Oldest-old partner’s experiences of providing end-of-life care: a narrative study

Abstract

Background Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older partners are frequently providing for their partner’s end-of-life care at home, despite potentially facing their own health issues. Little is known about people aged 75 and over who are providing end-of-life care. In order to prepare our health and social care systems for rapidly ageing populations, we need to understand more about this group’s experiences of end-of-life care. Aim To explore the experiences of oldest-old partners looking after their partner approaching end-of-life care. Method First, I conducted a systematic review of the extant literature published since 1985 on the topic. Second, I conducted a longitudinal narrative interview study with 17 couples (19 participants in total). Findings A systematic review of the literature identified a small and only medium quality evidence-base with important empirical and theoretical gaps that require further research. Drawing on interview data, the first key finding was that older partners navigated the carer identity in relation to external and internal factors with not all subsequently embracing the carer identity for themselves. A second key finding is that older partners are actively engaged in integrating care in their capacity as home- keepers, networkers and vigilant visitors. A third key finding highlights the creative ways in which older partners engaged with a pill organizer called a dosette box to make their daily end-of-life caring and medical management bearable. Conclusions The overarching contributions of this thesis challenge notions of the fourth age as merely comprising “decline, passivity and frailty” by emphasizing the activity and creativity of older partners providing end-of-life care. Second, by thinking about oldest-old partners needs and experiences as interconnected, I suggest that policy-makers and health and social care providers will be able to more effectively design services that meet the needs of both oldest-old partners.