Patient and health care professional decision-making to commence and withdraw from renal dialysis: A systematic review of qualitative research

Background and objectives. To ensure decisions to start and stop dialysis in end stage kidney disease are shared, the factors that affect patients and healthcare professionals in making such decisions need to be understood. This systematic review aims to explore how and why different factors mediate the choices about dialysis treatment. Design, setting, participants, and measurements. Medline, Embase, CINAHL and PsychINFO were searched for qualitative studies of factors that affect patients’ and/or healthcare professionals’ decisions to commence or withdraw from dialysis. A thematic synthesis was conducted. Results. Of 494 articles screened, 12 studies (conducted: 1985-2014) were included. These involved 206 predominantly haemodialysis patients and 64 healthcare professionals (age range: patients 26-93; professionals 26-61 years). (i) Commencing dialysis: patients based their choice on ‘gut-instinct’ as well as deliberating the impact of treatment on quality-of-life and survival. How individuals coped with decision-making was influential, some tried to take control of the problem of progressive renal failure, whilst others focussed on controlling their emotions. Healthcare professionals weighed-up biomedical factors and were led by an instinct to prolong life. Both patients and healthcare professionals described feeling powerless. (ii) Dialysis withdrawal: Only after prolonged periods of time on dialysis, were the realities of life on dialysis fully appreciated and past choice questioned. By this stage however patients were physically treatment dependent. Similar to commencing dialysis, individuals coped with treatment withdrawal in a problem or emotion-controlling way. Families struggled to differentiate choosing versus allowing death. Healthcare teams avoided and queried discussions regarding dialysis withdrawal. Patients however missed the dialogue they experienced during pre-dialysis education. Conclusions. Decision-making in end stage kidney disease is complex, dynamic, and evolves over time and towards death. The factors at work are multi-faceted and operate differently for patients and health professionals. More training and research on open-communication and shared decision-making is needed