Informal caregivers – A missing voice in clinical ethics

Abstract

This paper argues that the missing voice in clinical ethics is that of informal caregivers. Despite their substantial contribution to care provided to individuals with disabilities, chronic illness or dementia, informal caregivers are rarely thought of as members of the healthcare team and their narratives are rarely listened to and included in clinical and ethical decisions. Addressing this gap, this paper discusses the reasons for the systemic misrecognition of informal caregivers in healthcare systems and argues for their greater narrative inclusion on the clinical, legal and social planes.

Phenomenologies of care: Integrating patient and caregiver narratives into clinical care

“…Relatedly, Aleksandra Glos highlights the overlooked role of informal caregivers in the healthcare system, pointing out their significant yet unrecognized contributions to caring for individuals with disabilities, chronic illnesses, or dementia. 2 Glos argues that these caregivers are seldom considered part of the healthcare team, and their perspectives are not adequately integrated into clinical and ethical decision-making processes. She explores why informal caregivers are systematically undervalued and advocates for their narratives to be more inclusively recognized and incorporated at clinical, legal, and social levels.…”