A normativity mapping review on end-of-life care in long-term care institutions by authors from Germany, Austria, and Switzerland

Abstract

This article presents the findings of a “normativity mapping review” designed to make visible the breadth of normative understandings at work within interdisciplinary scholarship on end-of-life care in long-term care institutions. The scope of the literature was limited to peer-reviewed articles authored by scholars affiliated with institutions in Austria, Germany, and Switzerland. Terms and slogans associated with the hospice movement were used as keywords to search for literature in both German and English. During data analysis, values, frameworks, and actions were systematically extracted from the articles. Actions were then clustered into four groups: one involving actions aimed at planning future end-of-life decision-making; another focused on transforming cultures of care; a third encompassing end-of-life practices; and a fourth consisting of residual actions. A comparison of two of these groups shows that normative understandings of end-of-life care in long-term care institutions take shape around two poles—a procedural pole, involving standardised tools that can be used in specific practices to address challenges and improve care, and a substantive pole, centred on the embodied competencies and moral sensibilities of caregivers in realising visions of good end-of-life care.