Professionals' Knowledge and Attitudes about End of Life in MS

Background: The growing trend in the utilization of palliative care and end of life services has dictated that all healthcare providers be adequately trained to care for people with serious illnesses. Multiple sclerosis (MS) is a progressive inflammatory disease resulting in physical, cognitive and emotional deficits. MS has exceptionally high care demands and leads to high levels of physical and psychological distress in patients with MS and their caregivers, as the disease causes an increasing symptom burden and limitations of activity and participation over time. Unfortunately, interventions to address unmet palliative care needs rarely include MS clinician-patient dyads. Notably, the impact on the delivery of patient care may be influenced by the MS specialists’ beliefs and knowledge of end-of-life issues. 

Objectives: evaluate the MS clinicians’ level of comfort discussing end of life issues and basic knowledge about palliative care. 

Methods: A non-randomized cross-sectional survey was conducted using the "End-of-Life Professional Caregiver Survey” (EPCS). 413 MS specialists answered the survey within 12 weeks using the IOMSN, CMSC and UK Nurses’ organizations’ participants’ list.

Results: Majority of professionals were females (85%), nurses (62%) and >20 years of experience. 57% had basic end-of-life training and 41% had advance directives. Majority of the professionals were comfortable discussing poor prognosis with their patients (60%), and encourage patients and families to complete advance care planning (57%). 57% were not comfortable discussing end-of-life care early in the course of the illness or discussing specific issues such as, gastric tube or breathing tube. There was a highly significant association between having basic end-of-life training and the comfort of discussing specific wishes of patients such as, placing a gastric or a breathing tube (X²=45.534, p=<.0001), comfort of discussing advance directives (X²=49.146, p=<.0001), and discussing code status (X²=63.088, p=<.0001). There was a highly significant association between MS specialists having their own advance directives and being comfortable discussing advance directive early in the disease course (X²=36.306, p=<.0001). MS specialists reported that they do not have ample resources regarding end-of-life care. 

Conclusions: Professionals caring for patients with multiple sclerosis have partial knowledge about end-of-life care but they require educational services about counseling and providing support for their patients. Having advance directives and basic end-of-life training were significantly associated with MS specialists’ comfort discussing code status, options of gastric or breathing tube, and discussing advance directives with patients and families. MS is a progressive disease requiring addressing end-of-life issues and educational programs for professionals and their patients.