevention research. Following the First Parliament Shortly after the release of Society Must Decide, Oregon Bioethics Conference, Inc. separated from the Oregon Health Council; the separation hinged on the Council's reticence to endorse fully the results of the first Parliament. As a state advisory body, the Health Council consists of cautious Governor-appointed members, so this result should not have been surprising (Hines, 1985). But the lukewarm response from a sister organization disappointed those who had taken responsibility for the first Parliament. Thus, in February 1985, an independent board was formed and Oregon Health Decisions assumed its present form. One strong belief that emerged from the first Parliament was "[t]hat collective health financing should be accompanied by community responsibility for allocation and rationing decisions" (Crawshaw et al., 1985). Consequently, Oregon Health Decisions continued its work beyond the report's appearance with an implementation committee and follow-up to various targeted organizations. In conjunction with the substantial media coverage of the Parliament's resolutions, OHD's actions influenced other organizations—including the Oregon Medical Association, Oregon Association of Hospitals, Oregon State University's Gerontological Center, and Oregon Planned Parenthood—to take up bioethical issues. Attorneys active in OHD introduced amendments to the state's Natural Death Act into the state legislature. Similar activities were spawned in other states, and the federal Office of Health Planning, Department of Health and Human Services, commissioned a guide for community-based bioethics projects written by one of the founding members of OHD (Hines, 1985). A national organization, American Health Decisions, was also formed to coordinate the activities of similar organizations springing up across the country. OHD's implementation committee identified several high priority resolutions on the basis of their ranking by the Parliament, their specificity, their ethical emphasis, and the lack of attention given them by other Oregon organizations (Hines, 1985). Follow-up focused on two issues. The first, ensuring that people's treatment decisions are followed in the event of a terminal illness, was the focus of a bill reintroduced into the 1987 legislative session; intensive media efforts were also undertaken to increase the proportion of Oregonians with living wills. As a result, Oregon now has progressive forms of both Living Wills and Durable Power of Attorney for Health Care (Crawshaw, 1990). The second issue, defining the boundaries of adequate health care, became the focus of Oregon Health Decisions' second project. In 1987, Oregon's state legislature decided to stop paying for organ transplants, except for kidney and cornea transplants, for Medicaid clients. Proponents of this action argued that providing prenatal care for pregnant women should have a higher priority than providing transplants. The legislature's decision was an outgrowth of OHD's first project (Jennings, 1988) and helped to focus public attention on the more basic issue of what health care services should be guaranteed to all Oregonians, regardless of their insurance coverage or income. Second Project OHD's second project came to be called Oregon Health Priorities for the 1990s. A deeper examination of issues identified by the first Parliament, this project had a more structured group process. It had a more focused goal as well: influencing state government health program budget priorities for the 1989-90 legislative session. The problem addressed by this project can be stated succinctly: health care resources are limited, yet there is no explicit social policy for guiding rationing decisions with regard to health care. It was recognized that in defining what constitutes adequate health care, this project would have bearing upon the benefits that might be included in any program to aid the uninsured. Once again, Oregon Health Decisions planned to address this issue through a series of community meetings. A steering committee established a methodology and an agenda of allocation issues that community forums would consider. There were fifteen issues ("decision packages") initially proposed for discussion at the community forums, corresponding to four types of health services. Long-term physical health services included residential and home care; short-term physical health services included prenatal, other basic, and critical care—organ transplants, AIDS treatment and prevention, and "heroic" care for the terminally ill; mental health services included mentally retarded institutional and community care, psychiatric institutional and community care, and substance abuse services; and public health services included environmental health, health status monitoring, and health services/county subsidies. For each decision package, it was initially proposed that there be information describing the service; its health and other consequences; providers; state program eligibility requirements (and the extent of private insurance coverage); and descriptions of those receiving services, the number of services provided each year, the cost per year, and funding sources. It was proposed also that both the current state of affairs and options for improving access or quality be described. During the three months preceding the first community meeting, the