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Clinical trials (CTs) in cancer care play an essential role in advancing knowledge and improving patient care. Low CT enrolment, however, threatens this field of science and may prevent people with cancer from benefiting from the latest therapeutic interventions. The aim of this research was to explore cancer patients’ CT decision-making process and how they exercise relational autonomy within this process. Relational autonomy acknowledges patients are situated within a larger relational and socio-political context that is characterized by inherent power differentials and social inequities that may influence CT decisions. The objectives of this research were to: a) understand cancer patients’ decision-making process related to CT participation and how they exercise relational autonomy within this process; b) examine the personal, social, and system influences on cancer patients’ decision-making process related to CT participation and their ability to exercise their relational autonomy; and c) identify the best practices utilized by CT personnel that support cancer patients in exercising their relational autonomy in the CT decision-making process. Two different yet complementary methodologies, interpretive description and grounded theory, guided in-depth interviews with 12 CT personnel, 40 breast and prostate cancer patients, and 11 support persons to address the objectives. Three major themes were uncovered that impact cancer patients’ decision-making process and ability to exercise their relational autonomy: (1) power differentials between patients and physicians, (2) therapeutic misconception, and (3) inequities in access to CTs. The overarching construct ‘no wo/man is an island’ captured patients’ CT decision-making process and experiences of autonomy, including the relational complexity of CT decisions and the key influences on this process. Results from this research highlight how CT decision-making is a complex endeavor comprised of key phases and processes that are not only personally but also socially and structurally located. Practice implications of this research include targeted education for CT personnel and patients to equalize power relationships within CT recruitment. In addition, standardization of cancer drug approval, better monitoring and follow-up cancer care, and a more accessible and quality healthcare system can address structural barriers in order to support patients’ relational autonomy within the context of CTs.
Pain is one of the main reasons that adults seek health care, yet the management of chronic nonmalignant pain (CNMP) is framed by epistemological, ontological, ethical, and clinical uncertainties. As a subjective experience, CNMP presents challenges for both patients and health care providers. Opioid analgesics are commonly prescribed for CNMP. However, recent research questioning the long-term benefits of opioids for CNMP and the rapid rise in public health harms from prescription opioid abuse have led to concerns about iatrogenic addiction, drug-seeking behaviour, and medication diversion. Such concerns pose risks to the patient, to the health care provider, and to society, and may threaten the trust that provides the moral foundation of the therapeutic relationship. Drawing upon an interdisciplinary literature and methods from both bioethics and empirical neuroethics, this in-depth, multi-component single study focused on adults living in an urban setting in the Lower Mainland of British Columbia, Canada. Semi-structured interviews (N=27) were conducted with participants with chronic low back pain to explore their experiences of trust and trustworthiness in CNMP management. Grounded theory analysis of the data yielded four major themes: (1) fidelity and iatrogenic suffering; (2) communicating the invisible and subjective condition of chronic pain; (3) motive, honesty, and testimony; and (4) stigmatized identities. The findings were response-validated by two feedback groups comprising re-contacted interview participants (N=4) and physician specialists drawn from the same setting who care for patients living with CNMP and addiction (N=6).Qualitative analysis suggests that trust in CNMP management is challenged when patients perceive that their accounts of pain and suffering are considered by health care providers to lack credibility, feel unfairly accused of being deceptive, or sense a combination of both lack of credibility and deception.The dissertation concludes with a discussion of the practical implications of these findings in the context of the broader health care system, and with a proposal for how a trust- centred ethics of CNMP management can involve greater epistemic humility toward improved patient care.