Abstract / Summary
Importance In the US, dialysis remains the reflexive treatment option for end-stage kidney disease. Conservative kidney management (CKM), a nondialytic pathway, is infrequently utilized despite the burden dialysis often imposes on patients, caregivers, and health care systems. Objective To examine why older adults choose CKM, how caregivers influence this choice, and how nephrologists support CKM through advance care planning and palliative care referrals. Design, Setting, and Participants This qualitative study included secondary analysis of clinical notes and visit data from patients, caregivers, and nephrologists in 2 randomized trials in the US collectively spanning 2019 to 2024. Descriptive and qualitative methods were used to examine decision-making among older adults who chose CKM in CKD-EDU (Chronic Kidney Disease Enhanced Dialysis Education) and DIAL-SDM (Shared Decision Making in Dialysis), based on coaching visit data and nephrology clinic notes collected from January 10, 2019, to July 18, 2024. The secondary analyses for this study were performed May 19, 2024, to February 7, 2025. Main Outcomes and Measures Main outcomes were patients’ reasons for choosing CKM; caregiver and nephrologist support for CKM; and frequency of advance care planning and palliative care referrals. Results Of the 118 patients enrolled in the 2 trials, 35 chose CKM (mean [SD] age, 82 [5.9] years; 19 female [54.3%]; 8 Black [22.9%], 26 White [74.3%], 1 other [2.8%]). Qualitative analysis revealed the most common reasons for choosing CKM: (1) avoiding anticipated burdens of dialysis to maintain quality of life, (2) current poor health making CKM a logical choice, (3) witnessing the benefits and burdens of dialysis and CKM in loved ones, and (4) avoiding overmedicalization at the end of life. Caregivers often preferred life-prolonging therapies but typically aligned with patients’ wishes once those wishes were known. Nephrologists frequently framed dialysis as the reflexive option, sometimes questioned goal-concordant CKM choices, and rarely initiated advance care planning or palliative care referrals. Conclusions and Relevance In this qualitative study of patients, caregivers, and nephrologists, support for CKM was limited, despite patients consistently citing reasons for choosing CKM. Expanding CKM will require nephrologist training, caregiver-inclusive decision-making, institutional CKM pathways, and policies that incentivize its use.