The palliative care needs of people severely affected by neurodegenerative disorders: A qualitative study

Abstract

Specialist palliative care services are often involved in the care of people with progressive neurological disease, in particular amyotrophic lateral sclerosis. However, the particular needs of people with advanced and progressive neurological disease are not well known. A qualitative approach was used, interviewing people with advanced amyotrophic lateral sclerosis/motor neurone disease (ALS/MND), multiple sclerosis (MS), Parkinson's disease (PD), and multiple systems atrophy (MSA) and their family carers to ascertain their particular needs. Focus groups of health and social care professionals allowed a professional view of the needs. People with progressive disease have many, difficult and distressing symptoms: physical, including pain, movement issues, swallowing and speech problems, psychological, feelings of being abandoned and of anxiety and depression, social, of isolation, of being a burden and of financial issues, and spiritual, of loss of hope and the meaning of life as they approach death. These issues could be helped by the development of a palliative care approach and the involvement of a specialist palliative care team, which was supported by patients, carers, and professionals.