Building the Evidence Base for End of Life Decision Making for Men with Duchenne Muscular Dystrophy (DMD)

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Summary

This study aims to find out what men with DMD think about how best to bring up and discuss the highly sensitive topic of end of life planning. We know that for people with life limiting conditions, talking about end of life planning can improve quality of life (patients tend to feel better that they have finally talked about it) and that there are better bereavement outcomes for those left behind (they tend to feel that they did not leave lots of things unsaid or unplanned). But we know very little about how those most directly affected – men with DMD in this case – want these conversations to take place. Important questions are: where, when, how and with whom? The proposal builds on existing collaborations with colleagues who have strong relationships with all of the three main Neuromuscular Disease (NMD) charities and a wide constituency of people directly affected by NMD.

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