At the Margins: Expert Patient Subjectivities in the Biomedical Treatment of Advanced Cancer

• In Event: The Grey Zones of Illegality and Informality: Creativity, Cunning and Innovation

Abstract

As healthcare systems embrace patient engagement, shared decision-making, and open access to personal health data, the traditional notion of medical expertise may be threatened by the advent of the “expert patient.” The flattening of the hierarchies of expertise even occurs in medical practices thought to be the pinnacle of bioscientific complexity, the treatment of advanced cancers. In this study, I offer a critical analysis of the literature in two clinical scenarios where life-limiting cancers do not respond to conventional treatment: 1.) Patients’ active searches for additional medical modalities, such as experimental trials, often outside of professional guidance; and 2.) Patients’ refusal of cancer therapies that are recommended to them by physicians, particularly when offered as “last resort” options. Using Foucault’s ideas of power/knowledge and technologies of the self, I suggest that the expert patient subjectivity is fraught with tensions. Expert patients may constitute a productive use of power, yet may simultaneously force people to work at the margins of lay/professional expertise, biomedical successes/failures, and life/death. I also suggest that the expert subjectivity constitutes a privileged position from which some are denied. Who is deemed an expert varies along racial, class, gender, age, and socio-economic lines. For instance, in the US, cancer patients from racialized groups are more likely to receive inappropriate and aggressive treatment than non-racialized groups (Miesfeldt et al., 2012). I conclude by problematizing how the expert patient subjectivity might reinforce social inequalities and traditional systems of power in medicine, and by envisioning new possibilities for lay expertise.

Miesfeldt, S., Murray, K., Lucas, L., Chang, C., Goodman, D., & Morden, N. E. (2012). Association of age, gender, and race with intensity of end-of-life care for medicare beneficiaries with cancer. Journal of Palliative Medicine, 15(5), 548-554. doi:10.1089/jpm.2011.0310

Author

• Shan Mohammed, University of Toronto