OHD steering committee clarified and narrowed the issues that participants would be asked to address. It was determined that the focus of the community meetings should be upon the options that participants valued rather than why they had the priorities they did; the latter was deemed too complicated. Moreover, it was decided that the range of issues outlined in the previous paragraph was too broad to be considered in the limited time frames of the community meetings. Ultimately the 15 decision packages originally proposed for participant discussion were shelved in favor of just four types of health services (preventive, critical, short-term, or long-term). The meetings were publicized in the media and took place between February and June 1988. They typically lasted two hours in the evening and were open to the public. Attendees were seated in 7-10 person groups, with a locally trained facilitator assigned to each group to focus discussion and develop consensus. Each participant filled out a short questionnaire asking town and county of residence, age, sex, occupation (health-related or not), education, and political leaning. Following an introductory discussion, participants answered a survey comparing state allocations for health services with those for other areas—economic development and consumer services, education, non-health human resources, natural resources, transportation, and other. Relative state expenditures in each area were indicated, and participants were asked whether the amount spent for each of the areas should be more, the same, or less. Participants were also asked to indicate whether state taxes for all of these areas—taken together—should increase, remain the same, or decrease. Participants were then asked to assign Oregon health priorities on two bases, the recipient's stage of life (infant, child, adult, or elderly) and the type of health service (preventive, critical, short-term, or long-term). For the sixteen cells in the resulting 4x4 table, participants were asked to assign five high priority areas, six medium priority areas, and five low priority areas. An accompanying table gave examples of each type of care. There was also a question specifically addressing whether state government should pay for one particular form of critical care for Medicaid clients: organ transplants (heart, liver, pancreas, bone-marrow). Once participants had indicated their individual preferences, a group discussion followed in which their reasoning was probed and an attempt was made to establish group-level priorities. Finally the results from each of the small groups were shared among all those attending the community meeting. The top five priorities selected by 560 participants at 19 community meetings were preventive care for infants, children, and adults, long-term care for the elderly, and critical care for children. On the organ transplant issue, 15% favored state funding, with 45% opposed and 40% undecided. Following the community meetings, OHD staff held discussions on the balance in health services between length and quality of life, and they distilled the priorities that had been assigned at the community meetings into a set of underlying values. These were summarized as draft public policy principles presented at a second Citizens' Health Care Parliament. Held in September 1988, the second Parliament was attended by a total of 50 delegates, including 24 community meeting participants, 15 delegates appointed by county commissioners, and 11 representatives of citizen groups with an interest in health issues. Delegates held small group meetings for 1-1/2 days on these issues concerning the quality and quantity of life. There followed an eight hour parliamentary session at which draft principles were debated, amended, and approved. The report resulting from the second Parliament, Quality of Life in Allocating Health Care Resources, contains a list of 15 principles for allocating health care services. These cover the purpose of health services, why priorities in health care need to be set, how to set them, and who should set what priorities. The principles acknowledge that resources for health care are limited and have to be balanced against other activities that contribute to quality of life, that priorities in health care need to be set that are consistent with resource limits, and that citizen values—including those of minorities—have to be involved in setting priorities. Efficiency, equity, a high ratio of benefits to costs, and patient involvement in decision-making are also noted as critical (Oregon Health Decisions, 1988). Third Project In its 1989-90 session, the Oregon state legislature considered a series of bills intended to increase basic health care coverage for the state's citizens. One of the bills adopted by the legislature (Senate Bill 935) aimed to increase the number of working people and their families covered through private insurance plans. Another bill (SB 27) aimed to expand eligibility for Medicaid to include all people with incomes below the federal poverty level; previously, only people with incomes to 58% of that level had been covered. The broadening of eligibility was to be achieved by establishing a health resource allocation policy through which a package of basic care would be publicly funded. The chief sponsor of this measure argued that "[t]he primary objective of the Oregon Basic Health Services