Navigating the Empty Spaces of Care: A Feminist Political Economy Analysis of the Care Experiences and Work Practices of Women Living with Cancer

Advances in cancer treatment are improving survival rates and, in so doing, transforming the nature of cancer from an acute to chronic illness. Within the Canadian health care system, there has been increasing policy acknowledgment of and support for a culture change in care that promotes a stronger chronic care agenda and yet the Canadian health care system continues to operate within a predominantly medical model that favours acute care and treatment. The Princess Margaret Cancer Centre has shown some evidence of their commitment to a chronic care model through the implementation of ELLICSR Health, Wellness and Cancer Survivorship Centre. While this appears promising, understanding how these changes are operationalized in a predominantly acute health care setting remains an underdeveloped area and the implications for patients remain unknown. In this study, I apply critical ethnography and various data collection methods (document analysis, participant observation, semi-structured interviews and photo elicitation) in order to explore the patient experience within this changing health care milieu, paying particular attention to patients care experiences and work practices. As informed and framed by feminist political economy, this project explores the everyday care and work experiences of women diagnosed with cancer as situated within the broader social, political, and economic contexts in which cancer care and work are anchored. Analysis traces key tensions and conflicts between policy directions and the everyday environments where care takes place. The findings illuminate that, in the absence of suitable and sustained institutional and funding support, ideological changes that appear to be in line with improved patient autonomy and control (e.g., person-centeredness, patient involvement and self-management) more closely resemble increased individual responsibility and work for which little choice is given. In the empty spaces between policy promises and care practices, the findings reveal a new responsibility and accountability circuit wherein access to good quality care increasingly rests on patient action/inaction, thus rendering opportunities for care more inequitable. The delivery of psychosocial and supportive care through ELLICSR made a critical difference in the care experiences of study participants; however, the precarity of this space demonstrates the lack of commitment to the proposed goals of reforms. As our health care system changes, we must take up a context-sensitive approach that invites engagement with the messiness and complexity of cancer care as conceptualized, practiced, and lived.