title: Ethical challenges in the care of children and families affected by life-limiting neuromuscular diseases.
abstract: OBJECTIVE
  We sought to understand how neuromuscular clinicians respond to the ethical challenges that arise in caring for children with life-limiting neuromuscular diseases.
  
  
  METHODS
  We conducted a national survey of interdisciplinary professionals who care for children with Duchenne Muscular Dystrophy and Spinal Muscular Atrophy Type-1 to document their knowledge, attitudes, beliefs and reported practices with regard to prominent ethical challenges, and their suggestions for ethics interventions that would assist them in improving clinical practice.
  
  
  RESULTS
  157 participants completed paper or electronic surveys for an overall participation rate of 24%. A significant minority of respondents were either unaware of or chose not to adopt relevant ethical guidelines, and reported experiencing crises of conscience in the care of their patients. In response to 8 ethical dilemmas, there was variability in how often respondents encountered them, their comfort in addressing them, and their reported practices, including only 24% who have requested ethics consultation.
  
  
  CONCLUSIONS
  Training of interdisciplinary clinicians is needed to improve their adoption of relevant ethical guidelines, cultivate greater awareness of diverse attitudes regarding the ethical permissibility of different treatment options and the utility of ethics consultation, and foster greater confidence and competence in responding to ethical challenges that arise in pediatric neuromuscular practice.
authors.affiliation: Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD 21205, USA. ggeller@jhu.edu
authors.forename: Gail
authors.initials: G
authors.lastname: Geller
authors.forename: Krista L
authors.initials: KL
authors.lastname: Harrison
authors.forename: Cynda H
authors.initials: CH
authors.lastname: Rushton
mesh_terms: D000328:Adult; D000368:Aged; D033061:Ethics Consultation / Q000706:statistics & numerical data*; D005260:Female; D006282:Health Personnel / Q000941:ethics* / Q000523:psychology; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D020388:Muscular Dystrophy, Duchenne / Q000628:therapy; D009468:Neuromuscular Diseases / Q000628:therapy*; D010820:Physicians / Q000941:ethics* / Q000523:psychology; D014897:Spinal Muscular Atrophies of Childhood / Q000628:therapy; D011795:Surveys and Questionnaires; D055815:Young Adult