‘We Don’t Want to Go and Be Idle Ducks’: Family Practices at the End of Life

Abstract

At present, end-of-life research, policy and practice typically prioritise the dying individual and consider the family an orbiting static unit. Sociological theorising of dying has reflected this trend, focusing on the macro-level and public rather than private sphere, with sociologists engaged in the study of family and relationships overlooking the end of life altogether. In addressing this gap, this article argues that the end of life is a relational experience in which everyday family practices are embedded and enacted. Drawing on two ethnographic studies, it demonstrates some of the ways in which family is actively ‘done’ at this time, principally in the transference of family practices into institutional settings, and shared decision making. In doing so, it makes a case for moving beyond a highly individualised emphasis on the person nearing the end of their life and an accompanying normative conceptualisation of family, towards an understanding that families (in all their diversity) and their continued (un)making are central to the experience.

Feeding the family at the end‐of‐life: An ethnographic study on the role of food and eating practices for families facing death in Portugal

“…Following this train of thought, care takes places through food and eating practices within the context of relationships between the actors (in particular, between patients and their family members) involved in the dying process. The study supports sociological research which understands the dying process as a relational experience (Borgstrom et al, 2019;Broom & Kirby, 2013;Kellehear, 2008) and intends to develop sociological knowledge on the materialities of care in healthcare contexts, namely the practices of care at the end-of-life (Buse et al, 2018;Ellis, 2018).…”

“…Drawing on the assumption that the dying process is (also) a relational experience (Borgstrom et al, 2019;Kellehear, 2008), and following the work of Ellis (2018) we intend to explore the material and social significance of food and eating practices for families facing a life-threatening illness. Thus, food is analysed as a means capable of providing clues to understand the changes that occur in family dynamics at the end-of-life.…”

Religious Experiences of Older People Receiving Palliative Care at Home

“…However, this research has mainly considered the experiences of the bereaved, rather than how a dying person narrates the future bond, which we have addressed in this paper. There are some recent studies on the relations between a dying person and their loved ones during end-of-life care (Borgstrom et al 2019;Ellis 2013), but even these only touch on how to continue this bond after death.…”

Beyond the hour of death: Family experiences of grief and bereavement following an end-of-life hospitalization in the intensive care unit

“…Medical sociologists have also conducted qualitative studies in the hospital that highlight the medical management of death (Timmermans, 2005) and ethical issues that arise in medicine and more specifically in the ICU (Fox, 1990; Timmermans, 1999; Zussman, 1992). Sociologists have also focused primarily on the dying person and have largely not considered the family members of the dying and their relationships at the end of life until recently (Borgstrom et al, 2019; Broom and Kirby, 2013). Building on earlier work around end-of-life issues in the hospital setting, Kaufman (2005) demonstrates the ways in which timing and the hospital system shape death and the experience of dying by following patients and their family members in the hospital at the end of life.…”

“…Research in the social sciences tends to separate end-of-life care and grief and bereavement into two different siloes with research on end-of-life decision-making focused on the pre-death (Anspach, 1993; Kaufman, 2005) and research on grief and bereavement as separate processes (Jakoby, 2012; Walter, 2008). Scholars call for further sociological perspective in studying dying, death, and bereavement because of the importance of the social contexts in which each of these experiences take place (Borgstrom et al, 2019; Thompson et al, 2016). This study responds to this call and contributes to the sociological study of death, dying, and bereavement by examining the experiences of bereaved family members following an end-of-life hospitalization in the ICU.…”