Project overview
Most people would like to die at home but many die in hospital. Problems with accessing help outside of normal surgery hours is one reason for this. The care provided for people at home out of hours is changing rapidly, as is the care provided for people at the end of life: this also varies across the country. To be able to improve care it is important to understand how patients are affected by care changes and variations, and what works best for them. This study will investigate variations in how out of hours care for people at the end of their lives is provided and how these impact on patients and carers' experience and satisfaction. Patients and the public will be involved in an expert panel and user reference group, as well as local reference groups and as study participants. In five organisational case studies with varied out of hours end of life care, maps of all possible patient pathways through out of hours care will be developed. Interviews with staff will explore how they provide out of hours end of life care, and their views of this care. Patients and carers who use this care will be interviewed about their experience and their needs for care. Detailed maps of each patient's journey through the system will be drawn, and one overall map for each area developed. This will be used to think about the ways patients 'flow' through the system, where the major 'bottlenecks' are, and to predict what would happen if changes were made. The research will show what variations in out of hours care for end of life patients are associated with better experiences for patients and carers and are less likely to have unexpected negative consequences for the wider health care system.
