The Patient’s Experience of Malignant Mesothelioma

Abstract

Much of our understanding of malignant mesothelioma (MM) is from the perspective of the scientist and physician, focusing on the etiology, biology, and treatment for the disease. Clinicians caring for persons with this cancer have to be prepared to go beyond biology and examine the patient’s experience. The human experience of MM is complex and extends into the realms of psychology, sociology, communication styles, and personal identity. Understanding the elements of that experience allows the care team to respond skillfully to patients. Often patients’ distress can be prevented and treated if the nature of suffering is recognized. Unfortunately, much of that suffering goes unrecognized and untreated. Treatment guidelines in major medical organizations such as ASCO, NCCN, and British Thoracic Society now include specific recommendations to remedy this. Case studies demonstrate how to recognize the circumstances that require such interventions and ways to integrate care into a comprehensive treatment strategy. In this review, ways to prevent distress are explored from both patient and physician perspectives.