When Ubiquitous Health Data Stops Helping: Patients'Experience of Breakdowns in the Data-Interpretation-Action Loop at the End of Life
TL;DR
Data exposure is situate as a central interaction problem in end-of-life ubiquitous computing and design implications for interpretive stability, care-context alignment, and existential support are derived.
Abstract
Ubiquitous computing systems in healthcare often assume that greater data visibility improves awareness, interpretation, and action. In end-of-life care, however, this assumption warrants scrutiny. Through semi-structured interviews with 25 terminal-stage patients as primary informants and 8 clinicians as supplementary informants, we examine patients'descriptions of how they encountered, interpreted, acted on, and disengaged from state signals, trajectories, algorithmic outputs, and behavioral audits. Our analysis identifies three recurrent patterns in these descriptions. First, participants described repeated and unresolved sensemaking when visible data lacked explanatory pathways. Second, they described outputs they could understand but whose suggested actions did not fit their changing bodily capacities, care goals, or decision-making roles. Third, they described difficulty disengaging when data remained embedded across care environments. Rather than rejecting data altogether, patients called for less data exposure and a reorientation toward existential support. Based on this analysis, we situate data exposure as a central interaction problem in end-of-life ubiquitous computing and derive design implications for interpretive stability, care-context alignment, and existential support.
