Extending life for people with a terminal illness: a moral right or an expensive death? Exploring societal perspectives

Health systems typically apply cost-utility frameworks in response to the moral dilemma of how best to allocate scarce health care resources. However, implementation of recommendations based on costs and benefit calculations and subsequent challenges have led to 'special cases' which enable the value attached to certain health benefits to be considered. Recent debate and research has focussed on the relative value of life extensions for people with terminal illnesses. This research investigates societal perspectives in relation to this issue, in the UK. Q methodology was used to elicit societal perspectives from a purposively selected sample of data-rich respondents. Participants ranked 49 statements of opinion (developed for this study), onto a grid, according to level of agreement. These 'Q sorts' were followed by brief interviews. Factor analysis was used to identify shared points of view (patterns of similarity between individuals' Q sorts). Analysis yielded an interpretable three factor solution. These rich, shared narratives can be broadly summarised as: i) 'a population perspective – value for money, no special cases', ii) 'an individual perspective – value of life, not cost', iii) 'a mixed perspective – value for money, individual values and the quality of life and death'. Ethical and policy implications emanate from the shared accounts as they reveal that the main philosophical positions that have long dominated debates on the just allocation of resources have a basis in public opinion. However, the existence of certain moral positions does not ethically imply, and pragmatically cannot mean, all are translated into policy. Our findings highlight normative tensions and the importance of critically engaging with these normative issues rather than adopting a procedural approach to public policy. Furthermore, it is necessary to understand the extent to which these perspectives are held in society and how they relate to specific questions of resource allocation, wider social value orientations and other characteristics.