J Korean Med Sci.  2020 Apr;35(16):e107. 10.3346/jkms.2020.35.e107.

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

• Lee J
• Kim GB
• Song MK
• Lee SY
• Kim MS
• Bae EJ

• KMID: 2500200
• DOI: http://doi.org/10.3346/jkms.2020.35.e107

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.

Keyword

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

Figure

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  Fig. 1 Time interval from the end-of-life care discussion to death in patients who hospitalized for ≥ 7 days (n = 90). Fifty-four patients (54/90, 60%) had end-of-life care discussions, and the time interval from the end-of-life care discussion to death was three days or less for 25 patients (25/54, 46.3%).

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