title: Using palliative care in progressive neuromuscular disease to maximize quality of life.
abstract: This article discusses the role of palliative care in the treatment pathway of patients with progressive neuromuscular disease (NDM), including amyotrophic lateral sclerosis and Duchenne muscular dystrophy (DMD). People with severe NMDs like DMD are now living much longer, well in to adulthood. This makes them suitable for the medical model of palliative care. Yet palliative medicine is a new area, especially for "adults" with DMD. Strategies for identifying the most effective modalities to alleviate suffering in patients with an NMD receiving palliative services and creating best practice standards in pain and symptom management for this patient population are discussed.
authors.affiliation: Department of Physical Medicine and Rehabilitation, University of California at Davis, Sacramento, CA 95817, USA. gtcarter@uw.edu
authors.forename: Gregory T
authors.initials: GT
authors.lastname: Carter
authors.forename: Nanette C
authors.initials: NC
authors.lastname: Joyce
authors.forename: Allison L
authors.initials: AL
authors.lastname: Abresch
authors.forename: Amanda E
authors.initials: AE
authors.lastname: Smith
authors.forename: Gregg K
authors.initials: GK
authors.lastname: VandeKeift
mesh_terms: D059350:Chronic Pain / Q000209:etiology / Q000628:therapy; D006801:Humans; D009468:Neuromuscular Diseases / Q000150:complications / Q000628:therapy*; D010166:Palliative Care; D011788:Quality of Life