Att uthärda det outhärdliga. Närståendes erfarenheter av dödförklaring med direkta dödskriterier

Abstract

Studies have demonstrated that close relatives find it difficult to understand the concept of brain death (BD), and to consider a human being as dead while the body continues to breathe. The information about BD can give rise to uncertainty and stress for the close relatives. Consequently, close relatives of the BD patient have been described as a family in crisis. The aim of this thesis is to illuminate the meaning of the close relatives experiences of being in and being confronted with a situation where BD is established. Both quantitative and qualitative methods were used. A retrospective study of medical records was carried out in order to elicit background data regarding the BD patient. A methodological study analysed the viability of using the narrative as a research method within nursing care. The narrative interview was chosen for studying the meaning of the personal experiences of close relatives who have experienced a situation of BD, and phenomenological hermeneutics were chosen for the interpretation of the narratives. The results showed that BD made up one in ten cases of death in the intensive care units studied. The patients fell suddenly ill, the majority died within 48 hours, and in 50% of cases a request for organ donation (OD) was made, 2/3 of which were granted. Only 1/3 of the close relatives were aware of the wishes of the deceased with regard to OD. The audio-taped narratives were interpreted with regard to their phenomenological hermeneutical content. Analysis of the plots contained in the narratives resulted in five themes: lack of preparedness; contradictory experiences of encounters with the carers; feeling abandoned; the missing farewell; living and working through the grief. Analysis of narrative sequences produced four main themes: the disquieting event; the uncertain vigil; the arduous struggle; and the difficult road ahead. Analysis of metaphors for BD showed a) two dimensions of the patient's body: presence and divisibility, and b) six themes: experiencing a chaotic unreality; experiencing an inner collapse; experiencing as a sense of forlornness; clinging to the hope of survival; being reconciled with the reality of death; and receiving caring which gives comfort. The comprehensive understanding was that the close relatives are struggling to be able to endure what is basically an unendurable situation. Unendurable by being impossible to endure, understand or accept. The close relative's struggle to endure is discussed in relation to selected theories on suffering and nursing care.