Patients feeling severely affected by multiple sclerosis: how do patients want to communicate about end-of-life issues?

Abstract

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.