Das Tabu im PEG-Ereignis : die Anwendung langfristiger Sondenernährung bei Menschen mit Demenz in der stationären Langzeitpflege

Abstract

Background: Decision making by proxy regarding health care treatment for family members is often accompanied by uncertainty and distress, especially considering the tube feeding treatment in cases of advanced dementia. Objective: To develop a deep understanding about what is going on during surrogate decision making. Methods: The analysis of weighty decision making by proxy for residents with dementia was conducted using the grounded theory approach, retrospective design as well as nursing process documents and overall 31 interviews with authorized family members, physicians and nursing staff. Results: According to the findings, there is commonly a lack in the health care proxies area of competence and a lack of knowledge about the tube feeding treatment. Family members do not know how to determine the individual preferences of their relative. Normally, there is no informed consent. Proxies perceive the process as deciding over the life and death of their loved one. In addition, family members are greatly affected by the health care staff`s influence, especially when they are under serious time pressure. Conclusion: Family members require competences in decision making, otherwise the notion of the patient in question starving to death strengthens the moral aspect and further raises the taboo regarding death, in this case regarding perceived neglect.