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

Abstract

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.

Values and preferences for future end‐of‐life care among the indigenous Sámi

“…The GoWish cards have been used in research studies with community‐dwelling adults in several countries [10, 15, 27, 28] and as the DöBra cards with majority populations in Sweden [4, 9, 17, 18], however, we have seen no other studies that have reported an extensive use of wild cards as in the present study. This may be in part due to interviewers explicitly prompting interviewees about other potential preferences not covered by card items.…”

“…The cards have been found to be feasible facilitators of conversations about values and preferences for EoL care, as well as useful for triggering general discussions about death and dying [9]. Eneslätt et al's research has pointed to the importance of considering how people reason about card statements, as this can vary by individual with regard to the same statement, and how wild cards are used to communicate individual values [4,18].…”

“…Combining our previous experiences of conducting research with the DöBra cards [4,9,17,18] and our research on EoL issues among the Sámi [2,19], we focus here on investigating the use of the DöBra cards in Indigenous Sámi contexts. We were curious if both individual and culturally rooted preferences would be able to be clarified by the DöBra cards' combination of pre-formulated card items and self-formulated wild cards.…”

“…Use of the DöBra cards has been investigated in different settings in Sweden and found to be well received among both the general public and staff in residential care homes [4,9,[16][17][18]. The cards have been found to be feasible facilitators of conversations about values and preferences for EoL care, as well as useful for triggering general discussions about death and dying [9].…”

The cultural adaptation of the go wish card game for use in Flanders, Belgium: a public health tool to identify and discuss end-of-life preferences

“…Games have been shown to lower reluctance and resistance when discussing potentially uncomfortable topics such as death, dying, and end-of-life care [6] and can thus be helpful in supporting individuals in thinking and talking about ACP and end-of-life values and preferences. One card game that has shown positive results in stimulating discussion in various studies is the American Go Wish card game (developed the mid 90s by Coda Alliance, a U.S.-based non-profit organization) [7][8][9][10][11][12][13][14][15][16][17][18]. The card game consists of preformulated statements to initiate and support ACP discussions by identifying values and preferences about end-of-life issues and death and dying.…”