Dying Well with Reduced Agency: People, Places, Principles and Policies

This project follows directly on from the GW4 Initiator Project: Dying Well at the End of a Long Life

Dates: 01 June 2015 – 30 November 2015

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).

Our community aims to:

  • increase capacity and integration of our work about end-of-life across GW4 and ensure sustainability;
  • ensure public/patient involvement as we develop a cross-university research agenda;
  • increase the profile of, and dialogue about, the work we do through the public/policy engagement events and conference presentation(s);
  • generate (at least one) publication;
  • develop research bids to inform future work to research, and improve end of life support for people with reduced agency.

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 stage 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, and 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.

Outputs

GW4 Public Engagement Evaluation 13.10.15

GW4 Conference Evaluation 14.10.15

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