Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children with (...) refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand. (shrink)

Conflicts involving end-of-life care between healthcare providers (HCPs) and surrogate decision-makers (SDMs) have received sustained attention for more than a quarter of a century, with early studies demonstrating a frequency of HCP-SDM conflict in ICUs ranging from 32–78% of all admissions (Abbott et al. 2001; Breen et al. 2001; Studdert et al. 2003; Azoulay et al. 2009). More recent studies not only acknowledge the persistence of clinical conflict in end-of-life care (Leland et al. 2017), but they have begun to focus (...) on the ways in which these conflicts escalate to verbal or physical violence in the ICU (Slack et al. 2023; Bass et al. 2024; Berger et al. 2024; Sjöberg et al. 2024). I will argue that part of the explanation for the persistence–and even escalation–of ICU disputes is the incommensurable value systems held by many conflicting HCPs and SDMs. I will argue that a common value system among HCPs can be understood as a “Best Interest Values” (BIV) hierarchy, which I will argue is irreconcilable with the set of “Life-Continuation Values” (LCV) held by a sizable minority of families in the United States. I argue this values-conflict undergirds many ICU disputes. If I am correct that an incommensurable value system underlies many ICU conflicts, then it is not just ineffectual for HCPs to impose their BIV system on LCV families, but also wrong given the American commitment to values pluralism. I conclude that the way to navigate continuous ICU surrogate wars is for BIV-focused healthcare institutions to engage more constructively with LCV stakeholders. (shrink)