Supporting a dying relative: between working and end-of-life care

Terminally ill persons often receive support by their closest relatives. These informal caregiving family members (parents, children, spouses, friends) usually work at the same time, so that their burdens are heavy. How do they deal with the competing demands of working and supporting a dying relative? Do they want to, and can they, reprioritise the different tasks? What resources can they mobilise to support their dying relative adequately? This study wants to find answers to these questions and build a bridge between the world of caregiving and the world of employment.

This study aims to contribute towards better integration of employed persons in supporting their dying relative. Its objective is to create a satisfactory situation at work for everyone involved (employer, employees, family member, care assistants). Using an anthropological research approach, approximately 20 life situations will be documented. The researchers will conduct observations and interviews with different persons involved to gain an understanding of the hurdles that employees must overcome in this situation.

Employed family members should be relieved; at the same time this study will help decision-makers to improve support services for family members who are giving care to their dying relative. The results should help nursing staff to better understand the pressures of working and supporting a dying relative. The study will also collect data that can inform the coming policy debate on care leaves and alternative models. The legal framework conditions in Switzerland today are restrictive: family members caring for a sick child are granted only a three-day leave of absence.

Working and supporting a dying relative: reconciling employment and palliative care in 'end of life' situations