EOL Inequities and Palliative Care for Cancer in NW England (V1)
Research type
Research Study
Full title
End-of-Life Inequities and Palliative Care for Cancer in Primary Care Settings in the North West of England: A Mixed Methods Study
IRAS ID
331070
Contact name
Amy Gadoud
Contact email
Sponsor organisation
Lancaster University
Duration of Study in the UK
1 years, 8 months, 28 days
Research summary
Research Summary: This study aims to learn more about the unfair and avoidable inequalities that impact people with cancer at the end of life. Previous research suggests that GPs do not always recognise the needs of cancer patients. This is important because palliative care can help people with incurable cancer to manage their symptoms and improve their quality of life. We know that factors like where people live, their age, their financial situation, and the type of cancer they have can affect the palliative care people receive, but less is known about the relationship between these factors and end-of-life outcomes for people with cancer in the North West. This study aims to learn more about this.
First, we will look at the patient records of cancer patients who recently died in an area of the North West to develop our understanding of the factors that contribute to unfair differences at the end of life, such as differences in the recognition of palliative care needs, where a person with cancer dies, and how often they are hospitalisation in the last year and months of life. Alongside this, we will interview GPs to find out more about their experiences of providing care to cancer patients at the end of life and the factors that contribute to inequality. We will combine the findings from these phases to understand the inequalities impacting people with cancer at the end-of-life. Finally, we will present the findings to a panel of experts (including people with cancer and their families) to come up with ideas about how any unfair differences can be overcome.
Summary of results: This study examined inequalities at the end of life for patients living with cancer in North West England.
An analysis of patient data revealed that around three-quarters of patients were included on a palliative care register when they died. However, only about half were included early (at least three months before death), while almost one-third were added late (during the final month of life). The likelihood and timing of inclusion varied by age, additional health conditions and cancer type. The oldest patients and those with pancreatic cancer were more likely to be included late. Although overall inclusion remained stable during the study period, earlier inclusion became less common and later inclusion became more common.
Patients included on the palliative care register were much less likely to die in hospital and had fewer hospital admissions and bed days during the last 90 days of life. Register inclusion was significantly associated with an 11% lower rate of hospital admissions and 32% lower rate of hospital bed days. These findings suggest that register inclusion may reduce hospital use near the end of life.
There were some differences in the strength of the potential improvements between patient groups. Although register inclusion was associated with improved outcomes for all patient groups, those living in more deprived areas and those with certain cancer types (e.g. haematological cancers) continued to experience poorer outcomes than those living in affluent areas or with other cancer types (e.g. lung cancer), even when they were included on the register.
The qualitative analysis is ongoing, but the initial findings help to explain some of these inequalities. Four main issues were identified: some patients’ needs were less visible to services (e.g. because they were more likely to be diagnosed late or less likely to seek help); systems were not always designed for people with complex needs (e.g. patients experiencing poverty or homelessness); local services varied in staff, time and resources, which disproportionately impacted patients vulnerable to inequalities; and patients did not all have equal opportunities to fulfil their end of life preferences (e.g. place of death).
Overall, palliative care registers appear to be an important part of end-of-life care, but they are not sufficient on their own. Earlier identification, services that respond better to complex needs, more equitable local capacity and improved opportunities for patient choice are also required to support equitable palliative and end of life care in the North West of England.
REC name
Yorkshire & The Humber - Sheffield Research Ethics Committee
REC reference
23/YH/0281
Date of REC Opinion
14 Dec 2023
REC opinion
Favourable Opinion