Ethical challenges in the care of children and families affected by life-limiting neuromuscular diseases

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. Conclusion: 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.