Related Experiment Video
Updated: May 23, 2026
Comprehensive Autopsy Program for Individuals with Multiple Sclerosis
Published on: July 19, 2019
Patients feeling severely affected by multiple sclerosis: how do patients want to communicate about end-of-life
Raphael Buecken1, Maren Galushko, Heidrun Golla
1Department of Palliative Medicine, University Hospital, Cologne, Germany. raphael_buecken@yahoo.de
Objective:
Investigate multiple sclerosis patients' desire to communicate with their physicians about their disease progression and end-of-life issues.
Methods:
Persons meeting the inclusion criteria of feeling severely affected by MS were invited via the German MS society to complete a needs questionnaire. Replies to questions on physician empathy and wishes about communication regarding disease progression and death and dying were quantitatively analyzed. Endpoints (point 1+2/4+5) of 5-point-likert scales are summarized under results.
Results:
573 of 867 questionnaires meeting our criteria were analyzed. In response to a general question 64% (n = 358) indicated a wish for disease progression and death and dying to be addressed by their doctor. A majority (76%, n = 427) considered it important that progression of their disease be discussed, while 44% (n = 246) regard addressing death and dying as unimportant. No objective disease criteria could be identified to explain the wish for communicating end-of-life issues. Doctors who were retrospectively viewed as avoiding raising critical aspects of the illness were perceived as less empathetic (p < 0.001).
Conclusion:
People with MS have a desire to talk about progression of their disease with their doctors.
Practice Implications:
Physicians should be empathetic in raising critical aspects of the patients' illness individually.
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