title: "I like to be an informed person but..." negotiating responsibility for treatment decisions in cancer care.
abstract: Social expectations surrounding sickness have undergone a transformation in Western welfare states. Emerging discourses about patients' roles and responsibilities do not however always map neatly onto patients' actions, experiences or desires. This paper emerges from a study in Ontario, Canada. Drawing on in-depth interviews with 5 women diagnosed with breast cancer we explore the activity and effort prompted for patients by the routine professional practice of outlining treatment options and encouraging patients to choose between them. We highlight research participants' complex responses to their responsibility for treatment decisions: their accepting, deflecting and reframing and their active negotiation of responsibility with professionals. The literature on treatment decision making typically characterizes people who resist taking an active role as overwhelmed, misinformed about the nature of treatment decisions, or more generally lacking capacity to participate. In this paper we suggest that patients' expressions of ambivalence about making treatment choices can be understood otherwise: as efforts to recast the identities and positions they and their physicians are assigned in the organization of cancer care. We also begin to map key features of this organization, particularly discourses of patient empowerment, and evidence-based medicine.
authors.affiliation: School of Social Work & Department of Health, Aging and Society, McMaster University, Hamilton, Ontario, Canada. sinding@mcmaster.ca
authors.forename: Christina
authors.initials: C
authors.lastname: Sinding
authors.forename: Pamela
authors.initials: P
authors.lastname: Hudak
authors.forename: Jennifer
authors.initials: J
authors.lastname: Wiernikowski
authors.forename: Jane
authors.initials: J
authors.lastname: Aronson
authors.forename: Pat
authors.initials: P
authors.lastname: Miller
authors.forename: Judy
authors.initials: J
authors.lastname: Gould
authors.forename: Donna
authors.initials: D
authors.lastname: Fitzpatrick-Lewis
mesh_terms: D001943:Breast Neoplasms / Q000523:psychology / Q000628:therapy*; D015331:Cohort Studies; D003657:Decision Making; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D017008:Negotiating; D009864:Ontario; D010358:Patient Participation / Q000523:psychology*; D010817:Physician-Patient Relations; D036301:Qualitative Research