Advance care planning in motor neuron disease: A qualitative study of caregiver perspectives

摘要

Background: Motor neuron disease is a fatal disease, characterised by progressive loss of motor function, often associated with cognitive deterioration and, in some, the development of frontotemporal dementia. Life-sustaining technologies are available (e.g. non-invasive ventilation and enteral nutrition) but may compromise quality of life for some patients. Timely commencement of Advance Care Planning' enables patients to participate in future care choices; however, this approach has rarely been explored in motor neuron disease.