The Futility of Futility: An Analysis of The Charlie Gard Case within the Framework of U.S. Law

Elana Bengualid Harary has just published "The Futility of Futility: An Analysis of The Charlie Gard Case within the Framework of U.S. Law" in the latest issue of the Cardozo Law Review. Here is her roadmap.

Part I of this Note examines the disparate legal frameworks of the United States and the United Kingdom with respect to parental rights. Next, this Part analyzes an infant’s right to have access to experimental treatment for life-prolonging or life-sustaining purposes in the United States. Finally, this Part examines the right to withdraw life-sustaining treatment, exploring the countervailing interests of parents and states. Due to the states’ police powers under the Tenth Amendment to regulate the health, safety, and welfare of its inhabitants, futility statutes vary across states. 

Part II analyzes three distinct approaches: in “red light” states, providers cannot withdraw life-sustaining treatment without parental or surrogate consent; in “yellow light” states, providers must abide by judicial standards when withdrawing life-sustaining treatment; and in “green light” states, providers can withdraw treatment without parental or surrogate consent.

Lastly, Part III of this Note proposes that the ATS’s procedural guidelines for assessing medical decisions in the face of futility should be adopted by all states. The lack of a uniform definition of medical futility results in subjective, value-laden interpretations and vague state policies. This contributes to the inherent flaws apparent in each of the three types of futility statutes in the United States. Although the states are laboratories of experimentation, the Constitution creates a floor for the fundamental right of child-rearing, and current state statutes do not meet this constitutional standard. 

The red and yellow light futility statutes do not afford proper balance between the interests of the state and parents, and the green light futility statutes are overly paternalistic. Accordingly, the guidelines dictate that the word “futile” should only be used in “rare situations in which surrogates request interventions that simply cannot accomplish their intended physiologic goal” and should otherwise be replaced with “potentially inappropriate.” 

This characterization would help remove subjective, valued judgments from the determination of futility and would allow for an effective process-based dispute resolution. Adopting these guidelines would thus help clarify and unify the medical goals at issue so as to best balance the interests of the parent, child, and state.