The death last month of Adam 'Coby' Howard, an 7-year-old Oregon boy whose family couldn't afford $100,000 for a bone marrow transplant, has sparked a fierce debate over state Medicaid policy.
How should a state -- with limited funds -- decide which services are essential for an adequate level of health care and which can ethically be omitted?
Last year, Oregon decided that an equitable system must choose to fund prenatal services rather than organ transplants. The way they are examining that issue -- from the grass roots up -- has significant implications for the rest of the country.
It used to be that issues in medical ethics were addressed only by physicians. Then philosophers, lawyers and social scientists entered the debate, creating the new field of bioethics.
Yet while they argued that society at large -- and not just doctors -- has a stake in resolving difficult medical issues, bioethicists mostly operated within the rarefied world of professional conferences, universities, hospitals and research institutes.
There is certainly a place for "top down" policymaking, and expertise is vital: Sensible answers to difficult questions can't be reached without a good factual base -- not only from clinical medicine but also from science, epidemiology and economics. Still, in the end, a top-down approach has limitations in a field like health care, where the values of all those affected play a major role in shaping the moral framework for public policy.
Bioethical questions usually turn into public issues when researchers come up with a new finding or technology (for example, a drug that would delay the ravages of AIDS or the ability to transplant fetal cells) or when a decision about an individual becomes a cause ce'le`bre (for example, the Karen Ann Quinlan or Baby M cases). The issues are typically described as difficult and controversial, and the "experts" are characterized as uncertain and in conflict.
Given the complexity and disagreement, can ordinary citizens expect to comprehend -- much less resolve -- the issues posed for medicine and society?
The answer is a resounding "yes." A meeting last summer in Princeton, N.J., sponsored by the Robert Wood Johnson and Prudential foundations, brought together about 30 representatives of the groups that have been dealing with these issues at the grass-roots level in more than a dozen states across the country. Through these groups -- with names like "Colorado Speaks Out on Health," Vermont's "Taking Steps: Ethical Decisions for Living and Dying" and "Oregon Health Decisions" -- thousands of ordinary, concerned citizens have examined the ethics and economics of health care over the past four years.
The Princeton meeting revealed the potential for "bottom up" policymaking in this field. In many areas, as Rutgers University political scientist Benjamin Barber noted, citizenship has decayed into nothing more than being a passive observer of the political drama, interrupted by periodic voting for representatives.
A much more vigorous role has been assumed by the people who now actively participate in the "health decisions process," meeting in homes, schools, churches, town halls, even in statewide "health care parliaments." Many people are drawn to the process because of personal experiences in health care. As difficult as the questions about life and death may be, they are not the province only of philosophers, but the stuff of our everyday contact with modern medicine.
In the process, people find out what their values are, and they typically find that those values are widely shared in the community. Individuals may vary in how they decide the specific questions of diagnosis and therapy and how they resolve issues of communication and confidentiality. But they discover significant agreement about the factors that should be taken into account when making a bioethical decision, about the processes to follow in making difficult choices, and about the respect and support they think society should give to those facing these dilemmas.
We need to move toward a societal consensus on the framework for resolving difficult medical issues. Who should control medical decisions: the physician (who knows the most, technically), the family (who knows the patient well and are not directly burdened with illness), the patient, or a party acting on behalf of the patient -- an ethics committee, a judge?
Significantly, most of the groups reported that they had moved from personal health choices to issues of resource allocation at the level of hospital policies and state decisions. Is there a right to health care? If not, by what principles should resources be allocated?
Few politicians today are eager to take on such issues -- they're too divisive and too difficult to resolve. But "ordinary" citizens, recognizing the importance of setting national policies for making hard medical choices, have done exactly that. From their local and statewide forums have emerged clear and decisive statements on health insurance and public health, on ways to balance the interests and welfare of the individual with those of the community, and on many other critical issues. When policy options emerge from the grass roots, the value premises on which they rest -- and the emotional punch behind those values -- tend to be more palpable than when policy is set forth from on high.
In Oregon, the debate over organ transplant funding has thrown a spotlight on the activities of the grass-roots Oregon Health Decisions movement. In town meetings, ordinary citizens are not merely examining this particular decision about Medicaid funding but are also reaching consensus about priorities in health care generally. As John Kitzhaber, president of the Oregon Senate, told me, "If the Health Decisions process hadn't already arisen, we'd have to invent it."
There is no panacea for the all-too-familiar problems of escalating costs, greater impersonality, marginally beneficial technologies and conflicting interests that characterize health care today. But the collective experience of the groups -- from Maine to Hawaii, from Washington to the Carolinas -- leaves no doubt in my mind that discussion, analysis and action originating at the grass-roots level is going to be crucial in arriving at ethically defensible and socially acceptable resolutions.
Alexander Capron is Topping professor of law, medicine and public policy the University of Southern California.