"I Wish I Knew": Assessing Older Adults' Perceived and Actual Knowledge of Their Partners' End-of-Life Preferences.

Abstract

Background and objectives: Despite the importance of surrogate decision-making by partners at the end of life, there is only limited research on older adults' knowledge of their partners' end-of-life preferences. Hence, this study investigates older adults' perceived and actual knowledge of their partners' preferences for end-of-life care and medical treatments.

Research design and methods: We analyzed data from 667 respondents aged 50+ from Wave 8 (2019/2020) of the Survey on Health, Ageing, and Retirement in Europe in Switzerland. We assessed respondents' actual knowledge by comparing their perceptions of their partners' preferences for end-of-life care and medical treatments with the partners' self-reported preferences. Additionally, respondents were asked to rate their perceived knowledge of their partners' wishes. Associations were assessed using multivariable regression models, adjusting for social, health, and regional characteristics.

Results: Respondents' actual knowledge of their partners' preferences varied, with the share of correct answers ranging from 35% to 81% depending on the preferences. More than 80% of respondents felt that they knew their partners' end-of-life and medical treatment preferences "rather" or "very" well, and those respondents were more likely to identify their partners' preferences accurately.

Discussion and implications: Improved communication between partners regarding their end-of-life preferences could significantly enhance surrogate end-of-life decision-making. However, since older adults' perceived knowledge of their partners' preferences seems overly optimistic, they may see little need to initiate such conversations by themselves, emphasizing the need for external educational interventions such as role-plays or case study discussions through, say, the community, or healthcare system to encourage such conversations.