Patients' perceptions of dialysis initiation, prognosis and end‐of‐life issues: a single‐centre, cross‐sectional study

BACKGROUND: Shared decision-making is recommended for dialysis initiation and withdrawal, but patients receiving dialysis may have a limited understanding of prognosis and future care options. AIM: To examine patients' perceptions of dialysis initiation, prognosis, dialysis withdrawal and end-of-life discussions in an Australian renal unit with an established kidney supportive care service and conservative kidney management pathway. METHODS: We conducted a single-centre, cross-sectional questionnaire study of adults receiving maintenance dialysis at a tertiary renal unit in Sydney, Australia, between February and September 2021. The questionnaire explored perceptions of dialysis decision-making, prognosis, dialysis withdrawal and end-of-life communication. RESULTS: Of 216 eligible chronic dialysis patients, 46 (21%) completed the questionnaire. The median age was 71 years, and the median dialysis duration was 3 years. Regret regarding dialysis initiation was uncommon. However, many participants appeared to overestimate prognosis, fewer than half recalled a discussion about prognosis with their doctor, and most wished to be informed if their life expectancy were short. Most participants were also receptive to discussions about end-of-life issues and considered dialysis withdrawal acceptable in health states associated with severe cognitive or physical impairment or terminal illness. CONCLUSIONS: In this unit, decisional regret regarding dialysis initiation was low, but limited understanding of prognosis remained evident. Most participants were receptive to discussions about prognosis, end-of-life issues and dialysis withdrawal. These findings support the need for clearer and more proactive communication about prognosis and future care preferences in patients receiving dialysis.