Renal dialysis abatement: lessons from a social study

Abstract

Aim: This study aimed to examine the reasons why some people chose to abate (i.e., stop or not start) renal dialysis, together with the personal and social impact of this decision on the person concerned, and/or their families. Method: A qualitative design based on the principles of Grounded Theory was employed. Semi-structured interviews were conducted with sixteen patients and/or carers (depending on whether the patient was able to be interviewed) where the issue of dialysis abatement was being considered, or had recently been decided. Results: Of 52 participants considered for entry into the study 41 were ineligible, with impaired cognition, rapid medical deterioration, and inability to speak sufficient English being the main reasons for exclusion. The desire not to burden others and the personal experience of a deteriorating quality of life were crucial elements in the decision to stop or decline dialysis. The problem of prognostic uncertainty and a sense of abandonment were also prominently expressed. Conclusions: From this small Australian sample, it appears that there would be considerable potential benefit from a more proactive and open approach to end-of-life issues, with incorporation of the clinical and health promoting principles of palliative care into renal dialysis practice. The high number of exclusions shows how sick and unstable this population of patients is, but the issue of data gathering from people whose main language is not English requires attention.