Patients’, relatives’ and nurses’ experiences of palliative care on an advanced care ward in a nursing home setting in Norway

Aim: The aim was to explore patients’, relatives’ and nurses’ experiences of palliative care on an advanced care ward in a nursing home setting after implementation of the Coordination Reform in Norway.

Design: Secondary analysis of qualitative interviews.

Methods: Data from interviews with 19 participants in a nursing home setting: severely ill older patients in palliative care, relatives, and nurses. Data triangulation inspired by Miles and Huberman was used.

Results: The overall theme was “Being in an unfamiliar and uncaring culture leaves end-of-life patients in desperate need of holistic, person-centered and co-creative care”. The main themes were: “Desire for engaging palliative care in a hopeless and lonely situation”, “Patients seeking understanding of end-of-life care in an unfamiliar setting” and “Absence of sufficient palliative care and competence creates insecurity”. The patients and relatives included in this study experienced an uncaring culture, limited resources and a lack of palliative care competence, which is in direct contrast to that which is delineated in directives, guidelines and recommendations. Our findings reveal the need for policymakers to be more aware of the challenges that may arise when healthcare reforms are implemented. Future research on palliative care should include patients’, relatives’ and nurses’ perspectives.