‘Non-compliance’ as illness management: Hemodialysis patients’ descriptions of adversarial patient–clinician interactions

Abstract

With only 50% of patients in developed countries following the therapies prescribed for them by health professionals, “non-compliance” is commonly described as causing increases in morbidity, hospital visits, and overall healthcare costs. A plethora of non-compliance studies have failed to identify consistent predictors for, or solutions to, patients’ non-compliance. Our longitudinal (September 2006–September 2008) participatory action research (PAR) focused on (a) understanding hemodialysis patients’ perspectives on the challenges and solutions to living well with their chronic illness and (b) taking action to improve this population’s quality of life. The study’s participants included seven purposefully sampled patients in two hospital hemodialysis units in Canada. A small sample size was essential to accommodate our commitment to conducting a PAR study with this patient population whose unpredictable health status presented significant challenges to recruitment, follow-up interviews, and participation in data analysis. Data collection and analysis over 2 years included over 100 h of ethnographic field observation, bi-weekly unrecorded and 12 audio-recorded in-dialysis interviews, five video-recorded life-history interviews, two video-recorded focus groups, and five video-recorded dialysis treatment sessions. Thematic content analysis drew attention to patients’ descriptions of adversarial interactions with health professionals. In these interactions, three points of tension were identified: (a) between whole person care and “assembly line” treatment, (b) between patient knowledge and medical expertise, and (c) between shared decision-making and “digging to find out”. The article concludes that these adversarial relationships are indicative of a lack of trust stemming from health professionals’ failure to interact with patients as whole persons with unique expertise on their bodies, their experience of illness, and their lives.