Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study

Abstract

Background Elderly patients with advanced kidney disease experience considerable disability, morbidity, and mortality. Little is known about the impact of physician-patient interactions on patient preparation for the illness trajectory. We sought to describe how nephrologists and older patients discuss and understand the prognosis and course of kidney disease leading to renal replacement therapy. Methods We conducted focus groups and interviews with 11 nephrologists and 29 patients older than 65 years with advanced chronic kidney disease or receiving hemodialysis. Interviews were audiorecorded and transcribed. We used qualitative analytic methods to identify common and recurrent themes related to the primary research question. Results We identified 6 themes that describe how the kidney disease trajectory is discussed and understood: (1) patients are shocked by their diagnosis, (2) patients are uncertain how their disease will progress, (3) patients lack preparation for living with dialysis, (4) nephrologists struggle to explain illness complexity, (5) nephrologists manage a disease over which they have little control, and (6) nephrologists tend to avoid discussions of the future. Patients and nephrologists acknowledged that prognosis discussions are rare. Patients tended to cope with thoughts of the future through avoidance by focusing on their present clinical status. Nephrologists reported uncertainty and concern for evoking negative reactions as barriers to these conversations. Conclusions Patients and nephrologists face challenges in understanding and preparing for the kidney disease trajectory. Communication interventions that acknowledge the role of patient emotion and address uncertainty may improve how nephrologists discuss disease trajectory with patients and thereby enhance their understanding and preparation for the future.

Advance Care Planning for Adults With CKD: A Systematic Integrative Review

“…One study found that less than 10% of CKD patients had discussed EOL care with health professionals, suggesting that more patients need to be given this opportunity 46 . A qualitative study found that ESKD patients tended to wait for health professionals to raise ACP rather than raise it themselves 48 , while another found that nephrologists discussed EOL issues based on prognosis but struggled to identify a suitable juncture 103 . Without appropriately sensitive communication about prognosis, patients on dialysis may dramatically over-estimate their life expectancy 104 .…”

CKD in Elderly Patients Managed without Dialysis

“…Nephrologists may struggle to have these conversations (11), partly due to the relative lack of data concerning the likely trajectory of patients when dialysis is not utilized.…”

Provider Perspectives on Advance Care Planning for Patients with Kidney Disease: Whose Job Is It Anyway?

“…Patients with kidney disease report being open to engaging in ACP but expect health care providers to initiate these conversations (13)(14)(15)(16)(17). Barriers to ACP among renal providers include inadequate knowledge and training in communication, belief that ACP may be distressing for patients, concerns that ACP is too time consuming, difficulty estimating prognosis, and uncertainty about their role in ACP (18)(19)(20)(21)(22).…”