Enriching Patient-Centered Care in Serious Illness: A Focus on Patients’ Experiences of Agency

Context: Following models of patient-centered care, including respecting patients’ preferences and enabling patients (and their families) to participate in directing their own care, is especially difficult when providing care to cancer patients undergoing complex, aggressive therapy, when their capabilities are diminished. In this context, patient-centered care can be enriched when health care providers develop a deeper awareness of and appreciation for the multiple ways in which patients experience agency-defined as the capacity to make a difference-as both the initiators and the recipients of others’ agency.
Methods: Qualitative data were collected between 2006 and 2008 in sixty-nine narrative interviews with both a panel of ten patients undergoing aggressive inpatient cancer therapy (autologous stem-cell therapy) and their lay caregivers. Data were analyzed using an interpretative approach and guided by a conceptual framework derived from recent sociological literature on agency.
Findings: We examined agency experiences through three distinct lenses: (1) the nature of the actors (both human and nonhuman), (2) the nature of the actions, and (3) the nature of the domains for action. The actors were individuals and teams, drugs and technologies, and the cancer itself. Actions could be initiated or received by the patients and included fighting and violating as well as comforting and healing. Domains were the patients’ bodies, the health care system, and the patients’ everyday worlds. In several instances, the same phenomena can be examined through more than one lens of agency, drawing attention to different aspects of the patients’ experiences. Taken together, the lenses form a comprehensive picture of patients’ experiences of agency.
Conclusions: This three-lens perspective can be a valuable template for health care professionals and policymakers to use in better understanding the experiences of patients in constrained circumstances. We propose that its use is a fruitful and promising contribution to recent conceptualizations of patient-centered care that emphasize the relational and facilitative aspects of care provision.

Author(s): Kathleen Montgomery; Miles Little

Keywords: cancer treatment; actions; actors; narratives

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Volume 89, Issue 3 (pages 381–398)
DOI: 10.1111/j.1468-0009.2011.00633.x
Published in 2011