Palliative care in multiple sclerosis and motor neurone disease

Over the last 30 years palliative care has gone through many changes. It has evolved from caring solely for cancer patients and their families to helping people with non-malignant life-limiting conditions. People with multiple sclerosis and motor neurone disease may need palliative care to the same extent as people with cancer, experiencing uncontrolled pain, shortness of breath, fatigue and emotional distress (Newrick and Langton-Hewer, 1985: O'Brien et al. 1992; Higginson et al, 2006). As well as coping with debilitating symptoms and progressive disability, these patients can be vulnerable to life-threatening episodes of infection and repeated hospital admissions. They may have to consider whether or not to have potentially life-prolonging interventions such as artificial feeding or respiratory support. These discussions can be difficult and frightening for patients and their families. Multiple sclerosis and motor neurone disease can place patients and families under significant levels of physical, emotional and financial strain, making multidisciplinary assessment and support essential. It is not the case, however, that when active treatment stops, 'nothing more can be done'.