Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives

Abstract

Significance Statement Older patients with advanced CKD are at high risk for serious complications and death. Although advance care planning (ACP) is critical to patient-centered care, why such patients seldom discuss ACP with their kidney clinicians is incompletely understood. Data from interviews with 68 patients, care partners, and clinicians in the United States demonstrate they held discordant views about who is responsible for raising ACP and the scope of ACP. Many nephrologists did not view ACP as their responsibility, leaving ACP insufficiently discussed in nephrology clinics, shifting responsibility to patients and primary care providers, and often leading patients to address ACP concerns outside of the medical sphere, if at all. Training nephrologists and clarifying their role in ACP are critical to increasing equitable access to ACP for older patients with CKD. Background Older patients with advanced CKD are at high risk for serious complications and death, yet few discuss advance care planning (ACP) with their kidney clinicians. Examining barriers and facilitators to ACP among such patients might help identify patient-centered opportunities for improvement. Methods In semistructured interviews in March through August 2019 with purposively sampled patients (aged ≥70 years, CKD stages 4–5, nondialysis), care partners, and clinicians at clinics in across the United States, participants described discussions, factors contributing to ACP completion or avoidance, and perceived value of ACP. We used thematic analysis to analyze data. Results We conducted 68 semistructured interviews with 23 patients, 19 care partners, and 26 clinicians. Only seven of 26 (27%) clinicians routinely discussed ACP. About half of the patients had documented ACP, mostly outside the health care system. We found divergent ACP definitions and perspectives; kidney clinicians largely defined ACP as completion of formal documentation, whereas patients viewed it more holistically, wanting discussions about goals, prognosis, and disease trajectory. Clinicians avoided ACP with patients from minority groups, perceiving cultural or religious barriers. Four themes and subthemes informing variation in decisions to discuss ACP and approaches emerged: ( 1 ) role ambiguity and responsibility for ACP, ( 2 ) questioning the value of ACP, ( 3 ) confronting institutional barriers (time, training, reimbursement, and the electronic medical record, EMR), and ( 4 ) consequences of avoiding ACP (disparities in ACP access and overconfidence that patients’ wishes are known). Conclusions Patients, care partners, and clinicians hold discordant views about the responsibility for discussing ACP and the scope for it. This presents critical barriers to the process, leaving ACP insufficiently discussed with older adults with advanced CKD.

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