Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community

Abstract

OBJECTIVE: To compare the illness trajectories, needs, and service use of patients with cancer and those with advanced non-malignant disease. DESIGN: Qualitative interviews every three months for up to one year with patients, their carers, and key professional carers. Two multidisciplinary focus groups. SETTING: Community based. PARTICIPANTS: 20 patients with inoperable lung cancer and 20 patients with advanced cardiac failure and their main informal and professional carers. MAIN OUTCOME MEASURES: Perspectives of patients and carers about their needs and available services. RESULTS: 219 qualitative interviews were carried out. Patients with cardiac failure had a different illness trajectory from the more linear and predictable course of patients with lung cancer. Patients with cardiac failure also had less information about and poorer understanding of their condition and prognosis and were less involved in decision making. The prime concern of patients with lung cancer and their carers was facing death. Frustration, progressive losses, social isolation, and the stress of balancing and monitoring a complex medication regimen dominated the lives of patients with cardiac failure. More health and social services including financial benefits were available to those with lung cancer, although they were not always used effectively. Cardiac patients received less health, social, and palliative care services, and care was often poorly coordinated. CONCLUSIONS: Care for people with advanced progressive illnesses is currently prioritised by diagnosis rather than need. End of life care for patients with advanced cardiac failure and other non-malignant diseases should be proactive and designed to meet their specific needs.