In this paper, we offer a phenomenological and hermeneutical perspective on the presence of clinicians who care for the suffering and dying patients in the context of end-of-life care. Clinician presence is described as a way of (1) being present to the patient and to oneself, (2) being in the present moment, and (3) receiving and giving a presence (in the sense of a gift). We discuss how presence is a way of restoring human beings’ relational and dialogical nature. To inform a different perspective on relational ethics, we also discuss how accompaniment refers to the clinician’s awareness of the human condition and its existential limits.
Introduction
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.
Aim
This study aimed to understand better the experience of ethical dilemmas among family caregivers who lost a loved one.
Methds
We interviewed twenty bereaved family caregivers and analysed their narratives using Interpretative phenomenological analysis.
Results
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.
Discussion/Conclusion
Results are discussed and interpreted using an ethical, humanistic, and existential conceptual framework.
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