Hospice and ESRD: knowledge deficits and underutilization of program benefits.

Although hospice care for dying patients on dialysis has been recommended in clinical practice guidelines and policy statements of professional nephrology organizations, only a minority of dying patients on dialysis currently receive hospice services. This retrospective qualitative study investigated a variety of factors contributing to the low referral rate for patients with end stage renal disease (ESRD). Interviews (N=338) were conducted with dialysis facility professionals (RN staff nurses, social workers, nurse managers) in ESRD networks 1, 5, and 12 using a standardized telephone survey. The sample (N=448) consisted of patients who discontinued dialysis and died between September 2005 and February 2006. The study illuminated a striking variation by discipline in the understanding of Medicare ESRD benefits and Medicare hospice benefits as they apply to patients with ESRD. Social workers were more knowledgeable that patients on dialysis were eligible for the Medicare hospice benefit while continuing dialysis with a non-kidney-related terminal diagnosis than RN staff nurses or nurse managers (79% of social workers, 64% of nurse managers, and 48% of RN staff nurses were knowledgeable [p < 0.001]). Nurses were significantly more likely than social workers to be uncertain about the process of hospice referral (28% of nurse managers, 17% of RN staf nurses, and 9% of social workers [p < 0.001]). Additionally, the study found that depending on geographic region, hospice programs varied in accepting patients who wish to continue dialysis treatment. This study identified multiple barriers to referral to hospice care ofpatients with ESRD who are dying. It illustrates that hospice organizations, dialysis facilities, and dialysis unit nurses need education regarding the eligibility for Medicare hospice benefits in conjunction with a patient receiving the Medicare ESRD benefit.