Dignity in end-of-life care in Emergency Departments. A qualitative study on families and patients (Research Project FFI2016-76927-P-AEI/FEDER, UE)

Abstract

Background/aims: In the absence of palliative care hospital units and home palliative care services, many patients with far-advanced diseases resort to emergency departments for end-of-life care. The objective of this study was to understand the perceptions of patients with faradvanced diseases and their families about care received when they go to hospital emergency departments seeking palliative care. Methods: A qualitative phenomenological study was designed. Data collection included both participant observation in Hospital Emergency Departments and in-depth interviews with 25 patients with far-advanced diseases who attended Hospital Emergency Departments. Data analysis: field notes and transcriptions of interviews were added to an hermeneutic unit. Then, an inductive analysis was carried out using ATLAS.ti software to extract emergent themes. Results: From the analysis, three categories were extracted. (1) “Feeling abandoned, hopeless, and misunderstood”, participants feel that they are unimportant or that there is no solution for their situation, in units that are destined to “save lives” or solve problems. (2) “Absence of communication and clinical information”, patients perceive misinformation about the diagnosis and their condition, feeling isolated and cut off from professionals and even their own families; (3) “Undignified care”, defined by feelings of loneliness (lack of company), lack of professional empathy, lack of intimacy, depersonalisation, fear and feelings of neglect. Conclusions: Patients with far-advanced diseases perceive that care in hospital emergency departments is characterised by neglect, deficiencies in information and clinical communication, and the absence of empathetic care. All of this adds to the perception of loss of dignity in end-of-life care in emergency departments.