Factors associated with intended surrogates’ understanding of end-of-life preferences: A nationwide survey

Designating a surrogate decision-maker and discussing end-of-life preferences are essential steps to prepare for a potential future loss of decision-making capacity. Yet, little is known about the factors associated with better surrogate understanding of a person's end-of-life preferences. We aimed to examine which sociodemographic factors, values related to end-of-life care, and decision-making-related factors were associated with perceived surrogate understanding of end-of-life preferences among adults who had designated a surrogate. This cross-sectional study entailed a secondary analysis of data from the Public Awareness of Hospice and Palliative Care Study 2018, a nationwide, web-based survey conducted in Japan. The survey included 1000 adults aged 20–79 who were registered with a market research company. Participants were asked to evaluate the extent to which their designated surrogate understood their end-of-life care preferences. The participants had a mean age of 50.3 years (SD = 15.7), and 51% were female. Among the 873 participants who had designated a surrogate, 57.4% had never discussed their end-of-life preferences with that person. Only 19.9% (n = 174) believed that their surrogate understood their preferences sufficiently. Perceived surrogate understanding was associated with several factors, including age, living status, preferences regarding diagnostic disclosure to family, preferences for end-of-life treatment goals, and the extent of prior end-of-life discussion. The results emphasize the value of end-of-life discussions and the influence of individual characteristics on perceived surrogate understanding.