Building Death Literacy Through Last Aid: An Examination of Agency, Ambivalence and Gendered Informal Caregiving Within the Swedish Welfare State

ABSTRACT

In the last two decades, health promotion strategies have gained significant attention in end-of-life care contexts—engendering greater focus on community and informal care in policy and healthcare spheres in liberal welfare-states. The emergence of health-promoting palliative care (HPPC) in the Nordic context presents a unique challenge to the abiding social contract of care which emphasizes the de-familialisation of child- and long-term care. This study reflects upon the implementation of one HPPC inspired educational initiative, called Last Aid, into a Swedish context and its influence on social relations of care within the welfare state model. Participants articulated Last Aid as a tool which helped them reclaim agency amidst the inertia of competing norms and expectations of informal caregiving. These findings indicate that the implementation of Last Aid into the Swedish context is characterized by a tension between norms of institutional caregiving versus community caregiving, representing a case of sociological ambivalence. Furthermore, the data shows that women disproportionately perform informal caregiving for seriously ill significant others in an institutional context where state care services are diminishing. Employing a feminist analytical approach, these results, and the HPPC perspective, are discussed in light of trends towards welfare retrenchment in the Nordic countries.

KEYWORDS:

• Palliative care
• informal caregiving
• care ethics
• welfare

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. ”Significant others” is used in this case to represent not only biological relatives but persons who are personally important to the patient.

Additional information

Funding

This work was supported by the Kamprad Family Foundation under Grant #2019 0264.

Notes on contributors

Jamie Woodworth

Jamie Woodworth is a doctoral student in Gender Studies at Lund University, based at The Institute for Palliative Care. Her thesis explores the construction and maintenance of caring relationships in and around the end-of-life.