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

The importance of palliative care for patients with chronic heart failure is well-known. However, few studies on this topic have been reported in the pediatric field. Here, we present an 8-year-old girl diagnosed with a single ventricle who underwent the Glenn operation in infancy. She was hospitalized due to worsening heart failure. Because she was unresponsive to heart failure treatment, palliative care was indicated. We used the integrated palliative care outcome scale (IPOS) to perform a palliative care assessment. This provided an opportunity for the patient and her parents to express their feelings. We conducted multiple assessments to evaluate the effectiveness of therapeutic intervention. The scoring of some assessment items concerning physical, psychological, and spiritual issues differed among the patient, parents, and medical staff. For physical pain, the evaluation score of the medical staff was notably higher than that of the patient. This case study suggests that palliative care assessments using the IPOS are useful for medical staff to understand the needs of pediatric patients and their parents, although the patient’s background and personality must be taken into account when interpreting the self-assessment. To improve the palliative care system for pediatric heart failure from various perspectives, it is important to inform patients of their condition and assist them in decision-making, and the IPOS has the potential to support this.