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End-of-Life Care of Hospitalized Children with Advanced Heart Disease

Journal of Korean Medical Science 2020년 35권 16호 p.107 ~ 107
이주원 ( Lee Joo-won ) - Seoul National University College of Medicine Seoul National University Children’s Hospital Department of Pediatrics

김기범 ( Kim Gi-Beom ) - Seoul National University College of Medicine Seoul National University Children’s Hospital Department of Pediatrics
송미경 ( Song Mi-Kyoung ) - Seoul National University College of Medicine Seoul National University Children’s Hospital Department of Pediatrics
이상윤 ( Lee Sang-Yun ) - Seoul National University College of Medicine Seoul National University Children’s Hospital Department of Pediatrics
김민선 ( Kim Min-Sun ) - Seoul National University College of Medicine Seoul National University Children’s Hospital Department of Pediatrics
배은정 ( Bae Eun-Jung ) - Seoul National University College of Medicine Seoul National University Children’s Hospital Department of Pediatrics

Abstract


Background: Despite improvements in palliative care for critically ill children, the characteristics of end-of-life care for pediatric patients with advanced heart disease are not well-known. We investigated these characteristics among hospitalized children with advanced heart disease in a tertiary referral center in Korea.

Methods: We retrospectively reviewed the records of 136 patients with advanced heart disease who died in our pediatric department from January 2006 through December 2013.

Results: The median age of patients at death was 10.0 months (range 1 day?28.3 years). The median duration of the final hospitalization was 16.5 days (range 1?690 days). Most patients (94.1%) died in the intensive care unit and had received mechanical ventilation (89.7%) and inotropic agents (91.2%) within 24 hours of death. The parents of 74 patients (54.4%) had an end-of-life care discussion with their physician, and the length of stay of these patients in the intensive care unit and in hospital was longer. Of the 90 patients who had been hospitalized for 7 days or more, the parents of 54 patients (60%) had a documented end-of-life care discussion. The time interval from the end-of-life care discussion to death was 3 days or less for 25 patients.

Conclusion: Children dying of advanced heart disease receive intensive treatment at the end of life. Discussions regarding end-of-life issues are often postponed until immediately prior to death. A pediatric palliative care program must be implemented to improve the quality of death in pediatric patients with heart disease.

키워드

Terminal Care; Palliative Care; Palliative Medicine; Heart Diseases; Child
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