title: 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).
  
  
  CONCLUSIONS
  People with MS have a desire to talk about progression of their disease with their doctors.
  
  
  CONCLUSIONS
  Physicians should be empathetic in raising critical aspects of the patients' illness individually.
authors.affiliation: Department of Palliative Medicine, University Hospital, Cologne, Germany. raphael_buecken@yahoo.de
authors.forename: Raphael
authors.initials: R
authors.lastname: Buecken
authors.forename: Maren
authors.initials: M
authors.lastname: Galushko
authors.forename: Heidrun
authors.initials: H
authors.lastname: Golla
authors.forename: Julia
authors.initials: J
authors.lastname: Strupp
authors.forename: Moritz
authors.initials: M
authors.lastname: Hahn
authors.forename: Nicole
authors.initials: N
authors.lastname: Ernstmann
authors.forename: Holger
authors.initials: H
authors.lastname: Pfaff
authors.forename: Raymond
authors.initials: R
authors.lastname: Voltz
mesh_terms: D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D003142:Communication; D018450:Disease Progression; D004644:Emotions; D004645:Empathy; D005260:Female; D005858:Germany; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000523:psychology*; D020380:Needs Assessment; D010817:Physician-Patient Relations; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D013727:Terminal Care; D019452:Terminally Ill / Q000523:psychology*