Abstract
INTRODUCTION: Considering that mortality among patients on dialysis is high, it would be advisable for patients, relatives, and care givers to acknowledge that after dialysis initiation for many patients, the last phase in life has begun. We sought to investigate the frequency of precautionary planning directives, contemplation about the end-of-life (EOL) and embedding of patients' wishes in the interaction with relatives and the treating nephrologists. METHODS: In a questionnaire-based interview survey, we investigated the frequency of precautionary planning, EOL wishes, and frequency of relatives' or medical professionals' conversations with patients about those wishes as well as possibly associated demographic, socioeconomic and medical factors. The interviews were conducted by a single investigator in 7 dialysis centers in Germany. RESULTS: From 349 identified patients, 268 (77%) participated. The participants (36% female) had a median age of 70 (interquartile range [IQR]: 58-80) years and had spent a median of 3 (IQR: 1-7.5) years on dialysis. Overall, 46% of patients on dialysis contemplated their EOL wishes at least occasionally. Of those, 85% talked about EOL wishes with their relatives, whereas 19% discussed them with their nephrologists, yet another 28% would like to have such a discussion with their nephrologist. CONCLUSION: Almost half of patients on dialysis contemplate their EOL and the vast majority engage in discussions about that with their relatives. Despite patients being interested, the frequency of consultation of nephrologists on EOL care is low. This study suggests that there is a substantial but unmet need for EOL care consultation for patients on dialysis.