22 Jan End Stage Kidney Disease: Decoding How Patients Decide to Forgo Dialysis
MedicalResearch.com Interview with:
Susan P. Y. Wong, MD MS
Division of Nephrology
University of Washington
VA Puget Sound Health Care System
MedicalResearch.com: What is the background for this study?
Response: Patients who reach the advanced stages of kidney disease must often face the difficult decision of whether to undergo maintenance dialysis.
While maintenance dialysis is a remarkable therapy that has extended the lives of many patients, its benefits do not necessarily accrue in older patients with significant comorbidity and functional impairment. It is also a very demanding form of therapy that comes with its own burdens and complications. Based on our prior research in the national VA health system, 1 in 7 patients with very advanced kidney disease (or their decision makers) do not pursue dialysis. We wanted to understand how these decisions to forgo initiation of maintenance dialysis unfold.
MedicalResearch.com: What are the main findings?
Response: We performed in-depth review of the medical record of 851 patients with advanced kidney disease in whom there was a decision to forgo dialysis in the VA health system. Documentation in chart notes suggested that for patients who expressed a desire not to initiate dialysis, it was unusual for clinicians to readily accept their preferences. Instead, clinicians responded by repeatedly questioning this preference over time, deliberating over patients’ competency to make this decision, using various strategies to persuade patients to initiate dialysis and proceeding as though patients would change their mind and start dialysis. In other circumstances, clinicians viewed particular patients not to be candidates or appropriate for dialysis. This was typically based on specific patient characteristics, such as age and disability, and did not seem to take into account the values and preferences of individual patients.
When it was clear that dialysis would not be pursued—either because patients resisted clinicians’ recommendations to start dialysis or because they were seen as not candidates for dialysis—clinicians seemed to feel that they had little to offer patients but dialysis.
MedicalResearch.com: What should readers take away from your report?
Response: Initiation of maintenance dialysis is a powerful default for patients with advanced kidney disease in this country, and decisions to forgo dialysis are often less than proactive and patient-centered.
MedicalResearch.com: What recommendations do you have for future research as a result of this work?
Response: We need research that can help us devise better strategies and build a stronger clinical infrastructure to proactively support patients who do not wish to undergo maintenance dialysis.
Wong SPY, McFarland LV, Liu C, Laundry RJ, Hebert PL, O’Hare AM. Care Practices for Patients With Advanced Kidney Disease Who Forgo Maintenance Dialysis. JAMA Intern Med. Published online January 22, 2019. doi:10.1001/jamainternmed.2018.6197
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