Case-Based Clinical Ethics Support - A Description and Normative Discussion of Methodological Issues from the Swedish Perspective.

Clinical Ethics Support (CES) includes various forms of systematic support to deal with ethical challenges in healthcare and case-based CES (C-CES) is used for CES in particular cases. The aim was to describe and normatively discuss organizational and methodological aspects of C-CES used in Swedish healthcare. A mixed-methods approach was used. A descriptive survey was answered regarding eight organizations on hospital, regional and national level, with large variations in the number of conducted C-CES activities. Data were compiled and frequencies calculated. Based on the survey results, normative questions were formulated. Six participants, with expertise of C-CES, participated in a normative group discussion. Field notes and transcribed data were analysed qualitatively. The top ranked goal of C-CES was "Supporting decision making". Mainly prospective cases were used and C-CES was carried out as un-planned and pre-planned sessions. The normative results showed the importance of avoiding making C-CES unattractive to clinicians, for instance by keeping the time frame. The professional backgrounds of C-CES leaders varied greatly and arguments were provided for the facilitating role and that C-CES leaders ought not facilitate where they have been clinically engaged. Identified challenges included variations in uptake of C-CES activities that do not mirror the ethical challenges of the context. The unfair uptake of C-CES can be compared with the uptake in Norway where there are legal requirements for CES. In this study patients and families were not reported to request or attend C-CES. Thus, further research and interventions are needed to ensure their representation in Swedish C-CES.