From fMRI to Family Meeting: Clinician and Family Perspectives on Neurotechnology-Informed Shared Decision-Making in Disorders of Consciousness.

Patients with disorders of consciousness (DoC) characteristically lack decision-making capacity, a central challenge for shared decision-making, as surrogate decision-makers must navigate the uncertainties of making proxy care decisions. The element of uncertainty is especially prominent considering growing recognition of cognitive motor dissociation or covert consciousness, attributable to advances in neurotechnologies that enable the detection of signatures of responsiveness and recovery capacity that evade routine bedside detection. Professional society guidelines now recommend use of advanced neurotechnologies for some patients, marking their transition from investigational into guideline-directed clinical tests. Yet, advanced neurotechnologies themselves introduce uncertainties to the calculus of shared decision-making, particularly given a paucity of guidance on clinical translation. Through semistructured interviews, we examined attitudes of clinicians and family members of patients with potential covert consciousness during three stages of conversation regarding translation of advanced neurotechnologies into DoC practice. Although clinicians described weighing clinical, prognostic, and logistical factors when deciding to introduce advanced testing, most family members regarded clinicians as ethically obligated to offer advanced neurotechnologies in DoC assessment. There was near consensus that results of advanced neurotechnologies must be shared, even in research contexts. The majority of clinicians and family members posited that results of advanced neurotechnologies should be communicated in ways that are sensitive to families' understanding, background, receptiveness to information, and anticipated decision-making role, and they valued transparency regarding the limitations and uncertainties inherent to these modalities. Clinicians placed higher weight on positive rather than negative results. Half of family members reported that results of advanced neurotechnologies impacted care decisions for their loved ones with DoC. Our findings reveal key points of convergence and divergence between clinicians and family members throughout stages of decision-making, grounding an ethically informed discussion guide that clinicians may use as a roadmap to support shared decision-making in this emerging context.