Men with Duchenne muscular dystrophy and end of life planning

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There is very limited evidence about the views of men with Duchenne muscular dystrophy (DMD) and End of Life (EoL) issues including death and dying. This is despite general research evidence which highlights the benefits of EoL planning to all concerned. Knowledge of these benefits may not be widely understood by the whole range of staff who support men with DMD and their families. Despite policy documents and guidance in the UK about EoL planning, there is consensus on the need for improvement for EoL in DMD.

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