The views and experiences of older people with conservatively managed renal failure: a qualitative study of communication, information and decision-making

Abstract Background Older people with advanced kidney disease require information and support from clinicians when deciding whether to have dialysis or conservative (non-dialysis) care. There is evidence that communication practices, information provision and treatment rates vary widely across renal units. However, experiences of communicating with clinicians among patients receiving conservative care are poorly understood. This evidence is essential to ensure support is patient-centred and equitable. Our aim was to explore views and experiences of communication, information provision and treatment decision-making among older patients receiving conservative care. Methods In-depth qualitative interviews were conducted with patients with stage 5 chronic kidney disease from three UK renal units. Purposive sampling captured variation in age, co-morbidity and functional status. Interviews were analysed thematically. Results 20 patients were interviewed (11 were men; median age 82 (range 69–95)). Participants described positive experiences of communicating with clinicians and receiving information, but also negative experiences involving insensitivity, rushing or ambiguity. Participants reported clinicians omitting/avoiding conversations regarding diagnosis and prognosis, and described what helped and hindered good communication and support. They wanted information about their treatment options and illness, but expressed ambivalence about knowing details of disease progression. Clinicians’ views and recommendations regarding treatment influenced patients’ decision-making. Conclusions Older patients report variable quality in communication with clinicians and gaps in the information received. Uncertainty about the disease trajectory and patients’ ambivalence regarding information makes communication particularly challenging for clinicians. Tailoring information to patient preferences and conveying it clearly and sensitively is critical. Renal clinicians require support and training to ensure decision-making support for older patients is patient-centred. Future research should examine how clinicians’ communication practices influence treatment decision-making