Care Practices for Patients With Advanced Kidney Disease Who Forgo Maintenance Dialysis

Abstract

Importance

Although maintenance dialysis is a treatment choice with potential benefits and harms, little is known about care practices for patients with advanced chronic kidney disease who forgo this treatment.

Objective

To describe how decisions not to start dialysis unfold in the clinical setting.

Design, Setting, and Participants

A qualitative study was performed of documentation in the electronic medical records of 851 adults receiving care from the US Veterans Health Administration between January 1, 2000, and October 1, 2011, who had chosen not to start dialysis. Qualitative analysis was performed between March 1, 2017, and April 1, 2018.

Main Outcomes and Measures

Dominant themes that emerged from clinician documentation of clinical events and health care interactions between patients, family members, and clinicians relevant to the decision to forgo dialysis.

Results

In the cohort of 851 patients (842 men and 9 women; mean [SD] age, 75.0 [10.3] years), 567 (66.6%) were white. Three major dynamics relevant to understanding how decisions to forgo dialysis unfolded were identified. The first dynamic was that of dialysis as the norm: when patients expressed a desire to forgo dialysis, it was unusual for clinicians to readily accept patients’ decisions. Clinicians tended to repeatedly question this preference over time, deliberated about patients’ competency to make this decision, used a variety of strategies to encourage patients to initiate dialysis, and prepared for patients to change their minds and start dialysis. The second dynamic arose when patients were not candidates for dialysis: clinicians viewed particular patients as not candidates or appropriate for dialysis, usually on the basis of specific characteristics and/or expected prognosis, rather than after consideration of patients’ goals and values. When clinicians decided patients were not candidates for dialysis, there seemed to be little room for uncertainty in these decisions. The third dynamic occurred when clinicians believed they had little to offer patients beyond dialysis: when it was clear that patients would not be starting dialysis, nephrologists often signed off from their care and had few recommendations other than referral to hospice care.

Conclusions and Relevance

These findings describe an all-or-nothing approach to caring for patients with advanced chronic kidney disease in which initiation of dialysis served as a powerful default option with few perceived alternatives. Stronger efforts are needed to develop a more patient-centered approach to caring for patients with advanced chronic kidney disease that is capable of proactively supporting those who do not wish to start dialysis.

Abstract

This qualitative analysis uses documentation in the electronic medical records of adults receiving care from the US Veterans Health Administration to describe how decisions not to start dialysis unfold in the clinical setting.

Key Points

Question

How do patient decisions to forgo dialysis unfold in real-world clinical settings?

Findings

In a qualitative analysis of the medical record notes of 851 patients with advanced kidney disease who decided to forgo maintenance dialysis, 3 prominent themes emerged: (1) clinicians did not readily accept patients’ wishes not to start dialysis, (2) clinicians decided particular patients were not candidates for dialysis seemingly without consideration of the patients’ goals and values, and (3) clinicians seemed to believe they had little more to offer patients who would not be starting dialysis.

Meaning

There is need for more patient-centered models of care for advanced kidney disease capable of supporting those who do not wish to start dialysis.