The decision to forgo antiretroviral therapy in people living with HIV compliance as paternalism or partnership?

OBJECTIVE: The purpose of this study was to examine the self-reported reasons that people living with HIV (PLWH) provide to support their autonomous (i.e., against medical advice) decisions not to take, or to stop taking, highly active antiretroviral therapy (HAART). A further purpose of this study was to examine physicians' reactions to their patients' autonomous decisions and to examine physicians' conceptualization of compliance. DESIGN/
METHODS: Semi structured interviews were conducted with 11 PLWH (5 male, 6 female) and their 8 HIV-care providers (4 male, 4 female). Interviews were analysed qualitatively using thematic coding. Patients also completed sociodemographic and medical information questionnaires. Interrater reliability was also calculated on patients' reasons supporting their decisions with coefficients ranging from .84 to 1.00 (all ps <.01).
RESULTS: For all 11 patients, preservation of quality of life and critical attitudes toward allopathic medicine were identified as reasons supporting autonomous decisions to refuse HAART. In addition, 10 patients cited the prior experience of, or the anticipated fear of, side-effects as central to their decision. Nine patients articulated their preference for alternative medicine and five patients expressed moral objections as significant reasons underlying their decisions. Gender differences emerged in care providers' conceptualization of compliance. Female care providers tended to view compliance as a collaboration between patient and care provider whereas male physicians tended to view compliance more as the patients' capacity to adhere to the prescribed HAART-regimen. Physician response strategies to patients' autonomous decision to refuse HAART were characterized as coercive or not. Neither the physicians' conceptualization of compliance nor their response strategies were consistent with the patients' perspective. In contrast, the central component of the patients' decision making was the patients' subjective view of the benefit they would derive from HAART.
CONCLUSIONS: The results of this study provide some initial evidence that health care providers integrate recommendations for HAART with patients concerns for their own quality of life and make these recommendations within the context of the patients' worldview. In addition, these results suggest that traditional views of compliance, that emphasize obedience to physician prescriptions, may be inadequate in this regard. Rather, these results suggest that a theory of compliance that is based upon collaboration between physician and patient will allow for a consideration of patients' subjective views, their worldview, and their health care beliefs.