Medical futility procedures: what more do we need to know?

Unilateral medical futility policies, which allow health-care providers to limit or withdraw life-sustaining treatment over patient or surrogate objections, are increasingly designed around a procedural approach. Medical or ethics committees follow a prespecified process, the culmination of which is a justified decision about whether ongoing treatment should be withheld or withdrawn. These procedures have three stages. First, health-care providers must decide to refer patients for consideration of whether ongoing treatment is futile. Second, the committees involved must decide whether ongoing treatment is actually futile. Third, there is a clinical outcome that often is, but not always, patient death. We review the available data on procedure-based futility policies, arguing that there is limited information on their potential harms and how these harms are distributed. We consider the ethical implications of policy-making under informational uncertainty, invoking the precautionary principle--in the absence of clear data, if a policy has significant risk of significant harm, the burden of proof that it is not harmful falls on those recommending the policy--as the guiding moral standard for hospitals and professional organizations considering whether to adopt a procedural approach to medical futility. On the basis of this principle, we argue that any new futility guideline must include a significant commitment to collecting prospective data on its application.