Preferences for Care towards the End of Life, 2015

<P>Abstract copyright UK Data Service and data collection copyright owner.</P><br>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. <br>
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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 six-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. <br>
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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). <br>
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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.<br>
<br><br><B>Main Topics</B>:<BR><br>Healthcare; end of life care; end of life treatment choices; assisted dying; progressive neurological disease; dysphagia; decision-making capacity; cross-national comparison.