Palliative care roles and responsibilities of mesothelioma clinical nurse specialists in the UK

Abstract

Mesothelioma is a rare incurable cancer caused by exposure to asbestos. Patients with mesothelioma have palliative care needs throughout the course of their illness, from diagnosis to the end of life. Mesothelioma clinical nurse specialists (CNSs) are central to providing care for patients with mesothelioma, but little is known about their role in providing palliative care. The aim of this study was to explore the views of mesothelioma patients and CNSs on the role of palliative care in mesothelioma, and explore which aspects of palliative care are provided by CNS’s. The cross-sectional study included: (1) Secondary analysis of existing data from 510 mesothelioma patients who completed a 2019 survey of patient experiences and; (2) A survey of 23 Mesothelioma UK CNS’s exploring their role in delivering palliative care. Data were analysed using descriptive statistics. Results indicated that 63% of mesothelioma patients did not feel that palliative care was needed at the time of survey completion. Data from the CNS survey showed that over 95% of CNS’s felt they had a role in providing palliative care, and all CNSs had received some prior training or education in palliative care. Confidence in delivering palliative care was generally high with the mean score of 26.52 (SD = 2.68) out of a maximum of 30. CNS’s are highly skilled at providing palliative care in mesothelioma, providing both specialist and generalist palliative care. However, work is required to encourage patients and their families to engage with palliative care earlier in the disease trajectory.