AHEAD OF INTERNATIONAL VOLUNTEER DAY TOMORROW (5 DECEMBER), WE CONTINUE OUR SERIES ON VOLUNTEERING HIGHLIGHTING THE IMPORTANT ROLE PLAYED BY VOLUNTEERS IN PALLIATIVE CARE…
Libby Sallnow, an Honorary Senior Clinical Lecturer at St Christopher’s Hospice, UK, the Marie Curie Palliative Care Research Department at UCL UK, and the WHO Collaborating Centre in Community Participation in Long Term and Palliative Care in Kerala, India, explores boundaries, power and the impact of volunteering in end-of-life care.
Volunteering is a long established and broad field in end-of-life care and a tremendous variety of approaches can be seen around the world. This series of blogs on volunteering has highlighted the importance of looking beyond common assumptions about the role of volunteering and the need to develop a strong evidence base to inform and support their roles.
Many end-of-life care services around the world could not function without volunteers; the financial dependence is well acknowledged as is the unique contribution that volunteers make to the lives of people and their families. Many aspects of end-of-life care services are run by volunteers such as fundraising, bereavement care or charity shops. (1) But volunteering, whilst being a large field in its own right, overlaps with other areas in end-of-life care. The diagram below illustrates two of the most significant interfaces: with workforce and public health approaches.
In many services, volunteers are a component of the workforce, through clinical or other direct support to patients, trustee or administration duties. Within this type of role, the volunteer works with paid members of staff, is subject to rules and governance similar to paid staff and the role is usually determined and managed by the organisation.
A second important interface is that with public health approaches. These approaches understand death and dying as social events with medical components and emphasise the need for a strong societal response alongside clinical services. Volunteers working within a public health approach are not fulfilling specific tasks or roles set by a service but represent a community response to issues around death, dying, loss and care. (2) Importantly, volunteers in this area have the ability to make decisions about the action they or others may take, determine local needs themselves and work alongside professionals or service leaders to build solutions. It is this autonomy that is a defining feature of volunteers within a public health approach.
A key determinant of where a particular volunteering approach sits on this diagram is the degree of power a volunteer holds and how power is shared or negotiated with the organisation. (3) In a workforce role this power is usually relatively limited as the roles and responsibilities are set by the organisation. Within volunteer-led roles, there is often autonomy to determine processes and practices, but governance structures mean the organisation ultimately holds responsibility. Within the public health aspect, the responsibility and power sits not with the organisation but with the wider community.
In reality, these boundaries are often blurred but determining where a volunteer role sits on this diagram is essential if we are to adequately conceptualise volunteers and volunteering, develop processes that acknowledge and support the differing needs for differing roles and design effective research studies.
These processes should align with the broader aims and aspirations of the volunteer, community or service and should include a consideration of power. This is where we will find the most fruitful and impactful volunteering contribution, for volunteers, patients, services and the wider community.
References and resources
- Burbeck R, Low J, Sampson EL, Bravery R, Hill M, Morris S, Ockenden N, Payne S, Candy B. Volunteers in Specialist Palliative Care: A Survey of Adult Services in the United Kingdom. Journal of Palliative Medicine 2014; 17 (5): 568-574
- Kumar S. Models of delivering palliative and end-of-life care in India. Current Opinion in Supportive and Palliative Care 2013; 7 (2): 216–222
- Sallnow L, Bunnin A, Richardson H. Community development and hospices: A national UK perspective. In: Wegleitner K, Heimerl K, Kellehear A (eds.) Compassionate Communities: Case Studies from Britain and Europe. Abingdon-on-Thames: Routledge; 2015 p 1-14.
- Contact Dr Libby Sallnow by email.
- Public Health and Palliative Care International.
- Compassionate Neighbours initiative.
- The EAPC Task Force on Volunteering.
- Read more posts about volunteering in palliative care on the EAPC blog.