Background It remains difficult to accurately predict when palliative and end of life care should be offered in non-malignant disease with stroke patients often experiencing a high prevalence of palliative care needs, including symptoms, when nearing the end of their life.
Methods This study took a predominantly evocative autoethnographic approach and draws together the experiences of both researcher and bereaved family members of patients cared for within an acute stroke ward. A Sonata Framework created for this study comprised four parts with an additional beginning (prelude) and ending (coda). Its structure mirrors the narrative and duration of the onset of the researcher’s experiences following his mother’s stroke, hospital care and discharge home to die. In addition, six adult primary relatives of patients who died in hospital following an acute stroke were interviewed using a 16 question semi-structured interview schedule.
Results Data from six participants was analysed using Attride-Stirling’s Thematic Model (2011) and presented utilising two themes: The Family Experience and Dying & Death. Findings suggested shortfalls in the provision of palliative and end of life care following acute stroke, although areas of good practice were identified. Overall, participants were complimentary of the care provided to their family member although the transition from acute to palliative was variable. The quality of communication between patients, relatives and staff was variable, with no evidence of engagement with the hospital palliative care team, nor any discussions instigated by staff relating to preferred place of death.
Conclusions This study provided evidence of some improvement in local palliative and end of life care provision when compared with previous research, although gaps in such provision still exist. Staff should receive palliative and end of life care training, including communication skills training to identify individuals who may be nearing the end of life and to instigate timely conversations with their family members. Further research relating to the provision of palliative and end of life care for individuals following an acute stroke is recommended.
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