P.117 - Men with Duchenne muscular dystrophy and end of life planning

Abstract

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. This qualitative study was conducted in 15 men with DMD (aged 20–45 years). Participants could not recall any significant conversations with clinicians about EoL 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 EoL 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 DMD, family members and the wider NMD community to pay attention to EoL planning issues and the associated need for emotional support and high quality interactions between patients and clinicians.