Editors' note: Right Brain: Withholding treatment from a child with an epileptic encephalomyopathy

Abstract

In “Right Brain: Withholding treatment from a child with an epileptic encephalomyopathy,” Drs. Rothstein and Lewis discussed ethical considerations in the case of Charlie Gard, an infant with a mitochondrial DNA depletion syndrome whose parents unsuccessfully lobbied for him to receive an experimental therapy prior to his death in 2017. We received several responses. Dr. Sethi argues that while no effort or expense was spared to save Charlie, it is important to address the challenging but relevant dimension of utilitarian bioethics in the discussion. Similarly, Dr. Janus notes that the costs of such care should be taken into account, given limited health care resources and associated tradeoffs. Dr. Tuck also raises the added potential costs of Charlie's transfer and treatment, invoking the ethical principles of justice and fairness. In response, Drs. Rothstein and Lewis counter that Great Ormond Street Hospital's actions in Charlie's care were to spare expense, effort, and suffering of the child. They argue that economic considerations should not be the only force driving care. While acknowledging the complexity of the ethical arguments in this case, they also contend that the experimental therapy could have been appropriate with respect to the principles of beneficence, nonmaleficence, and autonomy. In “Right Brain: Withholding treatment from a child with an epileptic encephalomyopathy,” Drs. Rothstein and Lewis discussed ethical considerations in the case of Charlie Gard, an infant with a mitochondrial DNA depletion syndrome whose parents unsuccessfully lobbied for him to receive an experimental therapy prior to his death in 2017. We received several responses. Dr. Sethi argues that while no effort or expense was spared to save Charlie, it is important to address the challenging but relevant dimension of utilitarian bioethics in the discussion.