Volunteers in End-of-Life Care: How is their Role Constructed?

France, Rachel (2020). Volunteers in End-of-Life Care: How is their Role Constructed? PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.0001123c


This thesis explores the everyday world of hospice volunteers in two UK adult hospices using an ethnographic approach combining participant observation, ‘extended conversations’ with staff and analysis of hospice documents. I aimed to uncover how the hospice volunteer role was constructed drawing on data from volunteers in three care settings: day hospice, inpatient and bereavement. The thesis employs Hockey’s (1990) conceptualisation of the hospice ‘journey’ as a ‘biological continuum’ – from living to dying, to death and (for bereaved relatives) back to life – to illuminate how the construction of the volunteer role depends on the proximity to the life death boundary of the patient/client in these settings.

Following Ganesh and McAllum’s (2012) proposition that ‘volunteer’ and ‘professional’ are constructed in tension with each other, I argue that death and dying is professionalised terrain in which, volunteers as un-professional and thus potentially ‘threatening’, are problematic. Drawing on Douglas (1966/2002), I suggest that volunteers may be ‘matter out of place’ (p.203) and that volunteering could be incommensurable with the medical model.

The thesis distinguishes volunteers in ‘general’ roles (serving meals and drinks, washing up and socialising with patients) from those offering skills for which professional training is required, mostly complementary therapists and care assistants. It shows how the roles of the former are ‘bounded’ to keep them away from death and dying, while the latter are the subject of more direct strategies to treat them as either anomalous or ambiguous.

Relegating volunteers, particularly those in the inpatient unit, to the periphery of hospice care regardless of the skills they offer contrasts with hospice ideology that volunteers are an integral part of the non-hierarchical multi-disciplinary team. This thesis has helped to reveal the extent to which this is the case.

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