"It's like crystal gazing": The Lived Experience of Anticipating End-of-Life Choices in Older Adults and Their Close Ones.

Abstract

Nowadays people increasingly try to take control over the end of their lives by anticipating end-of-life choices. Explication of these choices is encouraged using advance care planning (ACP). We aim to deepen our understanding of how choice-making processes are lived in real life, exploring the experience of community-dwelling older adults and their close ones over time. A multiperspective and longitudinal approach grounded in phenomenology was chosen. Ten triads consisting of an older adult (75+) and 2 close ones (n = 30) were interviewed, twice individually and once as a group, over 20 months (=70 interviews). Data were thematically analyzed both longitudinally and from all 3 perspectives. The essential meaning of anticipatory choice-making processes was described as a dynamic and relationally entangled decisional process, to navigate between paradoxical choices for an opaque future. Three fields of tension were created due to ambivalence in these choice-making processes: navigation between having and losing control, between taking away and burdening with responsibility, and between expressing and holding back oneself. Anticipation of choices for hypothetical end-of-life scenarios turned out to be complex and ambivalent. Most older adults resisted ambivalence and ignored complexity in an attempt to stay in control over their end of life. The burdening impact of choices on close ones illuminated the relationality of choice-making processes. These aspects of end-of-life choice-making processes should be integrated into ACP in order to better understand and care for people and their close ones faced with these choices.