Hope as a discursive practice in cancer decision-making

The purpose of this study was to examine hope both as a powerful discursive element in health-related literature and as a discursive practice in cancer research decision-making by patients, family caregivers, and physician researchers in a quaternary cancer research center. The practice of hope is an important activity for people diagnosed with cancer, but the unexamined, taken-for-granted practice of hope may exert undue influences on the decision-making/informed consent process for cancer research participation. A genealogy (systematic analysis that illustrates the complex and often contradictory historical influences that culminate in the construction of a concept) of hope was created using philosophical, theological, and literary resources. From these analyses, major discourse practices of hope were identified. Then a focused discourse analysis of representative articles on hope published between 1999 and 2008 in the journal Advances in Nursing Science examined how influential articles reify hope as an object-with the result that hope becomes something that can be given or taken away from patients, thus limiting the scope of how hope can be enacted. A secondary analysis of 109 transcripts from 25 cancer patients enrolled in Phase II clinical trials for hematopoietic stem cell transplants analyzed how patients, family caregivers (n=20), and physician researchers (n=10) used metaphors to construct and represent cancer, medicine, science, and agency. Rhetorical analysis was utilized to indentify patterns of persuasion present in the transcripts that reinforced the hope imperative for patients to enroll in cancer research. Metaphors used by study participants were not neutral, but rather were dynamic forces that demonstrated the discursive power and hope's centrality to decision-making for cancer research participation. Current discursive practices of the informed consent process allow researchers to meet federal and regulatory guidelines while ignoring a potential coerciveness in the underlying dynamics of hope-for-cure and the hope imperative. The implications of this work are significant for bioethics. This work will help cancer research professionals engage in informed consent processes that minimize the elements of coercion. The practice of hope may then be allowed to embrace outcomes beyond cure.