The concept of ”benevolent injustice” in the newborn care

Abstract

Introduction. Neonatal medicine aims to reduce the mortality of infants. In the neonatal intensive care unit (NICU), babies receive high-quality healthcare that in many cases saves lives. Even compared with only a decade ago, fewer and fewer infants are dying. There is a little-recognized cohort of NICU patients whose outcomes are the result of a “benevolent injustice” in their healthcare course. Many of these infants are saved by technology; however, they are left both medically fragile and medically dependent and many of them are required to live in a medical facility. Many of these babies never get to go home with their parents. This emerging cohort of patients may evolve from the difficult ability to prognosticate outcomes for neonates, overtreatment, and acquiescing to parental demands for continued aggressive care. Aim of the study. Examination of the concept of benevolent injustice in the context of NICU patients. Materials and methods. Review of the scientific literature and integration of available qualitative empirical data. Results. There are 3 recurrent themes that emerge in the literature as to how this cohort of NICU patients evolves: poor prognostication, overtreatment, and acquiescing to parental demands for continued aggressive care. Neonatologists and parents are attempting to benevolently make decisions in neonates’ best interests, which, unfortunately, can be quite difficult when predicting the potential outcomes. Whether by poor prognostication or by over treating neonates to acquiesce to parental demands, these actions carry with them the potential consequence of violating the neonate’s rights to a range of opportunities. Neonates should have the right or opportunity to interact and to be in relationship with their parents, and these are opportunities that should be protected rather than violated by health-care. If their conditions are life-limiting or death is near, they should be allowed to die with dignity in a loving and symptom-free manner. Many neonates are left neurologically impaired and developmentally delayed where it may never be possible to interact in a meaningful way. Conclusions. The reality of the NICU is that the same technology that is used to save a neonate’s life may also be the cause of severe comorbidities and life-altering, adverse side effects.