'I don't think they really link together, do they?' An ethnography of multi-professional involvement in advance care planning in nursing homes.

BACKGROUND: Given the globally ageing population, care homes have an important role in delivering palliative and end-of-life care. Advance care planning (ACP) is promoted to improve the quality of end-of-life care in this setting. While many professionals can be involved in ACP, little is known about what influences multi-professional involvement and how multi-professional working impacts the ACP process in the UK. This study investigated multi-professional practice in relation to ACP in nursing homes. DESIGN AND METHODS: An ethnography was undertaken in two UK nursing homes using multiple methods of data collection: observations, interviews and document review. Participants included the following: nursing home residents (n = 6), relatives (n = 4), nursing home staff (n = 19), and visiting health and social care professionals (n = 7). Analysis integrated thematic analysis, mapping of resident ACP trajectories and documentary analysis. FINDINGS: This paper suggests that multi-professional and relatives' involvement in ACP was disjointed. Continuity and coordination were disrupted by misalignment of visiting professional and nursing home organisational structures. Findings show a 'knotworking' approach to teamwork and power imbalance between nursing home staff and visiting professionals, such as general practitioners. While residents wished their relatives to be involved in their ACP, this was not formally recognised, and limited support existed to facilitate their involvement. CONCLUSION: The structure and organisation of multi-professional and relatives' involvement in ACP led to fragmentation of the process. This marginalised the voice of both the resident and nursing home staff, thereby limiting ACP as a tool to enhance quality of end-of-life care.

Factors influencing the referral of non-cancer patients to community specialist palliative care nurses.

AIM: To understand why non-cancer patients are under-represented on the caseloads of community Macmillan specialist palliative care nurses by exploring what influences community health professionals' referral patterns of non-cancer patients in one locality of a primary care trust. DESIGN: The study adopted a qualitative design, making use of semi-structured interviews with a purposive sample of community health professionals comprising three GPs, three district nurses, and three community matrons. The framework approach was used for analysis. FINDINGS: The classification of patients, the perception of the palliative care service, the existence of different pathways of care for cancer and non-cancer patients, and the role of other specialist nurses all seem to influence the referral patterns of community health professionals. CONCLUSION: Although further research is required to fully understand all of the relevant viewpoints, in particular those of patients and carers, it appears that innovative new models of service delivery could be developed that address the engrained perception of the Macmillan nursing service as being for dying cancer patients only, as well as the blurred boundaries between Macmillan nurses and other senior clinical nurses.