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

Abstract

BackgroundOlder 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.MethodsIn-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.Results20 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.ConclusionsOlder 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.

Nephrology Provider Surprise Question Response and Hospitalizations in Older Adults with Advanced CKD

“…The findings of this study and its precursor [21] demonstrate that ne- phrologists are able to prognosticate about outcomes that matter to patients with NDD-CKD stages 4-5, even if they often report they cannot [15,27,28], and nephrologists' intuitions are valuable independent of traditional markers of health and disease. Despite this, available data suggest that patients are not receiving prognostic information as much as they would like [14][15][16][17]. Though nephrology providers might regard hospitalization as an expected outcome in advanced NDD-CKD, hospitalization can be a sentinel event heralding the onset of new problems or even the imminent end of life.…”

“…Given how common and consequential hospitalization is for older adults with NDD-CKD, the ability to identify those whose risk extends above the baseline risk of being older and having diminished kidney function could benefit these patients by directing their healthcare team's efforts towards prognostication of clinical trajectory and prevention of hospitalization. Patients with advanced CKD and end-stage kidney disease (ESKD) often report that though they want to discuss prognosis with their doctors, they generally have not [14][15][16][17]. With regard to hospitalization prevention, prior research suggests that some hospitalizations of patients with NDD-CKD are preventable and that particular patient characteristics, including older age, higher stage of CKD, lower income, and poor attachment to primary care, are associated with these preventable hospitalizations [18,19].…”

Palliative Care for Patients With Advanced CKD: Moving Beyond the Status Quo

“…6 Nephrology providers strive to achieve "shared decision making," but underlying uncertainty about disease trajectory continues to challenge good communication. 7 Without access to structured training in communication and palliative care approaches, clinicians may skip essential questions necessary to understand patients' hopes, fears, priorities, and tradeoffs. Instead, they may appeal to patient autonomy, hoping that by simply explaining the risks, benefits, and complexities of each treatment option, the patient will make "the right decision"-despite our realization that even maximizing prognostic knowledge alone may not affect treatment choices if underlying emotions are not adequately addressed.…”

Use of a Supportive Kidney Care Video Decision Aid in Older Patients: A Randomized Controlled Trial

“…Patients with advanced CKD and their caregivers desire patient-centered information regarding their ESRD treatment options but supportive kidney care is often not discussed [11][12][13]. Also, there is limited evidence about how best to inform patients about non-dialytic treatments and pre-dialysis education program processes vary widely [14][15][16][17][18][19].…”