“Ultimately, mom has the call”: Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy

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.

<p>Deciding to Enrol in a Cancer Trial: A Systematic Review of Qualitative Studies</p>

“… 37 In some cases, patient autonomy and ethical practice were not upheld, often due to a perceived lack of time to consider information about the trial. 37 , 56 Patients clearly stated that if physicians acknowledged their concerns, offered reassurance and took the time to listen, they felt they could then trust that the physicians recommendation on clinical trial participation. 30 Patients also reinforced the importance of having enough time to comprehend a cancer prognosis and filter through treatment information before making decisions.…”

“…Most participants used internet-based sources to better understand the material they received or to obtain information described in more layman’s terms. 30 , 31 , 33 , 44 , 56 Even with this initiative, confusion was still evident and the level of knowledge about trial basics was considerably low amongst most cancer patients. 26 , 27 , 37 , 53 , 59 , 60 “[Patients] … need to get somebody that can talk to them in terms that, you know, fit their mental capacity”.…”

“… 42 “I can lay down and die, or I can make myself available to the therapies that are available to me”. 56 “I feel I have no choice. I do want to get well, if that’s possible, and then you have to catch at all the straws you can find”.…”

“… 64 “I can lay down and die, or I can make myself available to the therapies that are available to me”. 56 “Not everyone gets the change to take part in something like this”. 26 Justifying the Decision Need for Social Validation “So it (support groups) wasn’t nearly as easy as I had imagined … they weren’t there when I need them.…”

“…Patients expressed feelings of ‘no choice’, found it difficult to understand information, felt uncertain about their disease and it subsequent treatment and required time to adequately decide. Schutta et al (2000) 56 USA To investigate the factors that affect patients decision to participate in a phase I clinical trial. Focus Groups Thematic Analysis 22 patients with cancer Multiple Cancer Types Patients expressed trust in physician’s recommendations and hope were primary influences in decision-making.…”