Opting out of dialysis - Exploring patients' decisions to forego dialysis in favour of conservative non-dialytic management for end-stage renal disease

Background Dialysis prolongs the life of people with end-stage renal disease (ESRD), but for patients who are elderly and suffer multiple comorbid illnesses the benefits of dialysis may be outweighed by its negative consequences. Non-dialytic conservative management has therefore become an alternative treatment route, yet little is known on patients' experience with choosing end-of-life treatment. Aims To gain insight into the decision-making process leading to opting out of dialysis and the experience with conservative non-dialytic management from the patients' perspective. Design Qualitative study using semi-structured interviews. Interpretative phenomenological analysis was undertaken as the framework for data analysis. Setting/Participants N = 9 ESRD participants who have taken the decision to forego dialysis were recruited from the advanced care programme under the National Healthcare Group, Singapore. Results Participants discussed life since ESRD diagnosis, and the personal and contextual factors that led them to choose conservative management. The perceived physical and financial burden of dialysis both for the individual but most importantly for their family, uncertainty over likely gains over risks which were fuelled by communication of negative dialysis stories of others, coupled with sense of life completion and achievement led them to refuse dialysis. All participants took ownership of their decision despite contrary advice by doctors and were content with their decision and current management. Conclusions Study highlights the factors driving patients' decisions for conservative non-dialytic management over dialysis to allow medical professionals to offer appropriate support to patients through their decision-making process and in caring them for the rest of their lives.