Article Text
In the light of increasing media coverage, we sought to explore the attitudes towards end of life issues among people with MS (n=83, 84% from UK) and MND (n=117, 45% from UK) via online surveys posted on the websites including the MS Society website and MND chat-sites.
Advance decisions 10/82 (12%) PwMS and 57/76 (75%) PwMND had written an advance decision. 36/71 (51%) PwMS wanted more information.
Mood 16/47 (34%) PwMS and 24/47 (51%) PwMND had considered suicide since their diagnosis. 30/47 (64%) PwMS and 49/75 (65%) PwMND would like the healthcare team to ask about their mood.
Assisted suicide and dying 72/83 (77%) PwMS and 64/75 (85%) PwMND believed in the right to choose how and when we die. 64/83 (77%) PwMS and 53/75 (71%) PwMND believed that assisted suicide should be legalised in their country. 25/80 (31%) PwMS and 16/74 (22%) PwMND had considered going abroad for assisted suicide.
Communication and the doctor–patient relationship 5/76 (7%) PwMS and 32/74 (43%) PwMND had discussed such issues with a doctor or nurse. 16/77 (21%) PwMS and 38/72 (53%) PwMND wished to do so. 51% of both PwMS and PwMND considered it not a problem if their clinician was involved in assisted suicide. A further 28% PwMS and 21% PwMND felt it would not affect the treatment of their condition. The results highlight a need for better patient education and openness about end of life options, including advance decisions, and a greater exploration of these issues on a wider scale.
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Email: moragbrothwell{at}hotmail.com