Normalising and planning for death in residential care: findings from a qualitative focus group study of a specialist palliative care intervention

Abstract

Background Improving access to palliative care for older adults living in residential care is recognised internationally as a pressing clinical need. The integration of specialist palliative care in residential care for older adults is not yet standard practice. Objective This study aimed to understand the experience and impact of integrating a specialist palliative care model on residents, relatives and staff. Methods Focus groups were held with staff (n=40) and relatives (n=17). Thematic analysis was applied to the data. Results Three major themes were identified. The intervention led to (1) normalising death and dying in these settings, (2) timely access to a palliative care specialist who was able to prescribe anticipatory medications aiding symptom management and unnecessary hospitalisations and (3) better decision-making and planned care for residents, which meant that staff and relatives were better informed about, and prepared for, the resident's likely trajectory. Conclusions The intervention normalised death and dying and also underlined the important role that specialists play in providing staff education, timely access to medicines and advance care planning. The findings from our study, and the growing wealth of evidence integrating specialist palliative care in residential care for older adults, indicate a number of priorities for care providers, academics and policymakers. Further work on determining the role of primary and specialist palliative care services in residential care settings is needed to inform service delivery models.