Older patients with chronic kidney disease (CKD) are often referred to educational sessions to learn about their different treatment options, including dialysis, and many develop end-stage renal disease (ESRD). “These patient education programs tend to focus more on modality type and vascular access than on how different treatment approaches may affect patients’ lifestyles and goals of care,” explains Nwamaka D. Eneanya, MD, MPH, FASN. “Furthermore, few patients with advanced CKD are made aware of conservative kidney management options or advance care planning.” Conservative kidney management uses non-dialytic therapy to slow disease progression and treat a wide range of symptoms.
Unlike other countries, the infrastructure to manage patients with CKD without dialysis in the United States is suboptimal. “Patients are often managed by nephrologists and primary care physicians (PCPs), but the educational messages they receive about treatment tends to focus on dialysis,” Dr. Eneanya says. “Also, routine care for these patients often lacks multidisciplinary teams to provide social and emotional support when engaging in treatment decision-making. Unfortunately, many older patients with advanced CKD or ESRD do not fully understand dialysis. They view this treatment option as being their only alternative to death.”
A Qualitative Analysis
Dr. Eneanya and colleagues performed a qualitative analysis published in BMC Nephrology to gain a better understanding of clinician and patient/caregiver perceptions of treatments for ESRD and advance care planning. Specifically, they explored the alignment of clinicians’ views of their responsibilities and patient clinical experiences. Interviews were conducted with 8 nephrologists, 8 primary care physicians (PCPs), 10 patients (aged 65 and older), and 5 caregivers.
Results of the study showed that dialysis discussions, dialysis decision-making, and processes of advance care planning were key areas in which the expectations and/or experiences of nephrologists, PCPs, and patients did not align (Figure). Nephrologists were most comfortable with specifically managing renal disease whereas PCPs felt their chief role was to advocate for patients and lead discussions on advance care planning. “In general, nephrologists and PCPs felt that nephrologists should take the lead when determining which patients are eligible for dialysis,” Dr. Eneanya says. “However, PCPs struggled with dialysis decisions made for patients who they felt would not fare well.” Nephrologists and PCPs agreed that advance care planning was an important aspect of care and that PCPs should initiate these discussions with patients.
According to Dr. Eneanya, despite clinician alignment of their respective roles, patients and caregivers had many concerns about the impact of dialysis on their livelihood. “They also felt they were not fully aware of alternatives to treatment, such as conservative kidney management,” she says. “Additionally, they did not feel they completely understood the concept of advance care planning. Both patients and caregivers wanted more information about treatment choices and advance care planning from their nephrologists. Ultimately, the perspectives of nephrologists and PCPs were aligned with each other but not with patients and their caregivers.”
Communication Improvements Needed
Findings from the study highlight the need for efforts that aim to improve communication between nephrologists, PCPs, and patients. “This is an important unmet need for optimizing the care of patients with advanced CKD,” says Dr. Eneanya. “These efforts will be critically important as institutions nationwide aim to implement strategies that improve patient experiences with kidney disease.” Of note, in July 2019, the U.S. Department of Health and Human Services launched the Advancing American Kidney Health to improve the lives of Americans suffering from kidney disease, expand treatment options for patients, and reduce healthcare costs.
More research is needed to determine if specific interventions like telemedicine or improved integration of electronic health records may improve communication between clinicians and their patients with advanced CKD. In addition, Dr. Eneanya says studies should seek to develop interventions that improve the infrastructure for effectively delivering nephrology care to older patients with advanced CKD. “The development and implementation of holistic collaborative models of care and efforts to enhance communication between all stakeholders is paramount,” she says.
Eneanya ND, Labbe AK, Stallings TL, et al. Caring for older patients with advanced chronic kidney disease and considering their needs: a qualitative study. BMC Nephrol. 2020;21:213. Jun 3 [Epub ahead of print]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7271389/.
Saeed F, Sardar MA, Davison SN, Murad H, Duberstein PR, Quill TE. Patients’ perspectives on dialysis decision-making and end-of-life care. Clin Nephrol. 2019;91(5):294-300.
Bristowe K, Selman LE, Higginson IJ, Murtagh FEM. Invisible and intangible illness: a qualitative interview study of patients’ experiences and understandings of conservatively managed end-stage kidney disease. Ann Palliat Med. 2019;8(2):121-129.
Selman LE, Bristowe K, Higginson IJ, Murtagh FEM. The views and experiences of older people with conservatively managed renal failure: a qualitative study of communication, information and decision-making. BMC Nephrol. 2019;20(1):38.