"I couldn't": A phenomenological exploration of ethical tensions experienced by bereaved family members during the pandemic

• Published in: International journal of qualitative studies on health and well-being Vol. 18; no. 1; p. 2186337
• Main Authors: Vachon, Melanie, Guité-Verret, Alexandra, Ummel, Deborah, Girard, Dominique
• Format: Journal Article
• Language: English
• Published: United States Taylor & Francis 01.12.2023; Taylor & Francis Ltd; Taylor & Francis Group
• Subjects: Bereavement; Caregivers; Caregivers - psychology; Collective responsibility; COVID-19; dilemma; Empirical Studies; End of life decisions; Ethical dilemmas; Ethics; Family - psychology; family caregivers; Frame analysis; Humans; Interpretative phenomenological analysis; Long term health care; Long term hospitals; Medical ethics; Moral dilemmas; moral distress; pandemic; Pandemics; phenomenology; Psychological distress; Public health; Qualitative research; Relatives; phenomenology; Bereavement; family caregivers; moral distress; ethics; pandemic; dilemma
• ISSN: 1748-2631; 1748-2623; 1748-2631
• DOI: 10.1080/17482631.2023.2186337

The COVID-19 pandemic entailed significant changes in accompaniment, end-of-life, and bereavement experiences. In some countries, public health measures prevented or restricted family caregivers from visiting their dying loved ones in residences, long-term care institutions, and hospitals. As a result, family members were faced with critical decisions that could easily lead to ethical dilemmas and moral distress. This study aimed to understand better the experience of ethical dilemmas among family caregivers who lost a loved one. We interviewed twenty bereaved family caregivers and analysed their narratives using Interpretative phenomenological analysis. Our analysis suggests that family caregivers struggled with their multiple responsibilities (collective, relational, and personal) and had to deal with the emotional cost of their choices. Results display three emerging themes describing the experience of ethical struggles: (1) Flight or fight: Struggling with collective responsibility; (2) Being torn apart: Assuming relational responsibility and (3) "Choosing" oneself: The cost of personal responsibility. Results are discussed and interpreted using an ethical, humanistic, and existential conceptual framework.