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[Life-sustaining mechanical ventilation care for children with progressive or degenerative brain disorders]
1Department of Child Neurology, National Center Hospital for Mental Nervous and Muscular Disorders, National Center of Neurology and Psychiatry, Kodaira, Tokyo.
Insights
Life-sustaining mechanical ventilation can extend survival for patients with progressive brain disorders. The study highlights the need for guidelines on its use in Japan, especially for children.
Area of Science:
- Neurology
- Pulmonology
- Medical Ethics
Context:
- Progressive and degenerative brain disorders often lead to chronic respiratory insufficiency.
- Current treatment practices in Japan lack specific guidelines for managing these conditions in children.
- Mechanical ventilation offers a life-sustaining option, even in advanced stages.
Purpose:
- To evaluate the impact of life-sustaining mechanical ventilation on survival rates in patients with progressive brain disorders.
- To identify the challenges faced by clinicians in Japan regarding medical indications and decision-making for these patients.
- To advocate for the development of clinical guidelines for managing pediatric patients with progressive brain disorders.
Summary:
- Over 10 years, 25 patients with chronic respiratory insufficiency from progressive brain disorders were treated.
- Fifteen patients survived, with 12 receiving mechanical ventilation, indicating improved longevity.
- Ten patients died, five of whom had received mechanical ventilation.
Impact:
- Life-sustaining mechanical ventilation can significantly prolong survival in patients with terminal progressive brain disorders.
- The absence of clear guidelines in Japan creates decision-making difficulties for healthcare providers.
- Establishing a guideline is crucial for ethical and effective patient care in Japan.
Abstract:
In the past 10 years, we have treated 25 patients with chronic respiratory insufficiency due to a progressive or degenerative brain disorder. Ten patients died and the other 15 survived. Five of the former and 12 of the latter received life-sustaining mechanical ventilation care. Even in the terminal stage of progressive or degenerative brain disorders, patients can survive for a longer period than previously, if life-sustaining mechanical ventilation care is given. In Japan we do not have a guideline for medical indication or decision-making for children with progressive or degenerative brain disorders. Whenever we see such patients, we have great difficulty in making a decision. It may therefore be necessary to discuss whether we should have such a guideline.