Context

Many individuals express a preference to receive end-of-life care in their own home, and social discourse frequently extols the home as the ‘best’ place to die. However, the likelihood and overall experience of a home death depend on crucial factors such as family support, access to home care nursing services and the complexity of individual situations. Home care nurses (HCNs) are critical in facilitating planned home deaths and are an important source of wisdom into what enables or hinders this process.

Findings

Supportive work cultures and family availability facilitated the achievement of planned home deaths. These include a sense of shared responsibility and commitment to this goal, and having sufficient family members willing to provide care for the patient and support each other for as long as necessary. Barriers included nurse and supply shortages, lack of palliative care expertise and fragmented care across day and night shifts. To make home deaths happen, nurses had to stockpile supplies and volunteer to be on-call after-hours, without being paid. Better support, training and resources are needed to make home death a viable option.

Commentary

The ethnographic approach effectively captures HCNs’ experiences of planned home death within the broader realities of home care nursing. While the number of observations was limited, they were rich and evocative. For example, one passage reveals that nurses stockpile intravenous fluids and that it is customary to use coat hangers as intravenous racks. Such description makes clear that planned home deaths are only possible because of the resourcefulness and grit of individual nurses.

While the authors rightly state that ethnography uncovers cultural values, they do not explicitly mobilise this concept in this paper. The finding of ‘supportive cultures’ ultimately refers to a shared ethos. In a local care system where values are made explicit, and there is genuine commitment at all levels to actualise those values, the work of nurses towards an ethical goal can happen firmly within, rather than over and above, their everyday role.2 Explicit attention to the values that guide HCNs in their facilitation of planned home deaths, and how these values are realised or thwarted in practice, would provide an epistemic resource to advocate for nurses’ work to be better supported. As the authors point out, when nurses silently go ‘above and beyond’, this obscures their need for support and contributes to their continued exploitation.

The impossibility of home death without family, as also highlighted in this study, underscores the need for a family-centred ethic in policy development. It is also essential to recognise and respect the diverse desires, goals, fears, hopes and capacities of individual families, and advocate for better systemic support to reduce the burden placed on them. Any ethical healthcare system should ultimately be responsive to families’ needs, not exploit their labour to compensate for limited financial and human resources.3