Palliative Care and End-of-Life Decision-Making for People with Neuromuscular Disease

This chapter will provide an overview of palliative care and end-of-life decision-making and its role in neuromuscular diseases. Making end-of-life decisions encompasses several facets that impact physical, social, and psychological factors surrounding the patient and the family. Generally, these facets stem from the diagnosis of a terminal condition, impact of disease progression, quality of life, patient wishes, and the role of the caregiver. Specific areas that play an integral role in end-of-life decision-making will also be addressed in this chapter. These include respiratory status, nutrition and hydration, pain, depression, advance care planning, ethical considerations, and end of life.