Dying well with reduced capacity
We investigated how end of life decisions are experienced by people with reduced agency and by their close network of friends, relatives and practitioners.
Our research addressed these questions:
- What counts as an end of life (EoL) decision (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 (dementia, degenerative neurological conditions, acquired brain injury, frail old age)?
- How do decisions happen in diverse places of care (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?
We explored how people experience the EoL process, how this is influenced by the place of care, and implications for medical, ethical and legal principles and policy.
The research focused on the expanding group of people who face the end of life with reduced agency. Reduced agency included 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 included 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.
- Consolidate/strengthen our community through mentoring, debate, information/data-sharing and co-production of grant applications/publications/events.
- 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.
- Develop a major GW4 bid for a five-year cohort study following people across diverse sites (hospital, home, care home) exploring experiences at EoL, and implications for policy and practice.
This award allowed us to:
- consult stakeholders, ensure patient/public involvement, include unrepresented stakeholders (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 two to four quick turnaround bids to support the major bid and ensure interim sustainability)
- develop a website dedicated to the network
- Professor Jenny Kitzinger
- Professor Richard Huxtable
- Professor Linda Clare
- Dr Jeremy Dixon
- Dr Kerry Jones
- Dr Christine Valentine
- Jana Kralova
Birchley, G., Jones, K., Huxtable, R., Dixon, J., Kitzinger, J. and Clare, L., 2016. Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty. BMC medical ethics, 17(1), p.46
Jones, K., Birchley, G., Huxtable, R., Clare, L., Walter, T. and Dixon, J., 2016. End of life care: A scoping review of experiences of Advance Care Planning for people with dementia. Dementia, p.1471301216676121