The Baby Doe Regulations and Tragic Choices at the Bedside: Accepting the Limits of 'Good Process'
25 Pages Posted: 28 Apr 2010
Date Written: April 27, 2010
What is the significance of the Baby Doe Regulations, regulations that have now been on the books for a quarter of a century? Catalyzed by the well-publicized death of a Down's syndrome baby whose parents declined routine intestinal surgery, the Regulations remain a subject of debate. Alternately portrayed as protective civil rights legislation for the handicapped and a ruinously meddlesome effort to constrict quality-of-life determinations for gravely ill newborns, the Regulations add to our ongoing deliberations regarding the concept of futility in medicine. Promulgated in 1985, the Regulations (subject to certain exceptions) threaten the withholding of federal funds if physicians treating infants less than one year of age "[fail] to respond to the infant's life-threatening conditions" with treatment which, "in the treating physician's ... reasonable medical judgment" are "most likely to be ... effective in ameliorating or correcting all such conditions." The American Academy of Pediatrics and other commentators have interpreted the Regulations to allow for the exercise of clinical discretion. Critics counter that textual hints of flexibility are misleading. The rule's language, they argue, reveals a pro-life imperative that allows for little in the way of individualized, contextual decision-making.
But, from a conflict resolution perspective, the constricting nature of the Baby Doe language hardly matters. Had the regulations been written in more nuanced fashion, the practical import of the text would likely remain the same. Because we are unable to inject substantive content into the concept of futile care, the conventional wisdom holds that all that is left to us is "good process." Attention has thus turned to alternative dispute resolution procedures as a means of coping with the clash of expectations at the bedside. When patients insist on care that clinicians deem futile, mediation is thought ideally suited to bring parties to a middle ground. Anchored in precepts of procedural justice and disputant self-determination, "the talking cure" is considered the best tonic to calm inflamed passions and bring warring parties to a peaceable end-point.
The truth, however, is that mediation's procedural power rests, in part, on the substantive content of background legal and ethical norms. Mediation is a procedural echo chamber reflecting regnant legal norms. For those who believe that providing treatment to hopelessly ill newborns is bad medicine, mediation will prove a disappointing palliative. In disputes where the family is driven by magical thinking or the conviction that life in its most compromised forms must be prolonged, mediation will do little to moderate their demands. And physicians, because they are risk-averse and feel disadvantaged in the litigation setting, are unlikely to press their case.
This essay seeks to rescue mediation from the threat of inflated expectations. Part I begins with a brief description of the mediation process and the mediator's role in encouraging settlement. Part II takes up mediation in the context of futility disputes, detailing what can reasonably be achieved, while pointing out limits. The essay concludes with two final points. First, relying on "good process" when clinicians and families disagree elides, but does not erase, the substantive decisions that result. Resort to mediation in many cases reflects a back-handed award of decisional authority to families and continued investment in care that cannot cure and technology that cannot heal. This may be the substantive outcome we want, but we should acknowledge the choice. Second, if we acknowledge our normative choices, then perhaps we can revisit our earlier "Hail Mary pass" from substance to process. Unmasking the "tragic choices" hidden under cover of "good process" may prompt us to reinvigorate our quest for a workable definition of futility. Better to forge ahead with this work then obfuscate the choices we do make and set mediation up as the "fall guy" for a problem not of its making.
Keywords: Baby Doe regulations, end-of-life decisions, disability rights, handicapped newborns, infant medical care, mediation, talking cure, tragic choices
JEL Classification: K10, K40
Suggested Citation: Suggested Citation