BACKGROUND: Emergency department (ED) visits towards the end-of-life by people with cancer are increasing over time. This is despite an association with poor patient and caregiver outcomes, most patients preferring home-based care, and capacity concerns for many EDs across developed countries. In order to develop appropriate interventions to reduce ED visits, a comprehensive understanding of cancer patients’ end-of-life ED use is vital.
AIM: To understand variation in cancer patients’ end-of-life (last month) ED use in order to support the development of future initiatives aimed at reducing high attendance and improving equity of access to end-of-life healthcare services.
DESIGN: A mixed methods study with a concurrent triangulation design.
METHODS: Quantitative methods were used to describe cancer patients’ end-of-life ED use and investigate socio-demographic, clinical and environmental factors independently associated with multiple (≥2) ED visits towards the end-of-life. These comprised: secondary analysis of pooled data from two mortality follow-back studies: the QUALYCARE study (n=554) and the International Access, Rights and Empowerment (IARE) study (n=127); and, a population-based retrospective cohort study using linked patient-level data from the Office for National Statistics and Hospital Episode Statistics (n=124,030): dataset supplied by NHS Digital. Data was analysed using descriptive statistics, bivariate and multivariable logistic regression. A qualitative interview study explored advanced cancer patients’ and their caregivers’ decisions to seek ED care. Data was collected through semi-structured patient (n=18) and caregiver (n=6) interviews, and review of patients’ healthcare records. Interviews were audio recorded, transcribed verbatim and analysed using a constant comparative approach. Integration occurred at the study’s discussion
stage when findings from the quantitative and qualitative components were combined and overall conclusions made.
RESULTS: Pooled data from the mortality follow-back studies comprised 681 cancer decedents (50.1% men; mean age at death 75 years). Of these, 29.7% experienced multiple ED visits during their last three months of life. Community health care services, in particular contact with palliative care, reduced the likelihood of patients experiencing aggressive end-of-life care, including multiple ED visits. The population-based retrospective cohort study identified 124,030 adults who died from cancer in England during a one year period (01/04/11 to 31/03/12). Of these, 30.7% visited the ED once in their last month of life; 5.1% made multiple visits. Patients were more likely to visit the ED multiple times if they were: younger; male (adjusted odds ratio (AOR) 1.26, 95% confidence interval (CI) 1.19-1.34, reference female); Asian or Black (AOR 1.49, 95% CI 1.27-1.74 and AOR 1.21, 95% CI 1.01-1.46 respectively, reference White); of lower socio-economic status (AOR for most deprived quintile 1.19, 95% CI 1.09-1.30, reference least deprived quintile). Clinical characteristics associated with an increased odds of multiple ED visits were a higher co-morbidity score and diagnosis of lung or head and neck cancer (AOR 1.74, 95% CI 1.56-1.95 and AOR 1.67, 95% CI 1.40-2.00 respectively, reference colorectal cancer). Patients with a higher number of previous ED visits were found to have a greater odds of multiple ED visits in the last month of life; this followed a dose–response pattern (p for trend <0.001). In the qualitative data, four key issues influencing advanced cancer patients’ and their caregivers’ decisions to seek ED care emerged: 1. Disease-related anxiety – those with greater anxiety relating to their cancer diagnosis interpreted their symptoms as more severe and/or requiring immediate attention; 2. Prior patterns of health-seeking behaviour – at times of crisis participants defaulted to services they had previously used; 3. Feelings of safety and familiarity with the hospital setting – many felt reassured by the presence of healthcare professionals and monitoring of their condition; and, 4. Difficulties accessing community healthcare services – especially urgently and/or out-of-hours.
CONCLUSIONS: Socio-demographic (younger age; male sex; Asian or Black ethnicity; low socio-economic status), clinical (high co-morbidity score; diagnosis of lung or head and neck cancer) and environmental (fewer community healthcare services; lack of palliative care; high previous ED use) factors are associated with an increased risk of multiple ED visits towards the end-of-life by people with cancer. Issues influencing advanced cancer patients’ and their caregivers’ decisions to seek ED care are complementary and propose underlying mechanisms of action for the quantitative associations found. Difficulties accessing community healthcare services and feelings of safety and familiarity with the hospital setting appear to support the quantitative environmental factors, whilst disease-related anxiety may explain some of the variation found in ED use across socio-demographic groups. The findings provide evidence for the development of future interventions to address these aspects. These may include: 1. Early warning systems or screening tools based on the quantitative factors, leading to earlier engagement with relevant services such as palliative care; and, 2. Support for healthcare professionals in exploring patients’ interpretation of their symptoms and disease-related anxiety.