DYING WITH REDUCED AGENCY- PEOPLE, PLACES, PRINCIPLES AND POLICIES
Project period: May to November 2015
This community previously received Initiator Funding for the project: Dying well after a long life
GW4 community leads
University of Bath: Jeremy Dixon
University of Bristol: Richard Huxtable
Cardiff University: Jenny Kitzinger (PI)
University of Exeter: Linda Clare
Demographic, technological, organisational, political and social changes create new challenges at the end of life. This GW4 community is focused on understanding and improving the end of life for the growing number of people with reduced agency (e.g. linked to dementia, disorders of consciousness or frailty/chronic conditions in advanced old age).
Those at EoL with reduced agency are increasing; many are of advanced age, but all ages are represented. An GW4- 81-PA (Exeter) V2 February 2014 5 accident or major stroke can impair (mental) capacity, while many older people progressively lose their agency. EoL research and policy cite laws (e.g. Mental Capacity Act 2005), life sustaining technologies, and concepts (autonomy, agency, choice, control, compassion) all of which are contentious. What is unclear is how these aspects are/not part of living with reduced capacity at EoL, as experienced by the person, professionals, family, friends and communities. How are laws, technologies and concepts realised (or not) through the experiences and actions of the various actors? People near EoL with reduced agency are vulnerable citizens, evidenced by scandals such as Mid Staffordshire. Efforts to ensure their security and liberty (2005 Mental Capacity Act) are under-utilised/ill-understood by professionals/patients (House of Lords, 2014).
The community originally formed using an Initiator award; this accelerator award allowed them to consolidate and strengthen the community through three meetings and collaboration on papers and grant proposals. The community engaged with the public through an exhibition, involving visual art, a digital storytelling installation and shadow puppetry. Stakeholders were invited to a conference on end of life decisions which showcased the existing research of the community and invited discussions about research gaps and future directions, as well as highlighting potential new areas of collaboration. This final conference helped the community develop funding bids, using ideas drawing together the diverse expertise and methods of the wider network.