Family experiences of the transition to palliative care in aged residential care (ARC): a qualitative study

Purpose: To address a gap in the literature by exploring bereaved families' perceptions of the transition to palliative care for their relative in long-term care. Methods: In-depth interviews were conducted with a convenience sample of twenty-six family members who were most involved in the care of residents who had died within the last 12 months. Interviews explored care, perceptions of staff palliative care knowledge, communication with staff, care planning and decision-making. The range of responses fit the Donabedian (1966) health care model of structure/process/outcome. In the case of long-term care, structure includes staff training; process is the manner of care and outcome would be a 'good' (or bad) death. Results: There was little evidence that a well-managed transition to a palliative approach to care was being initiated. Key themes included: 1) unrecognised need for transition; 2) information gaps and 3) feeling 'out of the loop'. Ten subthemes were also identified. Implications: Engaging family and relevant internal and external health providers in care planning not only promotes care in line with resident wishes but also assists family bereavement. Results indicate the need for the development of a new collaborative, multidisciplinary model to enhance the delivery of palliative care in long-term care.