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

被引:1
作者
Lipanot, Benjamin J. [1 ]
Bosslet, Gabriel [1 ]
机构
[1] Indiana Univ Sch Med, Dept Med, Div Pulm Crit Care Allergy & Occupat Med, 1120 W Michigan St,CL 287, Indianapolis, IN 46202 USA
关键词
neuromuscular; end of life; goals; planning; surrogates; conversation; DUCHENNE MUSCULAR-DYSTROPHY; MECHANICAL VENTILATION; DECISION-MAKING; CARE; PATIENT; TRACHEOSTOMY; INDIVIDUALS; EXPERIENCE; MANAGEMENT; PHYSICIANS;
D O I
10.1055/s-0044-1787994
中图分类号
R4 [临床医学];
学科分类号
1002 ; 100602 ;
摘要
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.
引用
收藏
页码:233 / 239
页数:7
相关论文
共 51 条
[31]   The ALS Patient Care Database: Insights into end-of-life care in ALS [J].
Mandler, RN ;
Anderson, FA ;
Miller, RG ;
Clawson, L ;
Cudkowicz, M ;
Del Bene, M .
AMYOTROPHIC LATERAL SCLEROSIS AND OTHER MOTOR NEURON DISORDERS, 2001, 2 (04) :203-208
[32]   Requested withdrawal of mechanical ventilation in six patients with motor neuron disease [J].
Messer, Ben ;
Armstrong, Alison ;
Doris, Thomas ;
Williams, Tim .
BMJ SUPPORTIVE & PALLIATIVE CARE, 2020, 10 (01) :10-13
[33]   Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review) Report of the Quality Standards Subcommittee of the American Academy of Neurology [J].
Miller, R. G. ;
Jackson, C. E. ;
Kasarskis, E. J. ;
England, J. D. ;
Forshew, D. ;
Johnston, W. ;
Kalra, S. ;
Katz, J. S. ;
Mitsumoto, H. ;
Rosenfeld, J. ;
Shoesmith, C. ;
Strong, M. J. ;
Woolley, S. C. .
NEUROLOGY, 2009, 73 (15) :1218-1226
[34]   Cultural considerations in forgoing enteral feeding: A comparison between the Hong Kong Chinese, North American, and Malaysian Islamic patients with advanced dementia at the end-of-life [J].
Ngan, Olivia M. Y. ;
Bergstresser, Sara M. ;
Sanip, Suhaila ;
Emdadul Haque, A. T. M. ;
Chan, Helen Y. L. ;
Au, Derrick K. S. .
DEVELOPING WORLD BIOETHICS, 2020, 20 (02) :105-114
[35]   How Our Amyotrophic Lateral Sclerosis Patients Die [J].
Pascual Martinez, Natalia ;
Melgar Herrero, Maria ;
Gomez Rebollo, Cristina ;
Martinez Repiso, Elisa .
EUROPEAN RESPIRATORY JOURNAL, 2020, 56
[36]   Survival and decision making for tracheotomy in ALS [J].
Pascual Martinez, Natalia ;
Martin Bueno, Silvia ;
Palomares Muriana, Ana ;
Montoro Ballesteros, Francisca ;
Feu Collado, Nuria ;
Jurado Gamez, Bernabe .
EUROPEAN RESPIRATORY JOURNAL, 2018, 52
[37]   Clarifying substituted judgement: the endorsed life approach [J].
Phillips, John ;
Wendler, David .
JOURNAL OF MEDICAL ETHICS, 2015, 41 (09) :723-730
[38]  
POLST, US
[39]   Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: A population-based retrospective cohort study (2003-2014) [J].
Rose, Louise ;
McKim, Douglas ;
Leasa, David ;
Nonoyama, Mika ;
Tandon, Anu ;
Bai, Yu Qing ;
Amin, Reshma ;
Katz, Sherri ;
Goldstein, Roger ;
Gershon, Andrea .
PLOS ONE, 2019, 14 (03)
[40]   Parent-child communication and timing of interventions are challenges in the Duchenne muscular dystrophy care [J].
Saetrang, T. ;
Bjork, I. T. ;
Capjon, H. ;
Rasmussen, M. .
ACTA PAEDIATRICA, 2019, 108 (03) :535-540