Advocating for end-of-life choice at home: a survey of rural Australian nurses.

Abstract

Rural healthcare resource limitations can affect the choices people make and their quality of life during its end stages. In rural regions of Australia, district nurses (DNs) working in generalist community roles provide access to care by visiting people in their homes. They may be well positioned to improve the quality of the end-of-life experience by advocating for choice and person-centred end-of-life goals; however, knowledge about care in this context is limited. Initial findings from an exploratory qualitative study describing how rural DNs are able to successfully advocate for the end-of-life choices and goals of people living at home need to be confirmed and further developed to inform clinical practice. This survey aimed to test and complement the findings from a narrative exploration of how DNs advocate successfully for the end-of-life goals of rural Australians. A sequential mixed methods study based on a pragmatic design was used to explore how DNs advocate successfully for the end-of-life goals of rural Australians. In the first phase of the study two stages of reflection on experience by rural DNs from the state of Victoria (N=7) provided written and in-depth narrative understandings of how advocacy is enabled and actioned in the practice context. The data were analysed with interpretive description, resulting in findings that could be used to inform a survey for the second phase. The survey, reported here, was designed as an online questionnaire to be distributed by email across inner and outer regional Australia. It was trialled by rural health professionals (N=13) and modified according to the advice received. The participation criteria for the survey specified registered nurses working in generalist community nursing roles with experience in providing successful end-of-life advocacy for people at home. Scales were used to test and complement the phase 1 findings and analysed using Cronbach's alpha and descriptive statistics, with a 95% confidence interval calculated. Open-ended questions added to complement the understanding of how successful advocacy is enabled and actioned in this context were analysed with descriptive interpretation. A self-selecting sample of nurses (N=91) responded to the survey between March and July 2015. The response came from most Australian states and territories, and confirmed the findings that willing nursing involvement in end-of-life experiences, specialised rural relational knowledge, and feeling supported, together enable nurses to advocate successfully for person-centred goals. Actions based on advocacy that were highly rated for success include holistic assessment, effective end-of-life communication and the organisation of empowering and supportive care, confirming the phase 1 findings. High levels of emotional intelligence, understandings of 'going beyond duty', the types of support used and the need for advocacy for resources were reported. The results provide both confirmatory and new knowledge that can be used with confidence to inform practice with a model for rural end-of-life nursing advocacy in the home setting.