Frequency of Medical Futility and its Costs in Deceased Neonates with a Probable Diagnosis of Inherited Metabolic Disorder in Children’s Medical Center, Iran

Abstract

Background and purpose: Futile medical care is referred to any medical intervention or activity that bring no benefit to patients. The aim of this study was to evaluate the frequency of futile treatment and its cost in neonates with a probable diagnosis of inherited metabolic disorder. Materials and methods: In this cross-sectional study, hospitalization records of all admitted neonates in Children's Medical Center, Tehran were evaluated between 2013 and 2016. Demographic characteristics of the patients, duration of hospitalization, diagnostic and therapeutic management, and costs were investigated. Results: In the period studied, 1668 neonates were hospitalized of whom 20 (1.2%) died in neonatal intensive care unite with a probable diagnosis of inherited metabolic disorder. Six (30%) cases had deceased siblings. The total duration of hospitalization was 290 day-patient ranging from 20 hours to 37 days. The costs of hospitalization and medical treatments were calculated. Despite disagreement of eight (40%) parents with any futile treatments, the medical team discontinued the futile care in only one case who received palliative care. In other patients futile treatment continued before death. Conclusion: Futile medical treatments in neonates with inherited metabolic disorders are not uncommon. Lack of a comprehensive guideline about this issue leads to continuation of futile medical care.

Keywords

• medical futility
• inherited metabolic diseases
• newborn
• cost of illness