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.