"Leave a Little Ray of Hope": Perspectives From Providers, Patients, and Caregivers on Palliative Care and Future Health Care Planning for Patients Ineligible for Kidney Transplantation.

Rationale & Objective: Patients who are ineligible for transplant may benefit from the resources of palliative care (PC) and advance care planning. No studies have explored the appropriateness or timing of discussions of PC and planning for future medical needs at the transplant center with patients for whom transplant is not an option. We aimed to assess the perspectives of providers who refer and evaluate patients for kidney transplantation, transplant-ineligible patients, and their family caregivers on the potential role of the transplant center in incorporating PC and advance care planning for transplant-ineligible patients. Study Design: Single-center qualitative study using semistructured interviews. Setting & Participants: We enrolled 12 providers (9 transplant, 3 referring nephrologists) employed at a high-volume Southeastern transplant center, 7 patients who had been determined not to be candidates for kidney transplant between 2017 and 2023, and 3 of their caregivers. Analytical Approach: Semistructured interviews were conducted, audio-recorded, and professionally transcribed. Thematic analysis was used to identify major themes and subthemes. Results: Provider participants were 33% women, 42% minority race/ethnicity, and had practiced for a median of 9 years. Patients and caregivers were all Black/African American, 60% women, and of a median age of 66.5 years. Interviews yielded 3 major themes: (1) preparation can influence both provider delivery and patient receipt of the transplant candidacy decision; (2) knowledge gaps, lack of relationship, and disjointed care pose barriers to effective communication of transplant candidacy and subsequent options; and (3) patients and their families desire to be empowered to actively engage in planning for future health care needs. Limitations: Single-center study, homogeneous patient and caregiver population. Conclusions: Opportunities exist to expand provider and patient preparation, enhance understanding of supportive care resources and care coordination, and improve the experience for patients and their families as they cope with the decision of transplant ineligibility.