End of Life Issues

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Epub ahead of printBuecken et al.  Patients feeling severely affected by multiple sclerosis: How do patients want to communicate about end-of-life issues? Patient Educ Couns. 2012 Apr 3.  

OBJECTIVE: Investigate MSers’ 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: MSers 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.


Although, this is a difficult issue to discuss it needs to be addressed head-on. MS is a bad disease and the fact that there is a terminal and pre-terminal phase can’t be ignored. Last Tuesday in clinic I saw a MSer, who is severely disabled and had recently been admitted to hospital because of a urinary tract infection and septicaemia. I used this as an opportunity to discuss how she feels about advanced life support. Up until that point in her management no one had raised this issue. I just so happens that she has a very supportive family with an excellent quality of life and would want advanced life support (intensive-care and active intervention). I recommended that she should discuss this with her family to make them aware of her wishes and that she completes and directive or living will outlining her wishes. It is better to deal with these issues in the light of day than waiting for them to emerge as an emergency.”

“If you have not done so already can you please complete our survey on End-of-Life-Issues to help us develop guidelines to address these issues. Thank you.”

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Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

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