‘it was as if the dots hadn’t been joined up’: Bereaved families’experiences of end of life care in acute stroke wards: a qualitative investigation [Abstract]

Background and Aims: Despite significant improvements in survival, severe stroke remains a major cause of mortality. Acute stroke settings have a key role at the end of people’s lives following a severe stroke. Ensuring appropriate, timely, high quality, person-centred, safe and effective end-of-life care in these settings is a professional priority. This study aimed to illuminate bereaved family members’ experiences of end-of-life care in an acute stroke setting following implementation of an end-of-life care training intervention. Methods: A qualitative exploratory study using in-depth, semi-structured, face to face, digitally recorded interviews was conducted. Nine bereaved (> three months) family members, all women, participated. Interviews were fully transcribed and analysed using thematic analysis. Results: The analysis identified three major themes: the variable nature and quality of interaction with healthcare staff; doing care at the end of life and toward the realisation of a certain manner of good death. Findings illuminated some positive end-of-life care practices following a severe stroke in terms of recognising dying and family members’ support, care and engagement in decision-making. However, a pressing need for improved, timely, proactive and regular interaction with family members of people dying imminently in the acute stroke care setting was identified. Conclusions: End-of-life stroke care in the busy, noisy, fast paced acute hospital environments is not without challenge for many reasons. Furthermore, interacting with the family members of imminently dying people is delicate, difficult territory. Yet these are places where people die and the manner of a person’s dying casts an indelible mark on those who live on