{"title":"帮助神经肌肉疾病患者制定生命终结计划的五个问题。","authors":"Benjamin J Lipanot, Gabriel Bosslet","doi":"10.1055/s-0044-1787994","DOIUrl":null,"url":null,"abstract":"<p><p>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. <i>Adult-onset</i> and <i>early-onset</i> 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.</p>","PeriodicalId":21727,"journal":{"name":"Seminars in respiratory and critical care medicine","volume":null,"pages":null},"PeriodicalIF":2.3000,"publicationDate":"2024-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Five Questions to Help Prompt End-of-Life Planning in Neuromuscular Disease.\",\"authors\":\"Benjamin J Lipanot, Gabriel Bosslet\",\"doi\":\"10.1055/s-0044-1787994\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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. <i>Adult-onset</i> and <i>early-onset</i> 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.</p>\",\"PeriodicalId\":21727,\"journal\":{\"name\":\"Seminars in respiratory and critical care medicine\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.3000,\"publicationDate\":\"2024-07-19\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Seminars in respiratory and critical care medicine\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1055/s-0044-1787994\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"CRITICAL CARE MEDICINE\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Seminars in respiratory and critical care medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1055/s-0044-1787994","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CRITICAL CARE MEDICINE","Score":null,"Total":0}
Five Questions to Help Prompt End-of-Life Planning in Neuromuscular Disease.
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.
期刊介绍:
The journal focuses on new diagnostic and therapeutic procedures, laboratory studies, genetic breakthroughs, pathology, clinical features and management as related to such areas as asthma and other lung diseases, critical care management, cystic fibrosis, lung and heart transplantation, pulmonary pathogens, and pleural disease as well as many other related disorders.The journal focuses on new diagnostic and therapeutic procedures, laboratory studies, genetic breakthroughs, pathology, clinical features and management as related to such areas as asthma and other lung diseases, critical care management, cystic fibrosis, lung and heart transplantation, pulmonary pathogens, and pleural disease as well as many other related disorders.