Existential concerns for people with motor neurone disease: Who is listening to their needs,priorities and preferences?

Abstract

People living with motor neurone disease are told at the time of their diagnosis that they have a life-limiting illness, and depending on the type of motor neurone disease diagnosed they may have only months or years to live. The Motor Neurone Disease Association practice guidelines recommend that multidisciplinary health and social care professionals should focus upon psychological, functional and medical management. A referral to the palliative care team is recommended as the disease progresses, if a person experiences a loss of speech or respiratory insufficiency. People living with motor neurone disease have existential concerns from the time of their diagnosis. Valuable opportunities may be lost to discuss and document their needs, priorities and preferences for end-of-life care before a person loses their ability to communicate by any means. Occupational therapists working as a member of a multidisciplinary team have an important role to play in this area of practice, as people newly diagnosed with motor neurone disease are often referred to occupational therapy services because of their loss of function.