The changing roles of volunteers and health professional within a Compassionate Communities approach to end of life care

Problem

The Ambitions for Palliative and End of Life Care (2015) is a national framework for actions to improve quality of care and increase the capacity to support more people in the community. Most people describe a preference to die at home but the majority continue to die in hospitals. The challenge is to enable more people to remain at home and reduce hospital deaths. One suggested solution comes through the Compassionate Communities initiative - a public health palliative care approach first launched in 2008 with the aim of improving care for people at end of life through providing greater support from the community. Local healthcare providers work to develop and increase community involvement and volunteers to support people at end of life. Ten years on from its introduction, little is still known about whether and how Compassionate Communities addresses the end of life care agenda.

Approach

This study examines how different models of Compassionate Communities are understood and experienced by patients, volunteers and professionals in order to critically consider impact of care and support at home. This qualitative multi-sited case study examines three contrasting examples of Compassionate Community development. Each of the research areas have different socio-demographic profiles and end of life care provisions. The main data collection methods were interviews and focus groups with patients, carers, volunteers and professionals and explored the lived experience of being supported and providing support. The theoretical framework for data analysis is interpretative phenomenology supported by NVivo 10 for data management.

Findings

The findings suggest that the role of volunteers supporting patient and carers as part of Compassionate Communities initiatives is being extended for example, in some cases they sit with people all through the night. It is a formal role providing informal support. The integration of the volunteers within the community team has allowed the nurses to build confidence as the volunteers have been a bridge between them and the patients and their carers’. This results in some ambiguous role boundaries between volunteers and nursing staff and issues of organisational change and governance. Developing a more extended role for volunteers within a Compassionate Communities approach has been challenging, however, the outcomes of the support is evidently valued by patient, carers and professionals.

Consequences

The emerging data points to changes in the roles for volunteers and professionals within a Compassionate Communities approach. At a time when professionals are struggling to meet the demands of care needs, utilising volunteers as part of a community team to support patients and their carers’ enables them to remain at home at end of life. Significantly, it realises Ambition six of the national framework calls for action to increase and find new ways to deliver better care in the community.