PREPARE: imPRoving End of life care Practice in stroke cARE

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.