Preserving Autonomy in Later Life for Patients with Kidney Disease: A qualitative study of Patients, Chief Medical Information Officers, and Nephrologists
Friday, October 13, 2023
5:00 PM – 6:15 PM ET
Location: Kent A-C (Fourth Floor)
Background: Chronic kidney disease (CKD) is the ninth leading cause of death in the U.S., disproportionately affecting structurally minoritized populations. Advance care planning (ACP) is especially important for older adults with CKD, given high mortality and hospitalization rates. However, ACP completion remains low patients with CKD compared to patients with other serious illness for reasons incompletely understood, and few studies engaging patients, clinicians, and Chief Medical Information Officers, despite their roles in ACP.
Methods: Multisite qualitative study using semi-structured interviews with patients (CKD stages 4-5), nephrologists, and CMIOs, purposively sampled by region, health system size, and setting for patients (dialysis, non-dialysis). Thematic analysis of transcribed interviews using a consensus process.
Results: 69 participants (29 clinicians, 11 CMIOs, 29 patients) described divergent perspectives about the value of ACP and concerns that current ACP practices undermine patient autonomy. Three themes with subthemes emerged: structural barriers limiting access to ACP (legal barriers to sharing and preserving preferences, nephrologists' limited formal ACP training and time, limited patient access to or ability to revise ACP, limited health literacy, disparities in patients' approached for ACP), technological barriers and facilitators (standardization and interoperability issues inhibiting sharing, inconsistent access to documents contributing to low value); conceptual considerations for preserving patient autonomy (instability of patient preferences, ACP document ownership).
Conclusions: Interoperability and lack of patient participation pose barriers to high-quality ACP and preserving patient autonomy. Lack of reliable ACP documentation contributed to low reliance on ACP documents during emergent situations, undermining the value of ACP and patient-centered care.
Kristen Kennefick, MA – REACH LAb – Tufts University; Makenna Law – REACH Lab – Tufts University; Kate Aufort – REACH Lab – Tufts University; Daniel Weiner – Medicine – Tufts Medical Center