Men with Duchenne muscular dystrophy and end of life planning

There is very limited evidence about the views of men with Duchenne muscular dystrophy (DMD) and end of life issues including death and dying. Studies have shown the physiological and psychological benefits of talking about and planning for end of life. Despite policy documents and guidance in the UK about end of life planning, there is consensus on the need for improvement. The study reported here is a qualitative one with 15 men with DMD (aged 20-45 years). Participants could not recall any significant conversations with clinicians about end of life and assumed that clinicians were reluctant to discuss the issue. 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.