Act is not merely to provide access to health care, but to actually promote health" (Kitzhaber, 1990). The intent of SB 27 was "to change the debate from who is covered to what is covered" (Kitzhaber, 1990). To enact a prioritization process for health services, the legislation set up a Health Services Commission. The importance of public input in the prioritization process was acknowledged, and the Commission sought this input in three ways: a random survey to determine Oregonians' individual values, public hearings held in eleven cities across the state, and a request that Oregon Health Decisions build consensus on community values through a series of gatherings of citizens throughout the state. The Health Services Commission requested at its initial meeting in September 1989 that OHD initiate a community meetings process. For this purpose, OHD set up a 29-person project advisory committee with representatives from citizen advocacy groups; business, community, and professional organizations; and the Commission (Hasnain & Garland, 1990). In January 1990 training sessions were held for 58 volunteer facilitators and coordinators to conduct statewide local meetings and prepare reports about the meetings. Over 1,000 self-selected Oregonians participated in the 47 community meetings that were held between January and March 1990. Demographic surveys revealed that 90.6% of those attending the community meetings were insured, only 4.4% of them through Medicaid, while 9.4% were uninsured. Interestingly, the values espoused at several meetings with substantially higher proportions of Medicaid-covered and uninsured participants were not significantly different from those expressed at the other meetings. While meetings were scheduled to last for two hours, often they went longer than this. At each meeting, individuals were given informational materials and were seated in small groups of 6-10 participants. After some introductory activities, individuals filled out questionnaires about the types of health care services that were important to them. Group discussions followed, and reports from the small groups were then presented to the whole meeting, from which value consensus was sought. A total of thirteen values were discussed at one or more of the community meetings, but only two of them were brought up at all such meetings: prevention and quality of life. In a distillation of community meeting results, OHD staff specified the meaning of prevention to include three components: illness prevention through immunizations and prenatal care; detection of symptoms at an early stage, as through mammograms and screenings for elevated cholesterol or blood pressure levels; and preventing a problem from degenerating to a more severe state, such as by providing insulin for diabetics or treatment for drug or alcohol dependency. Prevention was valued because it enhances each of the other four top-ranked values. It improves quality of life by increasing emotional well-being, reducing suffering, and increasing productivity, independence, and longevity. It meets the test of cost effectiveness by bringing about positive outcomes at relatively low costs. It enhances the ability to function by empowering the individual, largely through education. And it promotes equity by providing benefits for large numbers of people (Hasnain & Garland, 1990). The findings from this project have become a part of the process of the Health Services Commission in prioritizing the health services that will be offered by Medicaid. At this writing, the methodology for the prioritization process is still being refined, and it is expected to be completed in 1991. References Crawshaw, R (1990). Made in Oregon health decisions. Scribe. Portland: Multnomah County Medical Society, November 19. Crawshaw, R, Garland, MJ, Hines, B, Lobitz, C (1985). Oregon Health Decisions: an experiment with informed community consent. JAMA 254: 3213-3216. Hasnain, R, Garland, M (1989). Health Care in Common: Report of the Oregon Health Decisions Community Meeting Process. Portland: Oregon Health Decisions. Hines, BL (1985). Oregon and American Health Decisions: A Guide for Community Action on Bioethical Issues. Washington, D.C.: Office of Health Planning, U.S. Department of Health and Human Services. Jennings, B (1988). A Grassroots Movement in Bioethics. Hastings-on-Hudson, NY: A Hastings Center Report Special Supplement, June/July. Kitzhaber, J (1990). The Oregon Basic Health Services Act. Salem: Oregon State Senate. Oregon Health Decisions (1988). Quality of Life in Allocating Health Care Resources. Portland: Oregon Health Decisions. Oregon Health Decisions (1985). Society Must Decide: Ethics and Health Care Choices in Oregon. Portland: Oregon Health Decisions. More Information Oregon Health Decisions
921 S.W. Washington, Suite 723
Portland, OR 97205
Phone: 503-241-0744; 1-800-422-4805
fax: 503-241-0323
Paula McNeill, Executive Director.
Michael Garland: 503-494-2554; fax:503-494-4981
e-mail: garland@ohsu.edu.
Center for Ethics in Health Care
Oregon Health Sciences University
3181Sam Jackson Park Road, CB 669
Portland OR 97201-3098.
Dr. Ralph Crawshaw, M.D.: 503-233-8811.
Paige Sipes-Metzler
Executive Director
Health Services Commission Office of Health Policy
Oregon Department of Human Resources
800 NE Oregon St., #23, suite 640
Portland, OR 97232
Phone: 503-731-4058; fax: 503-731-4056. Back to Health Index |
