“You haven’t studied for this”: How individuals navigate moral and ethical challenges in their role as cancer care partners

Abstract: Cancer care partners, often referred to as caregivers, experience emotional and financial burdens as well as physical and mental health disparities as a result of taking on the role of care partner for a person with cancer. This essential role in patients’ experiences sits at the intersection of advocacy, support, caretaking, and clinical care provision or navigation, sharing many attributes with – though none of the training of – the role of a clinician. While trained oncological clinicians’ experiences of and approaches to navigating moral and ethical dimensions of care are well-documented in the literature, there is a dearth of evidence pertaining to whether and how cancer care partners navigate these same dimensions of care in their roles. Using dimensional analysis as a methodological approach, we conducted a sub-analysis of cancer care partners’ lived experiences in their roles to uncover the nature of moral and ethical issues they face and navigate. Our analysis revealed important dimensions related to the characteristics of moral and ethical issues faced by cancer care partners – including moral distress resulting from role-conflict and moral dilemma related to role-uncertainty – as well as the resources and strategies they use to navigate them, such as leveraging care partner networks. We conclude that practice and policy changes ought to be inclusive of the role of cancer care partners and future research should integrate the patient perspective into the exploration of this socially and ethically complex phenomenon.

Jane Evered – University of Wisconsin-Madison; Fiona Larson – University of Pennsylvania; Irene Pyo – University of Pennsylvania; Ga Lee – Stony Brook University