Suspension phenomenon: end-of-life care-seeking behavior of patients

Abstract The “suspension phenomenon” describes terminally ill patients caught in limbo within the end-of-life care system, uncertain where to seek appropriate treatment. While Western literature has problematized the binary of home vs. hospital deaths, such framing remains underexplored in Asian contexts. We aim to examine how and why patients and families in China make decisions about the place of end-of-life care and death, and to identify the barriers and facilitators that shape access to different care settings, using qualitative content analysis of death narratives. Semi-structured interviews were conducted with 225 bereaved family caregivers across multiple sites in China, using a Voluntary Cooperative Network Research approach that mobilized multidisciplinary volunteer researchers. Six decision-making approaches were identified: respecting patient preference, pursuing survival, resisting medical authority, prioritizing symptom relief, fulfilling filial duty, and consulting informal medical networks. Seven barriers contributed to suspension: mistrust in local services, financial hardship, facility rejection, inadequate palliative provision, non-disclosure to patients, dilemmas around medical technologies, and COVID-19 disruptions. Five care-seeking patterns emerged: aggressive rescue, intensive caregiving, returning home to die, treatment abandonment, and pursuit of a “good death.” Findings challenge normative assumptions about place of death, revealing how sociocultural, economic and technological factors shape end-of-life trajectories in contemporary China.