Same, same, but different? A longitudinal, mixed-methods study of stability in values and preferences for future end-of-life care among community-dwelling, older adults

BACKGROUND: End-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults’ prioritizations and reasoning about values and preferences for future end-of-life care change over time. METHODS: Using a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5–12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants’ reasoning about card choices were explored with longitudinal qualitative analysis. RESULTS: Stability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants’ health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning. CONCLUSIONS: Longitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals’ end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-021-00839-7.