Palliative and End-of-Life Care Conversations with ESRD Patients: Evidence, Gaps, and Future Directions

Abstract

Objectives:
To review the existing evidence on palliative care and end-of-life (EOL) conversations in end-stage renal disease (ESRD) patients with regard to timing, key stakeholders, content, barriers, cultural factors, and future directions to improve advance care planning (ACP) and supportive care.                                                               

Methods:
We did a narrative literature review to analyze published information on palliative and EOL communication in ESRD. We reviewed and aggregated relevant studies on ACP, conservative kidney management (CKM), communication methods, physician training, viewpoints of patients and families, cultural factors, and therapies that were assessed.

Results:
There is evidence to indicate that palliative and EOL discussions in ESRD are usually delayed and are done following acute illness, rather than being done earlier during the course of the chronic disease. Some of the key barriers that have been reported in relation to palliative and EOL discussions include the uncertainty of prognosis amongst nephrologists, lack of communication skills training, culture and religion regarding death, lack of integration of palliative care, and the absence of an advance care planning process in dialysis. Patients and their families have continuously indicated the need for early and open discussion of prognosis, symptoms, preferences, and quality of life. There has been some success with programs that involve structured ACP, decision aid, communication training, and technology to enhance patient engagement. There are still gaps in the literature, particularly regarding culturally appropriate interventions and outcomes in Muslim/Arab populations.

Conclusion:
Despite the known value of palliative and EOL communication in enhancing patient-centered outcomes, it remains neglected in ESRD care. Early, culturally sensitive, and transdisciplinary approaches to ACP should be included in routine nephrology practice. Further studies are required to test early-intervention models, technology-assisted ACP approaches, and culturally sensitive communication models to improve QOL, promote informed decision-making, and ensure care is in line with patients’ values.