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Semin Respir Crit Care Med
DOI: 10.1055/s-0044-1787994
Review Article

Five Questions to Help Prompt End-of-Life Planning in Neuromuscular Disease

Benjamin J. Lipanot
1   Division of Pulmonary, Critical Care, Allergy, and Occupational Medicine, Department of Medicine, Indiana University School of Medicine, Indianapolis, Indiana
,
Gabriel Bosslet
1   Division of Pulmonary, Critical Care, Allergy, and Occupational Medicine, Department of Medicine, Indiana University School of Medicine, Indianapolis, Indiana
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Abstract

Patients with neuromuscular disease are living longer lives but continue to have significant and often unpredictable morbidity and mortality. End-of-life planning for these patients is thus an essential part of their medical care. This planning should include the following topics: health care surrogates, swallowing and nutrition, daytime respiratory support, and all aspects of when end of life is near. Adult-onset and early-onset diseases may require different approaches to these topics. All patients with neuromuscular disease will benefit from these discussions to best reach patient-centered goals. We present health care providers these five questions and explanations as a guide.

Keywords

neuromuscular - end of life - goals - planning - surrogates - conversation


Publication History

Article published online:
19 July 2024

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