Crisis in Caregiving: When Home-Based End-Of-Life Care is No Longer Possible

Abstract

Understanding the factors that precipitate caregiving crises that cannot be resolved at home is central to improving options for care at life's end. The purpose of this study was to explore caregivers’ perceptions of the crises that preceded and were resolved by relocation during end-of-life care. In-depth interviews were conducted with 36 caregivers of people who died in a hospice house. The results illuminate a conceptual model of the caregiving crisis, which has three stages: a) precipitating factors — the interrelationship between illness trajectory and reciprocal suffering (physical, psychological, emotional and social distress), b) crisis, and c) resolution (settled or unsettled). Relocation presents an opportunity for families to relinquish the burden of end-stage care so that they can resume and complete a lifelong relationship. Careful recognition of and attention to the intimate dynamics that accompany suffering and dying are essential elements of palliative care, which aims to uphold the dignity of the dying person and the integrity of the family in both caregiving and bereavement.