Personal End-of-Life Healthcare Preferences Among Bereaved Surrogates to People With Dementia: A Vignette Study

TL;DR

This study explores how being a surrogate for someone with dementia affects end-of-life healthcare preferences, showing differences in treatment choices compared to non-surrogates.

Contribution

The study introduces a lifespan developmental perspective to understand how dementia surrogates' experiences influence their personal end-of-life healthcare preferences.

Findings

Bereaved dementia surrogates were less likely to choose aggressive treatments in end-of-life scenarios.

Controls were more likely to opt for aggressive treatment and less likely to choose comfort care.

Dementia surrogates were more likely to request measures for peaceful death and less likely to be unsure.

Abstract

As the number of people living with dementia in the U.S. grows, more people are taking on the role of surrogate medical decision-making. Bereaved dementia surrogates have been uniquely exposed to end-of-life decision-making, observing what can go right and wrong and forming judgments around quality-of-life. This project utilizes a lifespan developmental perspective to gain greater insight into bereaved dementia surrogates’ preferences and attitudes towards end-of-life healthcare. Using vignettes, this study compared the end-of-life preferences of bereaved dementia surrogates (n = 108), bereaved non-dementia surrogates (n = 187), and non-surrogate controls (n = 697). Significant differences between the three groups were found in responses to the second vignette on memory loss and feeding, χ2(8, n = 992) = 33.88, p < .001, the third vignette on aspiration pneumonia, χ2(8, n = 992) = 46.15, p < .001, and the fourth vignette on feeding tube placement, χ2(8, n = 992) = 42.50, p < .001. Both surrogate groups were less likely to select the most aggressive treatment option in the second, third, and fourth vignettes. Controls were more likely than all surrogates to opt for aggressive treatment and less likely to opt for comfort care in the third vignette. Dementia surrogates were more likely to indicate they want measures to help them die peacefully in the fourth vignette, and less likely to respond “I don’t know.” These findings demonstrate how serving as a dementia surrogate can impact personal end-of-life healthcare preferences, with public health implications for an aging population.