Refocusing the Lens: A Commentary on "Relational Autonomy as a Theoretical Lens for Qualitative Health Research" by Jennifer A. H. Bell

Jennifer Bell (2020) applies Susan Sherwin's theory of relational autonomy as a lens to qualitative health research to study patient decision-making in cancer clinical trials. Interestingly, her broader goal is to enhance patient decision-making in the healthcare context¹ rather than the research one (i.e., for "informed consent, advance directives, goals of care, and end-of-life issues") (88). This goal relies on a silent assumption that knowledge gained in a research context is easily transferable to the healthcare context. It also leaves unexplored the promise—and peril—of the application of her work in a research context.

Bell's goal to develop tools to enable, maintain, or support patient autonomy skills in both clinical trial contexts and healthcare practice implies a straightforward application of her work across settings. This assumption of transferability requires further justification in light of the differences between these settings.

Research and healthcare have different goals, entail distinct ethical obligations, and are situated within very different contexts. As Bell herself notes, healthcare is intended to benefit the current patient whereas research is intended to produce generalizable knowledge for the possible benefit of future populations. These different goals are reflected in the ethical obligations within the provider-patient relationship. In the healthcare context, the relationship is a "fiduciary" (trust) relationship, where the provider has a duty to act in the best interests of her patient. In a research context, study doctors are contractually obligated to follow the study protocol, with the overriding goal of maintaining the scientific integrity of the research. Significant efforts have been made by research ethicists, among others, to keep the ethical commitments of clinicians in each context as clear as possible. Appreciating these distinctions enables conflicts of interest to be managed, such as when clinicians occupy dual roles as physicians and researchers, and helps to avoid confusion for patients when their physician is also their study doctor (notably, the therapeutic misconception [Appelbaum et al. 1982; Appelbaum 2016; Lyons et al. 2016], where patients erroneously believe that a study is being proposed to them because it is a beneficial treatment for them, rather than a trial of a novel intervention with unknown effects).

In addition to these disparate goals and ethical commitments, a relational autonomy lens would capture and consider the distinct social, economic, and political contexts of each setting. The clinical trial context is shaped by national and international regulations and guidelines, contractual obligations and financial agreements, Research Ethics Board review and oversight, and the significant economic investment and impact of pharmaceutical company-sponsored trials. In contrast, healthcare is offered within a publicly funded healthcare system in Canada,² with publicly accountable policies and procedures, with services provided based on need, where patients are clamoring for physician services rather than being recruited, and in which the financial compensation of physicians is not directly tied to the treatment decisions and compliance of their patients.³ How do these differences affect the power differentials, access issues, and personal, social, and structural influences on individual decision-making that Bell aims to capture with her methodology?⁴ Would any modification to her methodology be required to capture these variances in the healthcare setting versus the research one?

Relatedly, since the contextual influences on decision-making differ in each setting, would the tools produced by Bell's research enhance autonomy skills equally well in both settings, or would different sets of tools be required? Moreover, how might Bell's methodology produce tools that would differ from, improve upon, or further promote existing ones? Her methodology incorporates several features of the current healthcare system, such as the engagement of patients in shared decision-making, the importance of providing information in accessible formats,⁵ and the involvement of support persons.⁶ These enhancements (and others, like the provision of translation services, health navigators, Indigenous liaisons, the elimination of visiting hours, and the inclusion of family members in clinical interventions, such as code blues) demonstrate a recognition of, and response to, Sherwin's spotlight on patients as relational and socially...