‘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.

Introduction

Given the relatively recent shift in medical care, away from primarily acute illness and toward chronic illness, and given the difficulty of treating and managing complex, co-morbid chronic illnesses such as end-stage renal disease (ESRD), it is not surprising that abundant clinical research across medical disciplines has been unable to identify predictors of and solutions to patient non-compliance (Christensen, 2004, Segal, 2005, Vermeire et al., 2001). Clinical research on the compliance of hemodialysis patients is no exception. Findings are commonly viewed as problematic due to inconsistency in measurement parameters and definitions of non-compliance. These inconsistencies contribute to a huge range in its reported prevalence (e.g. Kaveh & Kimmel, 2001) as well as conflicting data on the relationship between compliance and mortality (e.g. Leggat, 2005) and between compliance and quality of life (Quinnan, 2007).

In an effort to better recognize the substantial role of patients in healthcare, the term “adherence” (defined as “the extent to which a person’s behavior – taking medication, following a diet, and/or executing lifestyle changes – corresponds with agreed recommendations from a healthcare provider” (WHO, 2003, p. 17)) introduced more awareness of chronically-ill patients’ rights and responsibilities in their illness management. However, the conceptual shift between compliance and adherence is so subtle as to go virtually unnoticed in research and practice where “compliance” and “adherence” are used interchangeably. In this article, we use “compliance” to refer to both terms.

The literature on hemodialysis patients’ non-compliance identifies a range of reasons for this behavior. Inadequate education about their illness and illness management (e.g. Constantini, 2006, Krespi et al., 2004) and the desire for more control over an unpredictable chronic illness (e.g. Leggat, 2005, Quinnan, 2007) are commonly cited explanations for dialysis patients’ non-compliance. Lack of family support and the complexity of treatment regimes are other commonly cited reasons (e.g. Loghman-Adham, 2003). We further explore patients’ reasons for non-compliance both in our discussion of the concept of “concordance” and in the section describing our findings.

Because of sustained criticism of the paternalistic overtones of compliance models of medicine and because of decades of compliance research that has failed to effect change in patient behavior or healthcare costs, the UK’s Royal Pharmaceutical Society and Department of Health introduced the concept of “concordance” defined as “agreement between the patient and healthcare professional, reached after negotiation that respects the beliefs and wishes of the patient in determining whether, when and how their medicine is taken, and (in which) the primacy of the patient’s decision (is recognized)” (Marinker et al., 1997, cited in Cushing & Metcalfe, 2007, p. 1049). The definition acknowledges the significant role that chronically-ill patients play in the daily management of their illness and identifies health professionals as expert medical resources who can facilitate patients’ successful self-management.

Central to concordance is a mutually-respectful patient–clinician relationship focused on negotiated agreement (Cushing & Metcalfe, 2007) with an understanding of chronic illness management as embedded in the complexities of patients’ life worlds (Burke, 2007, Gately et al., 2007). Such patient–clinician relationships are increasingly viewed as core to patients’ successful self-management (Constantini, 2006, Ricka et al., 2002) and to shared decision-making which integrate medical expertise and patients’ experiences (Barratt, 2008, Department of Health, 2001, p. 38; Karnieli-Miller and Eisikovits, 2009, Lorig and Holman, 2003).

However, in light of patients’ reasonable concerns about, for example, the risk of adverse drug reactions, addiction, and stigma (Pound et al., 2005), or the material and social barriers (e.g. poverty, gendered roles) to compliance (Bissell, May, & Noyce, 2004), concordant patient–clinician relationships cannot be seen as the panacea to non-compliance. But, Bissell et al. (2004) argue that while such relationships may not directly affect health outcomes, they seem to increase health professionals’ understanding of the subjective aspects of living with a chronic illness. Such understanding may facilitate the integration of what many argue is useful experiential knowledge from patients (e.g. Caron-Flinterman et al., 2005, Stockl, 2007).

In our two-year, participatory action research (PAR) study, patient-participants and dialysis health professionals offered differing perspectives on how patients should go about living well with their chronic illness. Significantly, patient compliance figured prominently as a point of tension in patient–clinician relationships. This article focuses on that tension in the context of hemodialysis and how that tension played out in the patients’ management of their illness. More specifically we report findings regarding two specific research questions: (a) how do hemodialysis patients describe health professionals’ involvement in their care? (b) how can these descriptions be understood in the context of these patients’ illness management?