Abstract
ObjectiveThis study employs the concept of relational autonomy to understand how relational encounters with family members (FMs) and care providers may shape decisions around ovarian cancer patients’ clinical trial (CT) participation. The study also offers unique insights into how FMs view patients’ decision making.MethodsIn‐depth interviews were conducted with 33 patients with ovarian cancer who had been offered a CT and 39 FMs. Data were inductively analysed using a thematic approach and deductively informed by constructs derived from the theory of relational autonomy (RA).ResultsPatients’ relationships, experiences and social status were significant resources that shaped their decisions. Patients did not give equal weight to all relationships and created boundaries around whom to include in decision making. Doctors’ recommendations and perceived enthusiasm were described as influential in CT decisions. Both patients with ovarian cancer and their FMs maintained that patients have the “final say,” indicating an individualistic autonomy. However, maintaining the “final say” in the decision‐making process is constitutive of patients’ relationships, emphasizing a relational approach to autonomy. FMs support patients’ autonomy and they do so particularly when they believe the patient is capable of making the right choices.ConclusionsAlthough ethical principles underlying informed consent for CT participation emphasize individual autonomy, greater attention to relational autonomy is warranted for a more comprehensive understanding of CT decision making.
Highlights
Potential research participants in clinical trials (CTs) must be informed of their right to self-determination and be provided an in-depth description of foreseeable benefits, risks of the trial and alternatives to participation as part of the process of informed consent.[1]
The decision-making process itself can be viewed as a “silent factor” in CT decision making, much of the literature assumes shared decision making among patients, providers and family members (FMs) is preferred.[6]
Responses from patients in this study suggest that patients with cancer, as individuals, are socially constructed and the decisions they make around CT enrolment are constituted through their interactions with their social environment
Summary
Potential research participants in clinical trials (CTs) must be informed of their right to self-determination and be provided an in-depth description of foreseeable benefits, risks of the trial and alternatives to participation as part of the process of informed consent.[1]. Within traditional notions of autonomy, informed consent and clinical decision making are viewed as an individual and rational exercise free from the influence of others.[2,3,4] Instead, RA casts the individual’s selfhood as iteratively shaped by, experienced and produced through interconnected relationships with others, and through the individual’s own biography, emotions and social experiences.[14,15] Personal autonomy, is realized through a dynamic web of social, historical, class, racial, gendered and cultural contexts,[14,15,16,17] with inherent uneven power relations embedded within this complexus. This presents an opportunity to explore the topic of autonomy in decision making—which is portrayed as rational model—in the context of a lethal disease where patients are faced with decisions that impact both their medical and social situation
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