Good end-of-life care in nursing home according to the family carers' perspective: A systematic review of qualitative findings.

Abstract

Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase. To identify the elements that nursing home residents' family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective. Systematic review (PROSPERO no. 95581) with meta-aggregation method. Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied. In all, 18 studies met inclusion criteria. A 'life crisis' often resulted in a changed need of care, and the transition towards palliative care was sustained by a 'patient-centered environment'. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident's end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care. The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.