UNDER THE LENS – A NEW SERIES ABOUT VOLUNTEERING HIGHLIGHTING THE IMPORTANT ROLE PLAYED BY VOLUNTEERS IN PALLIATIVE CARE…
Professor Anne Goossensen, Steering group member, and Dr Ros Scott, Co-chair, both connected to the European Association for Palliative Care (EAPC) Task Force on Volunteering, explain why it’s important to choose the right words to describe the essence of volunteering.
It is not uncommon for hospice and palliative care organisations to declare that “Our volunteers are friendly and welcoming”, or to describe volunteers as “stars” and “heroes”. What does this really tell us about volunteers in hospice and palliative care (HPC) and the difference they make to the lives of patients, families, staff, organisations and themselves? While these descriptions are likely to be true and intended as compliments, in reality they can have the effect of patronising and diminishing the contribution of volunteers to palliative care.
Also, to describe HPC volunteering in terms of motivations, tasks and activities that are provided by assistants to paid staff will reduce recognition of the value of volunteering.These words reflect professional language – language that appears quite different from the words of volunteers themselves.
The EAPC Task Force on Volunteering undertook a story project in which volunteers from eight different European countries were asked to write about what they did and what volunteering meant to them. Volunteers wrote about their experiences in very different terms. The language they used was about building relationships, being there, attentiveness, vulnerability and compassion. They focussed on the relational meaning of their work, on how it had changed their lives, how they learned from patients and families and of their depth of respect and admiration for those they supported. They spoke of love and laughter, of sorrow and of joy and the privilege of being trusted to be the person that the patient and family needed in that moment. (View PDF of Story Project Presentation).
Speaking of roles and tasks and boundaries does not seem to grasp the essence of volunteering. These are not words that reflect the impact of the volunteer that sits with a patient at the end of life because there is no one else, nor do they reflect volunteers in Kerala, India who are often the people who identify those in need of palliative care. They do not describe the difference made by the volunteer who provides respite to family members, who sits quietly and listens to the fears, anxieties, sadness, and joy of patients and families, or who continues to support families through bereavement. Nor do they tell of the difference that volunteers make, by spending their time helping to cook meals, keeping HPC environments clean and welcoming, raising vital funds or educating the public about HPC.
Perhaps it is not surprising that volunteering is still trying to find recognition and its place within HPC. A universally understood, flexible but recognised place, alongside paid staff, patients and carers, that encompasses the ethos of volunteering in terms of spontaneity, creativity and the ability to respond relationally to human need.
Finding this place might be about choosing the right words to describe this valuable resource in palliative care. Words that bring human-to-human connections of attention and compassion.
Links and resources
- The EAPC Task Force on Volunteering.
- Goossensen A, Understanding the Value of Volunteers in Hospice and Palliative Care: Language Matters, Palliative Medicine & Care International Journal, June 2019.
- The Voice of European Volunteers: A qualitative analysis of accounts of volunteering in palliative care contexts. (Download PowerPoint Stories_Presentation).
- Read more posts about volunteering in palliative care on the EAPC blog. Look out for the next post in the series by Dr Libby Sallnow.
Please sign the EAPC Charter on Volunteering.
More about the authors
Professor Anne Goossensen is Professor Informal Care and Care Ethics, University at Humanistic Studies in Utrecht, The Netherlands. Follow Anne on Twitter@anne_goossensen
Dr Ros Scott is a Volunteering Researcher and Consultant and Honorary Research Fellow at the University of Dundee, Scotland, UK. Follow Ros on Twitter @RoscRos