Hospice and ESRD: knowledge deficits and underutilization of program benefits

Area of Science:

• Nephrology
• Palliative Care
• Healthcare Policy

Background:

• Clinical guidelines and policy statements recommend hospice care for end-stage renal disease (ESRD) patients.
• However, a significant minority of dying ESRD patients currently receive hospice services.
• This discrepancy highlights a need to investigate barriers to hospice referral in this population.

Purpose of the Study:

• To investigate factors contributing to the low referral rate of dying patients with ESRD to hospice care.
• To assess the understanding of Medicare ESRD and hospice benefits among dialysis facility professionals.
• To identify variations in hospice program acceptance of patients continuing dialysis.

Main Methods:

• Retrospective qualitative study involving interviews with 338 dialysis facility professionals (RN staff nurses, social workers, nurse managers).
• Standardized telephone survey conducted across ESRD networks 1, 5, and 12.
• Analysis of data from 448 patients who discontinued dialysis and died between September 2005 and February 2006.

Main Results:

• Significant variation in understanding Medicare benefits for ESRD patients across disciplines.
• Social workers (79%) were more knowledgeable about hospice benefit eligibility for dialysis patients than RNs (48%) or nurse managers (64%).
• Nurses reported higher uncertainty regarding hospice referral processes, and hospice program acceptance varied geographically.

Conclusions:

• Multiple barriers impede hospice care referrals for dying ESRD patients.
• Education is needed for hospice organizations, dialysis facilities, and nurses regarding Medicare hospice benefit eligibility alongside ESRD benefits.
• Addressing knowledge gaps and regional variations is crucial to improve access to hospice care for ESRD patients.