Caring for older patients with advanced chronic kidney disease and considering their needs: a qualitative study

BACKGROUND: Older patients with advanced chronic kidney disease often do not understand treatment options for renal replacement therapy, conservative kidney management, and advance care planning. It is unclear whether both clinicians and patients have similar perspectives on these treatments and end-of-life care. Thus, the aim of this study was to explore clinician and patient/caregiver perceptions of treatments for end-stage renal disease and advance care planning. METHODS: This was a qualitative interview study of nephrologists (n = 8), primary care physicians (n = 8), patients (n = 10, ≥ 65 years and estimated glomerular filtration rate < 20), and their caregivers (n = 5). Interviews were conducted until thematic saturation was reached. Transcripts were transcribed using TranscribeMe. Using Nvivo 12, we identified key themes via narrative analysis. RESULTS: We identified three key areas in which nephrologists’, primary care physicians’, and patients’ expectations and/or experiences did not align: 1) dialysis discussions; 2) dialysis decision-making; and 3) processes of advance care planning. Nephrologist felt most comfortable specifically managing renal disease whereas primary care physicians felt their primary role was to advocate for patients and lead advance care planning discussions. Patients and caregivers had many concerns about the impact of dialysis on their lives and did not fully understand advance care planning. Clinicians’ perspectives were aligned with each other but not with patient/caregivers. CONCLUSIONS: Our findings highlight the differences in experiences and expectations between clinicians, patients, and their caregivers regarding treatment decisions and advance care planning. Despite clinician agreement on their responsibilities, patients and caregivers were unclear about several aspects of their care. Further research is needed to test feasible models of patient-centered education and communication to ensure that all stakeholders are informed and feel engaged.