Neuropalliative Care in Neuromuscular Disorders

This article outlines the physical, psychological, social, and spiritual issues that people with neuromuscular disease may face as the disease progresses and how neuropalliative care can help in the assessment and management of these issues.

Understanding of the genetic influences on progressive neuromuscular disease is increasing, and new treatments are being developed that may offer the possibility of slowing or even halting disease, although the treatments may be very expensive. The use of technology will allow some areas of care, particularly communication, to be improved. The use of voice banking, eye-gaze communication systems, and enhanced communication aids will all improve care and quality of life for people with neuromuscular disease. New treatments and approaches to symptom management and the increased use of multidisciplinary care teams will help improve the quality of life and maybe the length of life for patients.

Careful assessment and individualized care, provided by a skilled multidisciplinary care team, are emphasized in the holistic approach to neuropalliative care, which considers physical, psychological, social, spiritual, and existential aspects for people with neuromuscular diseases. The support of all involved, including the patients with the disorders, their families and care partners, and the multidisciplinary care team is important.