日本小児循環器学会雑誌 Pediatric Cardiology and Cardiac Surgery

Background: With the improved outcomes of congenital heart diseases, the number of patients dying from heart failure in adulthood is increasing. Palliative care for chronic heart failure is becoming increasingly important, but only few studies have reported on pediatric palliative care for patients with heart failure.

Methods: Pediatric cardiac patients aged ＞10 years who died between 2000 and 2020 were included. The characteristics of the patients who died from heart failure, including their clinical symptoms, medications, ventilators, multi-professional conferences, informed consent, psychologist intervention, and chest compressions, were studied retrospectively.

Results: Seven patients died from heart failure, which was the most common cause of death. The median age at the time of death from heart failure was 15 years (range, 10–24 years). Multi-professional palliative conferences were held for two cases (29％), and informed consent was provided for one case. Sedation drugs were used in five patients (71％), but opioids were not used in any of the cases except for the orally intubated patients. Dyspnea was present in almost all the patients.

Conclusion: Palliative care for patients with pediatric heart failure is still developing, and a multi-professional palliative care team and system must be established.