End-of-Life Care Discussions: A Survey of Dialysis Patients and Professionals

Abstract

Bearing in mind the high mortality rate among individuals with kidney failure—in 2005, of the 485,013 individuals with End Stage Renal Disease in the United States, there were 85,790 deaths (17.6%; U.S. Renal Data System, 2007)—coupled with the confluence of complex psychological, medical, emotional, spiritual, ethical, cultural, legal and familial factors involved with the dying process, the National Kidney Foundation conducted patient and professional surveys to advance understanding of end-of-life discussions. One-hundred and eighty-two in-center hemodialysis patients and 1,202 professionals responded to surveys distributed on e-mail lists and in a clinical meeting session. Most professionals (86%) reported having end-of-life discussions with patients; however, discrepancies associated with the topics they discussed as well as with the professionals responsible for discussions were found. Of patients, 75% were receptive to having end-of-life care discussions, with more interest in talking about advance directives and pain management than other topics. Current practices are insufficient in providing patients with the necessary information to empower them to make difficult decisions about the dying process.