Interventions at the end of life – a taxonomy for ‘overlapping consensus’ [version 1; referees: 2 approved]

• Main Authors: David Clark, Hamilton Inbadas, Ben Colburn, Catriona Forrest, Naomi Richards, Sandy Whitelaw, Shahaduz Zaman
• Format: Article
• Language: English
• Published: Wellcome 2017-02-01
• Series: Wellcome Open Research
• Subjects: Global Health; Health Systems & Services Research
• Online Access: https://wellcomeopenresearch.org/articles/2-7/v1

Context: Around the world there is increasing interest in end of life issues. An unprecedented number of people dying in future decades will put new strains on families, communities, services and governments.  It will also have implications for representations of death and dying within society and for the overall orientation of health and social care. What interventions are emerging in the face of these challenges? Methods: We conceptualize a comprehensive taxonomy of interventions, defined as ‘organized responses to end of life issues’. Findings: We classify the range of end of life interventions into 10 substantive categories: policy, advocacy, educational, ethico-legal, service, clinical, research, cultural, intangible, self-determined. We distinguish between two empirical aspects of any end of life intervention: the ‘locus’ refers to the space or spaces in which it is situated; the ‘focus’ captures its distinct character and purpose. We also contend that end of life interventions can be seen conceptually in two ways – as ‘frames’ (organized responses that primarily construct a shared understanding of an end of life issue) or as ‘instruments’ (organized responses that assume a shared understanding and then move to act in that context). Conclusions: Our taxonomy opens up the debate about end of life interventions in new ways to provide protagonists, activists, policy makers, clinicians, researchers and educators with a comprehensive framework in which to place their endeavours and more effectively to assess their efficacy. Following the inspiration of political philosopher John Rawls, we seek to foster an ‘overlapping consensus’ on how interventions at the end of life can be construed, understood and assessed.