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Long-term ventilator-assisted children in Japan: a national survey
Y Sakakihara1, T Yamanaka, M Kajii
1Department of Pediatrics, University of Tokyo, Japan.
Insights
The first Japanese survey on long-term ventilator-assisted children reveals challenges in home care despite improved patient prognoses. Ethical and medical issues arise from prolonged life support, particularly for conditions like Werdnig-Hoffmann disease.
Area of Science:
- Pediatrics
- Medical Technology
- Bioethics
Background:
- Improved technology and care have enhanced quality of life and prognosis for long-term ventilator-assisted patients.
- The increasing number of these patients presents significant economic, ethical, and medical challenges.
Purpose of the Study:
- To conduct the first nationwide survey on the status of long-term ventilator-assisted children in Japan.
- To assess the magnitude of economic, ethical, and medical problems associated with long-term mechanical ventilation in pediatric patients.
Main Methods:
- A nationwide survey was conducted using questionnaires mailed to 2524 pediatric departments in Japanese hospitals with over 100 beds.
- Data was collected on patients ventilated for more than one month, with a focus on 434 patients under 20 years ventilated for over three months.
Main Results:
- 282 hospitals reported 567 patients ventilated for over a month; 434 were under 20 and ventilated for over three months.
- Common underlying disorders included myopathies, hypoxic-ischemic encephalopathy, and spinal muscular atrophy type 1.
- Only 61 of the 434 patients received home ventilation, despite pediatricians viewing it as suitable.
Conclusions:
- Home care for chronic ventilator patients in Japan is hindered by a lack of systemic and regulatory support.
- Prolonging life for patients with conditions like Werdnig-Hoffmann disease raises ethical and medical questions, differing from practices in Western countries.
Abstract:
Owing to improved technology and care for patients who need mechanical ventilation, the quality of life as well as the prognosis for long-term ventilator-assisted patients has improved significantly in recent years. However, the increased number of these patients has raised economic, ethical and medical problems. In order to assess the magnitude of these problems, we conducted the first nationwide survey on the status of long-term ventilator-assisted children in Japan. Questionnaires were mailed to 2524 pediatric departments at hospitals in Japan with more than 100 beds. At the time of the survey, 282 hospitals had 567 patients who had been ventilated for more than a month. Among these patients, 434 were younger than 20 years and had been ventilated for more than 3 months. The most common basic disorders were: various myopathies (n = 65), hypoxic-ischemic encephalopathy (n = 60), spinal muscular atrophy type 1 (Werdnig-Hoffmann disease, n = 55), chronic lung disorders of prematurity (n = 21), Ondine's curse (n = 22), drowning (n = 17) and congenital heart diseases (n = 16). Of these 434 patients, only 61 were ventilated at home. Although home care was considered suitable for chronic ventilator patients by many pediatricians who responded to the survey, its realization has been hampered by the lack of a system and regulations to support it. The fact that many pediatricians in Japan have actively prolonged the life of Werdnig-Hoffmann patients, from whom aggressive life saving measures have been withheld in most Western countries, has raised ethical as well as medical issues.