Self-Perceived Knowledge and Comfort Discussing Palliative Care and End-of-Life Issues among Professionals Managing Neuroinflammatory Diseases

Abstract

Background: The growing trend in providing palliative care and end-of-life services has dictated that healthcare providers be adequately trained to care for people with serious illnesses, such as multiple sclerosis (MS) and neuromyelitis optica spectrum disorder (NMOSD). These progressive inflammatory diseases lead to physical, cognitive and emotional deficits and have exceptionally high care demands leading to high levels of distress. Because the impact on the delivery of patient care is influenced by the specialists' knowledge and comfort discussing end-of-life issues, it is concerning that interventions to address unmet palliative care needs in MS and NMOSD rarely include clinician-patient dyads. Objectives: To evaluate the neurology clinicians' knowledge and level of comfort discussing palliative care and end-of-life issues. Design: A cross sectional survey was conducted. The statistical analyses included frequencies, chi square statistics and logistic regression. Setting/Subjects: 414 MS specialists answered an online anonymous survey. The survey was conducted using email distributions to MS professionals through the Consortium of MS Centers (CMSC), the International Organization of MS Nurses (IOMSN) and the UK Nurses' MS Organization. Measurement: The “End of Life Professional Caregiver Survey” (EPCS) was used to collect data. Results: The majority of the multidisciplinary professionals were female, white, nurses, and older than 40 years of age. 41% had their own advance directives and 57.6% had end-of-life basic training. There was a statistically significant association between end-of-life training or having advance directives and comfort discussing palliative care and end of life issues. Professionals that had basic end-of-life training and their own advance directives had higher comfort discussing code status, specific end-of-life issues, and advance directive planning. Conclusions: Basic end-of-life training and having advance directives among MS professionals were associated with better communication of palliative care and end-of-life domains with patients and their care partners.