Together at the end of life; Volunteers in end-of-life care

Volunteering has received considerable attention as a valuable resource to support services and build communities based on trust, empathy and cooperation. In palliative and end-of-life care, volunteer-led programmes provide in-hospice support, as well as help to reach out and deliver informal care in the community.

The policy commission “Together at the End of Life”, subtitled “Volunteer-led Programmes in End-of-Life Care: Designing future practice directions” was funded by Public Policy|Southampton. The project arose from research in the Faculty of Health Sciences at the University of Southampton into the development of models of support for family caregivers in palliative and end-of-life care. The key objective of this policy commission was to focus our attention upon contested issues, clarify concepts, provide a moment to reflect upon our practices and assumptions, and on the basis of the above to draw key messages for policy-makers.

The past decade has seen a shift towards community engagement in palliative and end-of-life care in the UK. The National Council for Palliative Care (NCPC) promotes community engagement as a strategy towards development awareness and fostering communication about death, dying, loss and bereavement, as well as forming supportive networks of care in the community (for more information see here). Volunteer-led programmes play a key role in pursuing these community engagement directions in palliative and end-of-life care.

“Together at the End of Life” concentrated upon four issues that cause considerable confusion among stakeholders. The policy commission was thematically organised to debate:

1. Organisational challenges – the obstacles that organisations such as hospices encounter in their effort to implement volunteer-led community development programmes.

2. Community development challenges – ways in which community development workers and community volunteers manage organisational challenges to deliver personalised care.

3. Voluntary practice challenges – the roles of volunteers in palliative and end-of-life care.

4. Policy challenges – suggested steps and directions to build trust and cooperation between healthcare and informal community care, and utilise the full potential of volunteer-led supports.

A key observation was that there is relative lack of awareness about the diversity of volunteer-led supports. Simultaneously, there is mistrust among professional stakeholders towards informal forms of support led by volunteers. The latter is particularly pronounced in ‘befriending’ schemes that involve community volunteers supporting people with end-of-life care needs and caregivers (types of support include but are not limited to emotional and practical support). It was suggested that drawing policies that encourage communication and collaboration between public services and informal forms of support in the community can reinforce ordinary networks of care that help vulnerable groups such as caregivers, burdened by care responsibilities.

 

 

Meet the research team

Dr Christopher Bailey is an Associate Professor and Director of the Faculty Graduate School at the Centre for Innovation and Leadership in Health Sciences, Faculty of Health Sciences. Chris’s own research focuses on the needs of families and health care professionals in the context of palliative and end-of-life. Chris has a particular interest in using research in a participative way to evaluate the impact of health care innovations and implementation strategies.

Dr Aliki Karapliagou studies Sociology and is particularly interested in social inequalities in health and end-of-life care. She advocates public health approaches to promote health and wellbeing among vulnerable populations - particularly ethnic minorities and people with end-of-life care needs. Aliki is currently researching the basic elements of community-based volunteer-led support for caregivers in end-of-life care that will help design, implement and evaluate a community-based volunteer-led intervention. The project is part of an NIHR research study, led by the Faculty of Health Sciences at University of Southampton.

Relevant policy documents