‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer

Abstract

Background: Most cancer patients state a preference for home death. Care and support from primary caregivers are important to enable dying at home. A preference for home death from the perspective of couples has rarely been investigated. Objectives: To explore how a preference for home death is understood and enacted in couples where one of the partners is dying of cancer. Design: A qualitative interview research design with a narrative approach was used. Methods: Five couples participated in dyad interviews. During the analysis, two interviews that particularly illuminated couples’ shared and individual views were chosen as the primary cases. Results: The interviews show, in two highly different ways, how a preference for home death is a significant relational matter. The interviews are presented as two cases: ‘Struggles in an Unknown Terrain’ and ‘Reliance at the Kitchen Table’. They show how a preference for home death can be understood and enacted as a struggle or as reliance based on the couple’s shared biography and the partner’s ability to care for the partner during the end-of-life phase. The analysis highlighted the negotiations that underpin a preference for home death. In these negotiations, the couples drew on idealised understandings of home death. These ideas were supported by cultural values related to autonomy and independence as well as participation and citizenship. Thus, in the negotiations about being cared for and caring, legitimate dependency and the maintenance of a reciprocal relationship were balanced. The presence of healthcare professionals and medical devices in the home had to be balanced with the need to maintain a sense of self and an authentic home. Conclusion: A relational perspective on a preference for home death made us attentive to couples’ negotiations. These negotiations give couples the opportunity to re-evaluate and reconfirm individual and mutual needs in the end-of-life phase.

Ambivalent and heavy burdened wanderers on a road less travelled: A meta- ethnography on end-of-life care experiences in rural areas

“…Studies have shown that a personalized and comfortable environment at home is crucial for a peaceful end-of-life experience [10,66]. Gerber et al [9] and Auren-Møkleby et al [67] highlighted that choosing to die at home is often a reflection of a person's desire to maintain their sense of self, independence and autonomy. They also emphasized that end-of-life decisions are influenced by several personal, contextual and relational factors [9,67].…”

Demystifying Cancer Deaths—Location, Location, Location

“…Even within individual couples, there may be a different perspective around dying at home, with different views expressed by the individual partners. 6 There has been development of government policies in both the USA and the UK to enable increasing access to hospice care 7 ; however, despite this, the discrepancy of access remains, as demonstrated by the paper published in this journal.…”