In general, litigation tends to be a costly, disruptive, and unpredictable vehicle for resolving conflicts that is stressful for all parties.

Statutes or administrative regulations constitute a different kind of system-level response to controversies about clinical decisionmaking. The development of statutes or regulations may or may not take scientific evidence into account and may or may not attempt to reflect or create clinical or community consensus about an area of disagreement. For example, state laws about adolescent decisionmaking “form a patchwork quilt of rights and limitations” that neither reflects nor contributes to a coherent view of adolescent capacity to make medical decisions (Oberman, 1996, p. 127).

Oregon offers an example of the rare jurisdiction that set out—not without problems and controversies—to employ careful and explicit strategy to (1) develop community consensus on priorities for medical care; (2) use clinical research and judgment to assess the relative benefits of treatments for common medical problems; (3) cover the most beneficial treatments within predetermined spending levels; and (4) expand health coverage to more people using the savings from reductions in services of marginal or no benefit (see, e.g., Bodenheimer, 1997; IOM, 1997). The priority-setting framework explicitly included comfort care (e.g., hospice, pain management) among the essential services (Cotton, 1992). Oregon’s strategy has provoked continuing political, ethical, and analytic debates as well as legal challenges that have limited its application to and beyond the state’s Medicaid program. State budget problems have limited the move toward universal coverage (see, e.g., Rojas-Burke, 1999). Despite, or perhaps as a result of, the attention paid to the Oregon approach, it has not been replicated by other states.

Debates about rationing care often focus on expensive versus inexpensive health care services. The real issue, however, is not the expense per unit of service but, rather, the expense per unit of benefit (for example, years of life or days free from pain). High-volume services with low unit costs are less dramatic but not necessarily less important than very expensive, low-volume services. Systems must inevitably make trade-offs among alternative ways of using available resources to benefit large groups (their members), and different systems have made different choices. Some of the implicit means of rationing potentially beneficial services rely on price or inconvenience. The next section discusses legal issues related to several kinds of disputes that can arise in the treatment of children.


Although the committee views litigation as a last resort in cases of conflict about care for children with life-threatening medical problems, situations will arise that make recourse to the courts appropriate or un-

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