palliative care, multiple sclerosis

Aims: The aim of the research was to determine MS patients’ attitudes to end-of-life care, and to compare them according to demographic data, duration and progression of disease. Methods: 133 patients with MS meeting the following criteria were included in this cross-sectional study: >six months after diagnosis, age >18 years, MMSE ≥24 points. The ELC-PND (The Attitudes and Opinions of Patients with a Progressive Neurological Disease to End-of-Life Care Questionnaire), containing 33 questions divided into four domains, was used to collect data. For data analysis the Kruskal-Wallis test and the Spearman correlation coefficient were used. Results: MS patients reported a higher level of agreement (p<0.001) with the idea of control over the end of life than with keeping patients alive at all costs (e.g., introduction of artificial nutrition, artificial pulmonary ventilation). Wanting control of the end of life was reported most often by widowers (p=0.0389). Forty-one percent of patients (most often patients over 40 years (p=0.044); and without university education (p=0.036) agreed with having “medicine available to terminate one’s life”. Conversely, 24% of patients would prefer to maintain life at any cost. A negative correlation was found between favouring keeping patients alive, and duration of disease (r=-0.197; p=0.023). Ninety percent of patients wished to be informed of prognosis and end-of-life care as early as at the onset of the disease. Patients with the disease for longer than seven years (p=0.324) most often favoured full awareness of families from the onset of the disease. Most patients (75%) wished to die at home.