A critical realist evaluation of end of life care in care homes.

Abstract

Numbers of advance care plans and unnecessary admissions to hospital at the end of life are outcomes commonly used to determine the quality of end of life care in UK care homes. However, there is currently a sparsity of research systematically exploring the underlying processes behind these outcomes. This gap in knowledge has limited the effectiveness of interventions designed to improve end of life care in care homes. The study aim was therefore to inform the design and development of interventions capable of supporting the delivery of high-quality end-of-life care in UK care homes. A two-phased study design utilising Critical Realist Evaluation was used to address this gap in knowledge and achieve the study aim. Qualitative data was collected (using focus groups and semi-structured interviews) from three care homes in the South West of England from participants comprising of registered nurses, non-registered care home staff and bereaved relatives. Findings highlighted variable quality of advance care planning discussions in care homes. It was found that the current educational focus on gathering information, combined with some care home staff’s emotional reluctance to discuss death and dying, and a taboo culture within the commercial sector associated with death and dying impacted on the quality of advance care planning discussions. Moreover, findings identified several underlying factors which may contribute to unnecessary admissions to hospital at the end of life from care homes. It was apparent that some care home staff’s emotional attachments to residents, a sparsity of support during out of hours shifts, and a lack of interventional support could contribute to the likelihood of unnecessary admissions at the end of life. This situation was further influenced by relatives. Some relatives’ difficulties accepting a different identity when their caring role ceases and then when bereaved was found lead to conflict and relatives wanting to prolong their loved one’s life. The findings were used to develop intervention theories which provide recommendations for practice accounting for the diverse social, economic and organisational contexts of care homes in their design. These intervention theories provide the foundational components and rationale for the development of an evidence based multicomponent end of life care intervention; however, the development and evaluation of this intervention requires further research.