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

Abstract

BackgroundOlder 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.MethodsIn 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.ResultsWe conducted 68 semistructured interviews with 23 patients, 29 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).ConclusionsPatients, 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.

Perceptions of Telehealth vs In-Person Visits Among Older Adults With Advanced Kidney Disease, Care Partners, and Clinicians

“…A social scientist with expertise in qualitative methods and kidney disease (K.L.) 27 , 28 designed 3 semistructured interview guides based on literature review and clinical experience (ie, patients, care partners, clinicians). The guides were refined by the research team and the DART Stakeholder Advisory Board (eAppendix 1 in the Supplement ).…”

Treating Early-Stage CKD With New Medication Therapies: Results of a CKD Patient Survey Informing the 2020 NKF-FDA Scientific Workshop on Clinical Trial Considerations for Developing Treatments for Early Stages of Common, Chronic Kidney Diseases

“…Despite the potential reticence of clinicians to have complex risk-progression discussions with patients, the reality is that clinicians’ professional insights and opinions carry significant impacts on patients’ willingness to consider new medications or treatments. 15 , 26 This is true even among the well-educated population who responded to the survey reported here. Ideally, these conversations begin early and continue over time, in an iterative process combining education and preference discussions.…”

Shared Decision Making Among Older Adults With Advanced CKD

“…In 2018-2019, we recruited 400 patients and randomized 363 of these patients from nephrology clinics in greater Boston, Portland (Maine), San Diego, and Chicago to participate in the DART Trial (ClinicalTrials.gov identifier NCT03522740), a randomized controlled trial investigating the effectiveness of a web-based decision aid compared with routine in-person education in reducing decisional conflict. 30,31 Eligible patients had nondialysis advanced CKD and were aged 70 years or older, spoke English, and were established in a nephrology clinic. To determine eligibility by estimated glomerular filtration rate (eGFR), one of the most recent 2 eGFR assessments had to be <30 mL/min/1.73 m 2 with the other <35 mL/min/ 1.73 m 2 .…”