Do patients receiving hemodialysis regret starting dialysis? A survey of affected patients

Abstract

Aims: End-stage renal disease (ESRD) is associated with high morbidity and mortality. A prior study showed that many Canadian patients regretted their decision to start dialysis. We sought to determine if US patients also regretted dialysis.

Materials and methods: We surveyed hemodialysis patients within 55 miles of Rochester, MN, with a 25-question survey about their perceptions of their health, preparedness for dialysis, advance care planning, and regrets about starting dialysis. Surveys were administered in person at the patients' usual dialysis session from July 1 through December 1, 2014; responses were captured electronically.

Results: Of the 198 eligible patients, 128 participated (70% men); 80% received dialysis for more than 1 year; 38% reported their health and 58% described their quality of life as "good" or "very good"; 51% had started dialysis in the hospital; and 68% agreed they were prepared for what to expect. Only 35% of patients reported being offered supportive care without dialysis. Most patients (82%) recalled a discussion about prognosis. Only 43% completed an advance directive, but 72% thought it was at least "very important" to plan for the end of life. Nine (7%) reported regretting the decision to start dialysis.

Conclusions: Most of our patients were optimistic about their health and prognosis. Few regretted the decision to start dialysis. .