Volunteering in Palliative Care in France: “A Tough Job”; Patient, Family, Caregiver, and Volunteer Perspectives

Abstract

This chapter discusses the place of volunteering in palliative care in the context of hospital services in France, and the meaning each actor gives to that presence. Its aim is to go beyond general normative discourse on the role of these volunteers in order to highlight their actions from a little-explored perspective (awkwardness, fears, reticence their activity can create) but one essential to their development. We attempt to understand how (and within what work settings) personnel and volunteers "work" together, and how that lay presence is perceived by patients and families. This research is based on a literature review and individual semi-structured interviews with patients, families, medical personnel, and volunteers in 10 hospitals. In all, 114 persons were interviewed in three work settings: palliative care units, mobile palliative care teams, and traditional services. The analysis highlighted a diversity of perceptions on volunteering, as a function of the type of actors involved and the work setting. It raises the question of the role of nonprofessional actors in hospitals, and of what form volunteering in palliative care should take in France, where volunteers explained they "are there" not "to do", but just "to be there out of human solidarity".

A Qualitative Study on the Position and Role of Volunteers in Integrated Care—An Example of Palliative Care in Croatia

“…Furthermore, the question addressed in research on volunteers related to the formalization of their role is how rules and oversight might negatively affect the intrinsic motivation of the volunteers themselves [39]. Additionally, as volunteers generally donate their time and are there to be present, there is a question of the line between volunteering and unpaid work, in the case of further formalization of volunteers' roles in long-term care [41,42]. The second question is whether volunteers should complement or substitute the work of professionals [43,44].…”

The decision making process of being palliative volunteer

“…The volunteers' viewpoint was "being there to be there". Indeed, they described the palliative care model and their missions in quite similar terms: "represent civil society to show these people that we are not abandoning them", "ensure a presence and a willingness to listen", "make oneself useful", "do things in a humane way for the person", and "be there to be there" [30].…”