Title: PREPARE: imPRoving End of life care Practice in stroke cARE
Funder: Department of Health and Social Care

Abstract: Research questions How can we use stroke-specific indicators of dying to define eligibility criteria for a clinical trial? How do stroke care staff set end-of-life-care and support (EoLC&S) goals and make care decisions? What does and should EoLC&S after stroke look like? What components should be included in a hospital-based package to facilitate EoLC&S after stroke? How should we assess patient/carer experiences? Background Stroke has high mortality; 21% of people die within 30 days. There are challenges to the delivery of EoLC&S after stroke; these include staff being unsure when to initiate EoLC&S and they can lack confidence about the timing and content of discussion with patients/families. Generic guidelines outline components of quality EoLC&S but do not support implementation in stroke care. The EoLC&S policies and tools used after stroke vary locally and have not been robustly evaluated regarding patient and family experience. Aims and objectives This PDG will further our understanding of issues in current practice of EoLC&S after stroke to enable us to write a PGfAR application. Objectives of the PDG Identify indicators of dying after stroke (within 30 days), to create eligibility criteria to identify a sample for a future clinical trial. Identify the processes, challenges and barriers to clinical decision-making in EoLC&S after stroke. Consider how stroke care staff identify EoLC&S goals, support discussions, and make care decisions. Identify priorities and key components for the planned package of EoLC&S, education and implementation packages. Map and evaluate current models of stroke EoLC&S and their components to produce a typology of stroke EoLC&S approaches to inform the sampling of stroke units for a future clinical trial. Explore the utility and practicality of identified indicators of dying within 30 days of hospital admission following stroke (within acute stroke care) and in planning a future clinical trial. Shape research methods and experience/outcome measures to reflect the priorities and needs of key stakeholders, including patient/carer. Programme development work plan PDG1a: Updated targeted review of recent literature around indicators of dying within 30 days of hospital admission following stroke; months 0-6. (Objective I) PDG1b: Systematic review on challenges and barriers to effective implementation of EoLC&S after stroke; months 0-6. (Objectives II, III & IV) PDG2a: Survey of EoLC&S in UK stroke units; months 6-12. (Objective V) PDG2b: Qualitative interviews with stroke healthcare staff; months 13-15. (Objectives II, III, IV & V) PDG3: Stakeholder consultation; month 16. (Objectives I, VI & VII) Write up: Months 17-18. Impact and dissemination The PDG will identify indicators of dying and better understand the priorities and challenges in providing EoLC&S after stroke, following a period of policy and practice change. In addition to peer-reviewed articles, findings will be used to design a package of EoLC&S, training and implementation in a future PGfAR. The study will identify measures to capture the impact of the intervention and inform sampling of patients and sites for a clinical trial. We will assess the impact of the PPI group work and stakeholder activities throughout the PDG.

Lay abstract: Despite medical advances, 21% of stroke patients die within 30 days of having their stroke. High quality end-of-life care and support after stroke is therefore crucial. However, stroke is different to other conditions, and can make end-of-life care complex. There are different patterns of death after a stroke. Death may occur: suddenly and quickly after gradually worsening health, or after ups and downs in a person s condition This makes staff unsure about when to move from active treatment to end-of-life support. Complications after stroke, particularly those affecting speech, language and awareness, may also make it difficult for patients and family to discuss end-of-life care with staff. In addition, staff may lack the skills and confidence for these discussions. Despite these difficulties, there is little evidence to guide how stroke end-of-life-care is given. This may cause inadequate, inappropriate or delayed care and support. We need to explore what specific challenges stroke may create, and how the many recent changes to general end-of-life-care might work with stroke patients. If this application is successful, this grant will explore current problems around receiving and providing stroke end-of-life-care. It will investigate what patients, carers and staff think helps and hinders current stroke end-of-life care, and what they think people need and would prefer for excellent stroke end-of-life care to be achieved. To identify current problems around stroke end-of-life-care we will: Review research on the signs and symptoms suggesting someone is likely to die within 30 days following hospital admission with stroke. Review research about the needs of stroke patients and their families towards the end-of-life, and staff experiences of delivering this care. Survey UK hospital stroke units to discover what approaches to end-of-life-care are currently used. Talk with healthcare professionals about their views and experiences of giving stroke end-of-life care, including how they make decisions and set goals. Talk with patients, families and clinical experts about the research findings to determine the most important things needed to develop an excellent package of stroke end-of-life care and support. The discussion will also help us to decide the best way of measuring the patient/carer experience of this potential care package. We aim to design and test the stroke end-of-life care and support package in a later, larger study. A Patient and Public Involvement group, including bereaved relatives and survivors of serious stroke, has told us what they think the focus of the research should be, and has contributed to the research proposal. They will continue to support us, through regular face-to-face or virtual meetings and email, ensuring that the research is relevant, moral, successful and makes a difference. We will share our findings using various methods, making sure the information can be easily understood by all.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: STROKE