The Quality of Time and Its Quantifications. Negotiations about the Feeding Tube at the End of Life

The measurement and calculations of quality of life have a huge impact on policy and treatment in Western countries and global health policies. The original motivation to develop these measurements was to bring in ‘patient values’. However, it is far from clear what ‘quality of life’ comes to mean when it is quantified, and how it may correspond to things that patient value. In this paper I unravel what quantifications can and cannot make visible by ethnographically studying the different temporalities that are enfolded in different understandings of quality. To this end I analyse interviews and observations that relate how people with ALS who consider or live with a feeding tube encounter concerns with quality and temporality in their daily lives. I will show that the relevant temporalities change as qualities, rather than as quantities. Rather than ‘gaining more time’ by extending life through treatment, different types of times are added, fade away, or become lost. This can only be made visible through qualitative research.