Background and objectives The highly specialized and technologically focused approach to care inherent to many health systems can adversely affect patients’ emotional experiences of illness, while also obscuring these effects from the clinician’s view. We describe what we learned from patients with advanced kidney disease about the emotional impact of illness and care.
Design, setting, participants, & measurements As part of an ongoing study on advance care planning, we conducted semistructured interviews at the VA Puget Sound Healthcare System in Seattle, Washington, with 27 patients with advanced kidney disease between April of 2014 and May of 2016. Of these, ten (37%) were receiving center hemodialysis, five (19%) were receiving peritoneal dialysis, and 12 (44%) had an eGFR#20 ml/min per 1.73 m2 and had not started dialysis. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory methods.
Results We here describe three emergent themes related to patients’ emotional experiences of care and illness: (1) emotional impact of interactions with individual providers: when providers seemed to lack insight into the patient’s experienceof illness and treatment, this could engender a sense of mistrust, abandonment, isolation, and/or alienation; (2) emotional impact of encounters with the health care system: just as they could be affected emotionally by interactions with individual providers, patients could also be affected by how care was organized, which could similarly lead to feelings of mistrust, abandonment, isolation, and/or alienation; and (3) emotional impact of meaning-making: patients struggled to make sense of their illness experience, worked to apportion blame, and were often quick to blame themselves and to assume that their illness could have been prevented.
Conclusions Interactions with individual providers and with the wider health system coupled with patients’ own struggles to make meaning of their illness can take a large emotional toll. A deeper appreciation of patients’ emotional experiences may offer important opportunities to improve care.