Strengthening the Knowledge Base for Decisionmaking

Better scientific knowledge will neither prevent nor resolve all debates and disputes. For example, in the Baby K case mentioned earlier, clinical facts were not central to the mother’s insistence on repeated resuscitation of her infant with anencephaly. Likewise, as discussed in Chapter 6, efforts to synthesize scientific knowledge in the form of guidelines for clinical practice are important but implementation of guidelines cannot be assumed in the face of contrary institutional, financial, and cultural influences (Rushton and Brooks-Brunn, 1997).

Nonetheless, doing good is easier when practice is guided by research demonstrating what works and what does not work to produce desired outcomes—whether those outcomes are cure for a disease or relief from suffering. Scientific research can also help defuse some controversies by challenging contradictory factual premises (explicit or implicit) on different sides of a dispute.

For example, in the United States, the 1980s saw considerable discussion of the appropriateness of correcting physical defects in newborns with significant mental retardation and other severe physical deficits. In one notable case, after parents would not approve surgical repair of a correctable defect in a child with Down syndrome and after a judicial challenge to their decision failed, politicians responded with the so-called Baby Doe regulations, toll-free telephone hotlines for people to report similar cases, and subsequent legislation to require treatment of handicapped newborns except in specified situations (see, e.g., Pless, 1983; Lantos, 1987; AMA, 1992; Weir, 1992; Caplan et al., 1992). Since this episode, research has indicated that many affected infants have a better prognosis than clinicians and parents previously assumed (Teddell et al., 1996; State et al., 1997; Amark and Sunnegardh, 1999). That is, the infants often have reasonably good prospects for many years of dependent but apparently enjoyable life.

Clinical practice guidelines or protocols represent one focused system-level strategy to create a credible, authoritative, evidence-based framework to guide individual patient care decisions (IOM, 1990a, 1992). Procedures vary in rigor and credibility, and methods for developing guidelines continue to be debated and refined. Generally, the more rigorous processes for guideline development bring together clinicians, methodologists, and sometimes consumers, ethicists, and others to define the issues at stake, identify and evaluate relevant scientific evidence or facts, and set forth statements about appropriate care that are based on an explicitly described combination of evidence, clinical judgment, and values.

Recent international guidelines on cardiopulmonary resuscitation, for example, assessed a considerable body of research that attempts to link resuscitation outcomes (e.g., survival to hospital discharge, neurological

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