André Fringer

Voluntary stopping of eating and drinking (VSED) in Switzerland from different points of view: mixed-methods study protocol (Preprint)

BACKGROUNDnTo die with dignity has reached the significance of a core value in democratic societies. Based on this unconditional value, people require autonomy and care. Voluntary stopping of eating and drinking (VSED) represents an alternative to assisted suicide because no one else is involved in the action of death fastening, even though from outside, it might be considered as an extreme form of passive euthanasia. However, there are no data available about the prevalence and frequency of either explicit VSED or the implicit reduction of food and liquid in Switzerland. The responsible and independent ethics committee of the Greater Region of Eastern Switzerland (EKOS 17/083) approved this study.nnnOBJECTIVEnThe objectives of the study were to research the prevalence and frequency of different types (implicit and explicit) of VSED in Switzerland; to explore the experiences, attitudes, handling and recommendations made by palliative care experts; to develop a practical recommendation about VSED, which will be validated by experts in Delphi rounds.nnnMETHODSnThis protocol describes a convergent mixed-method design to answer the research questions. In the first step, a cross-sectional trilingual survey (in German, French, and Italian) will be carried out to obtain a comprehensive representative picture of VSED in Switzerland. In the second step, qualitative research will be carried out by focus group interviews with palliative care experts. The interviews will be recorded, transcribed, and analyzed using generic coding, and embedded in an explorative descriptive qualitative approach. Based on the results of the first two steps, a practical recommendation will be developed. Experts will validate the practical recommendation in Delphi rounds.nnnRESULTSnThe enrolment was completed in summer of 2018. Data analysis is currently underway and the first results are expected to be submitted for publication in the end of 2019.nnnCONCLUSIONSnThe results of this study will provide important information about the prevalence and frequency of VSED as well as the interpretation of palliative care experts about handling VSED in daily work. Furthermore, the practice recommendation will help professionals and institutions to improve the quality of care in patients and their relatives who made the decision to fasten death by VSED.nnnINTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID)nDERR1-10.2196/10358.

Voluntary stopping of eating and drinking (VSED) as an unknown challenge in a long-term care institution: an embedded single case study

BackgroundChronically ill persons experience conditions of life that can become unbearable, resulting in the wish to end their life prematurely. Relatives confronted with this wish experience ambivalence between loyalty to the person’s desire to die and the fear of losing this person. Caring for a person during the premature dying process can be morally challenging for nurses. One way to end one’s life prematurely is Voluntary Stopping of Eating and Drinking (VSED).MethodsThis embedded single case study explored the experiences of registered nurses (embedded units of analysis: ward manager, nursing manager, nursing expert) and relatives who accompanied a 49-year-old woman suffering from multiple sclerosis during VSED in a Swiss long-term care institution (main unit of analysis). By means of a within-analysis, we performed an in-depth analysis of every embedded unit of analysis and elaborated a central phenomenon for each unit. Afterwards, we searched for common patterns in a cross-analysis of the embedded units of analysis in order to develop a central model.ResultsThe following central concept emerged from cross-analysis of the embedded units of analysis: As a way of ending one’s life prematurely, VSED represents an unfamiliar challenge to nurses and relatives in the field of tension between one’s personal attitude and the agents concerns, fears and uncertainties. Particularly significant is the personal attitude, influenced on the one hand by oneˊs own experiences, prior knowledge, role and faith, on the other hand by the VSED-performing persons age, disease and deliberate communication of the decision. Depending on the intention of VSED as either suicide or natural dying, an accepting or dismissing attitude evolves on an institutional and personal level.ConclusionsTo deal professionally with VSED in an institution, it is necessary to develop an attitude on the institutional and personal level. Educational measures and quality controls are required to ensure that VSED systematically becomes an option to hasten death. As VSED is a complex phenomenon, it is necessary to include palliative care in practice development early on and comprehensively. There is a high need of further research on this topic. Particularly, qualitative studies and hypothesis-testing approaches are required.