Abstract
There has been an increasing recognition over the last ten years of the importance of integrating palliative care alongside other aspects of care for people with life-limiting illness including kidney disease. Over the same time period, policy initiatives have aimed to address and improve the end of life care for all adults with kidney disease. However, little is known about the transitions experienced by people with end-stage kidney disease (ESKD) as they approach the end of life. This qualitative study explored the transitions experienced by people with ESKD as they approached the end of their lives. A constructivist grounded theory methodology was used, and unstructured interviews were conducted with twelve people living with ESKD who were deemed to be approaching the end of their lives. The interview data were analysed and interpreted using the constant comparative method. The core category of ‘restructuring reality’ emerged from the data analysis alongside three dynamic, interrelated conceptual categories and the subcategories within these. These conceptual categories were: ‘striving to maintain autonomy and control in decision making’, ‘managing uncertainty: knowing without clarity or confirmation’, and ‘the importance of personal virtues in transitioning through the illness’. The substantive theory which emerged from the data analysis and which conceptualised the process and experience of transition for people with ESKD in this study was defined as 'the restructuring of reality during transition for people with ESKD approaching the end of life’. The study findings provided valuable insight into the experience of people with ESKD as they approach the end of their lives. The tentative theory presented in this study added to the knowledge of the transitions experienced by people with ESKD as they approached the end of their life. The theory captured how participants made sense of and adjusted to the changes they experienced as their health deteriorated; it emphasised that being able to continue to contribute and be involved in decision-making about care was an important aspect of the transition process as people approached the end of their lives. The study findings also highlighted the importance of healthcare professionals undertaking end of life discussions with patients throughout their illness trajectory to ensure people with ESKD are afforded the opportunity to be involved in timely decision making and provided with good quality end of life care.