Preferences for Care towards the End of Life, 2015

There is continuing debate about end of life treatment preferences, and the acceptability and legal status of treatments that sustain or end life. However, most surveys use binary yes/no measures, and little is known about preferences in neurological disease when decision-making capacity is lost. This study investigates changes in preferences for care towards the end of life, with a focus on sustaining or ending life.

The study used cross-sectional representative samples of the public in Great Britain and USA (n=2,016). Large-scale opinion surveys were conducted using a 6-stage vignette. Respondents chose a level of intervention for each stage as health and decision-making capacity deteriorated. The primary outcome measure was changes in respondents' preferences for care, measured on a four-point scale: maintaining life at all costs, intervention with agreement, no intervention, measures for ending life.

The results showed no significant differences between GB and USA. The preference for sustenance of life at all costs peaked at short-term memory loss (30.2%, n=610). Respondents selecting 'measures to help me die peacefully' increased from 3.9% to 37.0% as condition deteriorated, with the largest increase occurring when decision-making capacity was lost (10.3%-23.0%). The predictors of choosing 'measures to help me die peacefully' at any stage included: previous personal experience (OR=1.34,p<0.010), older age (OR=1.09 per decade, p<0.010). Negative predictors: living with children (OR=0.72,p<0.010),or 'black' race/ethnicity (OR=0.45,p<0.001).

The study concluded that opinion was uniform between GB and USA, but markedly heterogeneous. Despite contemporaneous capacitous consent providing an essential legal safeguard in most jurisdictions, there was a preference for 'measures to help me die peacefully' when decision-making capacity was compromised, which increased as dementia progressed. In contrast, a significant number chose preservation of life at all costs, even in end-stage dementia. It is challenging to respect the longstanding values of people with dementia concerning either the inviolability of life or personal autonomy, whilst protecting those without decision-making capacity. Covers January 2015 - July 2015.

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