DId I Do the Right Thing? Moral and Ethical Dilemmas in Oncology Family Caregiving

TL;DR

This paper explores moral and ethical dilemmas faced by family caregivers in cancer care, highlighting the need for better support systems.

Contribution

The study introduces a caregiver-informed typology of moral and ethical dilemmas in oncology caregiving.

Findings

Four moral themes emerged, including truth-hope stewardship and rescue vs. acceptance near end of life.

Two ethical tensions were identified: surrogate autonomy vs. best interest and decisional capacity uncertainty.

Abstract

Family caregivers are central to cancer care, yet many difficulties extend beyond logistics of caregiving to dilemmas marked by moral uncertainty and ethical tension. Such dilemmas require value trade-offs rather than straightforward problem solving. U.S. research richly documents caregiver challenges but seldom characterizes moral/ethical dilemmas as caregivers themselves experience them. We report preliminary descriptive findings toward a caregiver-informed typology of moral and ethical dilemmas in cancer caregiving. Within an ongoing qualitative study, we conducted inductive thematic analysis of the initial interviews (20% of total sample). Two coders independently reviewed transcripts, wrote reflexive memos, iteratively refined a codebook, and resolved differences by consensus. This analysis was restricted to segments coded as moral or ethical dilemmas; purely practical challenges without explicit value/principle conflict were noted but not analyzed here. Four moral themes emerged: (1) truth-hope stewardship (balancing honesty with preserving hope); (2) rescue vs acceptance near end of life (e.g., whether to call 911 or escalate care); (3) good-caregiver identity vs. self-protection (managing others’ judgements while guarding emotional limits); and (4) goal-concordance uncertainty when preferences were unknown. Two ethical tensions were prominent: surrogate autonomy vs. best interest and decisional capacity/understanding at treatment turning points. Hybrid cases (moral + ethical) were common, and moral residue (“what ifs”) frequently followed decisions. Preliminary findings indicate caregiver routinely face moral/ethical dilemmas distinct from logistical barriers. A caregiver-informed typology can guide targeted supports (e.g., disclosure coaching, crisis planning, advance-care-planning prompts, post-decision debriefing) and sets up subsequent analyses of how caregivers navigate dilemmas and what impedes coping.