Title: Using experience-based co-design to improve the impact of advance care planning on the quality of life and care of frail older people
Funder: Dunhill Medical Trust

Abstract: Background: This research aims to improve outcomes for frail older people through optimising discussions about values and preferences for future care, termed advance care planning (ACP). There is evidence that ACP in hospital is beneficial for older patients and families, and patients are receptive to such discussions (Detering et al, 2010). Yet only 0-5% of hospitalised older patients (and 2-29% of all frail older patients) participate in ACP (Hopkins et al, 2020; Sharp et al, 2013). To date, patients, carers and clinicians have not been involved in understanding and addressing this discrepancy (Hopkins et al, 2020). This represents an opportunity to improve care, especially because 82% of older patients have a hospital admission in the last year of life (Ní Chróinín et al, 2018). Research aims: a.To examine how and why ACP with frail older individuals is managed and experienced during and after hospital inpatient care, including in light of covid-19. b.To understand the outcomes that matter to frail older people and their informal carers and if and how ACP can help achieve these. c.To use this evidence to co-design an intervention to improve ACP practice during and/or following hospitalisation, iteratively optimise the intervention, and design a future feasibility trial. d.To contribute to the evidence base for using experience-based co-design (EBCD) for intervention development with frail older individuals. Design and Methods: This research will use EBCD (Bate and Robert, 2006) to collaborate with users and providers to improve ACP. In-depth qualitative longitudinal case studies (n=10-12) of frail older patients, their carers and clinicians will explore current practice and identify key “touch points” where experience is shaped (total interviews=40-72). These data will be used to enable users and providers (n=30-48) to co-design an intervention prototype to improve ACP (Point of Care Foundation, EBCD Toolkit). The prototype will be iteratively tested and refined in two sites using mixed-methods process and outcome evaluation (Moore et al, 2015). A feasibility-testing protocol will be developed (Craig et al, 2008). Focus groups with those involved in the EBCD process will explore possible refinements for EBCD use with frail older people for intervention development. Impact: -Improved care in participating sites; proof-of-concept for post-doctoral research trialling novel co-designed ACP intervention. -Early suggestions for modifications to ACP practice in response to covid-19/future epidemics -Changes to policy and guidelines to better reflect the priorities of frail older people and carers. -Refined EBCD process for intervention development with frail older people.

Lay abstract: Frail older people often receive poor care in the final period of life. Most do not have the opportunity to explain their wishes and priorities as they become more unwell, their families frequently rate the quality of their end-of-life care as poor, and many carers feel burdened. Frailty is associated with poor quality of life and lower well-being. I aim to improve the lives of older people and their carers through optimising discussions about values and preferences for future care. Discussing values and preferences for future care is considered a cornerstone of good practice. There is evidence that having such discussions with hospitalised older patients means their wishes are more likely to be respected, increases the quality of their final period of life, and reduces stress and depression in bereaved families. Four out of five older people are hospitalised in their last year of life, so many could benefit from these conversations. However research suggests that while hospitalised frail older people would like these discussions, they currently take place with only 1 in 20 patients. Existing approaches to discussing end-of-life care preferences – highlighted tragically by covid-19 – are clearly not working. This may be because they have not been developed in collaboration with patients or carers, nor with reference to the local environments in which they will be used. Using a well-tested approach called experience-based co-design, I will work with frail older patients, their families and clinicians to understand their experiences of talking about future care preferences, why these conversations currently rarely occur, and how they might be improved. Building on this evidence, I will form an equal collaboration between users (frail individuals, their families/informal carers) and providers (hospital and community healthcare professionals, service managers, commissioners) to jointly identify priorities for improving care and then design innovative solutions to achieve these priorities. Finally, this new approach will be tested in two locations and refined through further collaboration with service users and providers. This research will help to enhance frail older people’s quality of life, strengthen relationships with their loved ones, ensure individuals’ wishes are known and respected, and reduce stress and depression in bereaved families. It will improve frail individuals’ care during and after hospital admission, including care at the end of life. It has the potential to reduce unwanted hospital admissions towards the end of life, which may lead to improved NHS financial performance as well as care.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE