Needs of family caregivers in the last days of life and soon after death: A nationwide study
S. C. Zambrano1, K. Loeffel2, S. Eychmüller1 (1Bern ; 2Freiburg)
Caregiving can extend between months and years, yet the last days of life are a distinct phase of care. Not only the health status of the dying person deteriorates acutely, but in addition to ‘usual’ caregiving tasks, and their own private lives, family caregivers (FC) often face difficult choices.
We aimed to better understand the specific needs of FCs in the last week of life and the first days after the death of a significant other.
We employed a qualitative survey approach. After obtaining ethical approval, we recruited bereaved FC through different institutions across Switzerland. We analysed data through thematic analysis and with descriptive statistics.
Participants were 373 FCs with an average age of 64 years, and predominantly women (69%). Just over half of the deceased were men (51%) with an average age of 76 years. In the last week of life, at least 25% of the deceased were cared for in two different settings, and 20% of FC remained unaware of approaching death. The main needs identified were focused on 1) the patient, 2) information, 3) other significant others, 4) own needs, and 5) on life outside caregiving. After death, needs were focused on putting affairs in order, grieving, and returning to work and routines. FC regarded informal support as more central than professional support, but wanted a guiding person across time and care settings. Further specific needs as well as groups in need of more support, such as men who are caregivers or those with less traditional familial structures, were identified.
Independent of place of care and place of death, the FC’s role is irreplaceable. FCs put the needs of the dying and others before their own needs and adjust their everyday life as needed. This can make dealing with challenges more difficult for those without informal or without specific forms of formal support. Families wished for a guiding person, such as a midwife that could ease the challenges of the end of life.