Long-Term Ventilation in Neuromuscular Patients: Review of Concerns, Beliefs, and Ethical Dilemmas
Abstract
Background: Noninvasive mechanical ventilation (NIV) is an effective treatment in patients with neuromuscular diseases (NMD) to improve symptoms, quality of life, and survival. Summary: NIV should be used early in the course of respiratory muscle involvement in NMD patients and its requirements may increase over time. Therefore, training on technical equipment at home and advice on problem solving are warranted. Remote monitoring of ventilator parameters using built-in ventilator software is recommended. Telemedicine may be helpful in reducing hospital admissions. Anticipatory planning and palliative care should be carried out to lessen the burden of care, to maintain or withdraw from NIV, and to guarantee the most respectful management in the last days of NMD patients’ life. Key Message: Long-term NIV is effective but challenging in NMD patients. Efforts should be made by health care providers in arranging a planned transition to home and end-of-life discussions for ventilator-assisted individuals and their families.
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Patients affected by neuromuscular disease and other chronic respiratory conditions may develop chronic respiratory failure and mechanical ventilation dependency.
“Patients affected by Neuromuscular Disease (NMD) and other chronic respiratory conditions may develop chronic respiratory failure (CRF) and mechanical ventilation dependency [1, 2].”
From Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19 (2023) · cites this paper as [2]
Improvements in intensive care and ventilators have allowed home invasive mechanical ventilation to become increasingly available for patients surviving life-threatening illnesses.
“The improvements in the intensive care setting with the lower complications of peri-tracheotomy procedures and the advances in the ventilators available have allowed Home Invasive Mechanical Ventilation (HIMV) to become increasingly available for patients surviving life-threatening illnesses.”
From Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19 (2023) · cites this paper as [2]
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References 148 · Cited by 46
- Authors
- Crimi, C., Pierucci, P., Carlucci, A., Cortegiani, A., & Gregoretti, C.
- Affiliations
- Azienda Ospedaliero Universitaria Policlinico "G.Rodolico - San Marco" (IT)
- Azienda Universitaria Ospedaliera Consorziale - Policlinico Bari (IT)
- Istituti Clinici Scientifici Maugeri (IT)
- Azienda Ospedaliera Universitaria Policlinico "Paolo Giaccone" di Palermo (IT)
- Venue
- Respiration
- Publisher
- S. Karger AG
- Published
- 2019
- Volume
- 97
- Issue
- 3
- Pages
- 185-196
- ISSN
- 0025-7931 (ISSN-L)
- 1423-0356
- OpenAlex
- W2912615449
- Cited by
- 46
- References
- 148
- Citations by year
- 2026: 1 · 2025: 4 · 2024: 3 · 2023: 7 · 2022: 6 · 2021: 13 · 2020: 8 · 2019: 3
- FWCI
- 1.27
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Respiration (publishedVersion)
- PubMed (publishedVersion)
- IrInSubria (University of Insubria) (submittedVersion)
- Nova Science Publishers (Nova Science Publishers, Inc.) (submittedVersion)
- Topics
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Respiratory Support and Mechanisms
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Keywords
- neuromuscular disorders, non-invasive ventilation, prolonged mechanical ventilation, telemedicine, palliative care, end-of-life discussions, anticipatory planning, ethical dilemmas, respiratory muscle involvement
- MeSH terms
- Follow-Up Studies, Humans, Neuromuscular Diseases, Quality of Life, Respiration, Artificial, Respiratory Insufficiency, Respiratory Therapy, Time Factors
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