Title: Conversations on living and dying: facilitating advance care planning for community-dwelling older people with frailty
Funder: Health Education England

Abstract: Older people with frailty, around 10% of those over 653 and 65% of those 90 and above4, account for 4,000 daily hospital admissions, and over one million hospital deaths from 2006-20122. This population experience suboptimal end-of-life care75. They are often under- or over-treated, experience inappropriate hospital admissions and procedures35-37, and despite 81% wishing to die at home, most die in hospital76. Advance care planning (ACP), a structured conversation between professionals and someone nearing the end-of-life, enable people to articulate what matters most about future care including preferred care, place of care and death, and unwanted treatments16,17. Promoted though multiple policies including the Department of Health's End-of-Life Care Strategy79 and Ambitions Framework80, ACP enables person-centred end-of-life care78-81. However, due to multiple challenges, ACP is relatively uncommon in older people with frailty26-28. Often their priorities are not discussed prior to a significant deterioration33. This can lead to crisis decision-making which this population may not have capacity for3,34. Current initiatives, including ReSPECT (www.respectprocess.org.uk) and the Gold Standards Framework (http://www.goldstandardsframework.org.uk), cover aspects of ACP. However, there is no systematic, agreed, ACP format or training for health and social care professionals that supports people to articulate their broader end-of-life wishes on an ongoing basis28,38-39.Aims: To enhance understanding of community-dwelling (used to mean usual place of residence within the community) older people with frailty: their priorities, needs and preferences around ACP To understand the facilitators, barriers and necessary behaviours in implementing ACP To collaboratively refine and develop an intervention prototype, underpinned by behavioural change theory, to increase ACP engagement in this population To refine the prototype and develop a feasibility-testing protocolResearch question: What are the key components of ACP for community-dwelling older people with frailty, and how are they best implemented?Plan:Phase 1: Evidence-Building An integrative review51 will be conducted to answer the question: What is the current state of the evidence regarding the components and implementation of ACP for community-dwelling older people with frailty?Findings will be developed into an integrated, theoretical model of best practice. Phase 2: Clinical Evidence-Building The following methods will answer the question: What are the experiences and self-reported attitudes of community-dwelling older people with frailty, their significant others, and professionals regarding ACP in the context of ageing with frailty? Modified Delphi Survey57-58 of 40-50 community-based multidisciplinary professionals who facilitate ACP, with Round One based on the theoretical model. Semi-structured interviews with 16 older people with frailty and eight significant others. Observations of 10-14 professionals conducting assessments of older people with frailty across three community services. Three focus groups with 18-24 community-based multidisciplinary professionals. Analysis: Following statistical Delphi analysis, data will be mapped and thematically analysed67 using COM-B40, a behaviour change model, to establish the facilitators, barriers and necessary behaviours required for professionals to facilitate ACP in this population. Findings will be developed into a theoretical/explanatory framework to underpin intervention development.Phase 3: Intervention development Based on the above, two half-day collaborative workshops with 14-20 older people with frailty and stakeholders will answer the question: What content, format and training is required to support professionals to engage community-dwelling older people with frailty with ACP? Analysis: Thematic analysis67 with guidance from advisory groups.Phase 4: Intervention refinement 10 community-based professionals will be trained, use the intervention, and provide feedback to answer the question: Does the intervention work in practice? Analysis: Statistical analysis of pre-post questionnaires and thematic analysis67 of group feedback will identify candidate feasibility, process and outcome measures, and develop a feasibility-testing protocol. Potential benefits:Older people: Improved person-centred, end-of-life care and increased care choicesNHS: Capacity building in end-of-life planning Improved resource planning and reduced crisis management

Lay abstract: Aim: To work with community-dwelling older people with frailty to develop an advance care planning (ACP) intervention that is appropriate, and increases their involvement in planning their present and future care goals. Background: Advances in medicine and healthcare mean people are living longer than ever before. However, advancing age brings a greater likelihood of ill health. Frailty is a syndrome of ageing. While not all older people become frail, frailty becomes more likely as people age, affecting around 10% of those over 65, increasing to around 65% of those 90 and above. Frailty is characterised by a progressive, gradual decline in physical and mental functions, leading to increasing vulnerability to sudden health changes. Compared to fit older people, those with frailty are at greater risk of disability, care home admission, hospitalisation, and death. Often referred to as the disadvantaged dying, older people with frailty have less access to palliative care and poorer end-of-life care experiences than other populations. Most die in hospital, despite home often being the preferred place of care and death, and many are under- or over-treated, experience invasive procedures or inappropriate admissions. One solution is ACP, a structured, ongoing conversation between professionals and someone nearing the end-of-life, often with family involvement. These conversations provide opportunities to discuss and write down what matters most about future care, including preferred care, place of care and death, and unwanted treatments. Writing down preferences means older people with frailty are more likely to receive person-centred care both now and in the future, and improved end-of-life care. However, while ACP is relatively established in diseases such as cancer, it is seldom used in older people with frailty due to many complex challenges. These include difficulties for professionals in predicting the end-of-life, therefore when to start ACP, and older people with frailty, or their significant others, not always wanting to discuss ACP when they are managing well.There is currently no systematic, agreed, ACP format or training for health and social care professionals that supports older people with frailty to express their broader end-of-life wishes on an ongoing basis. This study aims to understand what helps and hinders ACP in this population and to design an appropriate intervention. Design and methods:Phase 1: Evidence-building Review current research and policy to establish what is already known about ACP for community-dwelling older people with frailty, identify best evidence, and generate new insights. Phase 2: Clinical evidence-buildingExplore the experiences and attitudes of older people with frailty, their significant others, and professionals, around ACP, to increase understanding of ACP for this population both locally and nationally. The phase has three elements: The national perspective: A survey of 40-50 multidisciplinary professionals who conduct ACP with older people with frailty will help establish the national perspective. The patient perspective:Interviews with 16 older people with frailty and 8 significant others, including people who have, and have not engaged with ACP, will increase understanding of the patients' perspective. Participants will be asked to consent to interviews being filmed. The edited film will support intervention development and future training. The clinical perspective:Observation of 10-14 multidisciplinary professionals conducting assessment with older people with frailty across three community-based services (palliative frailty service, care homes and frailty reablement/step-down service), and three focus groups with a total of 18-24 community-based multidisciplinary professionals. This will increase understanding of current practice. Phase 3: Intervention development Based on the evidence from Phase 1 and 2, older people with frailty, their significant others, professionals, and the voluntary sector will work together with the researcher to develop a relevant intervention in two half-day workshops over four months.Phase 4: Intervention refinement 10 community-based professionals who conduct ACP will receive intervention training, use it in practice with 2-3 older people with frailty over one month, and provide feedback on how it worked and could work better. The intervention will then be revised and a future testing proposal created. Patient and Public Involvement (PPI): Older people with frailty, carers and professionals advised on the research question, design and acceptability. A PPI group will be established to advise throughout the study from planning each phase to disseminating findings as co-authors/co-presenters. Dissemination: The developed intervention will be tested in a future study and eventually rolled-out nationwide A summary of the findings, written with PPI, will be emailed or posted to all participants and submitted to relevant patient newsletters and conferences, such as Age UK Results will be disseminated further through conference presentations (UK/International), meetings, and peer-reviewed journals

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE