Surrogates' Accuracy On End-of-Life Treatment Preferences: The Effects of End-of-Life Planning with Romantic Partners

Purpose: When terminally-ill patients become physically and cognitively unable to communicate their wishes for medical treatment, spouses often make such decisions in collaboration with health care providers. Therefore, it is important for partners to know one another's end-of-life treatment preferences and complete end-of-life planning together. However, little is known about whether having discussion with partners or appointing them as health care surrogates actually helps them to become more aware of their partners’ wishes. The purpose of this study is to examine the extent to which end-of-life planning with a spouse or cohabiting partner increases knowledge of a partner’s treatment preferences.

Methods: The study examined data from a national internet survey comprised of 1,075 married or cohabiting heterosexual American couples aged 18 to 64. Participants were asked to rate the level of treatment that they believe their partners would like to receive during a serious illness with very little chance of survival (0 = stop all life-prolonging treatment and 10 = continue all treatment). They were also asked to estimate the level of treatment that they would like to receive themselves. We constructed the outcome variable by subtracting participants’ actual preference scores from their partners’ prediction of these scores. A score of 0 represented perfect accuracy. Positive scores and negative scores indicated an error of overtreatment and undertreatment, respectively. Because of the few extreme values, we categorized this outcome variable as follows: under by 3 or more, under by 1-2, accurate, over by 1-2, over by 3 or more. Key independent variables were whether a participant had a discussion about his/her end-of-life treatment preference with his/her partner and whether a participant appointed his/her partner as a surrogate. Participants’ sociodemographic characteristics and perceived relationship quality were controlled. Multinomial logistic regression was conducted separately for men and women. All results were weighted to be of representative of the U.S. population.

Results: Roughly a quarter of partner estimations were accurate. Men with the experience of having an end-of-life discussion with their partner and having been appointed her surrogate were less likely to make any type of error. For example, compared to having neither experience, having both experiences was associated with a 71% decrease in the odds of making an error of undertreatment by 3 or more (p<0.001). Women who only discussed their partner’s preferences were less likely to make any type of error. For example, having a discussion was associated with a 53% decrease in the odds of making an error of overtreatment by 3 or more (p<0.001). Having been appointed as a surrogate only was not associated with the accuracy of estimations for either men or women.

Discussion/Implications: The study illustrated the importance of having discussions about end-of-life treatment preferences with their partners. Without having discussions, appointment of a surrogate has no effect on making accurate estimations. Engaging in discussions about end-of-life care with partners needs to be encouraged because discussion will help them make medical decisions that are consistent with the wishes of the dying person.