Phenomenology of agony: A qualitative study about the experience of agony phenomenon in relatives of dying patients

Abstract

Background: This study considers the specific context of the end of life, in particular the agony phase, and the experience of sharing the body observation competence with the relatives of dying patients, in order to consider the effect of such psychological intervention. Methods: The research was conducted in two phases: During the pre-exitus period (days or hours before the death of the patient) six relatives received some information.on the phenomenology of agony; during the post-exitus, they participated in semi-structured interviews, which were audio-recorded and transcribed with the purpose of extracting relevant aspects of their experience with their terminally-ill relative. The Interpretative Phenomenological Analysis (IPA) was used to cluster the emerged experiences by thematic analysis, which was performed using the Atlas.ti 7 software. Results: The relatives’ verbatim representation is clustered in three areas of thematic prevalence: context and choice of the hospice, phenomenology of agony and psychological support. The first area shows how essential the choice of the hospice was for the patient. Even if the hospice is perceived as a place of death, it allows to manage the pain and simultaneously relieves the caregiver’s burden. The second area describes the process of perception of body changes during agony. Finally, the third area outlines how giving elements to recognise the progression of the dying body and suggestions on the functional behaviour around the agonising patient may fill the cultural lack of practical experience regarding dying. Conclusions: The results require further investigation, starting from the positive feedback on the efficacy of a specific support model called “human protocol”.