Suffering in mesothelioma: concepts and contexts

Abstract

Mesothelioma is attributable to asbestos exposure, usually in the workplace. In spite of the increasing incidence of the disease and increased health and safety legislation, public and in some cases health professionals' knowledge of mesothelioma is poor. The issues around causal attribution are complex and patients may develop coping styles and strategies in order to minimise emotional distress. As a consequence of mesothelioma being a 'prescribed disease', patients and their families are frequently engaged in time-consuming, exhausting and worrying medicolegal procedures at a time when they are attempting to adjust to living with a terminal disease and coping with the burden of symptoms and medical interventions. Bereavement is complicated by the Coroner'sinvestigation of the death and on-going benefit and compensation claims which may continue for years – all delaying resolution and adding to anger and resentment. Psychosocial distress in patients with cancer and their families is well documented; in mesothelioma, the specific non-clinical issues explored in this paper add a significant load to the burden of suffering.