Reasons Renal Patients Give for Deciding Not to Dialyze: A Prospective Qualitative Interview Study

BACKGROUND: As the population ages, sicker patients often with multiple comorbidities are presenting in renal clinics. Some are deciding not to embark on dialysis. The objective of this study was to gain an understanding of the decision that some patients make not to embark on dialysis. METHODS: Naturally occurring qualitative interviews were conducted with 30 patients and 17 caregivers managed within a Renal Supportive Care Service in an acute NHS Trust in London. RESULTS: Several patients believed they had made an informed and autonomous decision, either on or against the advice of their doctor (n = 17); some felt that they had no option but to refuse dialysis treatment, as it would not have been of benefit and might ultimately cause their death (n = 7); some stated they had decided to opt for medication rather than dialysis 3 times a week and seemed to believe that either option would lead to the same outcome (n = 2), and some felt there had been no decision to be made (n = 4). CONCLUSIONS: Prior to this study, little was known about those who decide not to embark on dialysis and how they make this decision. It cannot be presumed that decisions made by patients are fully understood and free from inappropriate professional or family influence, and the decision needs to be regularly revisited to check patients' and caregivers' understanding and to allow for reversal of the decision if fitting. There is a need to understand how service providers can help to ensure that such decisions are informed and supported by the best available supportive care thereafter.