Difficulties in navigating the intersection of generalist and specialist palliative care services: A cross-sectional study of bereaved family's experiences of care at home in New Zealand.

Abstract

A generalist-specialist model of palliative care is well established as a framework for the provision of community care in resource-rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross-sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3months of life. A modified version of the Views of Informal Carers-Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi-square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty-six questionnaires were returned (response rate=21%). Seventy per cent of people (n=579) spent some time at home in the last 3months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision-making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that "generalists" are willing and able to play a key role in palliative care provision needs to be further challenged.