Palliative Care and End of Life Care BT - Neurodegenerative Disorders: A Clinical Guide

Abstract

In the absence of effective disease-modifying drugs, the emphasis in all of the neurodegenerative conditions is on symptom management and maintenance of quality of life for both patients and carers. Palliative care enhances quality of life for patients and family members by addressing medical symptoms and individual psychological, social, and spiritual needs. Emphasis is placed on patient autonomy and dignity. Patients are encouraged to generate advance directives. Most patients with progressive neurodegenerative conditions will deteriorate and require palliative and end of life care. This will vary from disease to disease, for instance the average prognosis for a person with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) will be 2–3 years but 25 % will be alive at 5 years and 10 % at 10 years whereas multiple sclerosis (MS) will have a much longer prognosis which may be over 20 years. However, at some time during the disease progression palliative care may be appropriate.