Neuromuscular Disorders and Palliative Care in Adults

Palliative care in neuromuscular disorders was first successfully administered to patients with motor neurone disease, by adult hospices or other services and delivered to those with a diagnosis of Duchenne muscular dystrophy within children’s hospices. The change in model of palliative care and the change in therapeutic options open to those with certain neuromuscular disorders has meant that adults with other neuromuscular disorders have now clear symptom and end-of-life needs which, it is argued, should be delivered by adult palliative care. This change in profile of patients also has impact on adult practitioners and an adult ITU setting. This chapter gives a brief summary of palliative care in motor neurone disease and looks at the scope for palliative care within other neuromuscular disease, e.g. what these symptom control issues are and could be, what advance care planning looks like in this group and what a service delivery model could look like. It looks particularly at the ethics and rational behind advance care planning and end–of-life care for this group of patients.