9 Sep 2021

There is increasing evidence that some interventions can improve outcomes and experience of death, dying and bereavement for patients, families and society. However, this evidence has been poorly translated into policy and practice, limiting its potential to improve care and outcomes.

In this project, led by Professor Katherine Sleeman, the ARC’s palliative and end of life care researchers aim to better understand the experiences of people affected by death, dying and bereavement in the UK today. The team will do this by gathering new evidence and identifying and summarising existing data. The aim is to compel policymakers to take action.

Identifying and reducing inequalities

Evidence shows that someone’s age, whether they have a disability, their marital status, ethnicity, gender, sexual orientation and gender identity all affect how likely they are to receive appropriate care at end of life, and impact on their outcomes. For example, people from non-White ethnic backgrounds are less likely to access certain types of palliative care before death. 

Identifying and reducing health inequalities such as these, and understanding the significance of where people live and their socioeconomic status, is a priority for the ARC research team.    

How the project will be carried out

The project will be carried out across three workstreams, run in parallel over three years:

Workstream 1: understanding the patient experience and their support 

The researchers will examine the quality of care and support experienced by individuals affected by death, dying and bereavement in the UK. They will generate new data through a large survey of bereaved relatives and carers. The aim is to understand patients’ symptoms and concerns in the last weeks of life, including pain, breathlessness and anxiety, and to explore the intensity of carers’ grief.

Workstream 2: the availability of care and services 

The researchers want to know what care and services are available, and which are most effective. They will map availability of care and services to identify gaps and inequalities. They will review and summarise evidence to identify the most effective ways to deliver services.

Workstream 3: using metrics to understand the quality of care across populations 

The researchers will measure the quality of death, dying and bereavement care, using metrics developed nationally, to understand the quality of care for populations, and understand differences between regions.   

Potential benefits

The long-term goal of the project is to improve the experience and outcomes of people affected by dying, death and bereavement in the UK. Specific potential benefits include: 

  • Policymakers – both locally and regionally – will be better equipped to make evidence-informed decisions that lead to improved care and services for people affected by dying, death and bereavement.
  • Dying, death and bereavement will be increasingly prioritised by policymakers.
  • People affected by dying, death and bereavement will be empowered to take more control over the care and support they receive, and feel more confident about making the right decisions.

Our collaborators 

The research team are collaborating with other palliative and end of life care researchers based at Hull York Medical School, the University of Cambridge and NIHR ARC East of England.

This project is expected to finish by 31 December 2023. 

Find out more