The experience of mesothelioma in Northern England

Mesothelioma is a potentially preventable fatal disease causing almost 2000 deaths/year in the UK, increasing in incidence, and lacking effective treatments. ‘The Experience of Mesothelioma in Northern England’ is a community-based, mixed methods, case study in four parts, conducted in Barrow-in-Furness, Leeds and Doncaster. The study investigates the experience of pleural mesothelioma for patients and their families, and for healthcare professionals and service providers. Mesothelioma is experienced as a devastating disease that carries a severe burden in physical, psychological, and social domains. Breathlessness, usually due to recurrent pleural effusions, and/or pain occur in >90% cases and may be refractory. Psychosocial aspects relate to causation, latency, rapid decline in health, helplessness regarding severe symptoms, and impending death. The erratic trajectory is unusual in malignancy. Disease burden is high in terms of multiple invasive investigations and emergency admissions and is reflected in service usage: 2 or 3 hospital admissions, 5 outpatient appointments and 11 GP consultations, 4 of these at home, occurred on average in the last year of life. Median survival was 294 days and 45% died in hospital, 30% in hospice, and 14% at home. Patients tend to react with stoicism and patients (and relatives) adopt a ‘coping narrative’ which may prevent timely access to supportive services. Bereaved relatives’ emotional accounts reflect witnessing severe suffering, express anger and blame around the potentially avoidable asbestos exposure, and present the deaths due to mesothelioma as ‘mass murder’. State benefits and civil compensation procedures, and the Coroner’s investigation, create additional distress. Severe bereavement reactions have features of ‘tragic grief’. In spite of the severe symptom burden, less than half of the patients were referred to palliative care and there was no systematic approach to care and support of either patients or their relatives. The study has implications for research and service provision