Among people with advanced kidney disease, interactions with providers and with the health system can often take a large emotional toll.

The findings, published today in the Clinical Journal of the American Society of Nephrology, indicate that opportunities exist to for health care professionals improve the care of this population.

Dr. Ann O’Hare and Janelle Taylor, University of Washington professors of nephrology and anthropology, respectively, led the research. Their initial aim was to gather information about how patients with chronic kidney disease made decisions about future medical care.

“Our questions were intentionally open-ended and we encouraged patients to talk freely about what was important to them. It was striking to us that strong themes emerged related to patients’ emotional experience of illness even though we did not ask any questions specifically designed to learn about this,” said O’Hare. She cares for patients at the VA Puget Sound Health Care System in Seattle.

Three emotional themes emerged from their team’s interviews of 27 patients:

• When clinicians seemed detached from patients’ illness experience, this could engender feelings of mistrust, abandonment, isolation and/or alienation among patients.
• The ways in which care was organized could similarly lead to feelings of mistrust, abandonment, isolation and/or alienation.
• Patients struggled to make sense of their illness experience, worked to apportion blame, and were quick to blame themselves.

The researchers hope that the findings provide greater awareness among clinicians of patients’ emotional experience of illness and care.

“This is a dimension of chronic illness that can be of immense importance to patients that is often invisible to clinicians,” O’Hare said. “We hope that this work will heighten sensitivity among clinicians, health system leadership, and policymakers to patients’ emotional experience of illness and the ways in which providers and health systems can sometimes unintentionally contribute to patients’ emotional distress.”

The researchers received funding support from the US Department of Veterans Affairs.