Healthcare professionals' documentation in nursing homes when caring for patients with dementia in end of life – a retrospective records review

Aims and objectives To investigate how end‐of‐life care was described by healthcare professionals in records of deceased persons affected by dementia who had lived in Swedish nursing homes. Background In the final stage of dementia disease, the persons are often cared for at nursing homes and they often die there. The research concurs that a palliative approach to end‐of‐life care is essential but there are still some limitations regarding research about what constitutes the end‐of‐life care provided to persons affected by dementia in Sweden. Design Descriptive qualitative method with a retrospective approach. Method Nursing records (n = 50) and medical records (n = 50) were retrospectively reviewed in two nursing homes. The analysis was conducted using deductive and inductive content analysis. Three phases of The Liverpool Care Pathway; Initial assessment, Continuous assessment and Follow‐up, were used deductively to first sort the text in the records, then the text in each phase was further analysed with inductive content analysis. Four categories and 11 subcategories described the content in the records. Results The end‐of‐life care was described in the healthcare records based on such categories as decision‐making, participation and communication, assessment and prevention of symptom and following up after the residents had died. Conclusion Paticularly, physical symptoms were documented and, to a lesser degree, psychological or existential/spiritual needs. Relevance to clinical practice Healthcare professionals must have a holistic view of the person affected by dementia during the end‐of‐life care and, according to this study, more focus must be placed on their psychosocial and existential needs in the documentation of end‐of‐life care.