" Community volunteers in palliative and end of life care have radically different experiences to volunteers within specialist palliative care services."
In this eHospice article Dr Aliki Karapliagkou Research Fellow in Applied Health Research at the University of Bradford discusses the tensions in community visiting volunteers and reviews the work done by the UK policy think tank 'Together at End of Life' in relation to community visiting volunteers.
Palliative Care NSW is currently finalising a research study into the experiences of community visiting volunteers in regional and rural NSW. The study is revealing some facinating insights into the 280 or so volunteers who travel, often long distances, to visit patients and family at home. Our final report should be available soon.
Principles of community volunteering in palliative and end of life care – Dr Aliki Karapliagkou, Research Fellow in Applied Health Research at the University of Bradford
Community volunteers lead the effort to socially engage people with end of life care needs. Numerous hospices and other charitable organisations in the UK (and in Europe) facilitate community development programmes led by volunteers1 . These programmes commonly provide befriending and companionship, but also meet practical, psychological and information needs.
For example, volunteer drivers take patients to medical appointments in rural, remote and economically deprived areas2. Volunteers help caregivers to identify a supportive social network, access information about available services, as well as organise and coordinate care3. They also promote meaningful communications, and facilitate processes of social recognition as people with end of life care needs4.
Current policy directions advise all citizens to cultivate ‘willingness to help’ people with end of life care needs (National Palliative and End of Life Care Partnership, 2015). Within this framework, and as part of their community development mission, community volunteers often move beyond the role of ‘befriending’ to identify and meet needs as they arise in the course of everyday life. The latter raises important questions about the ethics and limits of care provided by community volunteers:
- · Can and/or should palliative and end of life care services establish productive partnerships with community stakeholders?
- · Is regulation and control of volunteer-led activity possible and necessary?
A policy commission funded by Policy@Southampton aimed to draw broad recommendations on how we may best support volunteer-led initiatives in palliative and end of life care. An event held in London in July 2016, titled “Together at the End of Life”, brought together healthcare practitioners, academics interested in end of life care, community development workers and community volunteers to discuss and debate key issues.
Stakeholders agreed that volunteer-led community development needs to be permissive and accommodating, but some expressed concerns about the role of volunteers in palliative and end of life care. For example, they questioned the quality of care provided by non-professional stakeholders, as well as the risks that their practice may present for people who are at a particularly vulnerable phase in life.
Where volunteer-led community development is accepted practice, the debate focused upon its regulation. Hospices commonly lead such activity, and although most participants expressed the view that other organisations should be allowed to facilitate similar processes, the issue of health, safety and regulation contains expansion into other sectors.
Community volunteers in palliative and end of life care have radically different experiences to volunteers within specialist palliative care services. The latter have been reported to be dissatisfied and apprehensive about their roles5,6,7,8. Their relationship with healthcare professionals is also challenging and hierarchical7,8.
Volunteers in community development programmes are actively encouraged to adopt social roles, and develop close relationships with the people they support. They help people with life-limiting conditions and their caregivers gain a renewed sense of identity, establish new avenues of communication and support networks, and become socially integrated9,4.
The Policy Commission “Together at the End of Life next debated whether community volunteers are permitted enough flexibility to be able to intervene where they identify a non-prescriptive need, outside of their formal role of befriending. The following recommendations were drawn from this discussion:
- · Community development practice needs to open up and occupy the directions of multiple sectors in society – community and charitable organisations, social institutions, networks and interest groups.
- · The unique potential of volunteers to serve social needs at the end of life needs to be recognised and practically promoted in all policies.
- · This means that volunteers need to be able to act within their roles as citizens and address complex issues.
- · The best strategy towards safe community development practice is to cultivate social capital around end of life care.
Hospices and palliative care providers historically led and celebrated volunteer-led care. As we move into a more empowered approach to governance, one in which everyone is expected to be in charge of the decisions that affect their health and wellbeing10, we need to open up the space once dominated by professional care, and share it with other stakeholders – volunteers, professionals in other sectors, family members, and everyone who is willing to help. The latter will inevitably lead to a different form of care organisation; one that is participatory, cooperative and socially embedded.
1Wegleitner, K., Heimerl, K., Kellehear, A. (2016) Compassionate Communities: Case Studies from Britain and Europe. Routledge.
2Patel, M. (2016) Compassionate Communities in Sandwell, West Midlands, England. In K. Weigleitner, K. Heimerl, A. Kellehear (Eds.) Compassionate Communities: Case Studies from Britain and Europe. Routledge: London.
3Abel, J., Townsend, D. (2016) Developing community support networks at the end of life in Weston-super-Mare, UK. In K. Wegleitner, K. Heimerl, A. Kellehear (Eds.) Compassionate Communities: Case Studies from Britain and Europe. Routledge: London.
4Seigny, A., Dumont, S., Cohen, S.R., Frappier, A. (2009) Helping them live until they die: Volunteer practices in palliative home care. Nonprofit and Voluntary Sector Quarterly, Vol. 39(4): 734-752.
5Planalp, S., Trost, M.R. (2008) Communication issues at the end of life: Reports from hospice volunteers. Health Communication, Vol. 23(3): 222-233.
6Berry, P., Planalp, S. (2009) Ethical issues for hospice volunteers. American Journal of Hospice and Palliative Medicine, Vol. 23: 458-462.
7Claxton-Oldfield, S., Claxton-Oldfield, J. (2008) Some common problems faced by hospice volunteers. American Journal of Hospice and Palliative Medicine, Vol. 15: 121-126.
8Claxton-Oldfield, S., Hastings, E., Claxton-Oldfield, J. (2008) Nurses’ perceptions of hospice palliative care volunteers. American Journal of Hospice and Palliative Care, Vol. 25(3): 169-178.
9Burbeck, R., Candy, B., Low, J., Rees, R. (2014) Understanding the role of the volunteer in specialist palliative care: A systematic review and thematic synthesis of qualitative studies. BMC Palliative Care, Vol. 13:3.
10Kickbusch, I. (2007) Innovation in health policy: Responding to the health society. Gaceta Sanitaria, Vol. 21(4): 338-342.
For more information visit Together at the end of life: Volunteers in end-of-life care.
Image credit eHospice UK