The project
This project will address the following research questions:
- How have the services used towards the end of life changed since the first year of the pandemic, and what do the trends in service use tell us about the “new normal” for end of life care, and future care needs?
- Can measures of quality of care towards the end of life which are meaningful to patients and the public be tracked using routine clinical data?
- How do individual’s characteristics, and the relationships between them, influence inequalities in the end of life care they receive?
Why it’s important
Quality of end of life care and inequalities in care are critical policy concerns. Service provision is fragmented, and there is a lack of visibility of who is providing and receiving end of life care, particularly for people who die at home.
Health and care services only have one chance to provide high quality care for people approaching the end of life. Inequalities throughout the life course impact on an individual’s needs towards the end of life, and their ability to advocate for and obtain the support they need.
What we’ll do
In our deaths at home research we laid the foundations for this work using large clinical datasets. However, this initial phase only examined the first year of the pandemic, comparing this with the pre-pandemic period.
In this phase we plan to extend our analysis of what has happened to service use, quality of care and inequalities in the recovery period. The NHS has struggled to recover from the shock of the pandemic, and moreover, recovery efforts have focused on elective care – while at the same time mortality rates have been above expected for significant periods in the last 2 years, and the number of people who die at home continues to be 20-30% above the five year average.
We will use the OpenSAFELY platform which includes linked primary care, mortality and hospital data for the English population. We will extend the time series, to the most recent time point available, for a selection of the measures developed in our previous deaths at home project, which included service use prior to death by place of death and other characteristics.
We will also identify and measure additional indicators of quality of end of life care, for example, exploring what information about care plans is recorded. To inform this we will conduct workshops with stakeholders in particular patient and public representatives.
We identified significant and growing inequalities in quality of care in our previous project. To investigate the drivers of variation in end of life care and the intersectionality between them we will develop adjusted regression models to explore the relationship between people’s characteristics and variations in service use and quality of care for people approaching the end of life. In particular, we would like to understand the interaction between cause of death and socioeconomic differences, and the interaction between socioeconomic and ethnic differences.
The project will be informed by an advisory group including patient and the public members, as well as national and local stakeholders bringing a range of expertise.
Project outcomes
The project will address significant gaps in evidence about the quality and inequality of end of life care, and produce information for national and local organisations to use to improve end of life care.
This will include:
- Regular reports of service use at the end of life
- New measures of quality of care
- Understanding of the drivers for variation in use of services, which can then inform action to tackle inequalities in care
Timelines
The project will commence in July 2023 and last for about 12 months.
Further information
For further information please contact sarah.scobie@nuffieldtrust.org.uk