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Ethical decision-making for children with neuromuscular disorders in the COVID-19 crisis
Naomi T Laventhal1, Robert J Graham1, Sonja A Rasmussen1
1From the Division of Neonatal-Perinatal Medicine (N.T.L.), Department of Pediatrics, University of Michigan School of Medicine and C.S. Mott Children's Hospital; Center for Bioethics and Social Sciences in Medicine (N.T.L.), University of Michigan, Ann Arbor, MI; Department of Anesthesiology (R.J.G.), Critical Care and Pain Medicine, Boston Children's Hospital and Department of Anaesthesia (R.J.G.), Harvard Medical School, Boston, MA; Department of Pediatrics (S.A.R.), University of Florida College of Medicine; Department of Epidemiology (S.A.R.), University of Florida College of Medicine and College of Public Health and Health Professions, Gainesville, FL; Department of Neurology (D.K.U.), Boston Children's Hospital and Harvard Medical School, Boston, MA; Division of Pediatric Neurology (P.B.K.), Department of Pediatrics, University of Florida College of Medicine; and Department of Neurology and Department of Molecular Genetics and Microbiology (P.B.K.), University of Florida College of Medicine, Gainesville, FL.
Insights
Children with neuromuscular disorders may face resource allocation challenges during pandemics. Their long-term prognoses are often better than assumed, warranting updated critical care guidelines.
Area of Science:
- Pediatrics
- Neurology
- Public Health Policy
Background:
- The coronavirus disease 2019 (COVID-19) pandemic has highlighted potential resource constraints in critical care.
- Patients with chronic disabilities, including pediatric neuromuscular disorders, fear lower priority in resource allocation due to perceived poor prognoses.
- Existing crisis standards of care may not adequately consider the specific needs and outcomes of children with neuromuscular disorders.
Purpose of the Study:
- To inform healthcare workers, policymakers, and government officials about the prognoses of children and young adults with neuromuscular disorders.
- To advocate for evidence-based resource allocation guidelines during public health crises.
- To ensure fair and informed decision-making in critical care settings for vulnerable pediatric populations.
Main Methods:
- Review of contemporary long-term outcome data for pediatric neuromuscular disorders.
- Analysis of the natural history and acute respiratory illness trajectory in this population.
- Consideration of the impact of multidisciplinary supportive care and novel molecular therapies.
Main Results:
- Long-term prognoses for children and young adults with neuromuscular disorders are often more favorable than previously believed.
- Advances in understanding disease natural history, supportive care, and molecular therapies significantly improve outcomes.
- Acute respiratory illness in this population has a known trajectory that should inform crisis care planning.
Conclusions:
- Resource allocation guidelines during pandemics must be informed by current, accurate data on pediatric neuromuscular disorders.
- Shifting from individual to crisis standards of care should not disregard established evidence on long-term patient outcomes.
- Updated guidelines are crucial to ensure equitable critical care access for children and young adults with neuromuscular conditions.
Abstract:
The sudden appearance and proliferation of coronavirus disease 2019 has forced societies and governmental authorities across the world to confront the possibility of resource constraints when critical care facilities are overwhelmed by the sheer numbers of grievously ill patients. As governments and health care systems develop and update policies and guidelines regarding the allocation of resources, patients and families affected by chronic disabilities, including many neuromuscular disorders that affect children and young adults, have become alarmed at the possibility that they may be determined to have less favorable prognoses due to their underlying diagnoses and thus be assigned to lower priority groups. It is important for health care workers, policymakers, and government officials to be aware that the long-term prognoses for children and young adults with neuromuscular disorders are often more promising than previously believed due to a better understanding of the natural history of these diseases, benefits of multidisciplinary supportive care, and novel molecular therapies that can dramatically improve the disease course. Although the realities of a global pandemic have the potential to require a shift from our usual, highly individualistic standards of care to crisis standards of care, shifting priorities should nonetheless be informed by good facts. Resource allocation guidelines with the potential to affect children and young adults with neuromuscular disorders should take into account the known trajectory of acute respiratory illness in this population and rely primarily on contemporary long-term outcome data.
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