General rightsThis document is made available in accordance with publisher policies. Please cite only the published version using the reference above. Full terms of use are available: http://www.bristol.ac.uk/pure/about/ebr-terms The men in the study wanted to be given proactive cues that they could bring up topics such as death and dying and wanted to have these conversations with clinicians who combined expert knowledge about the condition as well as good listening skills. Topics of interest to participants included likely nature and place of death; practical planning for funerals and wills; and sources of information and support. Emotional or psychological support to think about end of life was not routinely offered and participants found it very difficult to discuss these issues with family members. The study suggests that more could be done to encourage clinicians, men with Duchenne, family members and the wider NMD community to pay attention to end of life planning issues and the associated need for emotional support and high quality interactions between patients and clinicians.