The Ethics of Powerlessness research team at the University of Essex has successfully helped amend the draft scope of service delivery guidelines, ‘End of Life Guide: Delivery of Adult Services For People in the Last Year of Life’. The guidelines are being developed by the National Institute for Clinical Excellence
In October 2015 we published ‘Experiences of Powerlessness in End-of-Life Care’. This paper identified three key features of experiences of powerlessness as described in advanced medical research. Moreover, we proposed that these features manifest an experience of powerlessness insofar as they undermine what we called ‘the power to be oneself’. In this paper, our aim is to deepen the discussion of this latter notion.
In this Green Paper we shall review recent studies on experiences of powerlessness in health care with specific interest in end-of-life care. Our aim is to bring into view the central features of experiences of powerlessness in end-of-life care contexts, as these experiences have been described in advanced research. In an appendix we list a number of questions we believe call for future research.
Our friends, family and the professionals looking after us in the most difficult circumstances can also often find themselves helpless to improve the situation. Philosophers at the University of Essex are now looking to understand experiences of powerlessness by working with academics and healthcare professionals including staff at St Helena Hospice in Colchester.