Is it worse than death? Appraisal of health states among older adults and their relatives in Switzerland

Objective: Our objective was to study health state appraisals in healthy older Swiss with a focus on health deficits typically associated with dementia. We also aimed to elucidate the congruency of self-ratings of health states with proxy-ratings by possible future surrogate decision-makers. Methods: This is a single-center, cross-sectional survey among a convenience sample of pairs of healthy older adults and their possible future surrogate decision-makers. Following a States Worse Than Death (SWD) approach, participants were asked to appraise health deficit states in relation to death both for themselves and for their dyadic partners. Results: The final sample consisted of 248 participants, i.e. 124 pairs of healthy older adults (62.1% male; mean age: 71.6ys (SD: 10.5ys)) and their possible future surrogate decisionmakers (mostly spouses or children). Of the 17 health states included in the survey, eleven were rated as equal or worse than death by more than half of healthy older adults. Similarly, ten health states were rated as equal or worse than death by more than half of possible future surrogate decision-makers. Overall, there was good - and higher than random - congruency between ratings of dyadic partners. Discussion: Participants of our study preferred death over living with various types of health impairments to a striking extent, particularly those associated with dementia. There was a good consistency of health state appraisals between dyadic partners which could translate into consistent decision-making - in case proxy decision-making were to become necessary. The use of patient-centered health measures such as SWD approaches may aid goals-of-care discussions, facilitate end-of-life communications and thus improve healthcare decision-making. Future research should investigate how SWD appraisals change over time and with deterioration of health and how they depend on societal acceptance of health impairments.