Centre for Death & Society

Dying Well with Reduced Capacity


Principal Investigator:  Prof Jenny Kitzinger, University of Cardiff

Partners: Prof Richard Huxtable, University of Bristol (CI), Prof Linda Clare, University of Exeter, Dr Jeremy Dixon, University of Bath

Research Team: Dr Kerry Jones, University of Exeter, Dr Christine Valentine, University of Bath, Jana Kralova, University of Bath, Caron Staley, University of Bath, Giles Birchley, Univesity of Bristol,Julie Latchem, University of Cardiff,

Funder: GW4 Accelerator

Dates: 01 June - 30 November 2015

Project rationale and aims

Departmental themes

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 [EoL], 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).

Our first grant, a GW4 Initiator project enabled (i) an academic-event at each GW4 university on “Dying Well at the End of a Long Life” and (ii) a full day meeting for 20 representatives across GW4 to develop the joint initiatives outlined here.

The initiator funds brought together a GW4 community with has unique expertise in death/dying, and a potential for joint working that has yet to be fully realised.

Our GW4 community brought together people with diverse clinical/health services backgrounds (including health service management, physiotherapy, social workers, gerontology and pharmacy), and disciplinary training (e.g. social anthropology, history, psychology, sociology and communications research) with a proven commitment to cross-sector and interdisciplinary working. Our community crosses the career spectrum from PhDs to emeritus professors.

This GW4 community is an opportunity to capitalise on a geographical hot-spot of expertise in death and dying/reduced agency, to develop intellectual synergies, expand income-generation and significantly impact policy and practice.  

The step-change emerging from our ‘initiator’ funded meetings was a development of focus, around ‘reduced agency’ (not just old age), and the value of comparative, inclusive research across diverse sites, following people over time, and including paid/unpaid caregivers. A major cohort study supporting a programme of linked projects was envisaged that has considerable potential to challenge existing, and inform future, EoL policy in the UK, and beyond.

The overarching research question for this next step of our development is

  • How and why decisions pertinent to end of life (EoL) happen as they do; how are they experienced by people with reduced agency and by the network around them, including closest friends/relatives and health/social care practitioners?

Our research will address:

  •  What counts as an EoL decision (e.g. ‘extending life’, ‘allowing death’)? How are such decisions defined and understood?
  • How do decisions vary between people with different diagnoses and varying forms of reduced agency (e.g. dementia, degenerative neurological conditions, acquired brain injury, frail old age?)
  • How do decisions happen in diverse places of care (e.g. family home, supported housing, care home, hospital – including intensive care)?
  • How may our findings engage with existing social care ethics, and medical and legal principles?
  • In light of peoples’ experiences, how should institutional practices and policies be (re)framed? What are and should be the relevant guiding social, legal and ethical principles?

In sum, we will explore how people experience the EoL process, how this is influenced by the place of care, and implications for (medical, ethical, legal) principles and policy. This research will focus on the expanding group of people who face the end of life with ‘reduced agency’. ‘Reduced agency’ here includes adults who formally ‘lack mental capacity’ (defined by the Mental Capacity Act 2005), and those who have ‘capacity’ but whose agency is reduced due to their illnesses and/or the conditions under which they live. We will include people with dementia, chronic disorders of consciousness, neurodegenerative diseases, and those whose agency is reduced through the physical and mental co-morbidities and social settings experienced by those in late old age.

Project outputs and impacts

This project will deliver on three inter-twined objectives:

  1. Consolidate/strengthen our community through mentoring, debate, information/data-sharing and co-production of grant applications/publications/events.
  2. Create dialogue about our work through a public/policy engagement event – combining GW4-led expert panels and public events with an exhibition of art co-produced from our research. 
  3. Develop a major GW4 bid for a 5-year cohort study following people across diverse sites (hospital, home, care home) exploring experiences at EoL, and implications for policy and practice. This award will allow us to:
  • Consult stakeholders, ensure patient/public involvement, include unrepresented stakeholders (e.g. care workers);
  • Build partnerships with sites/organisations
  • Conduct, present and publish a systematic literature review of existing work on EoL experiences (highlighting gaps in relation to reduced agency);
  • Refine the methodology, project management and 'pathways to impact for the major research initiative;
  • Write the major research bid (plus 2-4 quick turnaround bids to support the major bid and ensure interim sustainability).

A website dedicated to the network has been developed.

Find out more about this project

Name: Mrs Caron Staley
Title: Institute Manager
Department: Dept of Computer Science
Location: Virgil Building 3.28
E-mail: c.staley@bath.ac.uk
Phone: work+44 (0) 1225 386275