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Ethical Challenges in the Care of Children and Families Affected by Life-Limiting Neuromuscular Diseases

Geller, Gail ScD, MHS*,†,‡,§; Harrison, Krista L. BA*,‖; Rushton, Cynda H. PhD, RN*,§,¶,**

Journal of Developmental & Behavioral Pediatrics: September 2012 - Volume 33 - Issue 7 - p 548–561
doi: 10.1097/DBP.0b013e318267c62d
Original Article

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.

*Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD

Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD

Department of Health, Behavior and Society, Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD

§Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD

Department of Health Policy and Management, Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD

School of Nursing, Johns Hopkins University, Baltimore, MD

**Harriett Lane Compassionate Care, Johns Hopkins Children's Center, Johns Hopkins University, Baltimore, MD.

Address for reprints: Gail Geller, ScD, MHS, Johns Hopkins University Berman Institute of Bioethics, Deering Hall, Room 202, 1809 Ashland Avenue, Baltimore, MD 21205; e-mail: ggeller@jhu.edu.

Disclosure: The study was funded by the Greenwall Foundation. The authors have no conflicts of interest to disclose.

Received February , 2012

Accepted May , 2012

© 2012 Lippincott Williams & Wilkins, Inc.