What Is Shared in Shared Decision-Making? Sustaining Care Without Consensus
Abstract
Hospice admission is often framed as a model of shared decision-making (SDM) at the end of life, yet disagreement can persist even after decisions are made. In South Korea, hospice care is governed by statutes prioritizing patient self-determination while remaining deeply embedded in expectations of family involvement and filial responsibility, complicating what is “shared” when hospice itself carries divergent meanings. Drawing on seven months of ethnographic fieldwork in a university-affiliated hospice ward in Seoul, including participant observation and interviews with patients, relatives, and healthcare professionals, this study examines two purposively selected cases of advanced cancer in which hospice decisions were repeatedly contested by family members. Disagreement centered not only on treatment preferences but on competing meanings and futures associated with hospice admission. Decision-making persisted post-admission as professionals adjusted conversations regarding dying and end-of-life preparation. Authority was relationally distributed, with claims grounded in embodied suffering, caregiving labor, financial responsibility, familial obligation, and professional expertise. These findings suggest that hospice SDM involves not merely achieving consensus, but also sustaining care amid enduring disagreement and negotiating relational authority when consensus remains unsettled.