As I outlined earlier, one of my objectives for this thesis was to explore volunteers’ experiences of being with dying people and how this affected volunteers’ attitudes to death and dying. Whilst the findings show how the experiences enriched volunteers’ lives and how they leant to cope with dying and death, their stories included concerns about getting ‘too close’ and needing to be ‘professional’. In addition, some volunteers felt unable to share their experiences with, or seek support from, family and friends.
Many volunteer participants expressed surprise and pleasure at how good their experiences were. The belief that both the visiting, and coping with death, were going to be difficult may be reflective of the dominant discourses described in Chapter 2; that as a society we are frightened of death and have little experience of being with dying people (Department of Health, 2008; Howarth, 2007). It may also echo the professional discourses, relating to stress and burnout, which volunteers may have experienced as part of volunteer training, or ongoing support (Sanders et al., 2012). Although the volunteers were probably prepared for the death of the person they were visiting, the findings highlight how some volunteer participants appeared to think that being with dying people would be the same as a personal loss, and overwhelming. Therefore many participants expressed appreciation of the role of the hospice in preparing them to be with dying people. Figure 7.3 shows some of the
Figure 7.3 Different beliefs about death
The additional factor seen in the findings was the influence of the dying person. Volunteer participants told how being alongside dying people gave them a more positive story about death and dying, and these experiences changed how they thought about life. The potential benefits of being with dying people were highlighted by a number of other authors (Brown, 2011; Claxton-Oldfield and Claxton-Oldfield, 2007; Cloyes et al., 2013; Guirguis-Younger and Grafanaki, 2008). However, in this research, hospice rules appeared to constrain the volunteers from sharing their experiences, and not all volunteers felt that they could, or should, share stories outside the hospice system.
The studies by Robinson et al. (2010) and McKee et al. (2010) demonstrate that volunteers appear able to manage to negotiate such dilemmas about confidentiality. However, Morris et al. (2015) suggest that hospice managers may be concerned about regulating community volunteer activity and therefore managers may be reticent to let volunteer make such decisions themselves. Stories have been used throughout the history of hospice care and can be powerful vehicles for change (Clark et al., 2005); however, constraining volunteers from talking about their experiences, may further contribute to the narrative that death and dying can only be talked about within the confines of a medical professional system.
The rule perceived by volunteer participants that sharing stories outside the hospice was not allowed also appeared to prevent volunteers from seeking emotional support from friends and family. Whilst some volunteer participants drew on their own informal network for support, as described by Macleod et al (2012), others told how they turned to hospice staff for support and guidance after someone had died. This could be viewed in several ways: that volunteers had a good relationship with staff and could turn to them for support; or that they needed to do so because using family and friends for support was not allowed; or that they felt that only hospice staff would be able to support them. Hospice staff may also have offered themselves as a source of support, which may have given the volunteers the impression that they should use hospice staff, rather than anyone else.
The need, as expressed in the findings, to be ‘professional’ in coping with loss appears to connect with the idea of not getting ‘too close’. This need to be ‘professional’ could be seen to be a result of feeling part of a formal hospice system and having to comply with hospice guidance, or that volunteers may feel they need to emulate how hospice staff coped with death and loss. It is not clear from the stories where the volunteer participants acquired the idea to use the role model of doctors and nurses to help them cope with repeated deaths and be able to ‘move on’: possibly from their own experience of witnessing the behaviour of doctors and nurses, or from palliative care staff, or perhaps even from the seeing doctors and nurses on television. The stories of either being ‘too close’ or behaving ‘professionally’; and ‘following the role model of doctors and nurses’ may also reflect particular narratives that are available to people when making sense of their experiences, as suggested by Dallos and Draper (2000). Although the volunteers did find this strategy useful in coping with multiple losses so that it need not be perceived as negative, there is a risk it perpetuates the idea that doctors and nurses are the experts on death and coping with loss.
These findings appear to strongly support the perspective, noted by Howarth (2007), that dying in the Western world has moved into the domain of healthcare professionals and that people are less familiar with death. The dominance of this discourse may be a direct result of death mainly occurring in hospitals and care homes, rather than at home amongst families and friends (Gomes et al., 2011). It was clear that volunteers did not always feed back their experiences to staff, so staff may
The findings demonstrate that spending time with dying people has the potential to offer a new narrative about dying and death, and coping with repeated losses, which might not have been available to those who had not experienced multiple deaths before. In the same way that the carers in the study by Horsfall et al. (2015) developed a ‘triumphal’ discourse, the volunteer participants’ positive stories about coping with repeated losses, without being overwhelmed by them, could provide a new narrative about death, and have the potential to contradict the discourses seen in the literature that, as a society, we are frightened of death and dying. If volunteers did feel able to share their stories, they themselves might become role models for coping with death, rather than doctors and nurses. However, hospice rules about confidentiality, and over-arching laws about data protection, could be said to be constraining volunteers from sharing these positive stories about dying and death.